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Journey into the world of hyperemesis gravidarum...

Journey into the world of hyperemesis gravidarum

For those of you new to my blog I'm currently undertaking a PhD in Health Studies focusing on hyperemesis gravidarum to help further the international research efforts. PhD's are fairly long and arduous processes and a hell of a lot slower than my usual pace of churning out surveys of women's experiences and so on. But, the research produced is of a far higher quality and therefore has a much greater impact on the world of evidence based medicine. 

As part of my PhD I'm conducting a Narrative research project and after a long process of developing the protocol, applying for ethical approval and piloting it... then having to apply for an adjustment of ethics. Anyway, its now ready! so if you are interested in taking part please re on.....

 

The Impact of Hyperemesis Gravidarum on Women's Reproductive Lives - A Narrative Research Project

Have you experienced a pregnancy affected by Hyperemesis Gravidarum (HG)? Do you want to tell your story for research?

HG researcher, Caitlin Dean, in conjunction with Plymouth University, is recruiting women to take part in a project to explore women’s experience of HG and how it has impacted their reproductive lives. If you have had one or more pregnancies affected by HG you may be eligible to take part.

We are looking for women willing to share their whole HG story, from beginning to end including any potential affects in the future. You can either write or type your story in your own time or you can tell the researcher, Caitlin, your story over the phone, via skype or face-to-face (depending on location). If you choose to tell your story by phone, skype or face-to-face it would be recorded and transcribed. After this Caitlin may get in touch with you again to clarify parts of your story or ask you to expand on aspects. For full details of what is involved please click here.

To be able to take part you need to live in the UK and be over 18 years old.

We want to ensure that women from all sorts of backgrounds are represented and that the women interviewed represent the diversity of pregnant women in Britain today. To ensure this we are asking women interested in taking part to fill in an online form giving us some details about themselves.

Hopefully everyone who wants to take part will be able to but if a lot of women apply then we may not be able to include everyone in the research. We will contact you within one week to let you know if you are able to take part.

Please click here to apply to participate in this research.

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Questions with Caitlin - Questions & Research

Here is my next vlog in the 'Questions with Caitlin' series all about the questions i have received and the research available to answer them

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“Volunteers do not necessarily have the time; they just have the heart.” — Elizabeth Andrew

Following on from my series of HG Heroes recognising  partners, healthcare professionals, friends and employers making a massive difference to hyperemesis sufferers i  will be spending the next few weeks highlighting the vital work of the Pregnancy Sickness Sickness Support Volunteers.

All of the Pregnancy Sickness Support volunteers have been through NVP or HG themselves or have closely supported someone who has (Husband/Partner/Mum) so they understand what its like and how hard it is to go through. They give up their time to support others through this debilitating condition in the hope of relieving their isolation and loneliness and provide them with support and information that can help them through each day.

"I’m not alone. She has been through it and takes the horrendous guilt that I have away, especially In relation to having time off work, and having to take medication. This is a lonely illness that very few understand but knowing someone is there that does is support like no other." – Sufferer 2016

‘Guiding women through the horrific journey of HG can be so tough. The despair and torture they go through brings it back to me every time. It can be raw and emotional, but to be able to share their journey and have a mutual understanding of their experience is quite special. I’ve found volunteering for the charity quite healing.’ – Volunteer 2016


PSS Volunteer: Lindsay Salmon

I had never even heard of Hyperemesis Gravidarum until it was written on my sick note for work during the first trimester of my first pregnancy. I had an image of what pregnancy would be like which involved lots of fabulous maternity outfits, pregnancy yoga and generally blooming! Sadly, it wasn't like that for me. It involved 24/7 nausea, vomiting continuously, repeated hospital stays, endless canulas, greasy hair, the same clothes for days on end and general misery.

I felt isolated and cheated of a normal pregnancy and I felt that nobody really 'got it'. My friends and colleagues were sympathetic and supportive but still didn't really understand what I was going through. Family were amazing but far away. The impact of HG was long lasting for me and was a contributing factor in the PND I suffered but after lots of counselling, I felt ready to consider another pregnancy.

