Okay okay, so the HG world rallied! And I’m not a quitter!

Thank you all for your kind messages of support and appreciation for my work. I’ll carry on for now!

I’ve come up with a Pay It Forward initiative so that we actually can provide some books for free to those who need them the most, but first I want to explore some of the barriers to involvement which I know all too well within the HG world.

One of the biggest challenges we face when trying to raise awareness of Hyperemesis Gravidarum is that so many of our women are deeply traumatised by their experience and can’t face fundraisers in which they have to discuss the condition with people they are trying to get donations from. Many of our women plan never to be pregnant again, even though plenty would desperately love more children. So they feel they need to leave the HG world behind and can’t face getting involved or doing fundraising events or activities.

Some women still harbour feelings of embarrassment about the condition as they were made to feel so shameful during the pregnancy – “You’re just pregnant you know” “you’re bringing it on yourself by not thinking positively”, “Your selfish to be taking medication in pregnancy – think of your baby”, “Your just not one of life’s copers are you”… all fairly standard comments for Hyperemesis sufferers to encounter during pregnancy which have a tenacious and toxic effect on our self-esteem and leave us feeling broken and humiliated.

I get that… I really do. But… how are we going to change the future for our daughters and granddaughters if we don’t put our foot down and say ENOUGH!

We are not weak

We are not selfish

We are not negative

We got an illness

It was an horrendous battle to get through each day at what should have been a happy and amazing experience growing our babies

We endured intense suffering for months on end, often with little to no understanding or support from those around us

We experienced the humiliation of other people accusing us of weak and pathetic

We are mocked by the public and belittled in the media

But we fought for our babies and our lives

We made difficult decisions, weighing up risks and seeking evidence to help us

We had to learn for ourselves as our doctors didn’t know

We had to defend our rights to life and health and reproduction

We didn’t all win…

And those of us who didn’t make it through faced grief and guilt and yet more battles

So… we must unite, we must stand tall and proud for the battles we’ve fought. We must speak up and defend our sisters. So our daughters can say this:

I got an illness

I received compassion and support

I was given treatment

It was still hard but not as hard as it was for our mothers

We all won

Please – Join me in this, Pay it Forward. I have set up a system so that people can donate my books and HG packs to women who contact the charity via the helpline, the volunteer network or through our social media. You pay for the book online and it stays in our office until a women in need is identified, then we post it out. Please consider donating what you can and remember that the income from the books support the HG charities.

For those of you who don’t feel able to speak, I understand that, I really truly do, but please consider donating what you can and supporting in other ways. When you think of charity… think of HG! Pregnancy Sickness Support in the UK and the International HER Foundation… both are run on absolute shoestrings, driven forward by volunteers: dedicated survivors. Without support from the women they support they will be resources which are lost.

Click here to Pay It Forward!

And don't forget to share and encourage others to do the same!

Last weekend I was at the Britmums conference and I attended a seminar entitled “Shouting Back: Women’s voices loud, proud & online”. In it we heard how easy it is [for celebrities like Katy Hill] to “make a difference” just by tweeting occasionally. At the end I had the opportunity to ask a question of the esteemed panel and I so I explained what I do and asked if they had any tips about keeping motivated for those of us trying to raise awareness day in and day out online  when it feels like our voices are just lost. I was helpfully informed by the aforementioned celeb that what I ought to do to raise awareness about hyperemesis gravidarum is “write a blog post about your experience of the condition and how it’s the thing Kate Middleton suffered with…. And then, like… tweet it!”, Easy!!!

Well, I left the seminar utterly demotivated, insulted and frankly enraged but as the rest of the conference went on and I attended other, better, seminars I felt my mojo return and by the end of the conference I was enthusiastic about returning home to further my awareness raising blog efforts and launch my kids book.

But then, on Tuesday, I launched my book. And it flopped… spectacularly.

It seems that I have utterly misjudged the HG community and the market for women suffering the condition. The market research I had done before launch had reassured me that there was demand and people would buy it… but they didn’t. On the day of launch I sold an incredible 3 books. Just 3!! Despite a strategic marketing effort, press releases, targeted mailing lists and direct access to  the bulk of the world’s HG online community.

And then the community turned on me… a post was deleted because it was deemed as “selling”. People questioned my motives and how much money was going to the charities. There were questions over why it wasn’t free for women with HG.

And I cried. And cried and cried… then I had a margarita cocktail and some prosecco and cried some more.

And then I decided I was done and would wave goodbye to the HG world.

But that was 2 days ago and I’ve calmed down a little since, although my eyes are still puffy from tears. I may still carry on blogging, or I may not… I haven’t decided.

I probably ought to cut my losses and get an actual job to maintain my sense of self-worth and earn some money. I might return to practice nursing or maybe look at the district. But I so wanted to generate a modest income from this blog in order to keep it going and to be able to keep funding all the work I do for hyperemesis improvement around the UK and the world – I don’t get paid remember! I invested heavily in producing two books which I genuinely thought women wanted and would help them.  But as I discovered…

The HG Community want me for free!

It’s ironic isn’t it… I’ve spent so much of my time making sure women with HG are not alone, yet it’s the HG community which has left me feeling alone and abandoned.

I do get messages of thanks and support and hope from women who I’ve helped and I deeply appreciate them. I print most of them off and look at them to remind myself why I am putting so much personal time, money, blood sweat and tears into trying to improve care and treatment for families with hyperemesis. But the attacks are also frequent, the accusations that we’re not doing enough, the constant stream of spam, the constant frustration that there are people working against us, the constant defence I have up for our community. And my voice feels weak… I don’t have enough support from the women I have supported and it’s gutting.

Right, pity party over…. I’ve said my piece. I’ll cheer up in a few days I expect and get a renewed vigour to start flogging these bloody books!!

HG mum, Cheryl Arumugum contacted me a few weeks ago in order to nominate someone special as her HG hero. In the past my HG Hero posts have featured husbands, doctors, children and other people directly supporting women during a hyperemesis pregnancy. But HG heroes aren't just those people who help us practically at our most sick… for many women the recovery from hyperemesis gravidarum can be a long and exhausting road and it is during that recovery that we may meet people who can make the world of difference! Here Cheryl pays tribute to her HG Hero Sandra Zocher who, through kindness, support and pure fun has helped Cheryl regain her confidence and vigour for life which HG had been holding prisoner....

Sandra Zocher - HG Hero

For a long time after my pregnancy I couldn't look HG in the face, even going on the Pregnancy Sickness Support site was traumatic as it brought back all the awful memories that I hadn’t been able to process yet. I think it took me about 9 months to a year to recover physically from the hyperemesis and emergency caesarean section but the mental recovery has taken a lot longer.

Shortly after my daughter was born I remember the health visitor asking whether I was feeling depressed and I was thinking "Are you kidding? I don't feel sick for the first time in nine months, I can eat most foods again and I can taste and enjoy them. I am happy!" Looking back I would still say that was true but what I didn't have then and am only fully regaining now, 26 months later, is my confidence and properly feeling like myself and being genuinely, all the way through my body happy. I'm not sure if that is a very good description but I remember when my daughter was 5 months we went to California for my best friend's wedding. The band were playing, I was dancing, which is my favourite hobby, with my husband, everything was great and my husband was so happy and I was smiling and willing myself to feel that happiness but I just felt shaky and empty. Like the happiness was very superficial and it worried me.

When I had hyperemesis I had to work from home following my hospital admission for the rest of the 9 months. I couldn't prepare my own food or do the essential chores around the house… you've heard it all before, it’s a common hyperemesis experience. I was ridiculed for my spit bowl, told I should stop taking the cyclizine as it would harm the baby and experienced all the common stigmatising misconceptions from everyone around me. Then I had an emergency c section and found it really hard to recover from, I suppose because my body was so weakened from the HG. Again, there were comments and looks making me feel that I was pathetic for not having healed yet. I felt that I lost my voice with hyperemesis and ironically a few days after I gave birth I did lose my voice and did not regain it for 5 months! The nurse who took off my pressure dressing had left it too long after I had had a shower, and when she ripped it off I screamed in agony, it must have bust a vocal chord.

However, it was very demonstrative of the fact that I felt that I had lost my voice metaphorically as well. I didn't have confidence in my body any more. Not so much in terms of weight but of my body doing what I wanted it to do. For example, I wanted to eat healthily and continue my sport in my pregnancy and wanted to have medication free labour. None of those things worked out and it felt like my body was working against me, it had let me down.

I lost so much confidence and was so worn down by the experience (including what seems to be irreparable damage to a friendship) that starting new things was far more daunting than it was pre-pregnancy, I worried about meeting new people and being judged. The first group that I joined was a baby massage group and the lady who ran it, Kati Armstrong, was wonderful. She was always warm and friendly and smiling. I learnt to smile again myself and met some like-minded people. I think the saying of "Smile, you never know how much better you might make a person's day" applied tenfold to me post hyperemesis.

I gradually built up my physical strength through walking and when my daughter was 15 months finally felt able to go back to my chiropractor to get my back fixed so that I could be in less pain and start doing more strenuous exercise. I was really nervous of being touched. I’m not sure whether that was a hangover from HG or the c section but luckily Dr Griffiths, who treated me, had an amazing way of making it all be ok.

I had tried a salsa class in my town but it was poorly attended and not my level. There are not many dance
classes in my town so I thought maybe I would try Zumba to keep me fit whilst I try to find something more suitable. A friend said she had tried Sandra Zocher's class and that it was really fun so I gave it a whirl. I had done Zumba classes before and got bored after a few weeks, (even with one run by a Strictly pro!) so I
didn’t have high hopes. But Sandra puts so much love and fun and laughter into her classes that you can't help but get hooked. She is always smiling and so full of fun that even before you start the class, it is like you have been given a boost and you start to grin. She was sensitive to my back problems and to recuperating after the c section and she just helped me to learn to let go and to trust my body again. I faltered over the steps initially but as I began to loosen up, my body started finding the right moves and it started to sing again. Dancing makes me feel alive and Sandra brought that back to me.

Sandra recently posted "It doesn't matter what exercise you do as long as you love it" and I think that is true. It even applies to any hobby, not just exercise. I’ve regained so much confidence and happiness thanks to Sandra’s Zumba class. So my recommendation would be whatever hobby it is that you love, try and get back into it as soon as possible post HG as hopefully it will help you to feel good again.

Spewing Mummy:

This story highlights that the key to supporting women with hyperemesis is plain and simple kindness! So much of Cheryl's confidence had been robbed, not by the condition it's self, but by the insensitive and cruel comments from other people. Society's expectations of her body to reproduce, her experience of a c-section, her ability to maintain her house and work meant that her experience of those things eroded her self worth because they didn't match the social norms. Sandra, just by being non-judgemental, positive and fun, gave Cheryl back the ability to see through the fog and enjoy life again. And for that she is an HG Hero! 

Since the hugely successful launch of my book on hyperemesis gravidarum last year I’ve been slogging away on another little project aimed at helping families battling the condition with children in tow.

How to be an HG Hero – helping children understand hyperemesis gravidarum, does what it says on the tin… aimed at pre-school and school aged children the book enables them to understand what is happening in their world and how they can take a proactive approach as a member of the family “team”.

Following a little child and his mum through an HG pregnancy it offers explanations of what is happening, enables discussion of concerns and worries and makes positive suggestions for children (and relatives) to help the situation.

At the back there are 2 copies of my HG Hero Certificates which you can cut out and present to your child, husband

The book is available for pre-order via my website shop now and copies ordered will be received on 23-24^th June

I really hope you enjoy it and find it helpful, positive and inspirational. Don't forget to tell other people about it!

Thanks again for all your support of my blog and book over the last few years.

Click here to Pre-Order!

My Dear Readers,

The time has come… I must generate income in order to help fund the Hyperemesis Improvement Movement. I already donate vast amounts of money to the UK effort (not to mention working full time for free supporting women and running PSS) and I would like to be able to do more!

For that to happen I need to start selling my books myself so I’ve decided I’m not going to sell the upcoming kids book via Amazon as frankly they are fleecing me and bleeding me dry. Rather than lining the pockets of Amazon execs we need to fund the research efforts and service developments across the UK.

So I’m opening up shop! I’m selling my books directly and producing other products which I sincerely hope will make women’s lives with HG a little more comfortable. None of the things I intend to sell will claim to actually improve symptoms but it’s my hope that they will help women feel a little less alone and will offer practical help to women house or bed bound by the condition.

But here’s the thing… I need your advice first. I need you all to tell me what you think of my ideas and what items you do and don’t like!

Please can you take a few minutes to fill in this simple survey so I can gauge the market and if you’re part of any HG groups online then ask the women in there to fill it in too.

In the meantime, if you haven't bought my book yet but would like to then please click here to buy it rather than from Amazon.

Thanks lovelies

Spewing Mummy x

Fill in the Survey Here

Or if you don't want to take the survey but would like to get an email when my kids book is released then please fill in your email here:

1. You have a cupboard full of antiemetics and know which one to take for every possible “type” of nausea
    
2. You judge food by what it's like coming back out – spaghetti bolognaise is the WORST!
    
3. You can play any game on your phone without moving more then one finger muscle
    
4. You can accurately judge not just the number of millilitres in a cup but how many mls you just wee'd… that’s quite a skill!
    
5. You can list more forms of ginger food and beverages than the average person thought could possibly exist.
    

6. Yet even the thought of ginger makes you want to punch that flipping ginger in it’s bastard gingery face
    
7. You and your partner have a mental map of vomit sites around your local area which can be used in conversation ie. “you know, the place near the co-op I threw up” or “the place on the A30 we used to pull in to vom”
    
8. When you’re in a public place you mentally plan the best direction to run should you need to hurl and you know where all the nearest public loos are
    
9. But given that you have a handbag full of possible vomit receptacles a loo isn’t really essential
    
10. You get a positive pregnancy test and you pack your hospital bag that day
     
11. You judge the quality of new mixing bowls by their potential for receiving sick without splash back
     
12. You don’t understand what all the fuss of labour is about – it’s a doddle compare to the nine months before it!
     
13. Your partner has to eat their dinner in the garden, in the snow, in January, because the smell in the house might lead to another hospital admission.
     
14. You thought it couldn’t possibly get any worse… then you pee’d your pants whilst spewing and realised, oh yes… it can still get worse…

If you’re suffering now and would like online support from others then please check out the Pregnancy Sickness Support Forum for threads like this and other supportive chat.

For USA and International forum support check out the HER Foundation's forum.

Oh and if you like my blog I’d really appreciate a nomination for the MADs by 5.30pm today… Blog of the Year category and Best Writer are the only categories I fit as I’ve not been pregnant in the last year. Thanks!

“It’s fashionable now the Duchess has had it, they all want it”

Oh yes, and if the Duchess broke her leg the mothers of Britain would head to the nearest play part and hurl themselves off the climbing frame to sport a matching plaster cast. Obviously.

“Oh I had that but I just got on with it, I didn’t have to go to hospital, I nibbled ginger biscuits”

It’s a bit like….

“You’ve just got out of hospital for puemonia? Oh for goodness sake… I had a cold the other day and I just drank some hot honey and lemon and bought those soft Kleenex with aloe vera… you should try that next time instead of IV antibiotics!”

“You shouldn’t take that medication while you’re pregnant… haven’t you heard of Thalidomide? Your baby will be deformed!”

And there was me thinking medical knowledge and research had moved on in the last 60 years. So while we’re in the process of eschewing all medical treatment in pregnancy, such as anti-biotics for life threatening infections, because once 60 years ago one drug caused a problem, lets also decline the other medical advances in the last 60 years… vaccinations, chemotherapy, safe anaesthetics, heart and brain surgery, the ability to not die from thousands of conditions… ya know all that stuff.

“Pregnancy isn’t an illness… you shouldn’t make such a fuss”

Yeah pregnancy isn’t an illness – it’s a whole other level of risk taking and death dicing for the sake of our drive to reproduce… Even now around the world an estimated 275,000 women killed each year in childbirth and pregnancy, although the vast majority of those are in the developing world today it’s really not that long since 1 in 20 women would die during pregnancy and childbirth. Hyperemesis gravidarum was the leading cause for early pregnancy deaths and there have been UK deaths from complications of hyperemesis gravidarum in the last 10 years.

“It’s harder on the poor men when their wives have hyperemesis gravidarum”

Find me a man who has witnessed his wife suffer this condition while carrying his offspring that agrees with this statement… go on, I dare you.

“Well I’ve never heard of it… it must be in your head”

Oh yeah cos you’ve heard of every medical condition to have ever been documented – what are you, wiki-fucking-pedia???

“Morning sickness is over at 12 weeks… it never lasts longer than that so you’re either some sort of freak or making it up”

Um, for the 1 millionth time, IT’S NOT MORNING SICKNESS, it’s sort of vaguely similar in that morning sickness is like a very very very mild version of hyperemesis gravidarum and 2 of the symptoms (nausea and vomiting) and cause (pregnancy) are common to both… like a cold is a very very very mild version of the flu, they share similar symptoms such as a runny nose, sneezing and fever and both are caused by virus’s. Or like how spraining your ankle is like a very very very mild version of breaking your ankle, it shares pain in the ankle region as a common symptom and both are caused by injury to the area.

Tell me what other things you've heard people say confidentially by clicking here or publicly in the comments below or very publicly on my Facebook Page

In case you didn’t notice this week saw a vast amount of coverage in the mainstream press about hyperemesis and how women in the UK are being failed by misinformation and prejudice about the condition. It even made the front page of The Times. The press came about from the release of the report “I Couldn’t Survive Another Day” released by Pregnancy Sickness Support (PSS) and British Pregnancy Advisory Service (bpas), which I authored along with the wonderful Clare Murphy at bpas. It was a report of the findings from the survey which many of my readers took a couple of months ago via this blog and the results were overwhelming.

The process of analysing the survey results and writing the report was, frankly, harrowing. Although with my experience running the UK helpline for the condition they were also very representative of women’s experiences and so shedding public light on the issue has been valuable beyond belief. I am so, so proud of all the women who took part in the survey, who opened their hearts and discussed the most distressing part of their lives to date, who bared their heartache and grief so that women now and in the future would not have to make the most harrowing choices.

By taking part in that survey those women and their lost babies have helped make things better. We have raised more awareness and changed more opinions than I could have hoped for. Okay there has been a couple of anti-choice articles making out like women terminate due to “morning sickness” but the VAST majority of the coverage has explained exactly how horrendous hyperemesis gravidarum really is. They’ve describe the symptoms and risks in a sensitive and accurate way for, perhaps, the first time ever in the major broadsheets (who, even when explaining the Duchess’s condition underplayed the whole thing). They’ve sensitively approached the issue of medication and why it is being withheld and, personally, I’ve felt that the whole coverage has been an honour to the children whose potential for life was stolen by this horrendous condition.

Sadly, even this week on the helpline, despite the national mainstream coverage, we have still had two women whose doctors are refusing treatment because “nothing is safe in early pregnancy” and they are reaching a point where they feel termination may be the only option due to needing to work and look after other children. But weeks like this will start to change things and a few years from now, I predict, that we won’t even have need for a helpline as all women will have consistent access to evidence based treatments, without a fight.

So to those ladies, many of whom I call my friends, who lost their babies and shared their stories… THANK YOU. From the bottom of my heart, thank you. And not just from me, but from all the other women who didn’t feel able to speak out and from their babies, from the women now going through hyperemesis now and their babies and from our daughters and granddaughters and our sisters and nieces, from our husbands and sons… thank you, thank you, thank you. You brave ladies have made a difference.

As you know, along with the wonderful Tony, I answer a lot of the Pregnancy Sickness Support helpline calls that come through from desperately ill women needing help, information and support. This week I had to have a really difficult conversation with a young woman who wants to be a mum and indeed is pregnant with a baby they have been trying for some months to conceive. The problem is she suffers from severe hyperemesis gravidarum, a condition which already lost her a baby a year ago when she had exhausted the treatment options obtainable without a fight. Sadly she didn't know about steroids at the time and she had no idea what the condition was she was battling, no support or information from healthcare professionals and she was scared.

Now at 4 weeks pregnant the nausea was starting again.

I think she had hoped that the helpline would provide information about a cure or reassure her that she wouldn't suffer this time, which, albeit as gently as possible, I basically crushed into smithereens. Hopes of IV at home rather than the day case re-hydration she had last time were crushed as I explained that most women consider IV's as a day case a significant improvement on admission and IV at home is rare across the UK.

As I went on I could feel the reality of the situation dawning on her... unfortunately you can't have a normal pregnancy like other women. Unfortunately you suffer a condition called hyperemesis gravidarum and if you want to be a mum you are going to have to battle this enormous beast.

What about work? Realistically you'll be signed off for sometime... good news is your employer can not discriminate, bad news is, many do regardless.

I tried to put it in perspective: Some couples can't conceive naturally and for them to have a baby they need to go through, potentially, multiple rounds of IVF. That's hugely expensive and very stressful. Some couples re-mortgage their homes to afford it or sell their cars or other assets. Other couples have problems with long term conditions prior to pregnancy which can make pregnancy a real battle, lupus and other auto-immune disorders, mental health conditions, physical disabilities and so on. You have hyperemesis gravidarum – that's your load to bear and although there is treatment and support which can make the road you are walking a little easier we can't lift the load from your shoulders – there is no cure and there is no short cut to the end.

