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Journey into the world of hyperemesis gravidarum...
19Jan 17

Spotlight On PSS Volunteers - Lindsay Salmon

“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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17Jan 17

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:

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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12Jan 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: Rachel Hawthorne

I've suffered severely with HG myself several times and know all too well the devastating impact of both the physical and mental symptoms. I believe HG changes a woman. Surviving it requires finding great inner strength and it leaves an emotional scar that only another sufferer understands. 

I began volunteering for PSS after having my daughter, Mollie, 4 years ago. I decided that I wanted to turn my awful experience of pregnancy into something positive for myself and others. I wanted to help support other women, to reassure them that they don't have to go through this alone and to raise awareness of the condition, so that sufferers receive better treatment by all.

It is heartbreaking when I hear women I support who are lonely, frustrated and at rock bottom, at a time when they should be able to feel their happiest. To be able to help them through such a dark time by giving them words of encouragement, a shoulder to cry on and access to accurate medical advice and research, gives me a huge sense of satisfaction. To reassure women that their precious baby can survive this ordeal and that there are safe medications that can help is so rewarding. The greatest reward of being a supporter for me, is hearing the wonderful news of the safe arrival of a tiny human being into our world. Hearing their name for the first time and seeing photos of those babies brings a tear to my eye, as I have had the privilege of being a small part of their battle to survive. That feeling is priceless.

In addition to one-to-one support, I was really pleased when Caitlin approached me to join the Hyperemesis steering group for Nottingham University Hospital Trust. Having been treated for HG myself many times at Nottingham's QMC, I was eager to work alongside some of the staff there to improve services and provision for women via their HG Day Unit and treatment guidelines. It's fantastic to see the hospital taking proactive steps to improving the treatment of pregnancy sickness and working with PSS and previous patients to ensure this is done successfully. I was pleased to take part in a press release to promote the hospital's developments and to raise awareness of HG. Talking about my personal experience of HG was emotional, but also therapeutic.

Since joining the steering group, I have used the new facilities myself whilst pregnant with my son, Oscar, who is now 10 mths old. The unit enables women with severe NVP and HG to access IV fluids, antiemetics and other medical treatment directly, as outpatients. It's great that several hospitals around the UK are now offering this service.

I hope to visit the local unit soon to discuss local fundraising opportunities and to look at any further improvements that can be made.

I really enjoy being part of the PSS team. It's great to find other women who share my passion for promoting awareness of HG within the medical sector and general public. The best part, for me, is believing that I may have helped a tiny life to grow and survive, by using my own experience to help other women fight this awful condition. I want to make sure research and education ensure provision for women with HG continues to improve in the future.

It can be emotional volunteering, especially when women are battling with mental health issues or when they feel so exhausted and desperate that they consider terminating their much-loved babies. It sometimes  brings back painful memories for me. It's not always easy to know what to say, but my experience reminds me that just knowing you have someone there to listen and to empathise is incredibly important. 

If you're reading this and thinking of volunteering then I would say please give it a try! You can make such a big difference to someone's life by doing something small. Every HG sufferer deserves to have someone to support them through their journey.  Whether it's fundraising, peer-supporting or getting involved in research, you can become a valuable asset to a small team of passionate, dedicated, friendly volunteers. A team I feel proud to be a part of.

If you would like to register as a PSS volunteer or would like more information please click here


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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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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

 

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