All Change Here - Mind the Gap
There is rather a lot of change in my life at the moment. You see my husband and I have decided to embrace the moment and take our three (very small) children off to see the world. We leave on Saturday and you can read about it here on my Adventures of Muma Dean blog.
Fear not though dear readers because Spewing Mummy will continue not only to be, but to thrive! I have bitten the bullet and ordered myself a lovely spanking new website. It launches tomorrow. The only real difference you'll see is that it will look lovelier and work better. You'll be able to find older posts more easily and I might even have some goodies for sale and freebies to help you through your darker moments of hyperemesis.
The change over will mean that if you have previously subscribed via email for notifications of new posts then you will need to do that again using the new form on the right hand side. If you don't already subscribe then please do. It is easy to unsubscribe if you give it a go and then change your mind... so go on and sign up. This will also be the main place to keep up to date with news about the publication of the up coming hyperemesis gravidarum book I'm working on.
Remember also you can follow me on Facebook and Twitter where you can share links and posts to keep the awareness raising going!
Admittedly my posts may be a little more sporadic once we hit the road, as internet connection won't be constant but hopefully you won't notice any major disruption to normal service.
Finally - thank you all for all the amazing support you've shown this blog, sharing posts and tweets and leaving comments... it's wonderful to see people taking such an active role in raising awareness in a positive way. I hope you enjoy the new look tomorrow. X
Results from last weeks quick poll
Last week, after a lengthy email exchange with an editor for a midwifery journal, I became concerned that my view of women's experiences of being in hospital with hyperemesis was becoming skewed. I suspected that because I am “on the front line” as it were, and being exposed to the more extreme cases, that I was becoming cynical and thinking things were more dire than they are in reality. People tend to be less vocal about good experiences and the bad ones can really stick out.
So I ran a little poll of my readers experiences. First of all, thank you to all those who completed the short survey. Second of all... Oh my jibbering jellies... what a sorry state of affairs!
394 women answered the survey. I took out responses from women who had not suffered in the last 5 years as I wanted the results to be from recent experiences and I took out responses from women who had not been to hospital (I may run another one soon about GP's and community experience). This left me with 347 answers – a pretty good haul. (Not everyone answered every question so the number answered is stated also).
Now you have to bear in mind that these women are self-selected and that can cause bias in the results, ie. Women who suffered more severely are more likely to follow me and be answering the questions. I was careful not to imply the contents of the survey whilst recruiting to try to reduce this. If my facebook post calling for participants had said “I want to know about your awful experiences” then women who had good experiences would be less likely to take the survey... so I didn't, I kept it vague. But ultimately there is still likely to be a little bias because of the self-selected nature of the survey.
To judge the general severity of the hyperemesis suffered by the women taking the survey (ie. Ensuring that they weren't all the very severe end of the spectrum or visa versa), I asked about how many medications they had taken and the duration of the condition. Without boring you senseless and so we can cut to the chase, it was all pretty average for hyperemesis. Of 346 women, the majority took between 2-4 medications (67%). Of 344 women, most recovered at the end of pregnancy (47%) or between 20 and term (28%), only 1% recovered before 16 weeks but a further 10% were recovered by 20 weeks. Some were still pregnant and sadly 8% were having ongoing problems after the baby was born.
Doctors may say “well then this is extreme hyperemesis because most recover by 12 week” - but that's nonsense, a quick research search shows these results are pretty standard.
Anyway, moving on... to the really depressing bits!
You could just do it yourself...
So, to clarify the above chart, 45% of 345 women who had been admitted to hospital with hyperemesis in the last 5 years had to empty their own vomit or urine bowl. 45%! Even I was shocked. I knew of a few women that have had to do that in the last year or so, a couple of whom stated it as the “final straw” before terminating their WANTED babies. But I honestly expected this figure to be more like 5%... not 45%!
Mind over Matter...
This chart may not look so bad... “No” is sticking right out there. But lets add up the “yes” answers of the 344 responses – 68% said yes! Either once, occasionally or frequently. Even if you just look at occasionally and frequently it's still 50%!
Don't take that, you bad bad mother...
Again, when we add up the “yes” responses for this chart we find that 45% of women are being told the medications can cause abnormalities in the baby and they shouldn't be taking them. Now let's forget about the doctors for a moment because at the end of the day the responsibility lies with the prescriber and that is not a responsibility which comes lightly – so let's give them a break for a moment. Why are nurses and midwives (and in the comments there were 5 pharmacists too) questioning the doctors prescriptions in a way that can only add anxiety, fear and stress for the woman who clearly has no choice but to take the medication – she's in hospital for goodness sake!
