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Journey into the world of hyperemesis gravidarum...
26Jun 15

Pay It Forward

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!

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Comments

Hi there, Firstly I am currently 10 weeks pregnant, I've had 2 pregnancies before- my gorgeous boys :) but this time after time in hospital and anti sickness tablets -that don't always work 😢 I now understand this condition completely. Please could you tell me how to buy a pack? I'd also like to buy one in advance for someone like me in need. I think you can safely count on me to raise some awareness of this condition.
Sophia white, 26th June 2015

Spewing Mummy replies...

Hi Sophia, Sorry to hear you're suffering :(

To buy a pack click on this link:

http://spewing-mummy.myshopify.com/collections/main-products/products/hyperemesis-pack

and then when you've added that to the cart you can click on "donate books to HG women" above and add a donation pack to your cart. If I get the order I'll try really hard to post it tomorrow morning so you get it on Monday but my husband is away on a stag do and I've got the 3 kids so I may not make it to town in the morning, in which case it'll be tuesday you'll get it.

Also, please call our helpline on Monday or Tuesday and we can organise for a volunteer to support you through the pregnancy if you like and discuss your treatments etc to see if you could get it a bit better managed. The number is 02473682020 leave a message loud and clear and you'll get a call back. The PSS website is https://www.pregnancysicknesssupport.org.uk/

Caitlin X

This is a great idea for people like me to give practical help. I've survived 2 HG pregnancies with the help of PSS, but even after 3 years I find it hard to explain just how trapped, frightened and suicidal I felt to people who have never experienced it. I do want to support other women but worry that I wouldn't be any good at it as I haven't "got over" my own experiences. I still get really anxious every time I even feel slightly sick. I'm not having any more children, but I do want to ensure that my daughters grow up in a world where HG is managed by competent, well-informed professionals with access to good research.
Anna, 13th July 2015

This is a great idea for people like me to give practical help. I've survived 2 HG pregnancies with the help of PSS, but even after 3 years I find it hard to explain just how trapped, frightened and suicidal I felt to people who have never experienced it. I do want to support other women but worry that I wouldn't be any good at it as I haven't "got over" my own experiences. I still get really anxious every time I even feel slightly sick. I'm not having any more children, but I do want to ensure that my daughters grow up in a world where HG is managed by competent, well-informed professionals with access to good research.
Anna, 13th July 2015

I got my book in the mail yesterday -- and I just donated a survival pack! Keep up the great work! Cin in Canada
Cin, 14th July 2015

25Jun 15

What more do you want?

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!!

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Comments

I'm so sorry you've had such an awful time of it lately. You've done amazing work so far and I for one am incredibly grateful to have had the pss website to refer to when talking to doctors during my 2nd pregnancy. I want to say a huge thank you for all that you have done. And I'm off to go buy the book for my boys now 😃 I hope you find your path forward and you get your spring back in your step x
Rebecca Sharp, 25th June 2015

Don't take it personally. Everyone wants everything for free, not just the HG community. Look after yourself and remember you and your family come first. Thank you for all you do.
Jade Vernon, 25th June 2015

I'm sorry that you're feeling this way, I know that it absolutely sucks! It's the exact same reason I very almost had a breakdown at the end of last year, and why ultimately redundancy was the best thing that ever happened to me. When you've put everything you have into something, only to have it turn on you, to have your motives (and your ability) questioned, it is only natural to feel betrayed and utterly defeated. And that's when you have the opportunity to decide whether you continue to sacrifice everything you have, or whether you step away. Whatever you choose, make sure it feels right for you. It's going to hurt, sometimes even the right choice hurts, but you'll know when you've found the right way forward as that intensity urgency that you feel at the pit of your stomach will begin to melt and you'll just feel an immense sense of relief that things can change, for the better, for you. One thing someone said to me this weekend was that sometimes you cannot help people, sometimes you cannot change things, sometimes you just have to accept that. But accepting it doesn't mean you don't care... You can still support the cause without giving everything you have in the process. Your support doesn't have to look the way that it has up to this point! For instance, you don't necessarily need to be on the frontline to make a difference. You can make as much of a difference to a single woman through nursing as you can to anyone through blogging or answering a helpline. You'll find your way forward, I know you will, but whatever you do, don't rush a decision, give yourself time to process how you feel rather than trying to squash it down and carry on regardless. Take care of yourself x
Amanda, 25th June 2015

I am sorry that you're feeling demotivated and crushed by the HG community. I am four months in and have had HG since week 4 of my pregnancy. The thing is, I wouldn't buy your book - not because I am not appreciative of the time, money, blood, sweat and tears you've dedicated.. Not because I want you "for free"...More because I'm sick of being sick. I dip in and out of your blogs when I feel I have the energy and the strength to read it. It's something that I wouldn't choose to invest in because it's a time of my life that I want to blot out. I hope this helps you accept the "flop" of your book. I hope you continue to blog, you are helping people accept and understand HG for all the horror that it is.
Esme, 25th June 2015

