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Journey into the world of hyperemesis gravidarum...
06Jan 17

Spotlight On PSS Volunteers

“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: Steph Barnden

I have always found explaining Hyperemesis Gravidarum to people quite difficult, they hear the words vomiting and pregnancy and then move on, as if of no significance…. lots of women suffer with sickness in pregnancy, right? Only when I wrote a small description of my experience of having hyperemesis on Facebook did friends and family start to see that it is a lot more than just vomiting in pregnancy.

HG is physically debilitating, my experience of HG was… vomiting so much that I vomited blood, so much that the acidity of stomach contents made me teeth start to crumble. So much that nothing, not even water, not even my own saliva stayed down for days and my system was running on empty. My heart was racing from severe dehydration, and was too dizzy to stand. Hoping that I would be accepted for IV fluids and anti-sickness medication.

From working as a nurse with HG sufferers, many relatives, and colleagues asked me what they could do to help sufferers. Support has got to be one of the most important lifelines that can help a sufferer get through what can be a very long 9 months. I had fantastic support through my pregnancies from my family, my mum had also suffered HG in her pregnancies– she even cried when she found out I was pregnant and suffering as she knew the battle I had ahead of me.

HG is physically debilitating, but what a lot of people don’t see is what it does to the person mentally. Personally, I felt isolated, being too sick to work, to go out and meet friends to socialise. I felt like I had let my ward down, as I knew it would make them short staffed. I felt like I had failed as a mother, having to move into my parents for my second pregnancy as I couldn’t look after my daughter, hitting rock bottom when I was so dehydrated to even produce milk. I felt like I lost my identity, I could barely recognise myself in the mirror, pale, greasy haired, sunken eyed person I had become, having to get my husband to wash and dry my hair as I didn’t have the energy and the movement would make me vomit. To be able to support someone through this is such a valuable thing to do. To know they have someone to talk to, break down to can give them that little bit more hope to keep going when they are running on empty.  

I stumbled upon the pregnancy sickness support website (typically after my two pregnancies), I was totally and utterly gobsmacked to find something that related to me and my experiences. Two long pregnancies suffering physically and mentally from HG and I had finally found a hub of information on advice, medication, and best of all SUPPORT!

As soon as I saw the link asking for 1-2-1 support volunteers I knew I wanted to do it! I knew I wanted to help sufferers. Whether if it was to empathise, let them vent after the third person has said “have you tried ginger?!” Or give guidance on helping to find a local HG day unit.  I know I would have also loved to have this 1-2-1 support and guidance whilst I was pregnant, being able to share experiences and mentioning things to try.  Someone who had been through it and can understand EXACTLY what you are going through, the acid burning vomit, overwhelming exhaustion, the excess saliva, and the advice that slowly starts to wear thin, with your mental health in decline when you can’t even keep a sip of water down let alone ‘trying crackers’.

My sister fell pregnant and started to suffer from HG at the same time I joined PSS, so I did get to use her as my guinea pig before getting to know other sufferers, it was heart breaking to see her suffer, but to hear the relief she had when something I had suggested had worked was a fantastic feeling! I also found it quite therapeutic in being able to offer advice and move on from my own experiences and have continued to do so with other sufferers.

Receiving messages like “you have been such a help to me”, “it is so much easier talking to someone that has experienced HG”, make it worthwhile. HG can be a very lonely, dark and challenging time, and there is nothing better knowing I have helped, even if it is in the smallest of ways by just checking in and seeing how they are doing.  

If you are thinking of volunteering, I couldn’t recommend it enough. I had wanted to give something back to the community and volunteer in some sort of way, but with work and two young children I knew I didn’t have much time to give. 1-2-1 volunteering can involve calls, emails, texts and meetings so I can still help someone even if I am at home. I find this role extremely therapuetic and rewarding and best of all getting to know women and making friends!

Kerry Barnden: Steph's Sister

As Steph's older sister I watched her go through two HG pregnancies, which was heartbreaking. Steph's the youngest but did the marriage and babies thing way before me! Our mum had also suffered HG with all three of us in the 80's but was never really given the diagnosis of HG and was made to feel as if it was all in her head. Because of this she suffered PTSD and depression. 

When I fell pregnant at Christmas last year it had never occurred to me that I would get struck down with it too! What were the odds?! Then bang on 6 weeks I was hit with the most horrendous nausea and vomiting and I just knew that I was heading down the HG route. There was no way it was just morning sickness.

In the following couple of weeks I lost 10lbs and was started on stemetil then cyclizine and ranitidine. I was off work for 4 months and confined to the house. Only leaving to get a repeat prescription or a sick note. 

Steph was always there to listen to me cry when I said I couldn't go on. She listened to me tell her things I darent tell anyone, how I'd dreamt of a termination and feeling better instantly in my dream. She gave me tips on how to manage the excess saliva by chewing on towels! And told me to eat and drink anything that was 'safe'. She also told me foods to avoid, the ones that were unpleasant on the way back up!!! She knew what I was going through and that helped me so much. Friends told me to try ginger and to get fresh air. Steph told me to take my meds and rest as much as possible.

Seeing Steph go through HG twice, with such a short gap in between, was both heartbreaking and inspiring. The love that she had for her babies. The love that you don't understand until you have a child of your own.!

In short, I am lucky to have Steph, not only as my sister, but as a peer supporter for HG. My little Matilda wouldn't be here without her. I know that in the future, if/when either of us has another baby, we will be able to support each other. 

If you would like more information or to apply to become a PSS Volunteer please click here

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Hyperemesis Gravidarum - The Definitive Guide by Caitlin Dean

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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.

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