Your partner can bear a little weight by helping to advocate for you, fighting for treatments and defending your honour, but they can't take it all for you. You must bear the bulk. The constant unrelenting nausea, the vomiting day and night. The long lonely hours. The warped smells and dripping saliva. The crushing pain of malnutrition and cracking feeling of dehydration. The bed sores on your hips and scars from IVs... they are yours alone to soldier through. Yours and your baby's. These will be you war wounds – there will be mental and physical scars from this battle, less if you get good treatment and start early medication but even then... you will never forget.

You want to be a mum? Here it is, this is your challenge. I'm not going to dress it up, I'm not going to bullshit you about it all being better at 12 weeks or easily fixed with a ginger-nut biscuit. I haven't got a quick fix or natural remedy. It is one of the hardest things you will ever go through and it will fundamentally change you as a person. But it is worth it, I promise. When you reach the other side you will have new knowledge and insight, you will have grown not only a baby but a new part of you, a badge of honour. An internal medal that says “I survived”.

Because you can survive this and it will end. Take it one day at a time. Take medication. Accept help. Seek support.

Here is the information you need to survive... here is the treatment plans and coping strategies... here is a volunteer to hold your hand... and here is the 2 tonne anvil of HG you have to climb up that mountain with. Your baby is at the top.

This week saw an episode of Call the Midwife in which a women who was suffering Hyperemesis Gravidarum was given a drug called Thalidomide. The programme is set in the 1960's and while the women suffering portrayed the horrors of hyperemesis very well, the miraculous cure of the drug was perhaps a little overstated... I don't think even Thalidomide had that much of a wondrous effect on full blown HG! Anyway, that's by the by... We all know the devastating effects Thalidomide caused when taken between days 35-50 of pregnancy. It must be historically one of the most Teratogenic drugs (a medication which causes abnormalities in a developing foetus) ever to have been given in pregnancy and it is thanks to this the danger of using treatments without proper analysis and adequate testing was exposed and no longer happens.

The damage Thalidomide caused for the victims at the time is well documented and the history and mechanisms of the drug are understood. There is thankfully support for the people affected by it although there is still a long way to go in getting compensation for everyone affected, particularly in some countries such as Ireland.

However, Thalidomide also, albeit indirectly, damaged another massive group of people and still does. Even today it's legacy results in massive foetal loss and significant morbidity for pregnant women suffering, not just hyperemesis gravidarum but a whole host of medical condition in pregnancy. It reduced illnesses and disease, even life-threatening ones, experienced in pregnancy into states which must be borne regardless of risk to mum and baby.

Fear is the problem. Fear and a lack of understanding of the risks of untreated hyperemesis gravidarum.

Much like the fear of many diseases which are vaccinated against has waned since our children no longer die of them, fear of HG has diminished since the introduction of IV fluids. It's now incredibly rare for women to die from HG, but if Call the Midwife was set in the 1920's the character would simply have died, end of storyline.

Thalidomide was given at a time when people didn't realise that things the mother ingested could have an impact on the foetus. In the same way that pregnant women were regularly x-rayed before we realised the x-rays harmed the foetus (EDIT: See comment below by Margaret O'Hara). And is was normal for women to smoke during pregnancy before we discovered the harm it causes. Eating too much liver can cause problems and regular alcohol consumption is harmful.

We've also discovered that a lot of things are absolutely fine in pregnancy: eating strawberries won't cause birth marks; raising your arms above your head doesn't cause the cord to wrap around the foetus's neck; it's okay to eat peanuts (unless you're allergic obviously)... and you know what? Lots of medications are just fine to take in pregnancy!!!

You see we discover new things all the time thanks to science and research. And ironically, it's thanks to Thalidomide that we now look into whether or not a medication is safe in pregnancy, animal studies are done and data is compiled ensuring detrimental effects would be rapidly picked up... this is the positive legacy of the drug that caused so much harm.

Now I'm not saying all medications are fine... there are a number of medications which are absolutely not okay and can increase the risk of abnormalities (Thalidomide being one of them, it's used to treat a number of conditions worldwide today). But just because one medication that was used for nausea and vomiting in pregnancy caused a problem doesn't mean that ALL anti-emetics cause harm.

What we need is information about the risks so that informed consent can be given for women to make choices. There is already a lot of information available about the common anti-emetics used, just because an individual doctor hasn't hear of it's use doesn't mean it's not common or there isn't evidence of it's safety.

In the last week alone I've had the following comments from women who called the Pregnancy Sickness Support helpline:

“In my last pregnancy, after I got out of hospital, my GP told me that the medication they gave me was harming my baby. He took it me off it. I haven't been to a doctor this time as I'm scared”

“My doctor told me nothing is safe to take”

“I asked about steroids but they said they carry too many risks... what are the risk exactly?”

All of these women were suffering shocking levels of morbidity including significant weight loss, dehydration and malnutrition from months of suffering extreme levels of vomiting and constant vomiting. They were all on the brink of depression, two were considering termination as their jobs and homes were at risk. One was beginning to experience relationship problems and all were experiencing high levels of stress.

You see women do not resort to taking medication in pregnancy lightly. In my, fairly extensive experience, I find women are willing to tolerate extreme levels of sickness, which if they were not pregnant would see them in hospital within 48 hours. Yet because they are pregnant it can be weeks, months or never even, that their doctor treats appropriately.

So lets look at the known risks to the foetus for the following medications:

Cyclizine and Promethazine (Avomine) are first line medications which have been around since the time of the Thalidomide disaster and are part of the same group of medications (H1 receptor antagonist antihistamines) which is the main ingredient in a drug licensed for pregnancy nausea and vomiting in the USA and Canada. There is no evidence they cause any harm to the growing foetus at any point in pregnancy and there is lots of evidence that they do not cause any harm.

The next line of medication is metoclopramide, Prochlorperazine (Stemetil or Buccastem), and domperidone (motilium). Again, these medications have been used since the time of Thalidomide without any evidence of harm caused to the foetus and plenty of evidence that no harm is caused.

Ondansetron (Zofran) has been around for 17 years now so can't really be described as “new and unknown” anymore. Trials of high doses in pregnant animals has shown no problems in the foetus's and a study of over 600,000 pregnancies in Denmark found that ondansetron during pregnancy was not associated with a significantly increased risk of birth defects. Despite strong evidence for it's safety I have recently noticed a number of law firms are looking to make some money claiming ondansetron is associated with an increased risk of heart defects. Ironically, in the long term such a law suit could have the opposite effect and result in the drug being licensed if it's found not to cause any harm.

Finally, the current last line of treatment available in the UK is steroids. Steroids are frequently refused for women with hyperemesis and many women are made to feel ashamed for even asking about them. “Goodness no way! Steroids will harm your baby, why would you want to risk your baby?” was a recent comment one woman received.

Steroids are regularly prescribed in pregnancy for the following conditions, to name but a few:

• Rheumatoid arthritis
• Ulcerative Colitis
• Lupus
• Asthma
• Crohn's disease
• Allergies
• Recurrent miscarriage

Interestingly, women discussing taking steroids for those conditions on online forums talk about how their doctor “persuaded them it was safe” and “explained the risks verses benefits” and “said there were no known risks”. Overwhelmingly the doctors are reassuring about their use. Yet women on hyperemesis forums report “my doctor refused steroids and said my only option is termination” or “I asked about steroids but he said they aren't safe”.

So what are the risks? Well, a few studies have shown a possible increased risk of cleft palette if taken early in pregnancy. By increased risk we are talking an increase from 1 in 700 to 1.3 in 700. More recent studies, such as this one from Denmark, which looked at 51,973 pregnancies in which the mother took steroids in the first trimester and found no increased risk. And while we're talking about cleft palette risk it is worth noting that mothers exposed to highly stressful situations in early pregnancy also carry the same increased risk of cleft palette. Other risks are to do with longer term use throughout the pregnancy, such as gestational diabetes and small for dates baby, both of which are a small risk than the risks associated with untreated hyperemesis in the second and third trimester.

Interestingly the dose required for HG management is generally much less than for those other conditions mentioned above.

So why the difference? Is it ignorance? Prejudice? Fear?

Well it boils down to belief in the condition really doesn't it... the conditions mentioned above are all “real” and exist outside of pregnancy, where are HG is caused by pregnancy and therefore is just a “hormonal woman making a fuss” or something along those lines.

The bit I really don't get is why so many doctors seem to throw the evidence base out of the window as soon a women is pregnant?

Why is it okay to just make stuff up about supposed risks instead of having a look at the evidence?

Since when was termination “safer” for the foetus than taking a medication with a possible tiny increased risk of cleft palette?

These are all questions I'm unfortunately unable to answer, but if you are a healthcare professional who would prefer your patient terminated a wanted baby rather than give her a safe and effective medication perhaps you could explain to me why? Is is fear from the Thalidomide disaster? Is it because you don't think she's really that ill? Is it lack of time to look up the evidence? To be fair it's not hard... it's not like you have to drive to a medical library and trawl through the literature... the information is at your fingertips.

The saddest thing about the episode of Call the Midwife on Sunday was how little we have moved on in terms of treatment and understanding of HG since the 1960's. Women still meet midwives who tell them to “put mind over matter and suck a polo mint” while they are rapidly getting more and more dehydrated. Women are still left until the point of collapse, until their oesophagus is torn to shreds, blood vessels in their face burst, hips covered in bedsores and emaciated bodies too weak to stand. The difference now is that instead of looking at the treatments available and their evidence base for safety and efficiency women are denied them. If that storyline had been set today the character would have been encouraged to terminate the baby, especially given the social situation she was in.

Doctors in the 1960's had to prescribe medication with no knowledge of it's risks, no evidence base behind it. But they don't have to do that now... there is plenty of information widely available, they just have to access it.

I've rather waffled on with this post now... but my point is that Thalidomide did enough damage back in the 60's and I'm sure for those affected it still causes unimaginable misery and frustration that it was ever allowed to happen – but enough is enough. We have to stop letting the legacy of Thalidomide continue to cause harm to mothers and babies. From thousands of foetal deaths to lifelong maternal health complications due to untreated HG, the legacy of fear is rife. They aren't asking for a cure for morning sickness... they are asking for safe treatment for a life threatening complication of pregnancy. 

For support, information and full references please refer to the Pregnancy Sickness Support website.

All treatments are also fully discussed in my book Hyperemesis Gravidarum - The Definitive Guide:

Jump to the survey

I speak to women day in and day out about hyperemesis gravidarum and the all consuming impact it can have on their lives, not just during pregnancy but for many years afterwards too. The biggest taboo has got to be the issue of termination for the condition. To say it's common would be an understatement. These are not terminations of unwanted babies. Many of these are babies which were planned and tried for within happy and healthy relationships. Some are babies which took months, years and even IVF to conceive. Others are babies conceived by “surprise” yet none the less wanted and welcome.

So why are they being terminated? Well, I have my theories on the subject, specifically around a lack of healthcare professional knowledge and understanding of the condition, an unwillingness to treat and a sheer lack of compassion. But to get to the root of the issue and to understand the situation on a deeper level so that we can look to the future and improve care and treatment for this fatal condition we need to know more about what women are experiencing.

In my new role as Chair of Pregnancy Sickness Support I've established a new working relationship with the British Pregnancy Advisory Service (BPAS), who are the leading independent abortion service provider in the UK. Together we want to tackle the issue of “unwanted terminations” for treatable medical conditions. Too often women faced with taking medication in pregnancy, not just for hyperemesis but a whole host of conditions, are told that “nothing is safe” and “if you can't put up with the symptoms you'll just have to terminate”.

So here is what I need you to do... if you have suffered hyperemesis and you have terminated a pregnancy, whether or not it was the main reason or just a contributing factor, please fill in this survey as fully as possible. The more terminations you have experienced the longer it will take but for one termination it should just take about 10 minutes. It's completely anonymous so you can't be identified. 

We hope that by shedding light on this sensitive issue we can look to educate healthcare professionals and the wider public so that women faced with difficult decisions about the future of their pregnancies and the risk/benefits of medication can do so with full and accurate information. So that women do not end pregnancies they actually want to continue because of a lack of knowledge, understanding and support. So that wanted babies are not lost to old wives tales and stigma.

The more women who speak out now the greater the hope for the future, for our daughters and our son's partners. The more responses we get the louder our voice and the harder it is to ignore. 

Take The Survey Now

Why, in 2015, is it still okay for doctors, midwives, nurses and society in general to treat sick people like idiots?

Why is it that just because someone hasn't suffered something they can't imagine how horrendous it is for someone else?

I've never had a broken leg, but I can begin to imagine it's painful and debilitating! I've never had cancer, but I can begin to imagine it's terrifying, traumatic and painful! I've never experienced a still birth, but I can begin to imagine it's utterly devastating and life changing. I haven't yet experienced the loss of a loved one, yet I can begin to imagine how hard it is to move on and see the sun again.

I've never had food poisoning; I've never suffered mental illness; I've never been assaulted or raped; I've never been in a major car crash; I've never been in a war zone; I'm not diabetic or epileptic or asthmatic; I don't have a congenital disease or a serious allergy; I've never had anaphylactic shock... Yet I can begin to imagine that all those things are scary and difficult things for other people. Things that can take time to come to terms with and can have a major impact on their lives.

And I certainly don't doubt their existence. Nor would I presume that I can ever fully grasp the personal impact those things have on another individual.

Hyperemesis can turn a women from a healthy, happy person, enjoying work and looking after her herself and her house, excited about being pregnant, perhaps newly married, into a shadow of herself throwing up 20+ times a day, bed bound, unable to eat and drink, dehydrated and rapidly losing weight. Yet people all around her will be thinking that she is just making it up, attention seeking, making a fuss, weak, mentally ill etc etc.

Why is that? Are we raised to be so utterly unempathetic? Or are we raised to think deep down that most women are neurotic and melodramatic and prone to making a fuss over nothing?

I don't go around claiming that a medical condition doesn't exist simply because I've never had it or heard of it! “You have what? Oh I've never heard of that so it can't possibly exist!”

I wouldn't tell a pregnant women who has broken their ankle that they should just get on with it and walk on it because when I stubbed my toe that's what I did and it was fine. They should shun modern, evidenced-based science and certainly shouldn't use that big cast because it “might” cause problems for the baby and if they're in pain they should try homeopathy and positive thinking instead of pain killers. Of course there is plenty of evidence that a plaster cast won't cause problems for the baby and there is no (proper) evidence that homoeopathy will help with the pain with anything other than the placebo effect. In the same way there is plenty of evidence that anti-emetics won't harm the baby and no evidence that homeopathy or acupressure helps hyperemesis gravidarum.

But a broken leg shows up on an X-ray whereas HG is soooo much harder to diagnose... you actually have to trust that the woman isn't, in fact, sticking her fingers down her throat and deliberately starving herself to produce ketosis and weight loss and dehydration. That takes a lot of trust right? Cos sensible women with jobs and mortgages and husbands and other kids, they do that sort of silly thing ALL THE TIME!!!

What the hell is wrong with with people that the life of a woman is worth so so so much less that that of a 6 week foetus? Even if you personally believe the two lives are equal why are mothers left to rot and suffer and develop life long complications and risk their own lives and become mentally ill just because they are pregnant. Why are they treated like idiots who are making themselves ill "for attention" or "the drama". Why are they made to feel guilty for “risking their baby”... Don't those silly women know they just need to eat?

Is it that hard to imagine that she simply doesn't have a choice, that the food won't stay down and forcing it in just makes it worse?

And then there are the doctors who would rather a wanted, tried for baby was terminated by the devastated mother than go to the effort of looking up the easily accessible research about the safety of medicating for the condition. And they do this wonderfully clever thing whereby they make the mother feel like it's her fault for “not being strong enough” or “She is too selfish to put up with a bit of sickness like everyone else does”

The ironic thing about the “it's not safe to take medication” card that as soon as you look at the evidence (which is what healthcare professionals are meant to do) then it's pretty clear that by leaving the mother to suffer and rot you are also increasing the risk of harm for the baby! So because people “don't believe” the woman they risk both her and the baby's health and somehow the mother still gets the blame and is made to feel guilty.

And then there are the bosses and work colleagues who think their female employee is just after some time off work. The woman who hasn't been of sick for years, is always on time and stays late and enjoys her job and is sociable with colleagues, now she's pregnant she thinks she can have time off for any little complaint. Jeez... If you want some time off work then fake some other illness, not the one that actually requires IV fluids to stay alive and that risks your long term physical and mental health and your wanted, tried for baby!

Why would a woman, who risks losing her job and house, take months off work for an illness she could fix with a ginger biscuit and some fresh air?

Think about it people... maybe it's because it's really, truly, honestly a really awful and debilitating condition, which is not self inflicted and can not be overcome with positive thinking??

Why would a woman who wanted a baby so much that she has been through 2 years of multiple IVF treatments to get pregnant then consider a termination because she is so seriously ill and suffering in such an unimaginably awful way? Um... Maybe because she is suffering an actual horrific illness but her doctor doesn't believe her because "his wife had morning sickness and just got on with it".

So here are some more things to think about:

• Did you know that people who don't have pneumonia but do have a mild cold don't need to take antibiotics?
• And did you know that people who don't have diabetes but do really like sugar don't need to take insulin?
• And people who don't have a broken leg but did stub their toe last night don't need to wear a cast for 6 weeks and take pain killers?

It's true! And also women who don't have Hyperemesis Gravidarum but do have morning sickness don't need to take antiemetics or get IV rehydration!!!

COME ON SOCIETY!!! Is it really that hard to believe that just because you haven't personally heard of a condition that it doesn't exist? Is it that hard to show empathy to someone going through something that you haven't personally experienced? Is it really necessary to question the validity of your partner/friend/daughter/sister/employee's symptoms just because she is pregnant, when you know that normally she is a happy, busy, strong and sensible women?

And you know what? This post doesn't just go for Hyperemesis Gravidraum... There are so many conditions which people wilfully choose to misunderstand and stigmatise. Ones with clear physical symptoms and others with more hidden impacts.

Tell me... Are your really that arrogant that you think you've heard of every disease in the world? Are you really that self centred that you can't put yourself in someone else's shoes and see their suffering? Are your relationships with people so one sided that when their circumstances change and they need help and support that you turn on them and accuse them of melodrama? Are you so insecure and unhappy in your own life that you show jealousy towards people who need a little extra care and love because they are seriously ill and suffering?

I hope you are not but from speaking to women with a serious medical condition who risk losing their babies day in day out it can sometimes seem like everyone is like that until they go through something serious themselves... But it doesn't need to be like that.

If you are guilty of any of these traits then make today the day you change... Decide to open your mind. Haven't heard of something? GOOGLE IT! Don't make random useless suggestions. Don't know how to help your friend? ASK! "What can I do to help?" Is possibly the most wonderful thing you can say to an ill person. Stick up for misunderstood conditions! If someone is saying something ignorant about your partner/friend/colleague and their medical condition then CORRECT THEM! Coming from someone who doesn't have it can often get through far more effectively than from the sufferer themselves.

THANK YOU for reading this post... Please share it far and wide and let's make the world a more accepting and understanding place for people suffering stigmatised illnesses. And lets make sure that evidence based medicine starts to prevail, even in pregnancy!

Following the launch of  Hyperemesis Gravidarum - The Definitive Guide (HGDG) and it's amazing reception in the HG Community I've now got time to focus on a couple of other projects I've had up my sleeve for a few years.

HGDG is very much a manual for the condition, a serious guide to the causes, treatment and care for the condition as well as self help and further signposting. While I tend to write in an “accessible” it is meant as a sort of text book for sufferers, healthcare professionals and families.

Now I want to do something a little more creative... more of a mental survival guide if you will... something that will make women feel less alone, more understood and stronger united with the rest of the HG Community. I want it to make women laugh, cry, scream, have hope, feel bonded and ultimately more able to cope with their experience. Hopefully it will also provide insight for people who haven't suffered too and will be essential reading for HCPs caring for our community.

But I need your help... more research!

CLICK HERE TO FILL IN THE SURVEY

I get so many comments and emails and I speak to countless women on the phone while running the PSS helpline, but I need them in a format I can work from if this project is ever going to happen.

Please can you take some time to fill this survey out. I've tried to make it a little bit fun so you can really let loose on the things people said to you during pregnancy. Take it as a chance to vent! You can do it with your partner if you want (unless of course he/she said the awful things! In which case I'll send you a copy of the book when it's out so you can shove it where the sun don't shine!).

It's so wonderful we have so many women getting involved in furthering the research and knowledge about hyperemesis... the more decent published material there is in the world the more the general public's perception of the condition will start to shift. In a few years people will have no excuse for never having heard of HG or for thinking it's “just a bit of morning sickness”. Attitudes like that will become extinct and replaced with awareness and understanding, empathy and helpfulness. Women being prescribed medication will be given proper information about the treatments so that scaremongering by miss-educated doctors and unscrupulous journalists will be a thing of the past. Women may still suffer HG but they won't have to fight for treatment and care for their life threatening, torturous and terrifying condition.

In the coming weeks I'm going to be tacking a much bigger subject... it's a massive taboo issue but it needs addressing. It's the fact of women terminating a pregnancy for HG, or rather - it's the fact of doctors terminating a pregnancy for HG instead of treating it. I'm going to be doing a big survey for those who have been through it and that's why I'm giving advanced warning. I'm hoping as many women take part as possible (anonymously of course) but I didn't want to spring it on you... I wanted to give you time in advance to think about whether or not you would want to take part to further awareness and to be ready for the survey. I already have a collaboration with a big organisation looking to collaborate on this issue and changing things for HG sufferers, but more on that next week...