Oh, Caitlyn, I am so so sorry. I wouldn't give up on the book just yet -- the problem frankly may have been timing -- most books don't launch just before summer unless they are beach books, and books for a community this small are going to take a long time to take off - we're talking years sometimes. Remember also the the U.S. HG community has the "Beyond Morning Sickness" book and the companion children's book -- so your market may really be the UK itself, as U.S. women may feel the advice in your book isn't applicable to their health care system. As for the deleting for selling -- bet I can guess which group that happened in. Keep on keeping on. You are saving lives with what you do. And as someone who has been doing HG advocacy for nine years now, I surely appreciate it.
Cin, 25th June 2015

You're the biggest HG hero out there. You've done so much for HG and hundreds of women and their families! It IS demotivating when you feel you don't get the response you deserve and you deserve a big fat freaking medal for all your hard work. Don't give up! Kick ass and be a rockstar! Love you! Xxx
Helen , 25th June 2015

I don't have the words to describe how much you mean to me. It is thanks to you that I felt brave enough to have a second child. You are an incredible woman - who works so tirelessly and selflessly for others - and have achieved so much. I am so upset that you have been subjected to such unfair treatment and been made to feel so distraught when all you deserve to feel is amazing. So grateful for everything you do. Thank you from the bottom of my heart. XX
Heather, 25th June 2015

Caitlin I am 2. Without you I would be zero, nothing, not here. Without you and your work my mummy would have been alone, confused, desperate, bewildered and so sick she wanted to die. I'm here because one day she found you online, now not only are you a star but you've given my family the hope and power to go on and my mummy has a baby inside her. I loved your new book and it made everything very clear. Thank you :) xxxx
Poppy pearson, 25th June 2015

I was horrified when I read this to learn that you have been so upset and people so cruel. I think the work you do is amazing. Your first book and your blog have been the only things to give me strength to believe that one day I will be strong enough to get through HG and have a family. I hope you do continue with your blog, it makes such a difference to know others have experienced the same horrors. I am so grateful to have your book and the PSS website to refer to when we do try again, so thank you.
Jo, 26th June 2015

Oh my word, I had no idea about all of this - how awful. I think what you do is amazing, and I think both the books are amazing, they are sat proudly on my book shelves. You have helped me, you really have, you helped me to realise that what I am suffering (after HG) is normal, and reading your definitive guide made me feel reassured that I wasn't crazy for even considering a second pregnancy. You have educated me, and helped me feel like I have options and I can prepare for it. You have made me feel supported - through the blog and the books - reassuring me that what I felt was right - I was wrongly left to suffer during my HG pregnancy. Thank you, from the bottom of my heart. I cannot believe what I am reading recently - it may seem melodramatic but reading this and all of the fighting going on about national breastfeeding week has left me feeling total despair if I am honest. I hope you keep blogging, because I know you help people, what you are doing is important, vitally so.
Jenni - Odd Socks and Lollipops, 26th June 2015

I nearly cried when I read your blog forwarded on to me by my sister. My niece suffered HG with both her pregnancies and both she and my sister had so much support from your blogs. I suffered with all three of my own pregnancies over 30 years ago with virtually no support at all. I was so close to termination each time and why I was mad enough to have more than one child is none's guess. How I wish I had had someone like you around then. Even though I am now 60 I have read your blogs and the years roll back and I am there spewing 15+ times a day for the entire time. Please keep on with your fantastic book and realise your critics arena the minority and would complain and find fault with anything and everything. I am sure the book will be an amazing lifeline to many sufferers and their families.
Debbie, 27th June 2015

I'm so sorry, love! I personally only ever find people sharing posts about helpful books, especially books to help children understand, well... helpful. You work so hard and I just want to reassure you that it's important and makes a difference. Like someone else said, everyone wants everything for free... and shame on them in this case. This is the first I'm hearing about your book, and I'm so sad that it has come to this point. Here in the US we have a show called Once Upon a Time, and in one of the episodes the little boy says, "It isn't over, it just looks that way. It always looks worse before it gets better. This is just the dark hour before the hero comes up with something." -paraphrased. You are appreciated. You are loved. You are valued. And I want to personally thank you for your efforts to make life better for those with HG, especially there in the UK where medical options are insanely minimal.
Carolyn Schleufer, 29th June 2015

16Jun 15

The long road to recovery from hyperemesis gravidarum

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! 

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12Jun 15

How to be an HG Hero Available for pre-order now!

How to be an HG Hero - helping children understand hyperemesis gravidarum buy Caitlin Dean

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 23-24th 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!

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10Jun 15

Market Research for an HG Shop

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:

 
 

 

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Fund Hyperemesis Research

The Book

Hyperemesis Gravidarum - The Definitive Guide by Caitlin Dean

The Kids Book

Hoe to be an HG Hero by Caitlin Dean

About Me

I am mother of three beautiful children and wife to a fantastic and supportive husband. I am a nurse, a farmer and a trustee for Pregnancy Sickness Support. I love working hard and spending time with my kids.

About this blog

Information and support for pregnancy sickness and hyperemesis gravidarum. Views are my own and do not represent those of any other organisation. Information provided here should not be a substitute for medical advice. My aim is to raise awareness and encourage sufferers to know they are not alone.

Previous award nominations

MAD Blog Awards UK 2015

 

VOTE FOR ME BiB 2014 COMMENTARY