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Dear Mother - a love letter about your journey

Dear Mother – A Love Letter from Me to You

Dear Mother - a love letter about your journey

I’m currently sitting in bed, on day 4 of a hideous virus that has totally knocked me for six and left me unable to do much more than lay still and think. And think I have…

You see, any time I get so sick that the only thing I can do is lay in bed and wait it out, I am reminded of the torturous days of my pregnancy, when Hyperemesis ruled my life. Any HG survivor will attest to how the smallest sniff of nausea can bring on a memory of those days, but when you find yourself so completely wiped out that you can barely move, and your brain is so confused you cannot focus on anything, those memories can be huge.

For me, there is this added feeling of guilt and grief that comes with it. As much as I am terrified of ever having another pregnancy (enough so that we are not having any more children) there is always that feeling of sadness that actually, I wish we were expecting again, I wish I could have been stronger last time, I wish I could face it all again. And that makes me feel like I failed, all over again.

These past 4 days, I have gone through a lot of emotions. And the one thing that has cropped up time and time again is that I haven’t allowed myself to grieve properly for what was lost. I’ve been too focused on “seeing the positives” and “moving on”. But equally, I haven’t allowed myself to really see how my journey towards motherhood was just as valid and beautiful as anyone else’s, even if it didn’t look like the natural, glowing, mother-earth type pregnancy we’re shown in the media.

So I did what I always do when I need to work through emotions as big as these. I began to write. First I wrote page after page of how I truly felt about it all, no holds barred, no worries about what people will think. And then the next day I wrote a love letter to myself.

The shift in how I felt made me realise that I needed to hear this. And maybe you do too. Whatever your journey, whatever hurdles you’ve faced, whatever heartbreak has hit you, please know that this is written in love for each and every one of you, just as it was written in love for me.

Dear Mother - a Love Letter from Me to You

I’ve created a Printable Version of this love letter that you can print out if you feel like it. And please, do share this far and wide with as many mothers as you feel need to hear this.

I love you all.

This post has been added to the #MaternityMatters linky hosted by Ghostwriter Mummy.

Maternity Matters~ Ghostwritermummy

Hyperemesis Gravidarum: The Definitive Guide

Hyperemesis Gravidarum: The Definitive Guide – Our Book is Out Now!

Hyperemesis Gravidarum: The Definitive Guide

I can barely believe it… 3 years after the end of my own HG pregnancy, and after many, many hours spent pouring over research, talking to other sufferers and survivors, and then writing and editing until my eyes felt like they would pop out of my head, the book is finally here!

Excuse me whist I squeal for just a minute or two… *squeeeeee*

I am anxiously awaiting my own “in print” copy (my co-author has hers already!) and then I shall update this post with a celebratory photo. But for now, let me tell you more about it…

The book is 232 pages long, packed full of information based on the latest research, suggestions and anecdotes from other sufferers and survivors, and a whole pile of resources to help anyone who is currently suffering from hyperemesis gravidarum, those who have previously suffered, and those who are planning another pregnancy.

But it isn’t just for sufferers, oh no, we wanted it to be THE definitive guide and so we have also dedicated chapters to partners and carers as well as healthcare professionals too. What more could you want?

Not much, it seems, because despite the books still being “preorder only” on Amazon we have already hit #4 on the bestseller list for the category “Pregnancy and Childbirth” and we only started sharing the link at around 8:30pm last night… that’s #4 on the bestsellers list in our first 12 hours of selling, 12 hours which were overnight I might add! I’m not sure either Caitlin or myself can quite believe it!

Hyperemesis Gravidarum: The Definitive Guide #4 Besteller on Amazon

The book is aimed specifically at a UK audience, as we have based an awful lot of the treatment chapters on the NHS services available. However, there is still a vast amount of information available for sufferers and survivors elsewhere in the world, and so the book is also available through amazon.com as well as amazon.co.uk

It is currently only available in paperback, at a price of £10 per copy. However an eBook version is coming very soon and we will let you know as soon as it is available!

I’d like to take a moment now to thank everyone who has supported me (and Caitlin) throughout this entire process. I’m pretty sure I probably sounded crazy when I announced to my family that I was going to write a book about HG when my son was only 3 months old. I’m pretty sure I was slightly crazy, to be honest, having seen just how much time and effort it has taken!! But I have been supported from start to finish from family, friends and the online community alike and for that I want to say a  massive thank you. I would not be celebrating today if it weren’t for that support.

Thank you!

All that is left to say is that I do hope you will go and buy a copy of the book and find it useful. If you do, please consider leaving a review for us on amazon, as that will increase our exposure and ranking. I’d also love to hear from you here on the blog if you have bought and read the book – let me know what you think.

If you are a journalist or PR agency and would like to talk to me further regarding my own experience, my work for the charity Pregnancy Sickness Support or my book “Hyperemesis Gravidarum: The Definitive Guide” then please do get in touch using my contact form or call me on 07428 119956 

Being Interviewed live on Good Morning Britain

Talking About Hyperemesis Gravidarum In The Media

I’m currently sitting on a train, heading back home to my one and only beautiful HG Survivor and reflecting on how my experience during pregnancy has completely changed the direction my life has taken.

Had you told me a few years ago that I would be appearing on national breakfast tv to talk about a medical condition I would have thought you were crazy. But that’s what I did today…

GMB 1

Photo courtesy of Emma Harris

As you may know, I have devoted the past 3 years of my life to raising awareness of the truly awful pregnancy complication Hyperemesis Gravidarum (HG). This has involved working on a book about HG (which I started way back in 2012, finding a co-author in Spewing Mummy in 2013) and working for the charity Pregnancy Sickness Support. I have worked tirelessly to promote the charity’s work, support other sufferers and survivors, and get word out that that this is not morning sickness!