In the meantime, this survey is meant as a bit of fun really... a chance to vent and tell me all the most awful and ridiculous things people have said to you... really go for it!

CLICK HERE TO FILL IN THE SURVEY!

As some of you know I've been working hard to develop collaborative relationships between organisations such as PSS and the Pregnancy & Medicine Initiative. There is only so much individuals and small organisations can do on their own and by pooling our resources and working together we can reach larger audiences and have a greater impact nationally and internationally. I've featured a post by Caroline before and since then our working relationship has strengthened further and last week saw the launch of a joint fundraising and leaflet distributing project to get information about medication in pregnancy to the women who need it. Over to Caroline to tell you more about this important and exciting project: 

When I was pregnant with my first child, I often felt vulnerable and under-informed. Whenever faced with a medical condition, even the smallest (skin rash, a bad cold, nausea…) I would turn to friends or the internet for recommendations, and got very conflicting information. And more often than not, the advice was “wait it out” – doing anything other than drinking tea with lemon might harm the baby.

In my case, waiting it out was a reasonable option, and while I felt miserable for a few weeks during my pregnancy, I didn’t face any serious effects from these minor issues. But what if I had faced a major health issue, I asked myself?

Much too often, women who face a serious medical condition while pregnant are thrown into a whirlwind of contradictory advice, and need to make important decisions about their health without proper information or support. Very often, they even receive conflicting medical opinions from specialists and obstetricians, and must make the difficult choice of following one or the other’s advice, at the risk of being stigmatised.

What if we could help women in this situation ask the right questions to help them make these important decisions?

At the Pregnancy and Medicine Initiative, we believe pregnant women have the right to mare informed health-related decisions and have the right to access the medical care they need. We’ve developed a kit that can help facilitate the dialogue between them and their doctor(s), so they can get answers to their questions, or at least encourage their medical team to look further than the obvious solution.

We need your help. The kits were developed with the help of our Advisory Board, made up of medical experts in the field of oncology, bioethics, rhumatology, obstetrics and pediatrics who are involved in the issue of pregnancy and medicine. We are looking to raise funds to distribute these kits across hospitals in the UK so a maximum of women can benefit from them.

Will you support us? £10 will help us reach about 150 women. In addition, part of the proceeds will go to our partner charities, Pregnancy Sickness Support and Mummy’s Star, who are doing fantastic work supporting pregnant women facing a serious medical condition.

Thank you in advance for helping us. Please vist our fundrazr campaign to find out more: https://fundrazr.com/campaigns/cvu10/ab/c4RId4

When the toothpaste foams just a little too much, or I swill my mouth and spit in the sink... sometimes it still makes me retch.

When I'm at someone's house and they make a cup of tea without mentioning it has earl grey in it... I'm trying not to retch.

When I clean the family loo and look down in the bowl... I have a sense of over familiarity, it induces nausea.

When I wake in the night to my children's needs... my stomach does a flip, a familiar sense to vomit urgently.

When my children or dog are sick... I can't help but retch and gag.

When my children throw up in a bowl... I have to hide it in a corner for my husband to dispose of after work.

When we drive down certain roads... it is landmarked for ever by the places I threw up.

When I look at my wrists... I still see the scars from the pointless acupressure bands I wore to prove to the world I was at least trying to "help myself".

When someone mentions ginger... I'm filled with rage and anger.

When someone asks about a cure or the cause for hyperemesis gravidarum... I'm filled with sadness that neither are yet known.

When I look at my children, sleeping in their beds and I stroke their soft faces and kiss their little cheeks... I know it is still worth it.

When I post my blogs and answer emails and calls from desperate women... I know I am helping others.

When I write articles and publish research... I know I am changing the world.

When I look at my life... I know I am changed... because of hyperemesis gravidarum... and that's okay.

I spotting this hilarious buzzfeed post about "Day on a Plate" going viral on Facebook this morning as a backlash to the depressingly perfect and blatantly bullshit “My day on a plate” feature of the founder of a juice company - no happy person lives like this:

So I thought I would give you a giggle with an HG version of “my day on a plate”...

5.30am – Wake up with desperate urge to vomit... dash to toilet and just about make it so acid splutters bowl instead of bedroom carpet.

6am – crawl back to bed hoping to get a bit more sleep (my only relief from the relentless nausea)

7.30am – Husband wakes, creating minor movement in the bed, causes retching, then child comes in with morning breath that makes me retch again. They quickly evacuate the bedroom and get on with their days

8.30am – Try nibbling a ginger biscuit as instructed by every human I've ever met and some that I have never. Sticks in my mouth so attempt a sip of water... projectile vomit into bowl. Back to sleep

11am – Woohoo! I've passed most of the morning asleep! Take anti-sickness tablets with sip of water

11.02am – Throw up anti-sickness tablets. Fantasise about food and lie very still

11.30am – Attempt to go downstairs, throw up in bowl at bottom of the stairs for 20 minutes but hey, at least I'm downstairs now!

12.00am – Sooooooo hungry behind the nausea so consider making a slice of toast.

12.30pm – Toast successfully eaten! Now to sit very very still in the hope it stays down.

1.30pm – Well it stayed down for an hour! Go to change pants.

1.35pm – Up stairs now so may as well stay put – attempt to sleep

1.40pm – Thank fuck for my smart phone, engage with outside world via facebook and twitter. See that other people are at work, play groups, on holidays and other such normal things, feel more miserable and guilty. Message a school friend about pregnancy (trying to be positive!), mention sickness and haven't left the house in 6 weeks except for hospital admissions, secretly hoping she offers to visit. She comes back with congratulation and had I tried ginger? - click defriend.

2pm – Doctor phones, apparently I shouldn't still be sick because it ends at 12 weeks and I should try going for a walk. Wants me to stop medications soon – I reassure him they don't stay down anyway.

2.30pm - Midwife phones to book appointment, wants me to go to surgery for it, explain I can't due to HG, asks if I've tried ginger. Hang up, wondering if I can request a different midwife.

3pm – Boss phones to see if I know when I'll be back at work... says his wife had morning sickness but still managed to go to work. Suggests I could get up earlier to spew up before work? TWAT!

5pm – Husband and child home, cooking smells and noise from downstairs spell 1 hour of retching and spewing acid.

6pm – Take anti-sickness tablets and welcome the drowsiness. Mentally high five myself for surviving another day but sort of wonder if I'll actually wake up in the morning. Sleep.

Hmmm... doesn't seem very funny reading it back...

“Have you tried ginger” is a common suggestion received by sufferers of hyperemesis gravidarum from friends, colleagues, relatives and healthcare professionals, fact!

Now I'm going to be very careful here because I don't want to lead or skew responses, but... I want to explore how hearing the suggestion of ginger makes women feel and the mental impact it has, either positive or negative. I want to know if they find it helpful and comforting or if it has a negative impact and increases isolation.

If I get enough responses from this I will look to get it published in a healthcare journal but due to the self selected nature of my readership I will need a LOT of responses to make it credible. To take part you need to have been admitted to hospital at least once for hyperemesis gravidarum in the last ten years.

In the meantime I'll publish preliminary results on this blog so if you want to know when they are out then sign up using your email address in that little "subscribe" box on the right...

The survey will take around 5-10 mins depending on how much thinking you have to do and how much you have to say on the matter...

TAKE THE SURVEY NOW

Life seems to be busy on a whole new level recently. Unfortunately Pregnancy Sickness Support got turned down for it's bid to the National Lottery and so I've been working hard to streamline the organisation's resources and looking to the future as well as getting the e-book version of Hyperemesis Gravidarum - The Definitive Guide ready for release. And obviously then there is family, work and all that... So frankly I'm really glad I invited a number of guest posts a few weeks back! 

Continuing with my theme of giving other survivors a voice to tell their stories via my platform I've got the story of Sarah's battle with hyperemesis gravidarum for you this week. Sarah has her own blog, excellently titled "No More Ginger Biscuits" so check it out...

Sarah's Story

Somewhere after about 4 years of being married, and approaching our late 20s, my husband and I started to imagine having some little ones around. We imagined a tiny person joining us for babycinos at the cafes we frequent, an additional passenger joining us on our love of travel, and creating a loving home for them to grow up in. In September 2011 I gave birth to our beautiful daughter, and indeed have for the most part enjoyed the reality of what we had imagined parenthood to be. 3 years down the line, it was time for a sibling and so I find myself 22 weeks pregnant with number 2!

However, when we set out imagining and planning our little family, nothing could have prepared me for a condition which would turn out to overshadow and rob from these years. It has hard to imagine the extent to which an illness I had never heard of – hyperemesis gravidarum – could shape my experience of pregnancy. I have never been panicky about health matters, or much of a worrier to that end, and I assumed that pregnancy would be pretty straight forward if we just went with the flow. I had read a lot of information about pregnancy, I knew a lot of women who had had babies, and pregnancy for the most part seemed pretty straight forward. So when I was sick the first time at 5 weeks with my first pregnancy I remember thinking ‘oh, this must be morning sickness’ and attempting to get on with my day. However, as the days progressed I started to realise it was not normal.

With my first pregnancy I was not diagnosed with hyperemesis until 24 weeks, prior to that it was a battle of me versus medical staff who just thought I was unable to cope with morning sickness. So I was uninformed, dehydrated and eventually offered medication reluctantly by a GP uttering the words ‘I wouldn’t take these if I were you, as they probably are not safe’, and left to my own devices. The sickness did not stop until I delivered at 42+ weeks, and I can assure you despite having had a terrible labour and an emergency C-section I have NEVER felt better than I did the day after I gave birth! I was bounding around that ward like it was Christmas come early!

Hyperemesis is extreme pregnancy sickness, and so something quite normal, a bit of nausea and vomiting in the early stages of pregnancy, becomes magnified exponentially. In my current pregnancy the vomiting is somewhat reduced by medication, but the nausea is totally relentless. There are nights in the dark when the nausea is so terrifying you actually wonder if you can make it until the morning.

In my experience, the ramifications of hyperemesis are also extreme; the price of a pregnancy is emotional, relational, financial, professional and practical. It can feel like the progress you have made in your life, parenting, career etc. are slowly unravelled in front of your eyes as you are stuck in a state debilitated by nausea and vomiting. I have a degree and a masters and a good job, and yet on the days I can crawl into work I am pretty much useless. The smell of the clinic room makes me sick, the sight of my computer screen, the sound of the phone, the pitch of the patients voices – all contribute to the nausea. Hyperemesis is a dark time. We are called hyperemesis survivors, and there is a reason for that. I talk more in my blog, No More Ginger Biscuits, about this, but in my first pregnancy alone I clocked up some 3018 hours of nausea. So now half way through my second the numbers are up again. It feels like I am allergic to being pregnant. My body literally can’t cope in the normal way with carrying a baby.

But for me it is the isolation of hyperemesis that is the aspect for which I was least prepared. It is a hidden illness at times, raging in the mind and body, but with nothing obviously broken on the outside. It appears impossible for people to understand. Pregnancy is a time when we are bombarded with the image of women glowing and blossoming, bonding with their yet-to-be-born babies.

However, for women, like myself, who have sickness day and night for the full duration of their pregnancies, I have found that people don’t really know what to say. The fact the symptoms are nausea and vomiting, symptoms which most people have experienced in life from time to time, actually makes it more isolating. People think they know what it is like. Most people have the odd sick bug, or have maybe thrown up after a dodgy take away. If they have nausea they probably lie down, and feel better in the morning.

Hyperemesis resets your daily baseline ‘norm’ to the feeling of being really sick and then adds to that further waves of more crippling nausea which attacks the very fibre of your being. Every minute I have been awake since July I have felt sick. It is the first thing I know when I wake up, the last thing on my mind when I go to sleep. It takes over your mind, and empties your emotions and body in a way that is hard to communicate. The nausea with hyperemesis is absolutely relentless. Every single event for the duration of the pregnancy - birthdays, anniversary, Christmas, child’s milestones, scans is overshadowed by nausea. There is no escape. I found the early days of parenthood a walk in the park in comparison, because there is a break. I could leave my baby with my husband and have a rest. I could get a babysitter and go out and be carefree. However, even the most supportive husband, which I am thankful to have, cannot take this away from me. Hyperemesis is a battle that is mine to fight, and mine alone.

I am grateful that there is an increase in awareness of hyperemesis. I appreciate that there are books being written and more articles in magazines about this illness. Thankfully, in my experience the doctors I have seen second time round have been far more caring, informed and helpful than the first time round. However, I think we need to remember that for women with hyperemesis the familiar decision to have a child, that natural part of many people’s lives, comes with a price tag that most women simply don’t have to pay.

Veteran hyperemesis women know only too well what a nightmare trying to brush your teeth while trying not to spew up is! The brushing action, the foam, the whole process is utterly vomiting inducing and is not only a dreaded event but avoiding it is a source of massive guilt! There can be no denying that hyperemesis gravidarum can take a massive toll on your oral health... from the acid vomit damaging the enamel multiple times a day, to the poor diet and the days, weeks or months of avoiding brushing. It's an issue I get asked all the time about and we cover it in the book Hyperemesis Gravidarum - The Definitive Guide also.

At the Pregnancy Sickness Support annual conference in October I was delighted to meet a highly experienced dental surgeon who is also a hyperemesis survivor! She's joining our team of volunteers, but in the meantime has written up some evidenced based information for those women out there suffering now and feeling utterly guilty and miserable about the seemingly impossible task of protecting your teeth... in addition to your health, your baby, your sanity, your family and all the other things hyperemesis takes a chunk out of!

Over to Dentist Gina Harrap:

We all know we should be brushing our teeth twice a day and limiting sugar snacks to keep our mouths healthy; but what do you do when you can't due to nausea and vomiting in pregnancy?

As a NHS dentist and veteran of a hyperemesis pregnancy this is a problem I've dealt with both professionally and personally.

So, what can you do?

When you can, brush your teeth twice a day with a fluoride toothpaste and floss once a day. Don't rinse after brushing, just spit excess toothpaste out.

Don't brush immediately after vomiting because the acid from your stomach softens the enamel on your teeth. If you then brush you wear this vital layer away. Instead rinse your mouth out with water or a fluoride mouth rinse. Supermarket own brands are great for this as they're generally milder in flavour and cheap so you can have a bottle at home, work, in the car and anywhere else you might need. Wait at least 20 minutes between vomiting and tooth brushing for your tooth enamel to re-harden.

As far as toothbrushes go use a medium hardness brush with a head roughly the size of a pound coin. Experiment if a normal or electric toothbrush is going to be easier for you to tolerate. A battery powered disposable brush may give less vibration than a rechargeable electric one making it easier for you to brush.

When you do manage to brush start by cleaning your back teeth first. This delays toothpaste coming into contact with the taste buds and potentially triggering vomiting.

Choose a sensitive toothpaste as they tend to have less flavour and no foaming agents (SLS) but still contain vital fluoride. Dentists frequently get sent free samples so do ask your dentist for some so you can see what is going to be easiest for you to tolerate.

If you are very prone to decay ask your dentist if the prescription toothpaste Duraphat 5000 and/or prescription mouth rinse might be appropriate for you. NHS dental prescriptions are also free during pregnancy and for 12 months after the birth of your baby.

If you can't tolerate any toothpaste try brushing without any, this will still remove plaque effectively. If you can't manage that you could use a flannel to gently rub your teeth to remove plaque. You could follow either of these by rubbing a thin smear of toothpaste over your teeth with your finger.

Frequent sugary or carbohydrate based snacks can lead to tooth decay but tend to be necessary whilst suffering from HG. If you can, chew sugar free gum containing xylitol after each snack. Xylitol has been shown to stop plaque forming on your teeth. Also if you're struggling to brush it can be helpful to use instead. If you're having frequent sugary or fizzy drinks use a straw so the acid and sugar bypasses your teeth.

Research has shown that there's possibly a link between gum disease (periodontal disease) and premature birth. If you have periodontal disease and are struggling to keep your usual oral hygiene routine talk to your dentist for a personalised management plan.

Make sure you take advantage of the free NHS treatment all women are entitled to whilst pregnant and for 12 months following the birth of their child to get your oral health back on track.

About the author

Gina qualified as a dentist from the University of Leeds in 2004. She subsequently undertook further training posts in Acute Dental Care at Leeds Dental Institute, and Oral and Maxillofacial Surgery at Pinderfields Hospital, Wakefield. She was awarded membership of the Faculty of Dental Surgery of the Royal College of Surgeons, England in 2008. She currently works in a large family mixed NHS and private practice in West Yorkshire. She is a registered volunteer with Pregnancy Sickness Support. She has one daughter and in her spare time is a member of a vintage style synchronized swimming group, The Bramley Mermaids. 

I'm in Telford tonight having set up the Pregnancy Sickness Support stand ready for the next two intense days at the Royal College of Midwives Annual Conference. I'll be speaking to hundreds of midwives and student midwives as they shuffle past our few feet of expensive floor space, which will make it worth every penny of the charity's hard raised money. I'll also have copies of Hyperemesis Gravidarum - The Definitive Guide available there and had amazing feedback today from a women whose GP was reluctant to prescribe until she showed him the book... she's now getting excellent care! AMAZING! So in advance of tomorrow I want to share this guest post by Tracy Morgan, because it demonstrates clearly why midwives knowing about this condition is so vital and why I'll be working my socks off for the next two days to raise as much awareness with this key group of professionals as I possibly can. 

Hyperemesis Gravidarum - My Story, by Tracy Morgan

The first time I ever heard the term Hyperemesis Gravidarum, my first son was a few months old. When I think back now, it is hard to imagine how I got through those long, torturous months with absolutely no idea of what was wrong with me. I have always been a Google queen – any symptoms and I am there at my computer seeking, and inevitably finding, the worst case scenario. So, only ten short years ago, how come there wasn’t any information to find? I actually don’t ever recall googling my symptoms. And really, why would I? The medical professions I dealt with never gave me any reason to think how I was feeling was anything more than morning sickness, and neither did anyone else. So it stands to reason that I would be left completely in the dark to the true nature of how bad I was feeling.

My first pregnancy was horrific. It robbed me of a time that should have been cherished, magical and incredibly special. Instead, it was miserable and downright unbearable. I started to feel sick at about five weeks pregnant, and by seven weeks, HG was in full throes. I couldn’t keep anything down, not even water, and the weight dropped off me. I rarely got out of bed, stopped showering, and at one point, I didn’t wash my hair for weeks on end - I just didn’t have the energy, and the smell of the shampoo was totally over-powering.

Surprisingly, other than those mentioned, I remember very few specifics about my first pregnancy. I just seems a blur. Considering my aversion to food – the look, smell and taste - I thought about it a lot. I remember getting terrible cravings for McDonald’s fries with tons of salt, and I would lie in bed just fantasising about them. I knew I wouldn’t have been able to eat them; in fact, I didn’t even really want to try to eat them, but the image of them replayed in my mind like a quirky home movie. I also slept a great deal. Although HG is exhausting, I used sleep as a way to escape; ten minutes unconscious was ten minutes nearer to the end of my pregnancy.

At my first midwife’s appointment at 10 weeks, I tried to explain how ill I felt, that I couldn’t keep anything down, not even water. Her response was unsympathetic, and she suggested I try to drink water with a teaspoon, instead. Wow! A teaspoon! Who would have thought? So simple. So utterly stupid. The water wouldn’t have stayed down even if I’d used a garden hose. This total lack of empathy or concern set a pattern for things to come - at no point during my pregnancy did any medical professional ever voice concern over my weight-loss; this is despite the fact that my chart showed a drop in weight at every appointment, and me weighing less in the delivery room (carry a 9lb baby), than I had right before getting pregnant. Nothing was ever mentioned about the sickness being anything other than a normal, expected side-effect of pregnancy.

As well as the terrible physical punishment my body sustained, HG also had a serious detrimental effect on my mental well-being. If this was normal, something many women went through without any problem, then I must be an over-dramatic, self-absorbed, bitter woman purposely trying to spoil what should have been the most beautiful time in my life. Yet, I knew this wasn’t true. Why would I want this special time to be ruined? The battle between knowing how ill I truly felt, and other people’s obvious opinions that I had no more than simple morning sickness, caused me to feel totally ostracised, misunderstood, isolated and incredibly lonely. My mum experienced what sounds like HG (of course undiagnosed), and although fairly sympathetic, she was thousands of miles away. My partner really tried his hardest to understand, and even though I am sure there were times when he thought I was over-reacting, or a pain in the bum; he never showed it. It was an incredibly stressful time for him, too – he worked long days, right through until the early hours of the morning, did all the housework, as well as taking care of a miserable and sick woman, all without moaning. I was lucky to have him; simply couldn’t have done it without him.

So, the realisation months after giving birth, that I’d had way more than just normal pregnancy symptoms, understandably brought about a multitude of overwhelming sensations. At first, I felt relief and vindication. This was proof that I hadn’t imagined it, or exaggerated how terrible I’d felt. Knowing that it was a medical condition, and not my fault, was like a weight off my shoulders. Then, came a deep, crushing sadness. A sense of why me? I felt robbed of my chance to blossom, to float around proud and happy, cherishing every precious second of my pregnancy. Lastly, and probably the strongest of the emotions, was anger. A huge sense of being let down, not only by the medical professionals supposedly there to support me, but the people around me. I wanted to scream in the face of every disbeliever: I TOLD YOU SO!

