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International Hyperemesis Gravidarum Awareness Day 15th May

Together We Can Achieve Great Things (Thoughts on International Hyperemesis Awareness Day)

International Hyperemesis Gravidarum Awareness Day 15th May

Today is International Hyperemesis Gravidarum (HG) Awareness Day, an event which will always hold a very special place in my heart. I may not write much about Hyperemesis any more, but it is something I will never forget. Over the past 3 years I have seen awareness of the condition grow, leading to greater support and better care for families affected by it, in a way that I could never have imagined when suffering from Hyperemesis myself in 2011. And that’s all because individual voices have come together to enact greater change than any single voice could.

Now don’t get me wrong, individuals can make a huge amount of difference. I’ve seen it happen so many times within the HG world: the woman who dedicates vast amounts of time to supporting other women who are suffering through a hell that only she can understand; the doctor who goes above and beyond to ensure that a patient in their care receives the best possible treatment; the team of midwives who agree to meet and listen to a woman share what HG was like for her and how to best support other women like her; and the partners, family and friends of a sufferer who rally around her to make every day as easy as possible, and attend medical appointments to help advocate for her when she is unable to do so herself. These are all really important ways in which individuals make a massive difference to those around them. And we should never underestimate how much change one person can make! But it is through working together that lasting change on a large scale is achieved.

The changes I have seen over the past three years have come about because many, many individuals have come together for a common cause. Multiple charities have formed working relationships which enable them to achieve more together than they ever could alone. The international collaboration of the two big HG Charities, Pregnancy Sickness Support (PSS) here in the UK and The HER Foundation in the US, sparked the idea for an International Hyperemesis Gravidarum Awareness Day. And a recent collaboration between PSS and the British Pregnancy Advisory Service (BPAS) enabled the production of a report on the number of women feeling like they have no choice but to terminate a much wanted pregnancy due to Hyperemesis. This report led to further media coverage, including mentions on the front page of national newspapers and an interview on Women’s Hour, something which may not have happened without working together.

Even within the individual charities themselves, there are great developments occurring, and this is all because of the sheer number of people supporting them. Take PSS, for example: the active forum is only thriving because of the many members supporting each other through the opportunity offered to them on there; the Support Network only works because of the amount of dedicated volunteers who offer their time and support to those in need (it also relies on many others spreading the word about its existence, as well as funding for staff to coordinate it and further developments); and the research undertaken often relies on the various voices of those who have suffered coming forward and sharing their stories.

This time last year my life was pretty much overtaken by the cause – I was working vast amount of hours every week as the Volunteer Coordinator for PSS and also working on final edits of Hyperemesis Gravidarum: The Definitive Guide. I lived in a world that was full of equal amounts of desperation from those currently suffering and passion for change from those who had survived HG. And despite personally dedicating huge amounts of time and energy to the cause (too much, in retrospect, for a healthy work/life balance), I never once lost sight of the fact that it was the multitude of individual voices that were making the vast changes I was lucky enough to see happening right before my eyes.

My life is very different now to what it was this time last year. 12 months ago I was burning out, fast. Despite the fact that there were many, many people working together to enact change there just weren’t enough of us to make change on the scale that we wanted to. It is a battle that so many causes face, and it is one that is only won through people coming together so that their individual voices are amplified by those singing the same tune. The greatest lesson that I took from my time with PSS was this – one person can change the world, but only through working with others.

So today I am asking you to think about what is important to you. What do you feel passionate about and what do you wish you could change in the world? Please don’t ever think that you cannot make a difference, because you can. Don’t compare yourself to others and feel that you aren’t strong enough or wise enough or talented enough – everyone has something that they can give that is unique to them and will, when given the opportunity, make the world of difference. Whether you can give 10 hours a week or just the odd hour here or there, whether you have specific skills, knowledge and experience or are simply passionate about the cause, and whether you feel confident approaching others or terrified of making that first call, please do consider taking that leap and contacting a group or organisation who need your support and will welcome whatever you can give.

Together we can achieve great things… and it all begins with you!

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

 


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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!

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.