GMB 2

 

Photo courtesy of Emma Harris

Which leads me to this morning, when I found myself sitting on the sofa of Good Morning Britain, talking with Dr. Hilary Jones and the presenters Charlotte and Ben about my own experience of HG. Why? Because with news of the Duchess of Cambridge suffering from HG for a second time, there has been a fair amount of media interest in the subject.

Understandably, the response to this has been varied. Some sufferers are over the moon that HG is being presented to the public in this way, having faced lots of criticism over their own pregnancy sickness in the past. Others are disappointed that it is still being described as “acute morning sickness” and that comments about trying to avoid medications in the first trimester or trying ginger are still being offered up as advice.

But here’s the thing for me… HG is making the news! And whilst we still have a long way to go, we are getting there. 

Whilst there were comments about ginger, it was made clear that this may not apply to HG (it doesn’t) and whilst there is hesitancy over prescribing medications in the first trimester, they are not being disregarded completely. We are not hearing that there is “nothing they can do” or that treatments are harmful, both of which are common messages sufferers often come across.

And whilst my short interview may not have provided the opportunity to discuss these issues in more detail (my co-author and colleague had this opportunity later on with Phil and Holly on This Morning!) it did provide media attention that is so very needed.

This Morning

Caitlin on the This Morning sofa, photo courtesy of Emma Harris

Let me tell you something… whilst I talk about HG on a daily basis, whilst I have written a book on the subject and talk to sufferers every single day, going on live tv is on a whole different level.

And talking about my own experience, well that was pretty crazy too! I tend to try and keep the focus on general experiences of HG sufferers rather than my own personal experience. This is partly because this more detached focus is needed in my work both for the charity and on the book. But it is also, in a larger part, because I have been burned too many times by people labelling me as “milking it” or a “drama queen” and I struggle with that. A lot.

I do what I do to try and help others – after all, I shall never be having another pregnancy myself, so all this work has no personal benefit to me! I do it because I do not want others to suffer the way I did, because I am the perfect example of someone whose HG went undiagnosed and untreated for far too long. Here are a few personal facts for you:

  • I was never officially diagnosed with HG
  • I was given treatment early on which made no difference and then told there was nothing else they could do, despite multiple trips to the GP, until my 5th month
  • I lost over 10% of my pre-pregnancy weight
  • I was surviving on approx. 300ml of liquid per day at my worst point
  • I was refused IV hydration or admission to hospital, despite being told I was “clearly dehydrated” by the nurse assessing me
  • I was told various things from healthcare professionals including “it’s just because you are worried about the pregnancy” and “sometimes you just have to ‘put up and shut up'”

As such, I have doubted my experience for a long, long time. I haven’t felt a true part of the HG Community of women who had multiple admissions, knew all about ketones, or were prescribed a variety of antiemetics. I felt like a fraud for a very long time… yet I clearly had HG and I clearly needed treatment. Based on the facts you cannot dispute that, and yet I still question myself. And that is the legacy that HG leaves, especially undiagnosed and poorly treated HG.

HG stole the joy of pregnancy from me. It stole my dream of having a larger family (we’re sticking at one child). And it stole an awful lot of confidence from me, confidence which I worked extremely hard to develop over many years.

Going on live tv was utterly terrifying in many ways, especially knowing just how many other women were relying on me to give an accurate portrayal of the sheer hell that is HG. I have no previous media experience of this kind (freelance writing or social media, yes, but tv and radio, not at all). And I am certainly not used to talking about it from a personal perspective. But my experience has been so profound that I know I would do anything and everything I can to create change for all those other women out there who are suffering now or have suffered in the past. And if that includes going on live tv, then so be it!

GMB 3

If you are a journalist and would like to talk to me further regarding my own experience, my work for the charity Pregnancy Sickness Support or my book “Hyperemesis Gravidarum: The Definitive Guide” then please do get in touch using my contact form or call me on 07428 119956

For more information regarding the above topics, please see the following:

Hyperemesis Gravidarum: The Definitive Guide
One Child Family
My Pregnancy Journey

You may also be interested in the following posts I wrote during the Duchess of Cambridge’s first pregnancy, regarding the importance of accurate reporting.

Hyperemesis Gravidarum: The Importance of Awareness and Accurate Reporting

 

International Hyperemesis Gravidarum Awareness Day 2014 – What It Means To Me

 


HGAwarenessDay_UKurl_FB_ProfilePic

Morning all.

After the flurry of the past couple of weeks (both with hospital appointments and work) I find myself sitting here on the morning of 15th May, a date I have been working towards all year, realising I have not even thought about what I would write today. And that surprises me, because for all the work I do in the HG World and all the times I think about it, I somehow seem to have been avoiding writing a post like this. What does HG (Hyperemesis Gravidarum) mean to me?

I actually and honestly do not know where to start with this one. There is no simple answer. In many ways HG was the unrelenting thief that stole away my health during pregnancy, took the joy of carrying new life away from us, and even wiped away a lot of the joy of becoming new parents when depression hit. And that thief continues to work today as it steals the dream of having more children away from me. But HG also gave me an awful lot…

It gave me greater compassion for others, realising that pregnancy isn't the easy-going, exciting time you hope it is for a lot people. Whether it's HG or some other complication, pregnancy can be tough and we all need support to get through that. 