So 40% of women in hospital have to endure staff, both qualified and unqualified stinking of smoke and/or perfume which has made their symptoms worse. As a qualified nurse myself I wouldn't dream of wearing perfume to work as there are lots of conditions which can be exacerbated by perfumes and odours and it's unprofessional. Chemotherapy patients can experience heightened sense of smell and it can exacerbate breathing difficulties in patients with lung conditions, such as asthma. It's about time perfume use by hospital staff was stopped (apparently most hospital guidelines say staff can wear “light perfume” - but to an HG patient they may as well have used a whole bottle!)
Those are the statistics from the quick poll and far from being cynical and over exposed I have realised I was underestimating the improvements in hyperemesis care over the last 5 years. I also asked an open ended question about the positive and negative experiences of the women and I shall post results from that next week.
I've been a bit quite this week as I've been working on an article for a midwifery journal which has been pinging back and forth between the editor and myself. She raised some interesting points which I must admit I was thrown by...
I think I am sometimes so immersed in the hyperemesis world that my view of it can become a little skewed. So to that end I thought I would run a quick poll of a couple of areas that interest me and I thought I knew about, but given her reaction I wonder if my vomit coloured glasses have given me a biased view.
It will only take you about 3-4 minutes to complete and I'll let you know the results on here.
Click here to take survey
You're Pregnant - Be Grateful!
A lot of my posts seem to be Facebook inspired these days... clearly I spend far too much time on there (note to self... get a life!). Anyhow, I noticed a thread about a “friend” posting that she hate's when pregnant women don't enjoy pregnancy because they should just be grateful. Other “friends” joined in with, “yeah I was nauseous but just got on with it” and “yeah I hate moaners too” and other equally obnoxious comments.
Well as I mentioned in my last post most stuff in life is on a spectrum and appreciating that is a valuable skill to acquire if you strive to be a “nice person”.
But what makes these comments really hurt us hyperemesis sufferers is that they don't take into account how much we WANTED to enjoy pregnancy and how ROBBED we are of the pleasant pregnancy experience.
I always wanted children and looked forward to pregnancy from as soon as I was old enough to understand what it was. I was terrified of not being able to have children and my heart bleeds for women who can't experience it for whatever reason. But I also mourn my own loss because I never got to enjoy pregnancy, I just had to endure it.
What people need to understand is that women with hyperemesis are incredibly grateful for their ability to be pregnant but that it is literally 9 months of torture and misery and physical pain and mental anguish.
Imagine for a moment lying on the side of your bed with acid running from your mouth into a bowl. Your lips are crunchy from dehydration yet you mouth is over producing saliva which when swallowed comes back mixed with acid and blood from your torn oesophagus, it hurts. The smell of your clean bedsheets is dizzyingly disgusting and the light flickering through the curtains makes your head spin more. You haven't seen anyone other than your partner for three weeks and is at work from 7 am until 7 pm so you are alone everyday. Attempts to go downstairs are risky as you are dizzy and they induce 30 minutes of violent retching and vomiting anyway. You're 8 weeks pregnant with a baby you tried for 11 months to conceive. You've lost 2 stone in weight. You're scared for your baby but also yourself... you feel like you are dying. Because without the IV fluids you'll be admitted for tomorrow and the medication which will only just control it if you lie very still, you could actually die from this. But those medications are scary and when you sleep you have nightmares about deformities because friends and relatives keep questioning their safety and if you should be taking them.
You know at best you have at least another four weeks of this because everyone says you'll be better at 12 weeks. But in reality you have another four months of it at this severity and probably another 7 months of throwing up two or three times a day and constant nausea which makes leaving the house difficult. You're worried you'll lose your job and don't know how you'll pay your mortgage, you know your partner is worried too.
On top of all that you feel guilty because you aren't enjoying it and have horrid thoughts about miscarriage or terminating your precious baby. You feel guilty because you know you best friend is going through IVF and would swap places with you in the blink of an eye. And you feel angry because NO ONE understands how ill you feel... it's not just that they don't understand, they don't even attempt to.
But you know what... you're right, we are just selfish moaners who should just suck up the nausea, nibble some ginger biscuits and get on with it. And God forbid we should use our social networking sites to reach out to ourfriends in a time of desperate need. How dare we moan about this beautiful, precious and enjoyable process which is literally killing us. How dare we not enjoy the pain and suffering for our children (by the way, do you know how painful it is to spew up acid along an oesophagus with cuts and tears all the way up it? Do you know how painful a torn stomach muscle is?). How dare we ruin someone else’s day by talking about the downside of pregnancy.
Do you know what I hate? People that are so damn arrogant that they think they know what everyone else in the world experiences and are so stupid that they believe everything they read in pregnancy books about the glowing and blooming and people that think they know better than doctors because the cure for hyperemesis is ginger and positive thinking. Those people need to grow up and realise that pregnancy is not all happy and light for everyone and that their friend needs support and understanding and sympathy and kindness to survive this life threatening condition.