After my first son, I swore blind I would never get pregnant again, but two years later I found myself on the HG merry-go-round once more. This time, I was forewarned and forearmed. I was determined that I wouldn’t allow anybody to try to tell me this was just part and parcel of pregnancy; I was on the war-path! I went to my first midwife’s appointment at eight weeks pumped up, and ready to do battle. Thankfully, there was no need - I told her about my first pregnancy, and she immediately said hyperemesis gravidarum. Oh, the absolute relief! That sensation of being believed and understood is as powerful now, as it was then - it makes my eyes well up at the thought. With my midwife’s support, and medication, my second pregnancy was easier. It didn’t make HG go away, but knowing I had someone in my corner, fighting on my behalf, allowed me the strength to stand up to people who still failed to show me a shred of understanding. Because, the sad fact is, that even though the midwife prescribed me medication, even though HG was now in my medical notes, people around me still remained sceptical. I guess it is much easier to believe that a woman would willingly make herself so miserable, than to accept that she was actually telling the truth.

Having HG with a two year old in the house is indescribable. It actually helped in a bizarre kind of way, in that I had to get up to look after him; I couldn’t not feed him. But, trying to take care of a chattering small toddler when your head is pounding, and your stomach is so queasy, is hard. I would lie down close to him whenever I could. I would put his favourite DVD on and pray that he would watch it longer than five minutes (which was the best I could hope for with my energetic, easily-bored child). It became our little game - let’s see where we can lie down and have a cuddle. I was just as isolated this time around, in fact, perhaps more so. At least I’d only had myself to look after the first time, with my second pregnancy, I also had a two-year old. Nobody offered to look after him - I guess people either didn’t care, or didn’t think to offer.

Although medication stopped vomiting at around 10 weeks during my second pregnancy, I never stopped feeling sick. I couldn’t bear to smell food cooking, and I was constantly swallowing wads of gross mucous, which just increased the feeling of nausea. Every waking minute, I longed for the excruciatingly endless day to be over; the thought “I can’t take any more” reverberated around my mind constantly and unwaveringly.
HG is hard to describe to someone who has no idea what it is like. Saying you feel sick is like saying your arm hurts a little when, in reality, it has been ripped off at the elbow. It is so hard to explain how it makes you feel – it just affects every single part of your body and being, physically and mentally. The closest I could come up with, was to say it was like the worst hangover you could imagine, only rather than being cured by a lie-in and a quick fry up; it’s 24/7, and lasts for 40 incredibly LONG weeks.

The legacy of HG lives with me to this day, and probably always will. I still feel incredibly defensive and unfairly treated. I also believe that I suffered some kind of PTSD. How could you not go through being so poorly, and for so long, without support, and not suffer trauma? For the most part, I tuck it firmly in the back of my mind, but as of late; it is increasingly brought to the surface by media coverage, largely due to the Duchess of Cambridge’s pregnancy. I have sat with my hands scrunched together, experiencing almost physical pain, listening to ignorant people bemoan the fact that “they just had to get on with pregnancy, and it must be nice to be a royal”. The problem with HG is that it is similar (I am loathe to say similar, but can’t find another way to describe it) to morning sickness, which is of course a normal symptom of early pregnancy, and therefore, one that many can relate to. Because they can relate on that level, they automatically assume that HG is the same as the touch of morning sickness they had, which perpetuates misunderstanding, and leads to a lack of support and care.

Another thing that cropped up when I tried to explain about HG, was other women proudly exclaiming that they didn’t care how ill or uncomfortable they were during their pregnancy, that they only thing that mattered was that they had a healthy baby, and how grateful they were for that. None of these women had HG, I hasten to add. This feeling that HG sufferers are moaning, ungrateful women, who should shut up and thank their lucky stars, is ridiculous. It doesn’t work like that. Never did I ever forget how lucky I was to be pregnant (I suffered a miscarriage before my first son) and this feeling that we need to button our lip and get on with it, because otherwise we seem ungrateful, needs to change.

The sad fact is that, even now, there will be people reading this, rolling their eyes and sighing with frustration. They probably think I am exaggerating, that it couldn’t possibly have been that bad. Perhaps they feel that ten years on, I need to get over it. But that’s the thing - I doubt I ever will. I won’t ever forget it, and just can’t stop trying to justify how HG made me (and others) feel. Women with HG, and survivors of the condition, just want recognition, and empathy. That’s all.

Today I wear my HG badge with honour. I stand tall, proud of not only living through the nightmare that is HG, but surviving to tell the tale. Not everyone is as lucky as me, and I know that compared to some women, my HG was a walk in the park. I came out the other end with two amazing boys, who make all the heart-ache, pain, misery and sadness so very worth it.

I said last week that I was handing over to share other women's stories of their battles with hyperemesis gravidarum. Well this week I'm starting with Susanne Remic, otherwise known as Ghost Writer Mummy. Her story here finishes back at 33 weeks but I've just had the great news that her baby is here and the nausea is gone at long last! You'll notice a lot of similarities between the stories to come and they'll have elements you can relate to yourself. During the research for the book we got stories from hundreds of women to include as quotes. What is striking is how much we can relate to each others stories and have shared experiences. Through my work with Pregnancy Sickness Support I also know how incredibly valuable it is for women suffering now to hear other women's stories and know they are not alone. Just this morning I spoke to a lady who just couldn't believe there was a whole hyperemesis community out there to support her. She was weeping on the phone, a mixture of misery for her suffering and joy at speaking to someone who understood. 

We Are Survivors - By Susanne Remic

Before I fell pregnant with my fourth baby I had only a small idea of what Hyperemesis Gravidarum was. Having seen some friends suffer from it, I knew it could be particularly miserable, and since I’d suffered pretty bad sickness with my son, I had lots of sympathy for them. But that was it. No empathy. No way of really knowing what it was like to walk those shoes. No way of knowing just how miserable it could be. How lucky I have been to survive three pregnancies with only comparatively mild morning sickness!

This time, the nausea started at six weeks, almost to the day. It came in waves and by lunch time I was vomiting. Being sick is very unlike me; I am usually very healthy and have never suffered from flu or food poisoning and very rarely have a cold either. Being sick was just not like me! But I was sick. Very. Enough to take to bed, praying for sleep so that the room could stop lurching. We assumed I had a bug that first day and thought no more of it, until the vomiting continued long after what is normal for a ’bug’.

At this point, my husband was working away from home 3-4 days a week and I found that first week incredibly hard. With a preschooler and a toddler at home, plus an older child to get to and from school each day, not to mention almost full time work (which I did from home) I was quickly exhausted. And panicking. I could barely keep my head up. How was I supposed to cope on my own?

After three days of constant vomiting, I took my sorry self to the doctors and asked for help. I was told that I was severely dehydrated and needed to go to the hospital for fluids. If I hadn’t been in tears, I would have laughed. There was no way I could’ve gone to the hospital with three children to look after and nobody else to do it. We had decided not to tell anyone about the pregnancy yet so I was on my own. Luckily, the doctor agreed to prescribe some medication and sent me home with strict instructions to drink as much water as I possibly could.

The medication I was given was called Phenargen, and it came with a warning that it could make me drowsy. I spent the rest of that day in tears, sipping water, sucking tiny pieces of ice cubes and waiting for school pick up time. As soon as the children were home, I took a tablet and waited for the sickness and nausea to abate. Ha! The Phenargen took the edge off the nausea, in some ways, but mainly it just made me really tired. We were all in bed by 6pm.

I soon learned that these tablets could only be taken at bedtime, and so I spent the next week on my knees, crawling through the days until then. Sleep was my only relief, and even then some nights were interrupted with vile nausea. My eldest kept me company while the little ones were in bed, and the days where my husband was home were bliss, as they meant that I could switch off a little and rest. But it was clear that I needed different medication if I wanted to stay out of the hospital.

I was finally prescribed Metacloprimide, a stronger anti-sickness drug. It is safe to take in pregnancy and it is the only reason I am still here, with a baby growing in my belly.

The early weeks of this pregnancy were so hard. There have been some truly dark days. Days where I have seriously wondered whether this pregnancy was the right thing to do. Days where I have wished for it ALL to go away. Everything. Days where I wanted to just curl up in bed and leave the world to it. I cancelled so many plans, cut off so many friends because I just couldn’t face seeing anyone or speaking to anyone. The effort to just carry out the bare essentials of life was immense. Yes, the medication helped (a LOT) but the nausea never really left. It was always there, lurking in the darkness.

I was 27 weeks when I stopped taking Metocloprimide and hopefully I will never need to take it again. I am now 33 weeks and I wish I could say that the sickness and nausea is a distant memory, but I’m not sure it ever will be. To say I feel robbed of my last pregnancy is an understatement! I still live in fear of the nausea returning, stealing what remains of this pregnancy. And yet, each day I wake and I feel okay and I know how lucky I am.

Some women spend much of their HG pregnancies bedridden, either at home or in hospital. They miss birthdays, family gatherings, holidays and life. They are unable to hold conversations, sip a cup of tea or even lift their heads from their pillows. Some women are not given medication until they’ve been admitted to hospital at least three times. Some women terminate their pregnancies because they are just unable to continue. Some women have no choice but to terminate, as their bodies begin to shut down with the ferocity of being so ill.

Most women who have HG in their pregnancies go on to deliver beautifully healthy babies and yet the memories of their sickness remains long after. And me? I am still unable to enjoy this pregnancy and I know that I must accept that, but for different reasons. And yet the fact still remains. Hyperemesis Gravidarum stripped me of my pregnancy. My dreams of nurturing my bump, bonding with my unborn child and enjoying these last months with the three children I have, before our world is turned upside down again. I have let my children down by being unable to be the mum they knew, the mum they deserved. I am no longer able to get through the days without a pang of guilt over who I used to be. I still cancel plans because I cannot face seeing people, or being in crowded places. I still think I could be ill, or feel panicked, or need to leave. I still carry tablets around with me.

I am one of the lucky ones. My experience of HG has not been as bad as many other sufferers. And yes, I am a survivor. My baby is a survivor. But it has been one of the hardest battles I’ve had to face.

If you would like to submit your story for consideration please use the form on the contact me page.

It's taken two years of seriously hard work. Started by Amanda Shortman in 2012 and joined by me last year to drive it forward it's finally here, the first of it's kind in the UK... Hyperemesis Gravidarum – The Definitive Guide. And boy-o-boy are we about bursting with pride! Pre-orders of it on Amazon has shot it straight to #4 on their Pregnancy and Childbrith Best seller list.

It's got everything you need to survive the condition, hopefully with your mental and physical health in tact and a wonderful baby at the end! It's also got all the info midwives, nurses and doctors need to holistically treat women with hyperemesis gravidarum both effectively and compassionately. It's approach is pro-active and encouraging and we hope it will provide support and inspiration to anyone affected by HG whether personally or professionally.

Our hope is that this book will make the world of difference to women with this misunderstood and under appreciated condition, now and for generations to come.

You can buy it from all major book shops on the high street, such as Waterstones, and online, such as Amazon. Currently it's only available in paperback but the e-book version will be available in 3-4 weeks.

You can click below to buy Hyperemesis Gravidarum - The Definitive Guide on Amazon.co.uk or click here if you live in America for the .com version and don't forget to write a review for it (if you like it!) and tell everyone you know about it!

And here it is on Amazon's Best Seller list this morning:

The thing with hyperemesis gravidarum is that on top of all the spewing and constant nausea there is horrendous isolation and intense loneliness that comes with long long hours alone in your bedroom or on the sofa with no one else around and very little you can do to help yourself out of the ensuring misery and depression that comes with it.

People who haven't been there and done that imagine that it's probably quite nice to have a load of time off work and not have to do any house work or make dinner for a few weeks. They picture you sitting on the sofa watching films and trashy day time TV, nibbling crackers and sipping ginger tea.

Oh how far from the truth do we know that to be. The idea of nibbling or sipping anything is a kin to climbing a mountain. No just the actual sipping but the process of having to sit up and use your arm to lift the cup to your lips can cause yet more rounds of vomiting and retching. Far from watching TV with it's moving images and sound, just the light through the window and the sound of the cars passing outside can move the constant nausea to more vomiting.

The good news is that for a lot of women this does get a little easier as the pregnancy goes on and TV watching is usually possible from mid pregnancy, which significantly helps pass the time, particularly in the days of on demand programming and downloadable film accounts.

But what about those first few weeks when moving out of bed seems impossible? (and by “few weeks” we're actually still talking around 6-12 weeks at least which is a hell of a long time!). I found audio books really helpful for passing the time with the volume on low it's just someone talking quite quietly. Best not to go with something scary or too exciting or something miserable and depressing, but it does need to be engaging and interesting for you to be suitably distracted by it. I listened to the whole of “Wicked” in my first pregnancy which was great and passed a whole 9 days of my then miserable, headache filled, dehydrated life. A little remote for the stereo meant I barely had to move to turn it on/off and my husband loaded a few other books onto the iPod for me after that.

In my first pregnancy I couldn't read books for about 8 weeks at the start but after that I would, except the weight and effort of the physical book would sometimes limit my ability to read. In pregnancy number two I invested in a kindle and boy was that a good move... you can lie still on your side and turn pages with a gentle press of a finger. Plus when you finish a book you can get another one instantly. The classics are all free on Amazon and you can take it to hospital with you too.

I also enjoyed new technology developments in my later pregnancies. Specifically smart phones and their ability to connect you with women around the world. Facebook, forums and twitter are all valuable ways to reduce the loneliness. Just be a little careful and see my past post about safety.

Games on my phone were great, mainly solitaire which takes very little effort (use a finger movement) and isn't flashy or bright but it particularly engaging and distracting. Needless to say I am very good at solitaire now!

You may not be able to use your phone, kindle or TV for the first few, most isolating weeks and it's important that you contact Pregnancy Sickness Support for a volunteer to support you through the worst times when the isolation is most profound.

Our book Hyperemesis Gravidarum – The Definitive Guide will be available on kindle or in paperback in September and has loads more tips and information about surviving hyperemesis gravidarum. You can sign up to be alerted when it's available to buy by clicking here and signing up.

Also check out the products I suggest in my HG Shop to help you survive the long lonely spew-filled days.

An inevitable part of HG is the miserably excessive amount of time spend in bed. People who have never been bed bound often make ignorant comments about how nice it must be to just stay in bed all day but those of us who have ever spend more than about 3 days in bed due to an illness or injury know what utter nonsense that it!

The reality is that after about 48 hours of being in bed that place we think of as a heavenly sanctuary of comfort and rest turns into a hellish cave of pain, isolation and utter misery. Forward about 6 weeks of being in bed, (that's over 1,000 hours) and the bed is actually hell on earth! On top of that, the smell of the bedsheets can be stomach turning, the light flickering through the crack in the curtain can seem like it's torturing you with it's playful flicker which triggers yet more bouts of vomiting. The sound of your house become intimately ingrained in your mind and can start to play tricks on you breaking the long lonely silences all alone in your squishy prison cell. And for some women, six weeks is just the start... nine long months, 36+ weeks, that's over 6,000 hours!

But on top of all that there are actual, genuine dangers of being bed bound for so long.

DVT and PE

Deep Vein Thrombosis (DVT) is a blood clot which can form in your legs or pelvis and if breaks off from the vein and travels to your lungs it can cause a potentially life-threatening condition called Pulmonary Embolism (PE). Pregnant women are already at increased risk of DVT due to various changes in your body during pregnancy, such as increase blood volume, and the dehydration women with HG experience increases this risk even more.

It is important you try to reduce the risk as best you can within the limits of what the condition allows... obviously, if you could get up and walk about for a bit each hour then you wouldn't be bed bound in the first place! If you are admitted to hospital you may be given an injection daily to combat the risk and you may be provided with special knee or thigh high stockings to wear. You can take these home and continue to use them if you want and if you are too ill to do the following risk-reducing steps then it is a good idea to keep them on.

• Switch between bed and a chair or sofa on a regular basis if you can

• Getting up and walking around your bed or house as often as possible

• Do simple leg exercises such as flexing and extending your foot, rotating your foot in circles.

• Stretch your thigh muscles (hamstrings) while lying in bed – raise one leg in the air as high as you can (up to a 90 degree angle), pull the leg towards your body gently and hold for 30 seconds. Release gently and repeat with the other.

• From a lying position bring one knee to your chest, hold for 15 seconds and release slowly, repeat with the other.

Ultimately for the women with severe hyperemesis all of those above prevention measures may seem impossible and you should discuss your risk with your GP or midwife if that is the case. They may prescribe compression stockings at home for you (then again, they may not... my GP laughed at me in my second pregnancy when I raised my concerns and wanted advice, they're not all like that though).

Knowing the signs and symptoms of DVT and PE is very important for bed-bound pregnant women and should you experience any of the following symptoms then get rapid medical assessment, call your GP or 111:

• Pain like a heavy ache, swelling or tenderness in one of your legs (usually your calf). The pain may be worse when standing or walking.

• Red or noticeably warm areas on your leg, particularly at the back of your leg below your knee

• Swelling in one area or on one leg

For symptoms of DVT see a doctor as quickly as possible.

Sometimes a DVT won't have any symptoms and you could suffer a PE with no prior warning. The symptoms to be aware of for PE are:

• Breathlessness, either coming on suddenly or gradually

• Chest pain, which may be worse when you inhale (breath in)

• Sudden collapse

For any of the symptoms of a PE you need to call 999 for an ambulance.

Pressure sores

Pressure damage to skin and soft tissue happens when you lie or sit in one position for a long time so that the blood supply to the pressure point is reduced or stopped and a wound starts to develop. They start as painful red patches but can rapidly become open wounds. Areas particularly prone to pressure damage include your heals, sacrum, shoulders, head and really just any bony bits.

Dehydration and poor nutrition increase your risk of pressure damage to tissue and reduce healing too. They are unlikely to get significantly bad for HG patients, except in the most extreme cases, and once you are able to get up and about a little the risk will drop significantly, but in the meantime it's important to be vigilant if they start to develop.

To reduce the risk of pressure damage try to change position regularly (every two hours or more frequently) and try to make sure there aren't creases in the sheets where you are lying. If you are very concerned or are developing pressure sores, which start as red patches that don't go white (blanch) when you press on them, then speak to your doctor or practice nurse.

Pregnancy pillows can help you get comfy in a variety of positions and may help in your effort to change positions regularly.

Don't forget you can enter my competition to win a Dreamgenii pillow before next Monday. Click here to enter.

Hyperemesis gravidarum doesn't only bring a whole lot of nausea and vomiting to the sufferer. As if that wasn't enough it can bring pytalism (excessive saliva), pounding headaches, torn stomach muscles, torn oesophagus', loss of bladder control and unimaginable misery. And it brings nine long months of being pretty much bed bound.

Someone once said to me, during my first pregnancy, when I was about 20 weeks pregnant and had been bed bound for about 4 months “Oh Caitlin, I hope that when I'm pregnant I can have time off work and lounge around in bed, it sounds lovely”... amazingly this person is still alive and it is a testament to just how much HG robs you of your ability to speak for yourself that barely retorted with a weak “no you don't, that's a silly thing to say”. Indeed, during pregnancy my voice was so small and inaudible that I took that and hundreds of other comments and let them well up inside into a pit of festering misery and loneliness and anger, which is now thankfully spilling out in this blog like an erupting super volcano causing a catastrophic extinction of the ignorance and stigma surrounding HG. Or at least I hope it is, but these things take time. The eruption itself doesn't cause the bulk of extinctions, it's the aftermath that does it (I read a LOT of apocalyptic literature during my bed-bound years).

Anyway, back to the point of the post... Being bed bound is far from enjoyable! Admittedly some women do manage to get up in the second half of pregnancy and some even manage to leave the house on occasion. But realistically us HG sufferers end up spending vast amounts of our pregnant lives wasting away in our lonely beds.

Now you all know me well enough by now to know that I'm likely to start suggesting some pro-active ways to make the experience of laying in bed a little more tolerable. And that's exactly what I'm going to do! I'm all for embracing the misery and tackling it head on.

Over the next two weeks I'll do a number of posts on issues related to being stuck in bed for months on end and how you can reduce your suffering and also reduce the risks of complications due to being bed-bound such as Deep Vein Thrombosis and pressure sores.

To kick off the series I've managed to sort out a super brilliant competition for you to win a brand new DreamGenii Pregnancy Pillow, worth £45.99, to help you get as comfy as possible in bed or on the sofa. You can use it after for breastfeeding or if you're never planning to be pregnant again you can give it to a friend or donate it to a current HG sufferer! I bought one in my first pregnancy and it served me extremely well through the following 27 months of three entirely bed bound pregnancies!

Check out my competition to win a DreamGenii pillow before the 24^th August and let your pregnant friends on Facebook know about it!

In the third of my series about preparing for hyperemesis gravidarum I'm going to discuss what emotional preparations you can make in advance of an HG pregnancy and tips for those of you considering, or embarking on, another pregnancy based on what worked for me with my third.