It also gave me even deeper determination to create change. I've always felt a strong desire to fight for those who need it, but without the absolute horror that was my HG experience I don't think I would ever have thrown myself quite so passionately and completely into anything. When I look back over the past 2.5 years since having Little Man I cannot believe just how much I have done. I threw myself almost with wild abandon into a world which needed strong voices to stand up for those who, like I myself had been during pregnancy, were unable to fight for themselves. 

I have written a book. This is nothing new, pretty much everyone who has ever known me well has expected I would write a book one day. But this was not the sort of book I expected to write at all. Prior to my pregnancy I started writing a novel… that was the sort of book I thought I would write. Not an extensive guide to a medical condition. I mean, I don't even have a medical background. It's been tough, I've had to learn an awful lot and have spent hours pouring over research and learning what it all means. And I very nearly gave up several times. But I didn't and thanks to the wonderful passion of my co-author we got there. Our book is currently with the publisher and should be out later this year!

I have also organised two handmade auctions to raise money for the charity Pregnancy Sickness Support (PSS). The first came out of the sudden idea that everybody loves to receive a handmade gift, so why not run an auction and raise money for the charity I loved and wished had been around when I was pregnant. That first auction raised just over £300 for PSS, whereas this year's is still live and will be until Sunday 18th May 2014 at 10am, so why not pop over and see what goodies we have. Some of them are items I made as part of my Nine Months Of crochet challenge – another endeavour I'd have never undertaken without knowing just how hard HG is and how worth every minute the effort was.

And finally I am now the Volunteer Coordinator for PSS. I cannot tell you how much of a privilege it is to go to work every day and work with over 100 volunteers around the country who are as passionate as I am about supporting women in their darkest hours and creating change for the women who are yet to face this journey. I speak to women on a daily basis who are in the throes of HG and I am reminded constantly of how harrowing that experience is and I know, without a doubt, that no matter how overwhelming my work is (and it really is a lot of the time!) it is worth it. Because at the end of the day, we are offering the support and information women and their families need to survive a HG pregnancy and meet their babies at the end of nine very long and hard months.

Which leads me to the greatest thing that HG brought me – my beautiful son!

SAM_0603

I know that HG isn't really what brought Little Man to me. I would have had just as beautiful and gorgeous a baby boy had I sailed through pregnancy without any kind of sickness at all. But because it was such a hard-won battle I am constantly aware of just how very lucky we were that I didn't give up, that I didn't allow the terrible medical care I received to push me beyond my limits, that I didn't find myself making the awful decision that some women with HG feel that have no choice but to make and end the pregnancy. I'll never forget that.

But for all that, my heart still breaks at what HG has stolen from us. That awful thief which made my pregnancy a living hell and which has left us feeling like there is no way we could ever go through it again, even with the extra support that PSS provides. I think back to my pregnancy and wonder how different it might have been were the support network and website PSS has today available in 2011. Would I have allowed myself to get to my 5th month before getting any kind of helpful medical support? Would I and my husband have felt so utterly alone and terrified? Would we have made the painful decision to never have another child of our own?

I'm not saying the support makes HG easy. It does not. But it can make it easier and that is something I will work tirelessly for until the day when HG is taken seriously and women are treated promptly and effectively without having to battle for it. I'll fight so that no other woman has to make the decision to never go through the happy times of pregnancty – the joy of a positive result, the excitement of the first scan, the wonder of the very first kick, the fun in choosing a name, and the overwhelming emotion that comes with holding your baby in your arms for the very first time.

Writing that makes me cry, because quite frankly I want nothing more than to be able to do that all again. But I can't. Sometimes I am perfectly okay with that and other times it breaks me apart. It is like a grief that sneaks up on you when you're least expecting it. And I know so many other women feel that same grief. And I'll fight for them too.

Every woman's experience of HG is different. Some do it once, some do it multiple times. Some are in and out of hospital, some never get admitted even once. Some receive excellent care, others are treated in an appalling way. But one thing remains true throughout all of this… HG brings us together. Once you have experienced it you know the depths of another sufferer's heart and that brings us together in a wonderful community of support and acceptance. And that is something HG gives instead of taking away. And that's what I want to end this post with.

For the second year running, PSS has created an awareness video, sharing the photos of HG sufferers and survivors. And for the second year running it has moved me to tears. Please consider watching it as it shows so much more than I can possibly do in my words alone. The video below is only viewable on the computer, so if you are reading this on a mobile then please click this link to view the mobile version.

Thank you all for reading. If you want to know more about the work of PSS and how much is being done today to raise funds and awareness, then please do their blog at www.ninemonthsof.com

 

Want to read more?

There are some amazing bloggers out there who are writing about their own experiences of HG (or severe sickness that hasn't quite been diagnosed as HG). If you don't know where to start, here's a list of some of my favourites:

Adventures of Adam – Emma is a trustee for PSS and writes a blog about fun activities she does with her son, Adam. She has a whole host of HG Friendly Activities – things you can do with your kids that are easy to set up, take very little adult input, and are unlikely to set off triggers such as smells or movement. Her blog has been shortlisted for an award in the BiBs – you can vote for it in the Fresh Voice Category here. Emma wrote about her own HG experience here

Diary of a Charity Chick – Susie is another trustee for PSS and writes a blog about her charity work not just for PSS but also in other areas. Susie is a whirlwind of activity and never seems to stop, so it is great to see all that she is achieving! She has written a post today which you can read here.