But if it's already too late for that, then to those people remember this - sometime in the future when you are suffering some horrible, debilitating, miserable condition that leaves you housebound, in pain, lonely and scared. Then, when the one person that visits you is the friend that suffered hyperemesis, and she comes round and tidies up and keeps you company and gets some supplies in and helps with the kids. And she texts you each day, defends you publicly and advocates for you, When she sympathises with you and doesn't question your suffering or add to your guilt or make you feel inadequate or useless or selfish... Don't forget to say “I'm sorry”.
Sorry for the silence folks but time off over Christmas is fairly essential with three little ones... what's the point in suffering three times to get them if I'm then too busy to enjoy the little critters eh?
Anyway, they are back to school today so it's time for blogging the cr*p out of hyperemesis gravidarum again...
I was flicking through Facebook before lights out last night (as one does) and I noticed a thread about a woman's conversation with a friend over Christmas. This “friend” (I've “ ” it as I doubt she'll be her friend for much longer) just couldn't appreciate that sickness is on a spectrum and that other women have it more severe than she had during her pregnancies with mild “morning sickness”. She honestly though that women claiming to have it worse than her must just be pathetic or making a fuss.
Well that's a story almost all hyperemesis sufferers will be familiar with! It never ceases to amaze me that people seem incapable of understanding that illness and conditions vary in severity.
In reaction to this woman's bloody minded ignorance I thought I would give a few other examples of “things on a spectrum” so that my readers can have them up their sleeves for when they need them.
A broken bone could be a little hairline fracture, quick to heal and not very painful or the bone could be snapped in half. Almost every type of break conceivable is achievable in between those extremes.
Myopia (short-sightedness) can vary from mild ie. Needing glasses for driving and watching TV, to severe, ie. Virtually blind needing think glasses all the time and experiencing “floaters”.
Diabetes can vary from dietary management to regular insulin injections.
Inflammatory Bowel Disease varies from person to person and also time to time so periods of remission are broken with relapses and severe flare ups.
Depressioncan be mild and short lived for one person and terminal for another.
Dyslexiacan be mild and frustrating but easily overcome for some. I have moderate dyslexia, which held me back in my education, yet have done well over coming it in adult hood, as demonstrated by my blogs. Yet dyslexia can be so severe that people can find reading and/or writing feel like an impossible task.
The Common Cold (which can feel like the flu but is NOT flu) might induce a mild runny nose for a couple of days or could see you in bed for days with a high temperature, muscle aches, ear ache, headache and so on. So it can feel like mild flu, but it isn't.
The Flu(which is NOT just a bad cold) can feel like a bad cold but can drag on for weeks – or it can be so severe it can be fatal. In fact, the cold/flu analogy is a good example of the "Morning Sickness" - Hyperemesis Gravidarum Spectrum. Morning sickness can feel awful but you get over it quickly and is never fatal - Hyperemesis Gravidarum, which starts where morning sickness leaves off, drags on and on, makes you very poorly and can be fatal.
Measles can simply present as a cold like illness yet the range of severity is wide and for some people it can be very severe and lead to complications such as meningitis and pneumonia. Children and adults can be left with heart, nerve or with brain damage and some die from it.
Symphysis Pubis Dysfunction can vary from mild discomfort to being wheelchair bound and requiring strong analgesia.
Headachesare something that many people have experienced personal spectrum’s of, from mildly annoying to flow blown blinding pain.
Vertigo is a condition which is frequently misunderstood. It is not a fear of heights as many people believe but is a symptom where you feel like you or the environment around you is moving and swaying, like on a boat. It can be mild and barely noticeable or it can be so severe that you can barely move from a lack of balance, are housebound and simple tasks seem impossible.
In fact, almost all illnesses and conditions are on a spectrum and just because one person's experience of something seems worse than your own doesn't mean their experience is made up or wrong, or that they are pathetic or weak or attention seeking. Equally, if someone else finds an experience easier or less severe than your own it doesn't mean they are tougher or stronger than you.
However... if you are an open minded person who can empathise with another person's suffering regardless of personal experience of that particular condition or the severity they are experiencing it, then you are a kinder person than the one who doesn't even try.
I hope that my readers, fellow sufferers of hyperemesis, will use their personal experiences to gain empathy for ALL unpleasant conditions, particularly those which are misunderstood and stigmatised. We don't have a cure for it and it totally sucks that any of us have to suffer it... but suffer it we must, so we may as well try to use it positively for the good of others. Your pregnant friend with symphysis pubis dysfunction and headaches may not get why you are making such a fuss over your "morning sickness" but your empathy will reduce her suffering and that is what friends are for.