That's when I found Pregnancy Sickness Support. The relief I felt was immense. A whole community of people who knew what I went through and really understood! The first time I went on the forum I'm certain I shed a few tears reading about the experiences of others that were so familiar to me. I found the forum a valuable resource when preparing for a second pregnancy and after a short time became a moderator, ensuring the forum ran smoothly which I found really rewarding and cathartic. By helping others, I was also healing my own wounds; answering their questions, answered my own; and by supporting them through the horror that HG is, I ensured they didn't feel as alone as I did during my pregnancy.

I agreed to become a 1:1 volunteer shortly after and it was the best decision I have made in a long time. I was unsure whether I could offer the support that was needed as I was still having my own emotional struggles, but once I was assigned my first ladies, it became clear that all I needed to do was listen and empathise. Sometimes they just needed to know there was someone out there who knew what they were going through, someone who knew the medication was necessary and wasn't judging them for taking it; someone who knew that an HG pregnancy is awful but it doesn't mean you won't love your baby; someone who knew that even on the worst of days, you won't always feel like this. The rewards for me were inherent. Supporting my ladies, as I call them, just became a part of my every day life and I feel a bit lost when I don't have anyone to support.

One of the best moment of volunteering was having the chance to speak to one of the ladies I had supported on the phone. She was over the worst of it and told me I could 'have my life back now'. It was lovely to hear feedback directly from her about what had helped her and how my support had made a difference to her experience.

After having my younger daughter, I was asked to present to a class of student midwives at a university in London about the effects of HG and the support that is available from PSS. It was a really proud moment for me to stand up in front of those future midwives and speak frankly about what it is like to survive not one but two HG pregnancies and how they can support the women they care for. As a teacher, I wasn't phased by presenting to all those people (although they were slightly older than my usual audience!) but as I was telling such a personal story I was worried my emotions would get the better of me. They didn't! And in the question session at the end, it was clear this class of student midwives had really taken it all on board and were keen to know what THEY could do for women suffering with HG. It was a wonderful feeling to know that I had made an impact on so many in such a short time.

I would love to do more of this work with PSS and to have some kind of standard training Nationally so that all midwives entering the profession have heard of HG and PSS and can better support the women they care for both in the community and in hospital.

So for any of you amazing HG survivors out there who aren't sure whether you could volunteer for PSS, give it a go! The experience has boosted my confidence hugely in addition to healing some of my own HG wounds. I've even started training to become a counsellor since becoming a volunteer as I feel like it's my calling.

Vounteering can take as much or as little time as you can offer and you can make such a difference to the lives of the women you support. There is lots of support for volunteers, both from Karen at PSS and from other volunteers.

If you would like more information on volunteering please click here

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“Volunteers do not necessarily have the time; they just have the heart.” — Elizabeth Andrew

Following on from my series of HG Heroes recognising  partners, healthcare professionals, friends and employers making a massive difference to hyperemesis sufferers i  will be spending the next few weeks highlighting the vital work of the Pregnancy Sickness Sickness Support Volunteers.

All of the Pregnancy Sickness Support volunteers have been through NVP or HG themselves or have closely supported someone who has (Husband/Partner/Mum) so they understand what its like and how hard it is to go through. They give up their time to support others through this debilitating condition in the hope of relieving their isolation and loneliness and provide them with support and information that can help them through each day.

"I’m not alone. She has been through it and takes the horrendous guilt that I have away, especially In relation to having time off work, and having to take medication. This is a lonely illness that very few understand but knowing someone is there that does is support like no other." – Sufferer 2016

‘Guiding women through the horrific journey of HG can be so tough. The despair and torture they go through brings it back to me every time. It can be raw and emotional, but to be able to share their journey and have a mutual understanding of their experience is quite special. I’ve found volunteering for the charity quite healing.’ – Volunteer 2016

 

PSS Volunteer: Claire Sceeny

My HG experiences

I had only very vaguely heard of HG before my first pregnancy, a friend of a friend type story about someone who was so sick she lost weight.  I remember giving it barely a passing thought, thinking she sounded lucky to have not put weight on.

That view totally changed when my first taste of “morning sickness” knocked me for six.  I had always considered myself strong and healthy but I just could not cope with this.  I was nauseous 24/7, and the nausea kept me awake for 22 of those hours, every day for 8 long months.  I was sick or retching dozens of times every day.   In this pregnancy I was never hospitalised but I was signed off work for most of the pregnancy and have no happy memories at all.   It was an utterly miserable experience and I felt robbed of the joy which most women seem to find in pregnancy. 