Me, The Man and The Baby – another Emma, this time an award winning blogger who is once again shortlisted for another award for her posts about pregnancy! I came across Emma's blog on Twitter and have followed her journey since. She has written about HG today as well and you can read that post here

Mummy Whiskers – Katrina is an amazingly committed PSS volunteer and whilst I knew her before I became the Volunteer Coordinator my respect for her has grown so much since I took on the role and discovered just how much passion, energy and enthusiasm she has for the charity and the women we support. Katrina started her blog last year and it has gone from strength to strength ever since and she has written an incredibly thorough round-up post today which you can read here. 

Ruby + Lottie – Kimberley is another PSS volunteer who is also a blogger (seems there are a few of us!) and she shared her HG experience with the media (newspapers, magazines and radio) as well as on her blog. She has written a post about it today which you can read here

Spewing Mummy – Caitlin is, without a doubt, the most enthusiastic advocate for women with HG I have ever come across. She helped redesign the PSS website, started the support network, runs a blog (which has been shortlisted for not one but two blog awards this year! You can still vote for her in the Commentary and Campaigns category in the BiBs here) and helped me write the book about HG. She is, and always has been, my inspiration and I am constantly amazed by how much she has achieved and continues to achieve for women with HG. I am so proud of her and would recommend you follow her blog if you're currently suffering from HG. 

Blogging for Change!

Between my Nine Months Of challenge, Sport Relief and International Women's Day, my blog posts lately have been rather more focussed on campaigning for one thing or another. And I have to say, it has given me such a boost and reminded me why I haven't given up blogging yet (despite considering it several times).

You see, in between all the random bits and pieces I have blogged about, I have always had an underlying passion to use my words to raise awareness of various things. It took me a year or so of blogging before I felt confident enough to start writing about the things I really cared about rather than just the day-to-day stuff, but it has always been there. 

At first, it was Endometriosis. And this actually led to my first series on iVillage.co.uk where I wrote as a freelance writer for about 2.5 years. Then it was Hyperemesis Gravidarum, which went hand in hand with the book I was writing. And then I lost my nerve.

I stopped writing about these things because it just didn't feel "right" somehow. Once I was a "parent blogger" I felt my blog needed to be more "carefree" somehow and "fit in" with everyone else's. I think this was partly because I was struggling to find the time to write and partly because I wasn't sure all the awareness stuff sat so well with all the family stuff and didn't think people would appreciate it. But by doing this I found myself losing interest in blogging altogether…

However this past month has reminded me just how much I enjoy putting into words the things that I feel passionate about and sharing causes that others feel passionate about too. I have loved pulling together all the information and stats together for the posts I have written to support Team Honk and have found myself being pulled into social media again too in order to keep up and spread the word.

In fact, I joined in the BritMums Twitter Party to celebrate Inspirational Women thanks to all of this and it was at that point that I realised just what inspires me the most – people who put their time, energy and passion into making change! It doesn't matter if that change is big or small, or whether it is completely personal or affects the international community, all that matters is that when someone is passionate about something they automatically create change.

And I come across a lot of people passionate about creating change.  Suffering from conditions such as Endometriosis and Hyperemesis Gravidarum has made me very aware of just how much work is needed to raise awareness of these and create change for women like myself. Talking openly about either of these has led me to some very difficult positions – people just don't want to hear about them. But they need to be spoken about, if for no other reason than to make it very clear that just because these only affect women they should be taken seriously (rather than being a "taboo" subject or something women should just endure because, hey we're women and that's what women do, right?)

So now I find myself wondering what direction to take with my blog – I don't think it should become a simple commentary blog as I still love my crafts and various things we do around the house and home as a family. I also don't have the time or desire to create a second blog. So I think that I need to find a balance between the causes and our general family life. After all, creating a happy and healthy home for your family is just as important as working hard on a major campaign, isn't it! 

I think it's going to take me a while to find my new balance, but I think the timing is simply perfect. Over the coming weeks I can share with you bits and pieces about the charity auction I'm organising and that means mixing a personal hobby with a major cause I care about. Hopefully that will  instill within me the confidence to continue mixing the two together. And if nothing else, simply being able to share the health issues I am currently having (which I have avoided writing about for the most part this past year or so) will be both good for me and raise some awareness in some small way.

In the meantime, I'd love to know what you think about all of this. Do you struggle to balance different areas of your life on your blog? 

Hyperemesis Gravidarum: List of Support Groups, Charities, Blogs and Resources

I thought it would be helpful to create a "go to" list of resources that can offer support, information and personal accounts of what it is like to suffer from Hyperemesis Gravidarum.

These are all groups, blogs and resources I have come across in the past year while researching for the book I am writing. If you know of any others that I have missed, or have a blog of your own, please do send them to me via my contact form or on twitter

 

Charities and Support Groups

UK Based

Pregnancy Sickness Support is a national charity here in the UK that aims to inform and support women, their families, and those involved in their care. They have a wealth of information on their website and run a volunteer support network and a telephone helpline. 

Pregnancy Sickness SOS is another UK based site providing information on HG.

US Based

The Hyperemesis Education and Research Foundation (Her) is a US based site which also has a huge range of information, research and support available for sufferers, their families and healthcare providers.

The Ayden Rae Foundation is an organisation that is fighting hard to aid the discovery of a cause and cure for HG. 

Beyond Morning Sickness is a site dedicated to raising awareness and sharing the stories of HG survivors. There is a book of the same name, which many HG sufferers read and rely on, and which was the inspiration for producing a UK based book (which is what I am currently working on). 

Canadian

The Motherisk Program in Canada carries out lots of research into pregnancy complications and possible treatment options for them, including HG. Some of their research is included below.

European

Steunpunt HG is a Dutch website offering support and information to HG sufferers.