Women who have never had hyperemesis gravidarum before (whether or not they've been pregnant before) and have no family history of HG, have a 1-2% chance of suffering it in pregnancy; that's the base line rate in the population. Admittedly plenty more will suffer severe nausea and vomiting in pregnancy or undiagnosed HG, but the current rate within pregnant women is 1-2%. Unlike “normal morning sickness” which can vary greatly from pregnancy to pregnancy, women who have suffered hyperemesis gravidarum before have an 86% chance of suffering again.

People who have never suffered are likely to try to look on the positive and insist that if you think positively you'll fall in that 14% chance of not suffering. But as “thinking negatively” is known definitely not to be the cause and most women enter their first pregnancy excited and certainly not expecting it, we know that no amount of positive thinking will prevent it. Furthermore, pretending like it's not going to happen and just waiting to see could in fact be harmful and cause more suffering than if you had planned and prepared carefully.

I firmly believe that embracing the fact you are likely to get sick, potentially sicker than before, and planning emotionally in advance can significantly reduce the overall severity and reduce the mental health toll HG inevitably takes on the sufferer. Feeling “out of control” is a commonly reported distressing symptom for sufferers, which, particularly in the first pregnancy is understandable as the vomiting, often sudden and violent seems to be the thing in control of every part of you body. On top of that the condition can seem to send you whole life into free-fall. Time off work, admissions to hospital, inability to look after yourself let alone your household or children and the financial impact all that has. Women find they can't even speak for themselves, they can loss control of their bladder, having to take unwanted medication and every other aspect of their life seem to be lost to HG.

And ironically, pregnancy is a time of life when we want total control over our bodies, we want to be able to avoid smoking, alcohol, GM products, medications, bad moods and anything else deemed potentially harmful to developing foetus's by every man and his dog. We are encouraged by the mass pregnancy media producing over-priced magazines designed to encourage yet more consumerism and stress that our bodies are temples housing precious royal goods and that pregnancy should be natural, happy and oozing with glowy stuff.

Of course for the HG sufferer it's anything but... it's full of spew, medication and misery. It's generally considered the worst time of a sufferers whole life!

So, how can we prepare emotionally? Well, by preparing physically, like I talked about in previous posts for medications and practical considerations, you're making a good start with the process of embracing what's to come. Don't shy away from it. Grab the bull by the horns and tame the that beast. Accept that no matter what medication you use to suppress the symptoms to a “manageable” level, you are still going to have a horrendous nine months. So prepare for that:

• Buy yourself a set of sick bowls

• Make yourself a 'going out' sick kit, unscented wipes, sick bags, tissues, gum or lemon drops etc.

• Load up your iPod with some audio-books, download some easy apps like solitaire

• Buy yourself some comfy maternity pyjama's

• If your back sufferers from the long hours in bed then can you afford a new mattress? I got a memory foam one before my third pregnancy and it really helped relieve the pressure areas and hip pain.

• Perhaps a new pillow or bed sheets?

• Accept that you're likely to wee when you spew (it starts earlier each pregnancy!) and get yourself some pads in advance.

There are links for some of the above items on my HG Shop page so check it out.

The other major aspect of preparing mentally and emotionally for hyperemesis gravidarum is to build up your support network in advance. In particular, join the Pregnancy Sickness Support forum and 'meet' lots of other women at the planning and preparation stage like you. Although the charity can't match sufferers with volunteers until they are actually pregnant (due to a lack of resources) you can get make a start yourself through the forum. The HER Foundation also have a forum for the USA although I would warn you all now to be wary of some of the nutty groups on Facebook which advocate all sorts of wacky ways to “prevent” HG. Also, please don't be wasting your money on nonsense treatment plans claiming to cure HG... they are not based on science and have no evidence for safety or efficiency behind them.

Our book Hyperemesis Gravidarum – The Definitive Guide is out in September and is packed full of the info you need to survive and, hopefully, thrive through the long nine months of an HG pregnancy. You can sign up for an email about it's release here.  

There's been lots in the news this week about regular old Morning Sickness, as experienced by up to 80% of pregnant women. The knowledge that morning sickness can be a sign of a normally developing foetus is not new, but a study from Canada out this week claims that the babies of women with morning sickness may be more intelligent and have a lower risk of birth defects as well.

Now, I'm not going to get into a discussion about the funding of the research or about the fact that of the 20% of women who don't get morning sickness there is a higher incident of smoking which, probably because it reduces effective blood flow across the placenta, is known to reduce the sickness symptoms and there is likely a correlation between mothers that smoke and less intelligent babies, increased abnormalities and miscarriage... Mainly because I can't be bothered right now to dig out all the references to back up such a discussion... (Note to self... plan and pitch literature review on above theory to medical journals...). But I am going to write about why the difference between Morning Sickness (MS) and Hyperemesis Gravidarum (HG) matters and why studies like these do more harm than good.

The British, nay world, press seem intend on referring to the Duchess of Cambridge's admission to hospital in 2012 as “Acute Morning Sickness”. She in fact had Hyperemesis Gravidarum, a definition of which includes the need for IV hydration. Now I don't claim to have any idea of how much or little the Duchess suffered but the fact that she suffered at all indicates to me that she deserves sympathy, support and recognition of the condition. Her public appearances later in pregnancy imply that she was prehaps one of the luckier sufferers who responded well to treatment and recovered mid-pregnancy to go on and enjoy an otherwise normal experience. About 40% of hyperemesis sufferers follow the same pattern while 60
% suffer symptoms to a greater or lesser degree until the baby is born. Either way, she had HG.

The problem with referring to the Duchess of Cambridge's condition as acute morning sickness is that it undermines the condition she actually suffered with, which the study I refer to above clearly is NOT about.

Far from indicating a healthy and progressing pregnancy with extra intelligent babies, HG can lead to a host of complications and untreated is extremely dangerous for both mum and baby. Malnutrition, dehydration, increase risk of DVT, mental health complications, small for weight babies and placental abruption are all complications associated with HG. Furthermore, a huge amount of wanted babies die from HG, almost exclusively through neglectful medical care.

Why is medical care for HG so neglectful? Because it is lumped in with morning sickness and doctors use studies like these “oh morning sickness is a good sign” as an excuse not to treat this serious complication which is as far from morning sickness as a sprained ankle is from a broken femur!

Woman's Hour on BBC Radio 4 this morning did a piece on the study from Canada and during the show they, like every paper that's reported it too, mentioned that the Duchess of Cambridge had suffered extreme morning sickness; the implication being that this study was therefore relevant to her condition (and Prince George is likely a genius – no pressure lad!). Not once in the piece did they mention hyperemesis gravidarum or the dangers of the extreme end of the spectrum. The piece playing straight into the hands of the “oh it's just a bit of morning sickness... get on with it” camp. And will have been great for all those who walk around thinking “I had morning sickness, I just got on with it, I don't know why some women make such a fuss”... now they can add “it's good for the baby” to the list of ignorant, insensitive comments.

Across Britain today alone hundreds of women will present at their GP's or contact their midwives or head to A&E because their symptoms are miles beyond the parameters of morning sickness. I sincerely hope they are not met by medical staff who have read the papers or listened to Radio 4 and believe therefore that their hyperemesis is a good thing. I wonder how many women being kept alive by strong anti-emetics and IV fluids will get calls and texts from friends and relatives saying “Oh I heard on Radio 4 that your sickness is a good sign... your going to have a genius”. And in that moment their loneliness and isolation will increase ten fold as they try to explain yet again that they do not have morning sickness.

And it's not just the women on the extreme end of sickness that I feel sorry for on this one... Women who don't feel sick at all (and don't smoke) have now got more to worry about. Not only have they now got the added worry of defects and miscarriage but according to this study their babies are likely to be more stupid than the average person (because surely if up to 80% of women suffer morning sickness then their babies are “the norm” rather than above average??? Obviously I don't think that, I'm just demonstrating how easy it is to manipulate the message).

For goodness sake, can we all please stop having a go at pregnant women... Lets do some proper research into actual stuff, like how we can reduce the wanted pregnancies lost to HG (nearly 10% of pregnancies, which equates to 1,800 per year in Britain). Or how we can treat the symptoms more effectively and reduce the long term effects of the condition for both mum and baby. Or how we can prevent the severity of symptoms through effective pre-emptive planning.

I can appreciate the “news worthiness” of stories like these but for goodness sake, lets start studying and reporting stuff that actually matters!

“Triiing” went the text message alert on my phone as I cleared up the breakfast stuff and ordered the kids to get in their uniforms. I glanced at the screen... “I'm pregnant” said the message from my good friend, Sarah. She's married with one child already, an 18 month old and she loves being a mum. “Oh no” I think “poor Sarah” as I read the rest of her text. She's devastated, scared and she is beside herself trying to figure out how she is going to survive the next nine months. I know how much she desperately wants another baby and I want to congratulate her, but I can't, it would be insensitive, instead I reassure her that she is not alone and I'm here for her every step of the way.

You see for women with a history of hyperemesis gravidarum, no matter how much you want another baby, the reality is that the moment the test shows positive you feel like your world is crashing around you... nine long months of severe illness lay ahead. That exciting time that most women experience when they find out they are pregnant is replaced with a torturous wait to see just how sick they are going to be.

Instead of planning a healthy diet and shopping trips for maternity clothes, women with hyperemesis are planning how they will manage childcare if they are admitted to hospital, how their finances will cope with nine months off work, how their toddler will cope emotionally if mummy vanishes from view. And that is assuming they can afford childcare. How will they cope with a toddler at all if they are throwing up continuously for hours on end? What if they physically can't stop throwing up long enough to fix some food for their toddler, or change his/her nappy, or keep them safe?

It's a scary time to say the least and for me it was probably the most stressful time of the whole pregnancy... waiting to get sick.

And then in a perverse twist there is the emotion and stress involved in not getting sick. Because in reality women with a history of hyperemesis have an 86% chance of suffering again so while we can “plan for the worst and hope for the best”, the experience of not getting sick can be utterly nerve racking! It's why we all hope for a bit of “morning sickness” when we get pregnant for the first time, it's reassuring and makes you part of the secret early pregnancy club. But for women who develop hyperemesis gravidarum it rapidly turns into a nightmare not just for this pregnancy but for every pregnancy thereafter. You want the reassurance of a progressing pregnancy but knowing what's in store for you is utterly terrifying.

Returning to the ensuing text conversation I understood only too well the confusing mix of emotions my friend was experiencing. Having been through this particular period three times, one of which the sickness never came and the new life was not to be, I get the strange juxtaposition of the wanting-not wanting sickness causing an internal battle. I understand the overwhelming rush of plans running through her head about preparing nine-months worth of meals, thinking about childcare options, working out finances. I feel the profound sadness experienced looking at your beloved toddler and knowing how much you will miss them over the next nine months. And the confusion of emotion over how much you love them and that it was “worth it in the end” but that you don't know it will be again, questioning will you love another as much as you love them.

I thought about what practical things I could say at this point and I replied with reassurance that she can get through this and is not alone; I'm here for her and I know lots of other women are too. Prepare practically and try not to dwell on projections of what the next nine months might entail. Enjoy the next few days before the sickness kicks in. Enjoy the time with your little one, but prepare mentally for the separation; know that they will be okay and remember that they will have you back in nine months time along with a new sibling.

I am, of course, posting her out the HG calendar I've produced as ticking off the days even at this point can really help make the time seem shorter. Unfortunately I live a blinking long way away from Sarah so while I can't provide practical help with freezer meals and so on I will be texting regularly and phoning while she's still able to speak on the phone.

If you have a friend with a history of hyperemesis gravidarum who is at the point of embarking on another pregnancy then try to appreciate this challenging time of mixed emotions. Rather than comments about “You might not get it this time”, “think positively” or “well you know it's worth it now” try simply asking how you can help, what support she needs and think about what support you are able to provide. Try to appreciate that while you're excited for her and want to congratulate her, she is feeling scare and wondering if she'll be in hospital next week hooked up to a life saving IV drip. Cull the enthusiasm about the end product and appreciate that the news is akin to your friend telling you that she has a serious illness and will be battling treatment for the next nine month.

That's not to say you can't congratulate her, I'm sure she will appreciate that you are pleased for her. Just follow it up with an appreciation of the severity of hyperemesis gravidarum and the need to survive the next nine months. Save the bulk of the congratulations for nine months time when the double whamy celebrations of baby's arrival and the end of HG really are party worthy.

As I'm sure you've picked up from my frequent mentioning of it, I've co-authored a book all about hyperemesis gravidarum. It's called Hyperemesis Gravidarum – The Definitive Guide and in it there is a whole big chapter all about planning for a hyperemesis pregnancy. About 10,000 words on the subject, which is far beyond the scope of a blog post. So, the first practical thing you can do is wait until our book is out (hopefully by September but sign up for updates about it's progress on The Book page) and then buy it!

However, if you can't wait that long or are already embarking on another round of the long nine months then here are a few tips and practical things you can do to prepare for what lays ahead. For medical preparation and pre-emptive treatment see my last post (part 1).

First of all, get fit and healthy. Some women prepare by deliberately putting on a bit of weight so that they have some to lose but I would only recommend that if you are currently under weight or on the lower side of healthy. Ideally for an HG pregnancy you should be starting out at the upper end of a healthy BMI, around 23-24.9. Use this calculator to work out what you currently are. If you are currently a little overweight then I wouldn't worry too much before embarking on HG, but obesity (BMI over 30) is known to reduce fertility so it's a good idea to get down to a healthy weight. The fitter you are going into a tough pregnancy the better and hopefully you'll find it easier to recover from it after.

Secondly, prepare your household. The ideas I have for this are almost endless and could almost fill a whole other book! Look at the main factors you will personally struggle with and try to prepare for them.

• If you tend to do the food shopping and preparation for your family then could you set up online shopping delivery and stock you freezer with masses of pre-prepared meals for your partner to warm up?

• Are you the only member of the household that knows how to use your old washer dryer that the instructions have worn off from? Could you write out the instructions?

• Does your partner know where the vacuum bags and spare light bulbs are? Do you sort out paying bills and if so could they be done by direct debit?

• Will the car need an MOT/tax/insurance sorting while you are ill and if so does you partner know where all the details needed for that are?

• Stock up with unscented washing powders/soaps and so on.

• What help at home can you afford, if any, ie. A cleaner or a laundry service.

Thirdly, if you already have children then you need to address childcare. I know a number of women who simply can't afford childcare at all and therefore have to cope at home. Which is fine if they can, up to a point... what if you get admitted to hospital? Will your partner have to take time off work to look after them and if so will that cause a problem with their employer? So what's you're plan B...

If you have relatives nearby or can afford a nanny then great but if not then how about local nurseries or childminders, do they have long waiting lists or would they be able to accommodate a last minute booking? Do any families nearby have teenage children who can help with some babysitting at the weekends or after school (a cheap option for sure)? The key is to think about what options are available locally for your needs and budget so that you're not trying to come up with solutions whilst on your way to hospital.

As I said a the start, this is just the tip of the preparation pile and I could literally write thousands more words on the subject but these are certainly the main areas to address if you're at the preparing point now.

Next time... preparing emotionally and psychologically for hyperemesis gravidarum!

Okay well you know I'm not one to beat around the bush and it's recently come to light that this is a topic that needs rapid addressing for my audience! I conducted a quick survey on a “survivors” group on Facebook to get a gist of the key issues couples are facing in the bedroom post hyperemesis gravidarum to cover the subject in the book. Goodness me! I was almost in tears reading some of the problems women and their partners are facing.

As much as I would like to say wait to buy the book I feel there is a more urgent need for some of my HG friends to get support and help with this important aspect for their sanity and relationships.

Now I know sex isn't the be all and end all of relationships and I've talked before about partners sorting themselves out while their woman is suffering, but sex is important. Or rather intimacy is important. An intimate-less relationship is far more likely to start deteriorating and crumbling than one in which an active life in the bedroom is regularly enjoyed.

It's not uncommon for a couple's sex-life to decline somewhat after normal pregnancy and birth for a whole host of reasons. But fear of pregnancy and lack of confidence in contraception is totally understandable after a pregnancy which nearly killed you. However, fears and anxiety need to be dealt with, got in perspective and brought under control... otherwise they control you and can ruin your life (and that of your partner).

I'm no expert and I'm not a sex therapist or marriage guidance counsellor so over the next month or so I will try to track down someone who is to do a post with some “official” advice. But in the meantime I'm going to dole out some advice which I reckon surely must help and certianly can't do any harm...

First of all, TALK TO YOUR PARTNER!!! Get the kids to bed, open a bottle of wine, turn the goddamn TV off and talk... Don't book a babysitter and go out for a date-night to talk as you're likely to feel very self conscious in a restaurant or pub and it may get emotional so stay at home. Tell your partner what's worrying you and how you feel about it. A number of women said they “feel like a failure as a woman and a wife”. Tell your partner... I would bet money on the partners responding that they too have been feeling like that! If it would help then write down key points before hand.

Next MAKE A PLAN TOGETHER. This needs to be a team effort and needs to incorporate both of your needs within your comfort zones. There is a whole load of intimacy that you can engage in which won't result in pregnancy. Mutual masturbation, oral sex and plenty more which will make you feel closer as a couple and help you regain the closeness needed to go on to enjoy penetrative sex.

Your plan might include:

• Going together to the doctor or practice nurse to discuss contraception you can feel confident in.

• Agreeing to turn the TV off ever other night for two weeks and going to bed early to work on your sex life.

• Kissing and cuddling more often.

• Talking about sex openly with each other and talking about the anxiety and fears remaining from the pregnancy.

You could start with agreeing you won't have penetrative sex for a few weeks but focusing on pleasuring each other in lots of other ways. You could also look to build confidence in your body if you have issues around that – your partner clearly taking pleasure in your body is a pretty big boost generally. Women's bodies post baby are never the same as pre-baby but they aren't meant to be and mature men are naturally attracted to their partners bodies post-baby... you grew his offspring in there!

Maybe talk about fantasises and reminisce on pre-baby antics from your relationships early days. Play games, dress up, bath or shower together, get outside, wake each other up, HAVE FUN!

The purpose of all that is to build confidence and intimacy but ultimately if you are still very anxious about sex then book into see a counsellor, either on your own or as a couple. Ultimately, if you are careful with contraception so you can't get pregnant then your fear is bordering on irrational and is becoming a phobia... that needs addressing promptly so it doesn't get out of control. If that is the case then please GET HELP.

Finally I'd like to add that it's not always the women who are fearful of pregnancy and therefore nervous or anxious about sex, our men folk can be just as traumatised by hyperemesis gravidarum and scared that if their partner got pregnant again they would not be able to cope or that she might even die from it. They need as much support and understanding as if it were the other way around.

It's bad enough that hyperemesis gravidarum ruined your pregnancy and perhaps limited your family. Don't let it ruin your relationship or any more of your life.

Links for further help:

Relate offer marriage and sex counselling

My co-authored book, Hyperemesis Gravidarum – The Definitive Guide will have further information and support. It is due for release this Autumn.

Amazon offers a whole host of books about improving your sex life

Well sorry for the short absence folks, I've been gallivanting around Yellowstone National Park in America still riding the no-more-HG high two years on from my final bout!

Now down to business. As promised, I'm going to discuss preparation and planning for hyperemesis gravidarum in the next few blog posts (bar something topical arising). Once you've made that hard decision, as discussed in a previous post, the next crucial thing is planning how the hell you're going to survive the dreaded nine months you need to endure to get your precious bundle of joy, aka the End Goal.

As I sat on the floor of the wood cabin we are staying in on a Montana farm this evening, gently stroking the forehead of my third and final End Goal in an attempt to get the, ahem, little monster, to sleep next to her equally monstrous (and still awake) End Goal Siblings, I thought about this post and the order in which I should discuss the different aspects of preparation. The way I see it there are three main aspects to preparation and planning for hyperemesis gravidarum. The first, which I will discuss in this, already long winded post, is about your medical care and pre-emptive treatment. The second is practical considerations and the third is emotional support – I'll address these later two over the next week or so.

This blog originated after my husband and I had made the difficult decision to have a third baby despite hyperemesis gravidarum. The condition from my husband was that I do more research than I did for number two and that we are better prepared than before. So I did and you can read that story way back in the archives from 2011. That pregnancy was better than the previous two by about a thousand miles, entirely down to careful preparation and planning, which is why I now harp on about it so much!

So here is the key... if your GP is rubbish and won't make a pre-emptive plan (like mine was), then switch doctors, switch practices if needs be, but find a doctor who is willing to make at least a basic plan in advance. The doctor I found in a practice in the next town along was brilliant (Dr Tullberg of Carnewater Practice in Bodmin). Empathetic and kind, she was all for being pro-active and having a plan in place. She knew I had read plenty of research and could tell I knew all about the various treatments. She believed me when discussing what had and hadn't worked before and listened to me regarding what was personally tolerable.

Together we made a plan for which drugs to try and when, which we were both happy with, ie. I was happy with the medications and side effect and she was happy to prescribe them based on current evidence. Also planning when to move onto the next 'level' of treatment and at what point admission to hospital would be deemed necessary. She weighed me and took bloods so she would have 'base lines' to compare to and aid decision making. And she made note of which adults she could discuss my condition with (ie. My husband, the nanny we employed and so on). After all this she told me she would discuss the plan with the other doctors at the practice as she only works three days a week and would ensure they all knew there was an agreed plan to follow. The plan was fully documented on my electronic medical notes.