I loved being a mum but for a long time really wasn’t sure I could do it again, but just over 3 years later I was pregnant again.  This pregnancy was even tougher. I was formally diagnosed with HG and hospitalised 3 times.  I missed 8 months of my daughter’s life while I lay bedbound, dehydrated and lonely.  Those nausea and vomit ridden months of my second pregnancy passed very slowly.  I missed my normal life so very much.

I found the PSS website after I was discharged from my first hospital stay.  I remember it being a revelation – for the first time in over 3 years I read things from people who seemed to have pregnancy experiences close to my experiences.  Friends had tried to understand and to help, but nothing can compare to the understanding you get from someone who has been there.  

Volunteering for PSS

I’ve been a PSS volunteer for almost 4 years now.  My motivation for becoming a PSS volunteer was simple.  I had seen and experienced the value of Peer Support and I wanted to give something back.  I didn’t want others to experience the loneliness I had felt.   On a personal level it has given me some closure, and at times the women I am supporting help me to feel understood.

1-2-1 support varies from person to person but usually consist of a text relationship where women ask for information and support and share their feelings about the pregnancy.  I give emotional support, share my experiences and direct women to information on the PSS website, info which can be literally life saving.

It isn't always easy being a PSS volunteer though.  You have your own family, and your own HG journey to recover from.  It can be really hard to hear women going through similar experiences to those you went through.  I have supported women through some terrible times and difficult decisions.  But the charity are very supportive to their volunteers so I never feel alone and it is so worth it to make a small but vital impact on women’s lives.

Fundraising for PSS

PSS are devoted to making life better for women with HG and severe pregnancy sickness.  The charity only employ one person, everyone else involved is a volunteer, and they get no central funding, it is all donations.  It seemed inevitable that at some point I would fundraise for PSS.

Before I had my children, running was really important to me but because of HG I had been unable to run during pregnancy and found afterwards that as well as losing strength and fitness due to HG, it was hard to trust my body.  This made trying to return to running at the level I as used to was incredibly hard.  By the beginning of 2016 I was finally feeling a little like the old me.  I decided it was time to run a marathon and to do it sponsored for PSS.

I chose to run the Snowdonia Marathon in October 2016.  The course follows a loop for 26.2 miles on the roads around Wales’s highest peak.  There are three massive massive hills in this beautiful run.   It seemed apt to be climbing mountains for PSS – HG is harder than any marathon could ever be! 

I was just getting started with my fundraising when disaster struck and I suffered an injury which severely limited my ability to train for the marathon.  It really looked like I was going to have to pull out before the race even started.  This was really tough.  I felt like I was letting down PSS the people who had already sponsored me down, and though the charity and friends reassured me I was hugely disappointed.

After much agonising, pain and doubt, I decided to jog the marathon on very little training.  I figured I would rather run it slowly than not at all.   I started it not knowing if I’d make it round but against all odds I did it, bursting with pride at my own determination and for the fact that I could now raise some more sponsorship for PSS.

All the doubt over whether I would do the marathon really impacted on my fundraising.   I felt unable to shout from the rooftops about it when I wasn’t sure whether I would do it.  But after the race I continued to share my story and am still taking donations for PSS via my sponsorship page:

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=ClaireSceeny

Fundraising has helped me as well as PSS.  The blog posts I wrote for www.ninemonthsof.com enabled me to get on to paper some of the feelings I have had about HG, and to share those with both friends and strangers was a really positive experience.  It also has another benefit of being a vehicle for publicity about the charity – I have had several people tell me that they, or someone they know had suffered but never heard of PSS until they read my posts.

For anyone considering volunteering or fundraising for PSS please just do it, your contribution will make such a difference and I am so so proud to be a part of this charity.  

If you would like further information about volunteering or fundraising for PSS please click here

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Fund Hyperemesis Research

The Book

Hyperemesis Gravidarum - The Definitive Guide by Caitlin Dean

The Kids Book

Hoe to be an HG Hero by Caitlin Dean

About Me

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

About this blog

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

Previous award nominations

MAD Blog Awards UK 2015

 

VOTE FOR ME BiB 2014 COMMENTARY