 

Support Groups

UK Based

Pregnancy Sickness Support (Hyperemesis) UK (Facebook Group) 

Partners' Pregnancy Sickness Sickness Support (HG) UK (Facebook Group)

Mumsnet Hyperemesis Support Board

BabyCentre Hyperemesis Group

US Based

HelpHer Forums

 

Resources

NVP and HG "Cheat Sheet" 

I wrote this "cheat sheet" as part of the book and have reproduced it as a PDF download for easy access. 

Diary for NVP and HG symptoms

Pregnancy Sickness Support have put together this fantastic printable weekly diary for monitoring symptoms of nausea and vomiting during pregnancy. 

 

Blogs

Instead of splitting this group according to country, I have decided to make two groups: "current blogs" (those which have been updated recently) and "archived blogs" (those which have not been updated in the past 3 months, but may still be of interest). 

Current Blogs

HG Survivor

Beadzoid

Mother Eartha's Blog

My Story of Hyperemesis

Knocked Up Knocked Over

Hyperemesis Gravidarum: Through The Fog 

The Leaky Boob

Spewing Mummy

 

Archived Blogs

Midwife to Mum

HG Sucks

My Friend Zofran

HGDad

Hyperemesis Gravidarum: A Journey Through Our Second Pregnancy

Hyperemesis Heroine

Baby You're Making Me Sick

 

Twitter Feeds

The following people on twitter are very active in the HG community

@HGSupportUK 

@AydenRaeFDN 

@Jenni_Wynne 

@pwynne82 

@JaynieN 

@Angeline1611 

@pandabear_rocks 

@KnockedUp_Over

@MumtoAandB

 @HGHusband

 @Mum2LilyandPops

@lauren___d

@Comfortably_Mum

@midwifetomum

 

As with anything, this is not an exhaustive list. Please, please do let me know if you have any other links I can add to this post!

Hyperemesis Gravidarum: The Importance of Awareness and Accurate Reporting

I’m pretty sure that most people have heard the news about the Duchess of Cambridge being admitted to hospital for Hyperemesis Gravidarum (HG). I’m also just as sure that many are thinking “oh just get over it!” because that is the reality of HG, hardly anyone knows what it is or understands how truly awful it is. And unfortunately, with the media using terms such as “acute morning sickness” and relying on the limited knowledge of doctors who have no specialist experience in this area (no disrespect to them, it’s just it is a very specific area), this isn’t going to change very fast.

And so, as a HG survivor who has dedicated most of the first year of her child’s life to researching about the condition, writing a book about it, networking with others and raising awareness, I feel it is time to turn over my blog for a while to the subject.

So let’s start by passing on my sincerest best wishes and support to the Duchess. Hyperemesis is a truly awful condition, terrifying in its severity, isolating in the fact no one understands what you’re going through, and a battle from start to finish. If, like most of us, her symptoms peak between around 7 and 10 weeks, it is going to get worse before it gets better, and could be with her throughout the entire pregnancy. And she has to do this all in the public eye. My heart goes out to her, as it does to any woman suffering from HG!

So what is it?

Well, for starters, it is a severe form of Nausea and Vomiting of Pregnancy (NVP). The term itself basically translates as lots of vomiting (hyperemesis) in pregnancy (gravidarum). It is not “morning sickness”, in fact we need to get away from using that term altogether. It is an outdated term, that trivialises the condition, not only for those with HG but also those with mild-moderate symptoms.

NVP affects up to around 80% of all pregnant women in some form or another. Perhaps this is why there is so much judgement and so little support and understanding for those with more severe forms. If your experience of NVP is that you “felt a little queasy” for a few months  you may find it difficult to imagine the severity from which some women suffer. However, around 30% of women require time off work to cope with their symptoms, and 35% have symptoms that are of clinical experience. So whilst only around 1% of women suffer from HG, NVP is still nothing to be laughed at!

For those 1% who do develop HG, their pregnancy can go from joyous to a nightmare in a matter of days. The severity of sickness doesn’t just build up slowly, it can go from next-to-nothing, to manageable, to totally debilitating within a week. So for all those who wonder how the Duchess could have been so very active and well last week and hospitalised this week, that is why.

Thankfully, since the invention of IV hydration, HG is not the life-threatening illness it once was. However there is still a major need for treatment. Women with HG become dehydrated easily, they can suffer from electrolyte imbalances which can lead to further complications, and they can lose weight extremely quickly. HG is often described as being present in women who lose more than 5% of their pre-pregnancy weight, but many women lose double this amount and more.

IV hydration and anti-emetic medication can help to control the symptoms and make eating and drinking more manageable for the HG sufferer, but unfortunately due to so much misinformation and a fear of treating pregnant women, many have to fight for the treatment they need and deserve. This should not be the case! There is plenty of research out there that includes safety data of various anti-emetic medications and the importance of timely treatment. I have included links to some of these at the bottom of this post.

There is a lack of awareness in the medical community. Many GPs and midwives continue to treat women with HG as having “morning sickness”, giving out the usual advice of “eating little and often” and trying “ginger”, neither of which are helpful for a woman who is vomiting multiple times each day and unable to function. There is a real need for better education on the condition, and it seems there is also a very real need to raise awareness of it in the media as well.

I feel both sorry for the Duchess and relieved that it is finally being covered by the media. But we have a long way to go. Even the BBC is using the term “acute morning sickness”, and this needs to change. The charity Pregnancy Sickness Support, who I am closely connected to, are working tirelessly to change this. But we need help. We need you to retweet, to reblog, to share on other social media sites, to work with us to effect change.