When I finally got pregnant we re-noted my weight etc. as it had altered (by that I really mean increased) since the plan had been made and she reminded the other doctors about the plan. I was also able to communicate with her via email, which when sick is really quite convenient.

The pregnancy was drastically better than the first two, I was still pretty sick, housebound and miserable. But I got downstairs almost every single day, I ate and drank almost every day. I had one very brief spell in hospital when a down hill spiral happened quickly at 17 weeks and I hadn't managed to get on top of it but that was it. During that pregnancy we moved house and I worked on and launched the current Pregnancy Sickness Support website and support network... whilst pregnant from my sick bed. In my first two I couldn't even consider looking at a computer screen let alone populate an entire website and I couldn't get out of the house let alone move house!

“So what was this wonderful plan?” I hear you plead...

Well after the End Goal arrived safe and sound, the wonderful Dr Tullberg and I set to work formalising the plan we had made into a more accessible plan for others to use. Doctors don't like a lot of paperwork so it's as short as possible but accompanying it is a worksheet for you to do before you approach a doctor so you have your own head clear about how you want to tackle the hyperemesis and there is a sheet with all the references and additional info needed to back up the care plan. Remember to approach your doctor with empathy for how tough their job can be, the responsibility of prescribing in pregnancy and so on. Your aim should be to build up a 'team approach' rather than going along to 'demand' what medication and treatment you want. But if the doctor is very dismissive then forget them and try another. Switching practices is easy so don't be put off.

The Care Plan and accompanying documents are available to download and print from the Pregnancy Sickness Support website by clicking here. It will also be available in the book I have co-authored with PSS colleague Amanda Shortman along with lots more information and tips about planning for hyperemesis gravidarum, which will be available to purchase this Autumn. It's called Hyperemesis Gravidarum – The Definitive Guide so keep your eye out for it and watch out for my next post about the practical considerations for hyperemesis gravidarum.

There seems to be increasing speculation about the Duke and Duchess of Cambridge planning another baby and I'm getting calls and emails for interviews on the subject due to the Duchess's history of hyperemesis gravidarum. Honestly, who would want to be famous eh... The pressure for that poor woman to have to go through hyperemesis again is appalling! It's bad enough that she doesn't seem to have a choice about whether or not to go through it again... She can't even do it in her own time scale! The media seem to be demanding she get on with it and her baby is only 10 months old.

"Every pregnancy is different and she might not have it again" I hear from the uneducated camp... Well I'm all about education so let me tell you the fact of the matter. Once a woman has had hyperemesis gravidarum she has an 86% chance of getting it again in subsequent pregnancies. So it's not a factor to ignore when thinking about timing of subsequent pregnancies.

Let me spell out for you just what the decision for the average women with a history of hyperemesis gravidarum is like... You're not just deciding to have another baby, as if that decision on its own is an easy one for responsible people that factor in finances, quality of life, work balance and human population issues into the decision about bringing a new life into the world. Women with a history of hyperemesis gravidarum also have to think about the fact that they will miss out on up to nine months of caring for their first beloved child. They have to consider how their family finances will cope while they are off sick (admittedly not such an issue for the Duchess but her public life role is a very demanding one and difficult to take time off from). Who will look after their child while they are sick, how will their partner cope if they are admitted to hospital, who will cook tea for them after work, who will sort all the washing and cleaning and other household tasks that just don't happen when a woman is sick.

Many women worry about the emotional impact on their first child who suddenly is without mum for months on end and it can be difficult for them. There will be times when the smell of their first child induces retching and vomiting which is really distressing. Then there is the relationship strain as partners are forced into a single parent role for their child and nursemaid to their loved one who is suffering horribly. They too may be relegated to a spare room due to the blood hound nose of an HG sufferer. And the pressure on friendships which turn out not to be so strong in times of need or the tensions it raises with relatives who don't "get it" and can be insensitive to the battle.

But most of all it's the choice to put yourself through the absolute torture that is hyperemesis all over again. It's the knowing just how sick you will be and remembering the constant torture of nausea night and day for 280 days. The weight loss and feelings of malnutrition and dehydration and the dizziness, headaches and pain that those cause. It's the knowledge that the drugs only help a bit really and that most of them have side effects that are almost as unpleasant as the vomiting anyway. And that's only if you can get the treatment you need in the first place as many women in the UK are still denied proper treatment for hyperemesis.

It's knowing that you'll go weeks or months unable to shower without vomiting, unable to brush your teeth without gagging, retching and more vomiting, that you'll have 24 hours to pass for each of those 280 days where it feels you are utterly alone in your nauseated nightmare. Some days getting out of bed will be impossible, other days just rolling over in bed will be difficult.

So you see it's not an easy choice to make. Nine months is a long time to be sick for. But many (by no means all though) of us do choose to go through it again despite the nightmare ahead once the decision has been made. Why? Because ultimately it is worth it in the end if we want more biological children and we are willing to suffer hell and back for our children. Although sadly for many women the ability to survive another hyperemesis pregnancy is impossible, whether that's physically, mentally or financially and their families are therefore unwillingly limited - for them family, friends and society generally needs to be supportive and drop the "pressure to produce".

We all hope to be one of the 14% of sufferers who go on to have a normal pregnancy after hyperemesis but those chances are slim and that's why planning and timing are important. Plan for the worst, hope for the best is my motto. If your careful planning and preparation aren't required and you fly through the pregnancy then brilliant, no harm done than a little wasted time... But if hyperemesis stricken again then being prepared is absolutely key to survival.

Remember, making plans and preparation for the worst is not going to increase your chances of suffering but it may reduce your suffering if hyperemesis strikes again and make the nine months easier to cope with.

Over the next few weeks watch out for posts specific to planning and preparation for hyperemesis gravidarum for both women suffering, their families and healthcare professionals caring for women with a history of HG.

I've been advising a friend of mine this week who works for a big, well known supermarket in the UK and is being treated unfairly due to pregnancy sickness. Like 30% of pregnant women she has needed to have a few days off work because she's spewing up constantly. Now I don't know about you but I don't particularly want people spewing up at work in the supermarket I shop in... Clearly she needs to be off for a bit.

But her employer is being difficult about it and saying they may have to look at disciplinary action if she phones in sick again... Despite knowing that she is pregnant. This is a depressingly common story and is an unacceptable situation! They are also threatening to demote her from her role, which is outright illegal!

Rest is an important part of self managing pregnancy sickness and for some women could prevent symptoms escalating into full blown Hyperemesis Gravidarum. In the UK we are entitled to take time off work for sickness and we are also entitled to not be discriminated against or treated unfairly when pregnant. Obviously your employer needs to know you are pregnant for your rights to be triggered so it's a good idea to tell them straight away if you are phoning in sick due to pregnancy. It can't then be recorded on your normal sickness record or used against you in disciplinary or dismissal cases.

Women have always had a tough time when it comes to employment rights and there are still sectors today where we earn less than men. But if government and society want women to work outside of the home and also to continue populating the world with people to continue the human race then they need to start treating us better in the work place!

Personally I was so lucky with my employers during my pregnancies. They were very supportive and kind... Working for NHS GP practices as a nurse you would hope for good practice although I know other nurses and even doctors who have suffered terribly at the hands of their employers.

It's not just the women suffering that can face discrimination either. A good friend of mine's husband lost his job during her second hyperemesis pregnancy as he had to take time off work to care for their first child while she was in hospital! Imagine sacking someone because his wife is in hospital... What sort of society do we live in?

So what can you do if you are having problems at work? Know your rights and let your employer know that you know them! Print off the information for employers from the PSS website and give it to your manager along with your sick note. Read the page for employees too, there are links there for where to get extra help from Citizens Advice and Maternity Action. If fighting for your rights yourself is too difficult when you are sick then perhaps ask your partner or a relative to advocate for you. Get them to explain the situation to your manager - they can say they've been looking into entitlements and so on in a gentle way that hopefully won't make your return to work awkward. Like with doctors, it's about trying to form a partnership with the employer so that they feel like you are being proactive and not just difficult.

You also don't need to feel like you have to take action whilst still sick. If your employer treats you unfairly during pregnancy then once you are recovered and have the strength you can then take action to exercise your rights and claim compensation.

We need to start standing up to the prejudices and unfairnesses we experience so that society can improve and develop for the good of our daughters and granddaughters. Illegal practice needs not just to stop but to become socially unacceptable and no longer tolerated by women the way they are now. It is small minded bosses and colleagues who have never actually been ill themselves that perpetuate myths and nonsense about women in employment and pregnancy sickness... Education and action is the way forward.

I'm currently living for a couple of weeks with my husband and kids on a Stone Age living skills centre in the depths of the Colorado Rocky Mountains. We're sleeping in a tent despite the snow and there are bears, mountain lions, coyotes and all sorts of other wild animals padding past us each night while we sleep. In the day we collect firewood and edible plants for dinner, practice making fire by friction and our knife carving skills. Most days I try to nip down the road to get some Internet connection in order to check my emails and respond to the more important ones... Mainly those concerning hyperemesis gravidarum sufferers, past, present and future.

Today my 6 year old son achieved something amazing. He carved a spoon from a piece of wood using his pen knife. It has taken him three whole days of fairly constant work. He has blisters on his little hands and his arm is aching. But it was worth it. It is beautiful. And it is practical! Rob and I supported him, we helped a little with the curvy neck bit and I gouged out the bowl with the finger slicing crook knife but mainly we just supported and encouraged. I am so so so proud of his achievement.

He really persevered with the task, through the tough bits and the cuts and the sores. Early on with his lump of wood - a half log you would throw on the fire - it didn't resemble a spoon in the slightest and the task looked almost impossible, he didn't lose hope. He just sat by the fire and pressed on. And with each stroke of his knife on the hard, dry wood the spoon came a little more into his sight. In the middle, when you could sort of see the shape but there was still an awfully long way to go doing more of the same, he didn't get bored, he kept on carving, through snow and wind and hail. Towards the end when the spoon shape was there but he then had four rounds of sanding to go before it was finished he didn't give up, or try to rush through it. He worked carefully with the different grades of sand paper to get the beautiful smooth finish it deserved.

When it was finally finished I helped him carve an A on the top for Alfie, we stained it with charcoal to show it up. We washed the spoon, oiled it and he ate his dinner with it tonight. And as he ate with his hard earned spoon I looked around at my three beautiful children. Perseverance paid off.

I will continue to persevere on behalf of hyperemesis gravidarum sufferers around the world until I have achieved my goals. This Thursday, 15th May, is International Hyperemesis Awareness Day, it is also my daughters 2nd Birthday. I am raising awareness here on the Stone Age Living Skills centre with a Big Brew event of tea, cakes and talk. For those of you still pregnant, just focus on persevering, but for those of you who have suffered in the past... Persevere with me.

It's no wonder Alfie worked so hard and endured so much for his spoon... He's a Hyperemesis Survivor!

How to get an under-appreciated and misunderstood condition the recognition it needs to get respectful and effective treatment for sufferers... blog about it. And keep blogging and blogging and blogging. That's pretty much what I'm doing, as well as helping to run a charity to support the condition and writing a book on hyperemesis gravidarum.

My prolific blogging has lead to a couple of unexpected turns for me. I have, much to my surprise and deep honour been nominated for not one, but two prestigious blogging awards... proper ones with ceremonies and all!

The exciting thing about these awards is that it really does draw so much attention to hyperemesis gravidarum and the desperate need for improvement in care and treatment for it. As all you regular readers know this blog is all about highlighting the reality of hyperemesis, speaking out against poor care and promoting best practice, as well as providing support and strength to sufferers and their partners. And ultimately furthering the Hyperemesis Improvement Movement. So the more people that see it the more people will understand and appreciate the impact of hyperemesis gravidarum on sufferers around the world.

The MAD Blog Award category I've been short-listed in is for Outstanding Contribution and it's not a category you can vote for, it's up to a panel of judges. Despite being on a year out travelling with our children around North America my husband has kindly supported my desire to return for the award ceremony in September and I have booked flights from where in Canada I think we will be at the time so I'm all set to return – fingers crossed I win now!

The Brilliance in Blogging (BiB) Award I've been short-listed in is Commentary and Campaigns and for this I need your help... to get into the finals I need as many votes as possible. Click on the link below or above and vote for this Spewing Mummy Blog to win the Campaigns and Commentary category.

Getting through to the short-list for this is such an honour already but to actually get through to the final or even to win would be incredible. The awareness that can be raised for hyperemesis gravidarum would be phenomenal. The winners are announced at the Britmums live event in June where thousands of parent bloggers will be watching, this is our opportunity to let all of them know about hyperemesis and the horrific truth about the suffering it causes.

Thank you all my loyal readers, I truly appreciate your support.

Oh and if you are heading over there to vote then bear in mind that my colleague, friend and fellow HG veteran Emma Edwards (newly appointed trustee of PSS) has also had her Adventures of Adam blog nominated in the “fresh voice” category. She wrote a guest post on here last month about the toddler activities for mums suffering hyperemesis gravidarum she features on her brilliant site. So be sure to vote for her in the fresh voice category too and we'll have HG awareness wrapped up at the BiBs!

In the third of my series about how you can make a difference to hyperemesis sufferers now and of the future I will talk about peer support systems for hyperemesis gravidarum.

Way back in my first pregnancy, bar a yahoo group which seemed to be fizzling out, there was no peer support system. Facebook was in it's infancy, although there was a small American group I joined called “Hyperemesis Gravidarum, when it's more than morning sickness”. The lack of support was perhaps the hardest aspect of the pregnancy, apart from the obvious constant vomiting. No one around me seemed to understand apart from my husband who was witnessing it first hand and was as equally scared, confused and alone.

Fast forward to 3 years ago when I was trying again for my third pregnancy and things were changing. Simultaneously I found out about Pregnancy Sickness Support and a UK Facebook group popped up, there were six of us and we grew week on week (it now numbers over 480 members). Numbers were exchanged on private messages so that we could text each other too. It made a phenomenal difference. I was no longer all alone and had a group of women who knew exactly what I was going through... all those mixed emotions of wanting a baby but being terrified of the pregnancy, of wanting to enjoy it but hating every moment.

Facebook support seemed great and I was in mutually supportive relationships with three women that summer... or so I thought. One of them turned out to be a girl, not with hyperemesis gravidarum, but with mental illness in the form of Munchausen By Internet (MBI). Now not wishing to do a post specifically about that, although perhaps I will one day soon, I am telling you this because it explains my motivation to set up a solid, safe and effective peer support network to prevent the months and months of intense support we are all more than happy to provide being wasted on people with ulterior motives.

From this spawned the Pregnancy Sickness Support Network we have today. Women who have been through hyperemesis are able to register to support others, receive training (including on MBI, recognising it and handling it), are fully insured and get ongoing support from the Charity. Women needing support are assessed and matched with supporters who are experienced, knowledgeable and usually geographically close. It's brilliant and it works.

Barr a cure for hyperemesis, an effective support network is probably the second most important development for HG sufferers around the globe. It is the most pro-active part of the Hyperemesis Improvement Movement because we don't need doctors to listen to us, or relatives to shut up about ginger or celebrities to stop glowing in order for us to support each other. Medication can only help so much but support from an army of comrades can get you through the long lonely months of suffering.

Facebook groups are all well and good but my goodness there are dramas and blow ups and women in severe need of support are overshadowed by women who demand attention regardless of need. A group of over 480 women is simply too big to offer meaningful and effective support and too often I witness appalling “advice” being doled out in worryingly persuasive comments. Or I see doctors correct and cautious prescriptions being challenged by women who hold no responsibility and know nothing of contraindications or pre-existing conditions.

So my call to action in this post is this: Get on and volunteer for the cause, support women suffering now and if you are one of those suffering then accept the support we offer... we've been there, we want to hold your hand and text you at night and again in the morning to let you know you are not alone. We can sympathise about the revolting saliva and help you see the funny side of the ginger biscuit comments. We can share our survivor strength and share our wisdom about speaking to doctors. And when you have made it through and have your precious baby in your arms, then you too can reach out to others and support them.

If you don't feel like you have time to commit to formal volunteering at the moment then how about getting involved on the forums where you can offer support in an informal way. Both PSS and the HER foundation have online forums to get involved in. If you are suffering then I would strongly urge you to seek support and advice via these rather than on Facebook. They are moderated by experienced and trained volunteers and you can make online “friendships” safe in the knowledge they've weeded out the trolls and fakes.

In the last year alone the UK Network has grown rapidly although we still have massive gaps in geographical areas and over stretched volunteers. My hope is that 5 years from now we will have volunteers in every city, town and village in the UK... there are certainly sufferers in all of them so I for one think it's an achievable goal... with a little help from my friends?

Here is how you can volunteer:

In the UK or Ireland apply through the Pregnancy Sickness Support website here

In Netherlands get in touch with Rosa Overbosch via her website

For pretty much the rest of the world get in touch with the Hyperemesis Education and Research Foundation.  

Following on from my last post about fundraising I want to discuss how you can get involved with raising awareness about hyperemesis so that our daughters and granddaughters don't have to suffer the same injustices, ignorant comments and inhumane treatment that so many of our generation have.

I can't, however, let this post go by without mentioning the terribly sad loss of Peaches Geldof, who set an example as one of the only celebrities to have suffered hyperemesis gravidarum and to have spoken out publicly about her experience, which was so similar to all of ours despite being wealthy and famous. She experienced the same prejudices and poor treatment that so many of us have and went months without proper diagnosis. I'm so proud that the website I helped develop whilst suffering myself actually helped her during her first pregnancy and that she was able to print info for her healthcare providers to improve her treatment. She has set an example for others to speak out and she took time to promote Pregnancy Sickness Support through her social media feeds, giving us a much needed boost at the time. I had contact with her to discuss patronage for the charity and although unable to accept at the time she had already helped in her own way and gave a voice to hyperemesis sufferers across the country.

Now, moving on to what YOU can do to raise awareness and help with the Hyperemesis Improvement Movement...

First of all, volunteer. Either for Pregnancy Sickness Support in the UK and Ireland or the HER foundation in pretty much the rest of the world. They can offer guidance about raising awareness in your local area and resources for you to use. Hold a Big Brew event for International Hyperemesis Awareness Day, May 15^th and print out information for your guests.

By volunteering for the charity there may also be opportunities to get involved with conferences, research and interaction with local universities and midwifery colleges. Leaflets and posters are available from the charity to distribute at local hospitals and doctors surgeries.

In terms of media awareness, there is the option of talking to local papers and magazines... But BE CAREFUL. They want an angle and they aren't afraid to twist what you say pretty much any which way they want. A friend of mine told her local paper about her horrendous hyperemesis which resulted in a termination in an effort to raise awareness. They sold it onto the national tabloids and she was literally hounded for the next week having “aborted due to morning sickness”. She received hate mail from pro-lifers and her life was made a misery.

A good option if you are already a volunteer for PSS is to make sure you have the “happy to talk to media” button ticked in your profile on the website. A lot of magazines and papers get in touch with the charity to source case studies for articles and we are able to check the angle and quality of press before putting them in touch. In fact, I was contact just over a week ago about an opportunity to have hyperemesis featured in a Discovery Channel documentary. I have spoken at length to the producer and am confident this will be a great thing for the cause. They are looking for a woman currently suffering in the second trimester. Full details and how to get in touch are below.

Please note that this is completely unrelated to Spewing Mummy or my role as a Trustee for Pregnancy Sickness Support and I have no responsibility for the project and outcomes. I am simply sharing the advert to a relevant audience.

Are you expecting a baby? Is there such a thing as a 'straight forward' or 'easy' pregnancy? Do you think you're having – or you're likely to have- an exceptionally interesting or unusual pregnancy?

Few mums-to-be would say that pregnancy is easy or stress-free, but for some women, having a baby presents very unusual challenges.

Cineflix Productions have been commissioned by Discovery to make 6 x 60 minute episodes on the subject of pregnancy (our working title is “The Pregnancy Project”).

We're looking for mums-to-be from all over the world, who are juggling the usual excitement and anxiety of a typical pregnancy, with an unusual situation or condition.

If you're pregnant in an extraordinary situation (for example, you're acting as a surrogate for a family member or having a baby as an older mother), you're experiencing pregnancy with a pre-existing condition of your own (such as dwarfism or visual impairment) or if you have a condition brought on by your pregnancy (like extreme cravings, orhyperemesis gravidarum) - then we'd love to talk to you.

We're also looking for mums-to-be who might have previously been told they were unlikely to conceive due to unusual gynaecology.

From sharing the news with your loved ones, to medical appointments and baby showers – right up to the big day itself - we want to explore the realities – the highs and lows, the excitement and the inevitable anxieties that being an extraordinary pregnant mum brings, and help you share your pregnancy story.

If you'd be interested in an informal chat with a member of The Pregnancy Project production team, please email us on [email protected] 

or call 0203 179 0099– we'd love to talk to you.

(And of course – congratulations on your pregnancy!)

Since my post about making your kids proud and using your awful run in with hyperemesis as a force for change and improvement, for our daughters and granddaughters, I've had lots of people ask how they can get involved, raise awareness and make a difference.

Well there are three main facets to the hyperemesis improvement movement (ooh, I like that!). They are money, awareness and peer support systems. I'm going to cover all three of these and how you can make a difference in depth over the next few days, starting with money. It's an ugly subject, but that's never stopped me before...

