Spotlight On PSS Volunteers - Claire Sceeny
“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:
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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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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