Please don’t just read this news and think “poor Kate” and then forget about it. HG affects a woman for life. Antenatal Depression, Postnatal Depression and Post-Traumatic Stress Disorder often accompany a HG pregnancy. Women and their families affected by it are left with the awful decision of whether to face another pregnancy to expand their family or choose not to have any more children. It doesn’t end after 9 months. So please, read about it and spread the word.

For more information check out:

Pregnancy Sickness Support

Hyperemesis Gravidarum: List of Support Groups, Charities, Blogs and Resources

My info page on Hyperemesis Gravidarum

The Hardest Decision (my post on choosing not to have another pregnancy)

please feel free to email me your own links to add!

References:

Asker C, Nordstedt Wikner B, and
Källén B. 2005 Use of antiemetic drugs during pregnancy in Sweden.
European Journal of Clinical Pharmacology 2005; 61: 899-906

Christodoulou-Smith J et al. 2011
Posttraumatic stress symptoms following pregnancy complicated by
hyperemesis gravidarum. The Journal of Maternal-Fetal and Neonatal
Medicine

Ebrahimi et al. 2009 Nausea and
vomiting of pregnancy: using the 24-hour Pregnancy-Unique
Quantification of Emesis (PUQE-24) scale. Journal of Obstetrics and
Gynecology Canada 31 (9): 803-7

Einarson et al. 2004 The safety of
Ondansetron for nausea and vomiting of pregnancy: a prospective
comparative study. BJOG: an International Journal of Obstetrics and
Gynaecology 111: 940-943

Farrell N. 2008 Hyperemesis
gravidarum: how midwives can help. The Practising Midwife, 11: 12-14

Gadsby R and Barnie-Adshead AM. 2011
Nausea and Vomiting of Pregnancy a Literature Review. Pregnancy
Sickness Support Website

Ismail SK and Kenny L. 2007 Review
on hyperemesis gravidarum. Best Practise & Research Clinical
Gastroenterology 21 (5): 755-769

Jarvis S and Nelson-Piercy C. 2011
Management of nausea and vomiting in pregnancy Clinical Review
article. British Medical Journal, 2011-12-23, 342; 1407-1412

Koren G et al. 2005 Validation
studies of the Pregnancy Unique-Quantification of Emesis (PUQE)
scores. Journal of Obstetrics and Gynaecology 2005; 25 (3): 241-244

Koren G. and Maltepe C. 2004
Preemptive Therapy for Severe Nausea and Vomiting of Pregnancy and
Hyperemesis Gravidaum. Journal of Obstetrics and Gynecology 2004; 24;
500-503

Matok I et al. 2009 The Safety of
Metoclopramide Use in the First Trimester of Pregnancy. The New
England Journal of Medicine 2009; 360: 2528-35

Mazzotta P and Magee LA. 2000 A
Risk-Benefit Assessment of Pharmacological and Nonpharmacological
Treatments for Nausea and Vomiting of Pregnancy. Drugs 2000, 59 (4;)
781-800

McCarthy FP et al. 2011 A
Prospective Cohort Study Investigating Associations between
Hyperemesis Gravidarum and Cognitive Behavioural and Emotional
Well-Being in Pregnancy. Plos One, 6: 7.

McParlin C, Graham RH, and Robson
SC. 2008 Caring for women with nausea and vomiting in pregnancy: new
approaches. British Journal of Midwifery 2008; 16 (5)

 

What I learned this week

This past week I have been busy.

And I have learned a lot.

In fact, I've learned so much I think I'm going to have to split this into three parts.

Here goes…

What I learned at the Pregnancy Sickness Support Annual Conference

  • It is an incredible feeling to be in a room full of people who have experienced the hell of severe NVP and HG during pregnancy. Knowing that whatever you say will be answered with a "YES! That's so true!" or "I know exactly what you mean!" rather than the "Have you tried ginger?" and "I was sick too, but I just had to get on with it" (as if simply surviving every new day wasn't "getting on with it" enough) was ever so slightly mind-blowing.
  • The need for local support groups as well as online support groups is crucial. If a single day in the company of people who truly understand made me feel that great, just imagine how much of a difference we could make to so many women suffering during pregnancy!
  • I'm not the only one who was never hospitalised, and that I should stop saying, "I never vomited, I only ever brought up bile and suffered from awful nausea" because that is still extreme and traumatic and devalues what we went through. Thanks Mother Eartha for that one!!
  • The experience of severe NVP and HG can have as much, if not more, of a traumatic effect on the partners, parents and friends of sufferers as it does on the sufferers themselves. Often it was the mum or husband who struggled to talk about their experience. This needs to be highlighted and makes me glad I have planned a section in the book to cover it.
  • There are some experienced and talented volunteers who have so much they can do to help raise the profile of the charity and build up funds. It makes me so proud to know that people come from all walks of life to try and make a difference to others following their own experiences.
  • I want to do so much more to help the charity Pregnancy Sickness Support and I need to work out how I can use the skills I have to help them the most.

