We Are Survivors - Guest Post
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.
Shortlisted by Tesco!
I got a call last week... I'd been nominated for the Tesco Mum of the Year award for my work raising awareness about hyperemesis gravidarum and developing support in the UK for the condition. Not only had I been nominated but I've made it to the shortlist of 26 from 3,500 nomination! And... not only had I been shortlisted but Tesco are donating £1,000 to Pregnancy Sickness Support on my behalf!
I actually can't believe it and burst into tears in the shop when I took the call (alas I wasn't in Tesco, but will probably make more effort to shop there now!). You see I don't really see what I do as amazing or recognition worthy. The women who deserve recognition are all the women battling hyperemesis; the women I speak to every day whose doctors are refusing them safe and effective medication due to ignorance and prejudice; the women who are struggling to enjoy their lives because they are so deeply traumatised by this horrendous condition; the women who don't have their babies because the support wasn't there; the women whose lives are now complicated by long term physical complications from HG.
It is for them that I do all of this. It is for them that I actually don't consider myself a particularly good mum... I fob my kids off on friends and childcare so that I can do what I do and I comfort myself that in the future
they'll be proud, cos at the moment they really don't get why I work so much. I comfort myself that for Orla's generation of reproducers the experience of HG will not be a lonely, isolated nightmare of mute suffering... That's her on the left.
I've been covering the Pregnancy Sickness Support helpline a lot over the last couple of months since we returned from travelling, and I've had a huge increase in emails via the blog since the book came out. And it's impossible not to hear how much the support network we developed and this blog I write helps others, and they are my inspiration. They are my heroes. Ironically it has lost me a few friends along the way, but I guess they are necessary sacrifices when you're breaking down stigmas and misconceptions. My voice when I was pregnant was weak and feeble, as is the voice of the sick women I talk to who can't understand why they are unable to advocate for themselves with their doctors and bosses and even their family and friends. And I explain that I was the same, despite how I talk about it now, when I was where they are now I too could not speak, could not fight, could not defend myself. They feel relief and I reassure them that we are giving them a voice, slowly but surely the volume is growing and we will be heard.
I've been so busy lately trying to secure the future of the charity and the UK support network along with promoting the book, that I've struggled to blog regularly. So over the next couple of weeks I'm going to use this platform to give other HG sufferers a voice to tell their stories with guest posts. You'll notice common themes such as isolation and trauma and you'll see how depressingly similar so many stories are. But hopefully, through the stories you'll find support, encouragement and hope... hope that with our voices united and channelled effectively we can make a difference, together, as HG Sisters, survivors, mums of the decade. And in the next decade the stories will be different, sure there will still be nausea and vomiting the occasional ignorant comment... but the isolation and trauma will be reduced, because we, the women of now are speaking up and changing the world.
If you would like to submit your story for consideration please use the form on the contact me page.
Treating pregnant women like any other patient
I've recently had the pleasure of speaking with Caroline De Bie from the Pregnancy & Medicine Initiative based in Brussels about developing a collaborative relationship between our organisations and cooperating together on projects to further education and research. It's an exciting time for developments in the world of Hyperemesis Gravidarum as we pick up the pace of improving services and awareness. Having featured as a guest blogger on their site I asked Caroline to feature on mine in order to raise awareness about their campaign.
Treating pregnant women like any other patient
By: Caroline De Bie, The Synergist Programs Director, Pregnancy & Medicine Initiative
Most women, when pregnant, vow not to ingest (or be exposed to) anything that might harm the baby. Some of us even go as far as avoiding things deemed “safe” by our doctor, because “you never know.” And that is a choice we make and are comfortable with: we were given information, assessed the risk, and made a decision.
But what if you are in a situation where your own life or well-being could be compromised? What if there is no information on how the treatment could impact your baby? Or whether not getting the treatment could be harmful for you too?
Very often, women in that situation (and their doctors) have limited options: delay the treatment until the baby is born, get treatment and live with the risk or uncertainty (sometimes their entire life), or forego pregnancy altogether. But how does that decision come about and can there be another way? Today, the information available about medical treatment and its impact on pregnancy is limited, conflicting, and sometimes nonexistent. And future parents and their doctors are often left in the dark.
If you believe, like we do, that every pregnant woman has the right to make an informed decision, benefit from the progress of science, and have access to appropriate healthcare, I encourage you to support our campaign and ask others to do so too.
The only way to bring this issue to light is for parents and their doctors to speak out about their own experience, and make our voices heard. Join us in supporting pregnant women’s rights. Visit fromdarktolight.org, answer our poll, share your story, and support others.
About the Pregnancy & Medicine Initiative
The Pregnancy & Medicine Initiative was started because we believe there is a serious gap in medical knowledge that deprives pregnant women and future parents of some important rights. Pregnant women should have the right to appropriate medical care when they need it. They should be given the information they need to make the choices they are comfortable with. And they, like any other patient, should be able to benefit from the progress of science.
THE BOOK IS HERE!
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:
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In conjunction with Pregnancy Sickness Support and Plymouth University I am looking for women who have been treated for HG in the last 2 years in the UK to take part in a research survey. Please click here to find out more.
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.
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