Pregnancy Sickness Support is the main UK charity working to improve care for women with Hyperemesis and as a trustee for the charity I can assure you that we desperately need funds. We don't receive any formal funding whatsoever and rely entirely on donations. The HER Foundation in America is in a similar situation. And that's where you lot come in... Get fundraising, get donating and let's give the improvement movement a boost.

Don't know where to start? Well, if organising fundraising events or doing personal challenges isn't your cup of tea then perhaps you could spare a one off donation or a small amount each week or month via direct debit. Click here for a link to Virgin MoneyGiving where you can set up a direct debit which automatically collects gift aid where eligible. As we saw recently with the incredible fundraising effort for Breast Cancer Research, if everyone gives a little it really adds up! Now they made millions over a few days, but if each of my readers in one month gave £1 we would have around £5,000! If you all gave £3 then in one month you would have funded the entire support network for a whole year!

But for those of you who are up for raising bigger amounts with events or challenges then PSS has just launched an event for Hyperemesis Awareness Day on 15th May which you can all get involved in... The Big Brew... organise a tea and cake morning, invite family, friends, collegues, mums from baby groups, random strangers off the street, staff from your GP surgery or local maternity ward and anyone else you can think of, ply them with tea, coffee and cake, tell them about PSS and ask for donations... simples! Awareness and money in one morning (or afternoon/evening or whenever you can manage it). There are even posters, invites, a top tips sheet and other resources available for you to make the day go smoothly. What's your excuse eh? (Okay so mine is the fact that I'll be living in a tent on a stone age living skills centre somewhere in the depth of the Colorado Rockies... beat that!)

For those of you in America you could get involved in the 5k run that the HER Foundation has organised at the end of May. I'm hoping to be in Washington for it myself this year... I even bought to trainers last week to run in although am yet to run anywhere other than after my, annoyingly fast, toddler.

Other things you can do is hold car boot sales, dinner with friends, eBay auctions, personal challenges such as climbing a mountain/running/cycling/sky diving and any other crazy ass thing you can think of. You can even raise money for PSS when you shop online by going to easyfundraising.com first or givingabit.com and by recycling your old mobile and ink cartridges - perhaps your office might be happy to have a box to collect ink cartridges for us?

Another option is to ask for the gift of donations in leu of birth/christening presents as we all know how bombarded with "stuff" you can be when a baby is born, ask for donations instead and if you still end up with mountains of junk then Ebay for PSS!

Without money, charities like PSS and HER cannot even survive, let alone thrive. In fact our support network in the UK only has enough money to continue for another two years with our current funds. Yet we help thousands of women every year, actually, every month! If we all gave a little, just a pound or two then we could easily fund the network for years to come. Money on top of that will allow for research, conferences, education packages, leaflets and information packs to name but a little of what money can buy.

Basically, what I'm getting at is... Put your money where your mouth is. If you suffered hyperemesis and want care and treatment to be better for those in the future then get fundraising or donating... nothings going to happen without money... as sad as that may be, it's fact. Lets get the Hyperemesis Improvement Movement off the ground.

Click here for the article or read on for the story behind it...

A few months ago I was tweeted a link to a MIDIRS (a midwifery journal) article about hyperemesis. It was on the front page and was questioning whether hyperemesis was a “spiritual” condition. The article, which discussed one case study of a women whom personally I would not have considered an “HG” patient at all, claimed that as hyperemesis is neither psyhological nor biological (not sure how she claimed that as there is plenty of evidence of it's biological cause), it must therefore be “spiritual”. I was vexed.

I was still vexed when I happened to be at the Royal College of Midwives conference representing Pregnancy Sickness Support and I noticed that MIDIRS, along with their offensive front cover had a stall a few rows down from us. Duly Amanda (my colleague and co-author on the book) marched over and explained to the poor women representing the publication why said article was so offensive and frankly ridiculous.

The following Monday the editor was in touch asking me to write an article for them. A “patient perspective and how the midwife can help” angle was decided upon and I got writing. I submitted and was met with an incredible amount of edits. Honestly, it needed them... I had written from the soul and with far too much emotion and defensiveness (an inherent quality of many an HG survivor, I find). Edit I did and massively improved the article. The editor and I stood our ground over a couple of points I considered crucial and common ground was found. It also lead me to question my closeness to the subject and prompted my survey back in January.

I am exceedingly pleased with the results and hope that you, my readers, are too. My hope is that every midwife, nurse and doctor that comes into contact with a hyperemesis sufferer will read this and feel inspired to give her the best care possible... so please share the link, as much as you can and lets educate the world...

Click here to access the full text article. Thanks to Essentially MIDIRS for allowing me to share their published article. I look forward to writing for them again.

It's my first son's birthday today. It's six years since my first encounter with hyperemesis finally ended after the longest nine months of my life. It's been the best six years of my life, despite two more rounds of hyperemesis and various other significant trials, none of which felt as challenging as hyperemesis.

I know those of you reading this suffering now wonder how I did it more than once. Those contemplating another, or perhaps newly pregnant with second, will be worrying about the impact on your first and perhaps second child. I did. We contemplated adoption after Alfie was born but decided in the end that we had survived it once and could do so again, better armed and educated. The second was the worst, the third was the best (although I'll talk more about why another time).

I missed out on my first son, Alfie, twice. There were times when he was really little that I could only see him for a few minutes a day and Rob would take him out of the bedroom once I was retching again. Later in the pregnancy he would rub my back and pretend to vomit with me. It was pretty cute really and would make me laugh through the nausea. He and Rob would make cards for me and bring me gifts back from their days out. They were such a little team and Rob now cherishes his memories of those days as a “single dad”. He grew as a person and gained confidence as a father. He potty trained Alfie and got him sleeping in a big-boy bed and he learned to cook and clean (sort of). Alfie learned to be flexible and easygoing. He didn't miss me much when he wasn't with me, the tricky times where when he was with me for a while and then had to go... he didn't like that. But Rob handled it and Alfie survived.

He was so excited about having a brother or sister. I think he wanted to call a brother Potty and a sister Wee Wee (we were potty training at the time!). He gets on well with them now but I think he could take or leave them to be honest (last night Orla climbed out of her travel cot and landed on Alfie's head who was just drifting off to sleep, keen for the morning to arrive... we are living in an Airstream trailer in the Appalachian Mountains of North America at the moment). Have more children because you want them, not because you want to provide siblings.

Alfie is now six years old and he's such a great little kid... He's smart and kind and amazingly capable. Sure he's grumpy and has melt downs and can be seriously annoying and repetitive but he has not been negatively affected by my hyperemesis which spanned 18 months of his six years. He doesn't even remember it now. And I know he will be so proud of me when he is old enough to understand what I do for other sufferers of hyperemesis gravidarum.

We are at the brink right now. The awareness of hyperemesis gravidarum is increasing rapidly. Amazing Green Top guidelines for the UK are being produced soon and our book will be out within a year. More and more hospitals are embracing better practice and care for hyperemesis patients and the media are taking note (I spoke with a producer this week looking to document a sufferers experience for a major channel). Healthcare journals are publishing best practice articles and poor practice is being challenged. We, the mothers of now, can change the situation further for our daughters and nieces and grandaughters... stand up, take action for your children, your HG Survivors, make them proud, set the example, let them know that they can improve the world and add compassion and empathy and care to people who are suffering, not just from hyperemesis but all sorts of misunderstood or under-appreciated conditions.

We talk so much of being proud of our children. Well lets make our children proud of us! Lets make sure that when we tell them about the hyperemesis we suffered during pregnancy we can add “and this is what I did about it... I went on to support other women, I raised money for the charity that supported me, I raised awareness about hyperemesis, I changed practice in my area, I fought for the rights of sufferers, I spoke out about it and advocated for other sufferers”.

Becoming a parent is the best thing I've ever done. It's given me a passion for life and love which I never imagined could exist. My enjoyment and passion for hard work has changed beyond recognition, as has my understanding of it. My appreciation for the important things in life is far more acute now, such as my health, and that of my family. My appreciation for sleep, as with any parent is deep! But I appreciate detail like waking up in the night and not feeling sick. I appreciate my ability to brush my teeth without retching or vomiting every night now. I appreciate being able to kiss and cuddle my children without finding the smell of them stomach turning. I appreciate everyday I have with them, although some of those days it's not until long after they are in bed and I have a glass of wine in my hand that I appreciate it. But most of all I appreciate my voice – when I was sick I couldn't defend myself at all, it was like I was mute, I couldn't speak out without being sick. I felt so weak, helpless and pathetic. Now I can shout at the top of my voice, not just for myself but for the women suffering now. And that's what I've done and I'm doing and I'm going to carry on doing... and one day Alfie and Patrick and Orla will be old enough to understand the work I do and they will be proud.

A common question I get asked is how on earth do hyperemesis sufferers look after and pass the time with their toddler when pregnant again. It's a commonly cited reason for not having another hyperemesis pregnancy. I believe strongly that the key to surviving subsequent hyperemesis pregnancies is in the planning and preparation and the planning for your children is just as important as planning your medication and treatment. So let me introduce my friend and colleague, hyperemesis survivor Emma Edwards who has developed an incredible resource for women suffering with toddlers at home...

How exciting – my first ever guest post!

For those that don’t know me I am Emma, author of the Adventures of Adam blog. I am Mummy to 22 month old Adam and we recently took part in a 100 day play challenge.

In 2011/2012 when I was pregnant with Adam I suffered from hyperemesis gravidarum. Unfortunately my story is typical of many sufferers – hospitalisations, medication, isolation... I also added breathing difficulties and pre-eclampsia to the mix. It wasn’t a great 9 months to say the least! Throughout my pregnancy as I lay there being ill I would think about the adventures Adam and I would have together. I made a promise to myself that once the hyperemesis was over I would value each day. Hence we took part in the play challenge and started our blog.

It was during the play challenge that it really hit home to me - how am I going to look after Adam during my next pregnancy? The idea of being separated from him for nine months petrifies me. In my last pregnancy I couldn’t look after myself for 9 months let alone an active young child. Although I can live in hope, there is an 86% chance that I will suffer from HG again.

I am the administrator for the Pregnancy Sickness Support Forum and I regularly see the concerns of members who are planning another pregnancy or are currently suffering from HG. How do you entertain your other children whilst you are so ill? How do you entertain your other children whilst you are so ill for up to nine months? The guilt they feel is immense.

I asked my HG friend, who is towards the end of her second HG pregnancy, what it is like to go through HG with a toddler. This was her response:

“In a way, the few weeks leading up to getting pregnant were the very worst and most upsetting... dreading the separation, dreading missing having kisses and cuddles and stories and playtime, etc... then at least once I got a positive pregnancy test and became sick soon after, I could be on countdown to being well again and being able to be a proper Mummy to my little boy again.

In the first few months full-time childcare was essential. There was just no WAY I could have taken care of him, at all. Sometimes I couldn't speak to him without vomiting. We had to juggle between two nurseries, close friends and hired a cleaner and an ironing company.

Since the sickness improved (at the midway-point-ish) I have better and worse days. On no days do I ever feel normal, or am able to function at a normal level, but on my better days I am able to interact a bit with my boy and do some (limited) activities/play with him (almost always in the house as travelling, etc. is very difficult).

The nausea is always there but vomiting is under control so long as I don't do too much. On my worse days I need to lie still mostly and have had to rely heavily on CBeebies!”

So I decided to find some sort of solution – a way that could help HG sufferers entertain their children. During my play challenge I started to look for activities which didn’t need any preparation and that a child could play with independently. Minimum preparation for maximum distraction. At Adventures of Adam there is a dedicated section for play activities that are suitable for HG sufferers.

When putting together the activities suitable for HG sufferers there had to be some criteria for the activities to be deemed HG friendly. There is no point doing an activity which involves food or has an odour as these are bound to trigger vomiting. Even the smell of playdough can cause a sufferer to reach for the sick bowl. The activity also had to be mess free - an HG suffer will hardly be in any state to clear away a messy activity.

Please note though that the things which can trigger HG will vary from person to person. These activities are also not meant for HG sufferer at the very early stages of pregnancy. At that stage an HG sufferer will be focused solely on getting through each day and childcare will be a must for their other children.

Adam and I will continue doing a daily play activity and each week we will add at least one play activity which is suitable for a HG sufferer and her child. These activities could also be used for women post pregnancy during feeding time to entertain their older child.

One day I hope to be brave enough to go through hyperemesiss again. For the time being I will savour every moment I have with Adam.

Why not drop by Adventures of Adam and check out our Activities Suitable for HG Sufferers section. You can also follow the fun of Adventures of Adam via Facebook and Pintrest.

I would like to thank Caitlin to share here today. It has been a privilege x

I mentioned in my last post I'm not eligible for the MAD Award category of Best Pregnancy Blog because I haven't been pregnant in the last twelve months.

Thank goodness as if I had I wouldn't have been able to raise so much awareness about hyperemesis gravidarum. I wouldn't have been able to wizz up to Manchester from Cornwall to appear on BBC Breakfast News to talk about the condition, I wouldn't have been able to write articles for numerous magazines, health care journals and blogs. I wouldn't have been able to give radio interviews or talked at the Healthcare Professional Conference I helped organise or host the volunteer conference last summer. I wouldn't have been able to grow the support network for sufferers and increased the social media presence of hyperemesis gravidarum on numerous feeds and blogs. I wouldn't have been able to raise thousands of pounds for the charity supporting the condition or been able to attend the Royal College of Midwives conference to raise awareness. I wouldn't have been able to support all the women I have personally supported through their pregnancies or written care plans for them. I would not have been able to travel to America to discuss international collaboration and providing worldwide support with other organisations. 

But most of all I would not have been able to maintain or write this blog. I did start it during my pregnancy but as followers from the start will remember, posts were few and far between as I was too sick to type. I have only been able to blog because I am not pregnant!

I am now writing a book about the condition which will be published later this year. I hope this book will really make a profound difference to women in the UK suffering with hyperemesis and in fact any degree of bad pregnancy sickness.

Nominations for “Outstanding Contribution” are still open until tomorrow night (21st March) and if you feel that my blog fits this category then I'd really appreciate your nomination, even if you nominated me for the pregnancy category they have said you can redo for this one. It's not for me personally... none of it is (believe me I have plenty more I could be doing with my time, like playing with my three kids), it's all for the sufferers... 

Nominating just takes a moment and you can do it by clicking here. Thank you.

Me at the 5 live and BBC Breakfast Studio in Manchester this time last year... NOT PREGNANT!

Thank you so much to all those who nominated me for the MAD Blog awards. Sadly it seems that because I have not been pregnant in the last year I am not eligible for the category of Best Pregnancy Blog despite being a blog entirely about pregnancy from personal experience. Shame, as it rather discriminates against women with HG who are unable to post to the same degree as other pregnant bloggers during pregnancy – picking my battles and moving on though... It has however given me a moment to reflect on my own experience and how much hindsight I have been able to gain since my third and final child was born, nearly two years ago. It has prompted this letter to myself of the past, to myself while I was suffering and stuck in the miserable cycle of vomiting, retching and constant nausea, to me at a time when I could not see a future with lovely children and new friends... This is to me and to all those who are suffering now, written with the benefit of hindsight.

To my pregnant self,

The three children you have produced are your greatest achievement. They make you proud every day. They also make you cross and happy, frustrated and challenged, worried and confused and they make you laugh, a lot. They are intelligent, funny, beautiful, kind, helpful(ish), sociable, loud and sometime a bit weird (and yes, they like talking about poo and wee a lot!)

I know the vomiting is intense and painful and humiliating and scary, but if you could see them now you would know how worth every moment of pain has been. You are worried you won't bond with the baby but you don't need to worry, the nausea lifts the moment they are out and you will feel great. You love being a parent and the new born phase is easy and fun compared to now.

And it's not just the children that have come from the suffering you are going through. You have new friends and colleagues, not just around the UK but in Washington, New York, New Zealand and all around the world. Although the truth is you will also loose some friends as you realise they will not come through for you when you need them. It may seem impossible now but you will learn to let go of the resentment you are feeling and move on from them... to better friends. Hyperemesis is changing you, giving you perspective and insight. Some people, no matter how close you thought you were will never be able to understand what you are going through.

Your marriage is stronger because you survived hyperemesis three times together as a team. And because you go on to have more pregnancies Rob is a confident father with a close relationship with the boys... he looks after them on his own when you are sick again with their sibling. He is proud of you.

You are a much stronger, more confident and happier person then you were before and that is largely down to the suffering you are going through now. You appreciate feeling well every single day and when you are ill it never seems as bad as you know it will only last a short time. The illness you are suffering made you realise that as long as you have your health you can do anything you set you mind to... including making the world a better place for other hyperemesis sufferers.

During pregnancy you are suffering immeasurably and it is impossible to imagine that anything good can come from it other than the baby, but it does... it really does.

Don't feel guilty about the dark thoughts on black days... they are natural and understandable. Take one day at a time, occupy yourself online, play solitaire and lie still... the end will come and the black cloud will lift... wellness will overwhelm you and you will feel better than you ever have before.

And you will have your children, Alfie, Patrick and Órla. And you will travel the world with them, and your hero, and you will be strong and happy... thanks to hyperemesis gravidarum.

With love and care

Spewing Mummy

Oh my giddy aunt... I've been nominated for the MAD Blog Awards in the “Best Pregnancy Blog” category. I'm blown away and must admit I'm a little naïve about the whole blogging world awards, but I've looked on into this and am so excited about the publicity and awareness that could be raised for hyperemesis gravidarum through this award! But I need a little help from all my loyal readers...

To get through to the finals I need to be nominated as many times as possible... the more nominations the greater the chance of getting through and the more people will hear about my blog and read about hyperemesis.

So if you have suffered yourself, if you've watch a loved one, or perhaps a patient, suffer or if you happen to be a friend of mine (or if you've randomly stumbled on this post and have a spare few minutes) then please get nominating by clicking on the link below and filling in the form by 14^th March 2014...

You all know me well enough by now to know I don't beat about the bush on subjects which are, quite frankly, plain gross. And excessive saliva experienced during hyperemesis is no exception.

It is a little discussed problem and one which many women don't realise is actually common. Suffering in silence thinking they are some sort of salivating freak of pregnancy it serves only to add to the misery. But it is very common for women with hyperemesis and also very distressing. It's so common and “real” that it actually has a name... Ptyalism.

The distress from this symptom is kind of complex. On the one hand the psychological impact of knowing you are already very dehydrated and yet loosing even more precious fluid through excessive saliva production is frustrating and confusing. Then there is the embarrassment caused by the bizarre condition and resulting dribble (a drool soaked pillow on waking from a nap can be embarrassing even when you are all on your own – why is that?). Or the sometimes necessary “spit cup” to be carted around with you to the doctors surgery, by your hospital bed, to the sofa on the rare occasion a friend visits (putting them off returning any time soon).

But what if you don't spit it out... ergh, swallowing it is even harder when you have hyperemesis! If sips of water are coming straight back out then it's likely sips of your own saliva will too.

What can you do about ptyalism? Well sadly there is no actual cure or remedy (although no doubt you could pay someone lots of money who claims to fix it with some sort of mumbo jumbo). So, like most symptoms of hyperemesis, it's a matter of management.

First of all just knowing you are not alone with this symptom will, hopefully, help with the psychological aspect. As I type there are literally thousands of pregnant women in the UK and indeed the world spitting into cups or towels or futilely perusing the cycle of swallow and spew. Perhaps try connecting with a few of them on forums such as Pregnancy Sickness Support's UK forum or the HER Foundation forum in USA. If there isn't already a thread for excessive salivation then start one and share horror stories and coping tips. Honestly, it helps to know you are not alone.

I know a lot of women use opaque cups with lids on to spit into and find that effective. Others use a towel and switch it when soaked. Personally I couldn't cope with a cup full of saliva, the thought of it is making me queasy now and I am a long way from pregnant. I used tissues and put them in a cup... not very different really but worked for me and prevented the imagery that I found so offensive. When you can eat then dry foods might help dry your mouth temporarily and bring some respite. Rinsing your mouth regularly might help and will at least alter the taste. I couldn't cope with full blown mouthwash but used to dilute a little Listerine with water and found it palatable and helpful. Different flavours will work for different people but thinks like lemon water or soda water may be worth a try too. Unfortunately, like most aspects of HG you'll likely find what helps you personally through trial and error.

Whatever you do... Don't avoid fluids in the hope of reducing the saliva... it's a sure fired way to end up on a drip or worse and it won't work anyway.

Sorry I don't have an actual solution for you. If you have any better tips for other readers then please do comment...

We exited the metro station at City Hall as instructed and looked around for the building I'd been sent a picture of the night before. It was easy to spot, the impressive court rooms, not because they are imposing, (they'd struggle to be imposing in New York City) but they are old for this part of the city, majestic, grand and a little intimidating because of their purpose... Law.

Why was I meeting a man, known in my world as a hyperemesis hero, outside a law court? Well, because Lyle Brook is a lawyer with an impressive career of practice and teaching and he now works here as a senior court attorney. But that wasn't why I was meeting him.

I was meeting Lyle as a colleague, friend and comrade in the battle of Hyperemesis Gravidarum. Clearly as a man Lyle has not suffered hyperemesis himself, and unusually nor has his wife. But Lyle is close friends with Ashli Foshee McCall, author of Beyond Morning Sickness and Chronicles of Nausea. In addition to his demanding law career he has dedicated vast amounts of time, money, love and passion into getting copies of Ashli's book as far and wide as possible to any and every woman that needs it. Then he sets them up with local volunteers who have been through it themselves to support and advocate for her. He does this almost single handed on an International scale and at his own expense. That's why I was meeting him.