What I learned from BritMums Live

  • There are so many ways that I can use my blog to raise awareness of the things I am most passionate about. 
  • I do not want to work with brands and look at monetizing my blog. Reviews, sponsored posts and advertising are extra work that I'd rather not do right now and though I've dabbled in these on here for the past few months I don't think they really fit. I enjoyed blogging without any responsibility to anyone but myself and my reader and bringing in brands just complicates things. If I review anything from now on, it will simply be because I have bought/used something and truly loved it and think everyone should try it.
  • It's going to be hard to turn down offers from brands. It is so alluring. But I need to stay true to what I want from my blog.
  • Finding my voice is esential. I have known this for a long time but I just didn't know what it really was. Everything and everyone seem to suggest finding a niche, but I don't have one. I forget who said this, but someone said 'our lives are diverse so why shouldn't our blogs be diverse too?' I still need to find my voice, but I'm guessing it centres around passion, support and honesty!
  • Engaging with your audience involves writing things that they can relate to. Finding the words to touch someone's heart (whether that be in a way that makes them feel passionate about a cause too or which makes them laugh and think "that's just what my life is like too") will give my blog a really good energy.
  • I don't post enough photos on my blog, and by utilising light I could take some really amazing photos even with my phone. I want to practise this as soon as Tim is free and willing to be a test subject!
  • I should write about what feels good to me, rather than trying to write what I think will sound good to my audience. It is so easy to get drawn into stats and popularity and I know I have fallen for this so many times. But remembering why I started blogging reminds me that I just wanted to write, and so I should just write and enjoy it.
  • You'll always find bullies and trolls online, but I need to remember that they are everywhere. If someone attacks my work I need to remember it isn't an attack on me personally. And if I see someone attacking someone else, I can always step in and counter-comment. We need to all stick together to get rid of cyber-bullies.
  • eBooks are a great way of getting your work out there. I have so many things, not just the HG book, that I could ultimately turn into eBooks (or PDF downloads if they are heavily formatted and might not translate to eReaders very well). This may be a much better way of earning a bit of extra cash than selling out to advertising and brands which I feel won't sit right on my blog. Advertising and reviews work for some blogs, but they don't work on mine. I need to find my own product, and eBooks may be the way to go.
  • Google+ may not be as bad as I thought it would be. I didn't want "yet another thing" to look into, but it may be worth having a look before deciding one way or the other. I don't want another "twitter" where I avoided it for years only to find I actually loved it once I finally joined.
  • Some blogs are big hits, but there are just as many bloggers out there who are still "small fish in a big sea" and enjoy blogging for the fun of it.  I'm much more like them and should be proud of that in my own way. 
  • Having the confidence to speak up and share your experience or ask a question can lead to some amazing connections and conversations. 
  • So many people have been through such heart-breaking things and the community and support offered by blogging is immense. Grief is grief, no matter what caused it or what form it comes in. By standing together we can find common ground and support each other through things.
  • Sometimes changing our voice is hard. If we've been writing about something emotionally charged and then switch to something lighter and/or more positive we may lose some readers who liked the drama of it all. But we'll always gain new readers. 
  • Dad bloggers are lovely and I want to spend more time reading their blogs and getting to know them. There shouldn't be this distinction between "mummy" bloggers and "daddy" bloggers… we're all parents!

What I learned this week as a whole

  • I like going to conferences and could get used to travelling, staying in a hotel (especially in London) and meeting up with people, discussing things I am passionate about, and learning new things
  • I want to use my voice to help change things. I am a strong writer and I am also discovering that I am quite a strong networker (and, possibly in the future, speaker too). I should be using these abilities to make change, especially as I enjoy doing it!
  • I need to learn to let go once in a while. I don't have to have control over everything in my life all the time.
  • Seeing pregnant women and babies no longer hurts me quite the way it did before. I must be finding peace and healing in some way. That just blows my mind.

I am sure there are so many more things I learned this week. But these are the major ones.

Tell me, what have you learned this week?


The Hardest Decision (HG)

If you haven't been following this blog for long enough to know about our Hyperemesis Gravidarum (HG) journey, then you can catch up here.

I've been wanting to write this post for a few days now but really wasn't sure how to start. So let's go straight in at the crux of the matter: TJ and I made a promise to ourselves last week that we will never put ourselves (and Little Man and our families) through another pregnancy.

We've been going backwards and forwards between "never again" and "but we might want another child". Okay, who am I kidding? I've always imagined having 2 or 3 children and the thought of stopping at one is a very hard one to get my head (and heart) around. But HG made our life such hell that even I began to believe the "never again" option…

And so when that jealousy and anguish started to kick in when Little Man was just a few months old, when I realised I'd never get to experience the newborn stage again, never get to give birth again and cherish those first few hours with my baby, I lost my resolve. I began to believe that if we planned everything meticulously it might be possible. It certainly seemed preferable to that awful feeling in the pit of my stomach every time I heard of another friend having a baby or saw a random pregnant lady walking about town with a smile on her face.

But the more we talked about it and the more I researched it the scarier the whole thing became. We realised that we would have to wait until Little Man was in full-time education (so almost 5 thanks to him being a September baby) and that we'd have to spend a good year prior to trying to conceive preparing ourselves and Little Man physically, mentally and emotionally. 

It would mean potentially getting my health to a certain level only to risk it dropping to one of its lowest points again. And it's not as if my health is great at the best of times! I've had difficulties with my periods since they began in my early teens, but in the past 5-10 years they have really taken a toll on me. And not surprising when I realised that the pain I felt with my Endometriosis was akin to the pain experienced in labour! I had been going to school, university and work for years in the same level of pain as early labour, only thinking to take the day off when it got to the level of transitional labour. And doing that month in and month out, especially when I'd sometimes only go 2 or 3 weeks between periods, has taken it's toll.

So my recovery from pregnancy has been a slow one, what with the reappearance of my periods at 3 months post-partum, complete with nausea. 

And then there are the other factors playing against us. Things like my increased risk of an ectopic pregnancy (thanks to damage from the Endo to one of my fallopian tubes) and the risk of possibly developing Obstetric Cholestasis again. And I was considered at risk of developing Pre-eclampsia throughout my last pregnancy so may well have that as a factor again. And all of this made me begin to think that there were just far too many reasons not to have another pregnancy than to do it all again.