It's natural to be a little nervous meeting someone you've only had internet contact with and that's escalated when you're far from home and have your whole family in tow. But on meeting Lyle for the first time face to face we were instantly relieved. A classic New Yorker, Lyle doesn't look like a lawyer, he is quirky and the details draw me, such as the vase thick glasses held together with sticky-tape on both sides, I'm intrigued. And as you speak to him he doesn't sound like one either. His life has been a hotch potch of weird and wonderful stories of quirky and famous family members, too many cats and a history of unusual interests and blogs... the tales are enticing.

After a whirl wind tour of the Court Rooms with it's incredible dome ceiling and disorientating circular corridors we headed out into the crisp New York air for a walk over to China Town for some food. We swap stories over chi and chopsticks about cases we've come across and the struggles we've faced in our mutual missions to help every HG sufferer we can. Lyle and Ashli have been going far longer than I and have achieved far more that I probably ever will but the inspiration they provide is so valuable to me and my UK colleagues. It is thanks to Ashli's book that I had the courage to go through pregnancy again rather than opting for adoption. And yet despite having helped literally thousands of women over the years and maintaining hundreds of volunteers across the world, Lyle seems to remember every one of them and all of their stories.

After our lunch we head out for a personal tour of Downtown Manhattan to see the Statue of Liberty, Ground Zero and Wall Street. Lyle carries my son Alfie, with his soggy jeans and wet boots, on his shoulders for a fair old way along the snowy streets and over the deep sloshy puddles at every road crossing. Pretending to bump his head on the traffic lights and scaffolding then transforming into a horse with a cowboy in control. It's a magical afternoon.

But the wonder of wandering New York with this interesting, funny and frankly charming character isn't the only magical element of the day. It's the vision of the future that is created. The increasing ability for international co-operation and collaboration to ultimately help more women and make more changes for care and treatment of hyperemesis around the world. Ashli's book has been a major inspiration for mine and Amanda's book which is nearly finished now and I sincerely hope we can make her and Lyle proud with our work.

Pretty much anything pregnancy related seems to generate the most unbelievable amount of myths and old wives tales. Some are so ingrained in our culture that they are considered norms and are perpetuated by health care professionals despite having absolutely no evidence or truth behind them.

Other myths prevail because they have a shadow of truth in them and these ones have a particular prevalence in hyperemesis care and advice. That's mainly due to the difference between "Morning Sickness" and Hyperemesis Gravidarum being misunderstood.

So lets look at some of the myths we hear, where they stem from and the truth about hyperemesis gravidarum.

1. Every one gets morning sickness, you just need to put up with it

   Where it stems from: About 80% of pregnant women will suffer some degree of nausea and/or vomiting. For the vast majority of these it will be manageable and considered a mild irritation. Some may even enjoy the feeling of “morning sickness” as they feel reassured that the pregnancy is continuing and the baby is well. Some will have moderate to severe nausea and vomiting in pregnancy (NVP) and may feel really rough but still be able to function and get to work even though it's a struggle.

   The truth about hyperemesis gravidarum: only 1-2% of pregnant women will get hyperemesis so it is not a “normal part of pregnancy”. It is not something that women can “just put up with” as it is utterly debilitating and without treatment could even be fatal. Far from feeling reassured by their pregnancy sickness, women with hyperemesis are often terrified by the severity of their symptoms, fearful not only for the well being of their baby but fearful for their own lives! “Putting up with it” and therefore not seeking help could lead to further complications and put mum and baby at risk.

2. It's all in your head, because you are anxious/depressed/don't want the baby/not thinking positively etc etc

   Where it stems from: Historically there had never been suggestions of a psychological cause for severe pregnancy sickness. In fact, as the leading cause of death in early pregnancy it was probably taken very seriously. Until the start of the last century... so what happened then? Well two things happened. The first, great thing, was that Intravenous fluids were invented and anti-emetic medications were invented, which meant women stopped dying so often. The second, awful thing, was the growth of Freudian psychoanalytic theories. These suggested that women were subconsciously rejecting the foetus and making themselves sick. As a result, appalling treatments such as preventing access to bathrooms and vomit bowls where suggested. Women were prevented from seeing loved ones and deliberately left in isolation.

   The truth about hyperemesis gravidarum: The condition is NOT psychological and thankfully this has been thoroughly proven with plenty of research. It does however have a profound psychological impact on the sufferer due to the prolonged, severe symptoms, extreme isolation, lack of understanding and support from others, the stress of financial burden and the constant fear of complications. The psychological impact is further compounded by the cruel suggestions that it is self induced.

3. You'll be better by 12 weeks

   Where it stems from: As mentioned above, about 80% of pregnant women will suffer normal pregnancy sickness and for the vast majority of them symptoms will be over by 12-14 weeks.

   The truth about hyperemesis gravidarum: To say HG will be over by 12 weeks is like telling someone with a broken leg that it will be better in a couple of days. It's not a sprained ankle, and hyperemesis is not a bit of morning sickness. Hyperemesis often improves by around 20 weeks but “improves” is definitely not the same as “stopping altogether”. Although a good number of women with hyperemesis can recover by about 20 weeks and go on to have normal pregnancies thereafter, for the majority (around 60%) some degree of symptoms will continue until the baby is born. This is a major difference between morning sickness and hyperemesis and is one of the most frustrating prevailing myths from sufferers who are faced with comments like “well you can't still be sick, morning sickness stops at 12 weeks”, not just from relatives and employers but from midwives and doctors too.

4. Ginger is the cure

   Where it stems from: Ginger has long been considered a remedy for nausea and there is a bit of evidence out there that taken as a 1000mg capsule of pure ginger extract, it may help mild nausea, upset stomachs and so on. Prior to modern medicine people had to rely on natural remedies as they had nothing else so yes, it has been used for millennia (the earth is round you know!)

   The truth about hyperemesis gravidarum: Seriously... band aid for a broken leg. Women with hyperemesis would love to avoid taking medication if they could. Medication causes huge anxiety for women who are bombarded with suggestions of problems for the baby and if they could avoid anti-emetic medications just by taking ginger then, believe me, they would. In reality, ginger capsules repeat on you and can cause terrible acid reflux which can make symptoms worse and cause pain when vomiting. All other ginger cures, such as ginger beer/cordial/tea, ginger biscuits, pickled ginger and so on are all complete nonsense.

5. No medication is safe in pregnancy

   Where it stems from: The tragic thalidomide disaster.

   The truth about hyperemesis gravidarum: There are a number of safe and effective medications that help the severe symptoms of hyperemesis. Furthermore, not treating hyperemesis with effective medication is far more dangerous and can lead to severe complications for both mum and baby. Medications prescribed for hyperemesis have decades of evidence behind them and even the newer ones which haven't been around for as long have enough safety data to justify their prescription in pregnancy. Besides, as I said before... women only take medication when they absolutely have to!

These are just a few of the common myths I hear on a regular basis and I'm sure most of my readers have heard many of them too. The more you share this post the more awareness we raise and the quicker we debunk these frustrating myths that almost every hyperemesis sufferer has to listen to on a regular basis. They serve only to add to her suffering and isolation and it's about time they faded into history.

Obviously if you can just hole up with your partner, whatever food and drink you can manage at the moment and some gentle Rom Com's then great – do it! However, if doing so risks inducing the wrath of the relatives from far and wide who are utterly convinced that you'll be cured by having your mind taken off it by trivial pursuits with tipsy aunties, then you may need a bit more of a survival guide...

1. Have a think about the comments you are likely to come across and have a few appropriate retorts up your sleeve. That way, on Christmas day when you are faced with your second cousin twice removed informing you how lucky you are to have time off work to lounge around in bed you'll have a quick reply... Oh yes, lounging around a hospital bed with a drip in my arm so I don't die has been such a relaxing break. I'm so lucky to be having to take medication in pregnancy and I'm especially lucky to have been on sick leave from the job I love for so long that we are struggling to pay the mortgage. Hell, who needs a mortgage anyway when you're living on a hospital ward? 
2. Don't sign up to cater. Seriously, rooky mistake peeps... Even if they promise to do it all and assure you that you won't have to lift a finger... it's a trick. If it's in your house you will still end up doing all the cooking and cleaning, you'll have beds to make, loo roll to buy and masses of recycling to sort out after. I learned this one the hard way. 
3. Shop online. Yes we all want to support local shops and mooch round Christmas markets and unique boutiques dishing out free mince pies and Christmas cheer - but there is plenty of years in the future – And by future I mean in about 25 years because you're about to be financially crippled by children so work on your relationship with Amazon, Asda and Argos now, make them your friends! 
4. If you can get it gift wrapped then do. Wrapping presents was a major spew inducer for me, I think it was the amount of arm movement involved. Unfortunately Mr Spewing Mummy is not talented in the art of wrapping and when I say “not talented” I mean he's utterly incapable. He's good at emptying spew buckets though so I really can't complain. If a friend comes to visit or asks if they can help – get out the paper and sticky tape, bingo! 
5. Don't over indulge. If you do have the odd moment of wellness or if you're luckily over the worst at this point just try not to change your routines and systems that are working at the moment. I had relapses after all three hyperemetic Christmas's because I did too much, ate the wrong stuff and didn't rest enough... It's just not worth it. 

The long and short of it though is that Christmas with hyperemesis gravidarum is never going to be easy, unless you happen to have the worlds most perfect family – in which case do you want to swap? I am truly sad for everyone suffering this year, the isolation is most pronounced when you're surrounded by loved ones who don't see how much you are suffering. But remember... you are not alone and this won't last forever... Christmas happens every year and next year you'll get to be Santa, honestly, that's Mega!

Oh and don't forget to put our book on your Christmas list!

'Tis the season to be jolly, fa lala la la – la la F*** Off!

Oh the joys of Christmas with hyperemesis gravidarum. It's the time of year you are surrounded by food and drink and relatives who bombard you with well meaning advice about ginger and crackers and thinking positively. Tales of their wonderful pregnancies and their awful pregnancies which they “just got on with” abound along with drunken lectures about how grateful you should be and how lucky you are and how beautiful pregnancy is.

Money is likely to be tight if you've been off work for weeks or months and listening to other people moaning about feeling sick from over indulgence makes you want to commit genocide on the entire greedy nation.

I've spend three Christmas's in the throws of hyperemesis and the intervening three I was breast feeding. I shan't go into detail about my own Yule Tide experiences as family on both sides may disown me for announcing their failures on the world wide web, but believe me... I feel your pain at having to spend Christmas with hyperemesis and with people who do not have hyperemesis. This will be my first Christmas neither pregnant or breastfeeding for 7 years and I intend never to be pregnant or breast feeding ever again – that is cause for celebration indeed!

There is of course another reason to celebrate, and that is the children. On the whole, having people tell me how “worth it” the sickness is would really hurt, particularly in my first pregnancy, because I really didn't know it would be worth it... I worried often that I wouldn't bond with the baby and that if I hated pregnancy this much I might hate parenthood even more. I felt no attachment or bond to the baby, which is natural, I mean, if it weren't for the medications the pregnancy would have killed me! Those feelings were distressing, depressing and above all, secret! We had tried for 7 months to get pregnant, experienced the pain of miscarriage and I wanted nothing more than to be a mother.

But at Christmas it was the one time of year that I really did look forward to having a baby. It is hard to imagine things you have never experienced before, (like being a parent for example!), but Christmas is tenable – because we all know what Christmas is like and how magical it is for children and we can project that. I was able to imagine the following Christmas and the one after that and all the ones after that. I was excited about being Santa for the next 18 years of my life – they would be the best. I knew Rob and I would create new traditions, merged from our own childhoods. That from now on our Christmas's would be about getting up at 5.30 am to watch our children's faces as they opened their stockings. I knew I would be able to teach them about the seasons and about the light returning to the world and we would go for cold winter walks and make snowmen and eat mince pies and sing songs and tell stories and this whole nightmare would have been worth it.

And I hate to say it, particularly to those who don't yet have children, but it is worth it. It really, honestly, truly IS!

 

 

2014 update - If you are suffering this year don't forget to put Hyperemesis Gravidarum - The Definitive Guide on your wishlist! 

 

I've talked a lot in the past about products which don't help relieve pregnancy sickness despite pseudo-science claiming they do. But that's not to say there aren't products out there that can genuinely help make your pregnancy more tolerable. This one has nothing to do with pregnancy sickness or relieving nausea but...

Anyone who has been pregnant, particularly those who have done it more than once will likely know all about the horrors of haemorrhoids! 75% of pregnant women get them – the same amount of women who get pregnancy sickness to any degree – We just don't talk about our bums like we do “morning sickness” which is why the moment you realise that's what's going on down there is so dire – It's a right of passage (excuse the pun) which you simply weren't expecting!

Women with hyperemesis gravidarum are possibly more likely to suffer haemorrhoids (piles) due to prolonged and severe dehydration and medications which cause constipation (Ondansetron is a bitch for that!). Also, the inevitable inactivity and being housebound perhaps makes it worse too. It seems horrifically unfair that on top of constant nausea, regular vomiting and all the other grimness of hyperemesis that you should discover the nightmare of haemorrhoids! I don't have any research to back up a direct correlation between hyperemesis and haemorrhoids but there is plenty of evidence that hyperemesis causes dehydrations, dehydration causes constipation and constipation exacerbates haemorrhoids.

If you've managed to avoid piles through pregnancy and childbirth then you may as well read on anyway as once you hit 40 years of age you've got a 50% chance of getting them anyway... Yippie!

While I was at the Royal College of Midwife conference a couple of weeks ago I noticed a product being displayed which claims to help reduce and prevent piles; it's called HemorRite. I dunno whether it's my nursing background or my up front attitude but people seem to talk to me about all sorts from contraception queries to piles on a regular basis... So I happen to know a number of potential testers for this product (you'll be relieved to know that haemorrhoids tend to clear up after pregnancy for the majority of women – until the natural ageing process brings them back... I'm not at that point yet luckily!).

The product is a thing which you put in the freezer for a couple of hours and then pop on or up your bum... chilly but soothing I should think! It comes with lube you'll be pleased to hear and also a case for keeping it hygienically in the freezer – the last thing that will help either haemorrhoids or hyperemesis is a bout of e-coli from the frozen peas!

It works by causing vaso-constriction to shrink the piles (they are veins which are swollen) and also just straight forward relieves the pain and discomfort. It's completely safe for pregnancy. You use it for 8 minutes for the best effect.

So... I asked my anonymous tester (who is fairly new to the delights of piles but has recently tried a number of over the counter treatments) for their view on the HemorRite product. Here is what they said:

“To start with it's so damn cold that it kind of hurts but you soon get used to it and the relief it gives you after using it is worth it. I preferred it to suppositories and creams anyway as I don't like using them really, they're kind of yucky. I don't know if long term it will actually get rid of them but the relief lasts a fair old while”

It's quite expensive at nearly £25 but it lasts 6 months and if you've got them bad you can use it up to 4 times a day to start with and then twice a day after that so I guess you rapidly save the cost of alternatives.

.

NB. Although I was given the product for free I haven't received any payment for this review and I wouldn't have written it if I didn't think the product was any good... all views are my own (accept for that of my anonymous tester!).

"I'm 37 and never once in my life have I wished for a sibling. Being an only child was a truly wonderful experience - I had my parents' undivided attention the whole time! My friends were jealous that I didn't have to share a bedroom with an annoying sibling, wear their hand-me-down clothes or drag along a younger brother in tow every time we went out to play.

Let me dispel some myths about being an only child:

• They'll be lonely. I was never short of friends to play with, and formed a really close bond with my parents because there wasn't another sibling to compete with for their time. Presumably you're going to let them have friends? 
• They'll be spoiled. It's true that I got more presents on my birthday than some of my friends with lots of siblings, but that's because my parents weren't so strapped for cash only having one child. According to this survey, raising a child costs an average of £148,000. Are you sure you want more than one? 
• They'll be anti-social. To be honest I find this quite insulting. I've met anti-social only children, yes, but I've also met very anti-social people who have siblings! Bring up your only child in a loving environment and they'll be well-rounded individuals, just like you. 
• They'll miss having the kind of relationship that having a sibling provides. I've formed a number of life-long friendships with people that I consider to be closer than a brother or sister, people to whom I'd donate bone marrow or a kidney without a second thought. I know people who have/had unpleasant, even abusive relationships with their siblings and they're not alone. 
• "They won't have a brother or sister to help look after me when I'm old." Seriously? If you're just having kids so they can care for you later in life, you're probably so selfish that they won't want to look after you.

If I've got one regret from my childhood, I wish I'd had a puppy."

For links to other blogs about one child families and people to hook up with on twitter check out this post on Amanda's Patch about their decision to not have more children.  

1. Go in with a good attitude. Don't assume that the doctor will be dismissive and don't assume that you will have to “fight” for treatment. If you are reasonable then they will have a hard time explaining why they are being unreasonable.
    
2. Prepare yourself in advance. Take notes in with you, in particular about her symptoms, your concerns and any questions.
   For example:

3. When you first go in, explain that your partner is finding it difficult to speak due to the symptoms and you would like to explain what's been going on. If he/she seems put out then go on to explain that just getting to the surgery has been a real struggle and she really would prefer you did the talking. He can always confirm that with her.
    
4. Using your notes as above explain that while you were both prepared for a bit of “morning sickness” and know it's a normal part of pregnancy you really don't think this severity is normal and you think she has Hyperemesis Gravidarum. Explain that whilst you had hoped to have a nice natural pregnancy, without medication and so on you really feel that she needs some treatment as the symptoms are so severe. You understand they aren't licensed for pregnancy but feel that when looked at from a risk/benefit perspective you both think the time has come to accept that she needs treatment.
    
5. Now assuming your doctor has reacted really well and is being kind and pro-active, ask for a plan going forward. He doesn't need to agree to more medication or anything yet but he needs to let you know what symptom severity to look out for and when to come back if things don't improve. If he is sending you home rather than hospital then ask what he would like you to monitor, ie. Fluid intake/output, weight loss, ketones in her urine - he can prescribe ketosticks for this or you can buy them yourself online Ketostix Reagent Strips Ketone - 50 strips

1. “Have you tried ginger”... this has got to be the all time greatest thing NOT to say. Research, by a colleague of mine Margaret O'Hara, has found that all women with any level of pregnancy sickness know about the “taking ginger” remedy. What most people don't know (although plenty of veteran HG sufferers do) is that the only form of ginger which has found to be in any way helpful is as a capsule, 1000mg per day and then it is only helpful for mild queasiness. Ginger biscuits, ginger ale, ginger tea, ginger ice lolly's... it's all old wives tales. Do you really think a woman who is on powerful anti-emetics and IV fluids could really have avoided all that suffering if she had only tried a bit of ginger?
2. “Oh I had that, but I still went to work and got on with life”. Well then you didn't have HG so shut up... like comparing a twisted ankle to a broken leg.
3. “Think positively and get some fresh air”... By saying this it implies that it is all in her mind and she is causing her own suffering. It's a terribly cruel thing to say and a sure fired way to lose a friend and possibly get a fat lip.
4. “Well at least you can get pregnant... you should be grateful for that”. We know and we are. Pointing it out just adds to the guilt the woman is already inevitably experiencing due to feeling negative towards the pregnancy and for “not feeling grateful”. It cuts deep and the pain lasts. Plenty of women with HG have even been through the pain of experiencing both and are pregnant thanks to IVF so the hurt for them is all the more.
5. “I loved every moment of pregnancy, it's such a special time, creating life, glowing blah blah blah blah”. Well bully for you and thanks for rubbing my nose in my misery!
6. “Is it safe to be taking those drugs? Won't they harm the baby?”. No woman actually wants to take medication in pregnancy. We all (well most) go into pregnancy wanting to be natural earth mothers, eating healthy and avoiding all potential harm but sadly some women can not survive pregnancy without medication. In the past, before the invention of modern medicine, women would simply die. Often without knowing why as symptoms would kill her before a pregnancy was confirmed or even suspected. Women with HG taking medication think dozens of times everyday about the safety of the medications, questioning if they really need them and if the baby will be okay but the reality is the drugs are prescribed by a doctor and given because they are NEEDED. They are ultimately much safer then not taking them. Further, the effects of severe dehydration, a baby bathed in ketones and a malnourished mum are hardly good. To add to her concern and worry and to make her feel like she needs to justify her condition is wrong and actually really inappropriate. If a pregnant woman was having an asthma attack would you question if the inhaler was safe? No you'd be pumping away worried that she may die without it! If you genuinely are concerned about the safety of the medications then do your own research via the PSS site and HER Foundation, don't question the sick person that barely has the strength to talk let alone argue!

1. “How can I help? Would you like me to clean/cook/do some washing/take the kids out for a bit etc etc?” Try to be of practical help so she can rest.
2. “How can I reduce your loneliness?” send a text as often as possible to let her know you are thinking of her and there for her. Offer to contact Pregnancy Sickness Support on her behalf to get a support volunteer for her.
3. Defend her to others who may be saying the above... stick up for her, raise awareness that it's not her fault and she isn't doing it to herself. Don't just nod along to gossip about her taking medication or being lazy; be loyal to your friend.