We were lucky that I fell pregnant quickly last time and that Little Man came out healthy and strong. There is no guarantee we'd have the same luck a second time. And the emotional trauma that both TJ and I experienced is ongoing. The guilt I feel at having put us both through it once is bad enough. And that was with going into it having no idea how bad it would be. To do it a second time knowing just how bad it could be, well that would just be too much.

So logically the decision makes perfect sense. 

And yet it is one of the hardest, if not the hardest things I have ever had to do. 

My head and my heart have been at war. And it was tearing me apart. So it felt like a relief to make a final decision, rather than going back and forth between one choice and the other. But it still hurts. 

One of the things I had to do in my CBT sessions recently was write a list of "I deserve…" and it was hard. What I wanted to write was, "I deserve to be healthy. I deserve to have another baby. I deserve to enjoy pregnancy". But I couldn't, because I know that it really isn't likely. Endo continues to affect my health and even if I had another baby of my own it is highly likely it would be a battle rather than a joy. 

According to my therapist, this is the point. These are things that I should be able to write, even if they aren't likely. That I should feel justified in the pain and sadness it brings knowing that these are things I should be able to experience. But it doesn't change the reality…

But even though it is hard, I know it is the right decision for my family. The pain at not having the chance to do all those things connected to carrying and giving birth to your own baby is far less than the pain we could feel by trying to do it all again in spite of all the things against us.

It hurts to know I'll never get to breastfeed another baby, especially as we had such troubles when Little Man was young. It hurts to know we'll never get to go to another scan, to see our baby for the first time, to choose a name and prepare our hearts and lives for a new baby. It hurts in a way that I know some people will know in their own hearts, but so many others will never understand. Not fully.

We feel blessed that Endometriosis didn't rob us of my fertility, but at the same time it is a leading contributor to the decision to never do it again. The time it takes for me to recover from pregnancy and the risk of Ectopic pregnancies that it has caused combined with the risk of complications during pregnancy makes me feel like, in some way, we have more in common with those who physically cannot have a baby than those who can. Because we feel it is an option we just cannot take, however much we'd like to.

But where does that leave us for support? We could try for another baby, so don't really have infertility issues. We're not actively trying and unable to. But choosing not to is not our first choice. 

This is why it is so important for me to dedicate as much of my time and energy to raising awareness of HG and that it is so much more than "severe Nausea and Vomiting in Pregnancy". There needs to be much more understanding of just how bad it can be. There needs to be much more research into potential causes of it and possible medications to help with the severity of the symptoms. There needs to be far more support. All of this is needed to help prevent other women having to face these exact same decisions and to support them if they do.

TJ and I are heading off to the annual conference held by Pregnancy Sickness Support this month, and I am working hard on reading through as much research as I can and bringing together as many "personal experiences" as possible from other HG sufferers and survivors to ensure the book I am writing is as accurate, informative, supportive and representative as possible. It is a big task but it is one close to my heart.

And having this project helps, in a small way, to give meaning to all of this. As a writer, this is an ideal project for me. It gives a purpose to my work. And gives me something positive to focus on rather than only the negative.

TJ and I still have a lot of healing to do. And we still have some big decisions to make. The biggest of all being do we remain as a one child family, or do we look into fostering and/or adoption. And I'm sure I'll be writing about this a lot over the next few years. But for now, we've made the hardest decision of all. Little Man is to be our only biological child. Our journey of creating a family in the natural way is over. And that is taking some getting used to…

NB: I must add here that since writing this I have done much more research and we have discovered just how badly managed my pregnancy was and how we could potentially have a better experience a second time round, is still difficult. So we have opened it up to a "maybe" again, however not for several more years yet!!

Hyperemesis Gravidarum

I just wanted to let you all know that I have now updated the page on Hyperemesis Gravidaum here on the blog.

I have been struggling a lot with this over the past few days and have plenty I’d like to write about, but also have very limited time to blog right now because I want to spend as much time with Little Man as possible.

In short, I have been struggling with seeing other pregnant women, especially those pregnant with a second or third child, because that makes me face my decision to never go through pregnancy again. And that hurts. Anyone who knows me well will know I always looked forward to being pregnant and having a family and to turn my back on expanding my family in that way is painful.

As it stands we won’t want to even think of expanding our family until Oscar is several years older because I need to get my health sorted, having been ill for several years with Endometriosis and the treatments for it before my Hyperemesis Gravidarum hell last year. We still aren’t sure whether we will have more than one child and whether that addition will be through adoption or not.

This past week I started wondering if I shouldn’t have said “never again” so hastily during my pregnancy and yet I know I would be terrified to try again. So basically I am torn in two by it all and am trying to work through my thoughts and emotions rather than pushing them down and letting them build to unbearable levels.

Of course these decisions don’t need to be made now. And I am more than happy with Oscar being an only child for the time being. I love every minute with him and want to cherish these early years and would be quite happy if we didn’t expand the family until he was 4, 5 even 6 maybe. But I know that one day I will have to make the decision as to whether I can face the possibility of HG again or whether Tim and I need to look at adoption or even remaining a one child family.

So I am trying to deal with these emotions as they come up. I don’t want to feel jealous every time I see a pregnant woman. I don’t want to have to change channel every time an advert for One Born Every Minute comes on the tv, or turn of Twitter because it is trending. I don’t want to become bitter about it, and so that means I need to work through it.

So I decided now was the time to finally get around to writing my page on Hyperemesis and I would be hugely grateful if you would check it out.

This post has been added to the Tuesday Tea and Sympathy Linky. Click on the image below to check out the other posts taking part.

 


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