Journey into the world of hyperemesis gravidarum
Our lovely granddaughters are now 6 and 3 and I had intended to write this a very long time ago. However, one thing about HG is that memories do not fade very quickly, if at all. I may have forgotten some of the small details but the rest of it is as clear in my mind as if it had only happened yesterday. It may sound dramatic to say that at times I feared that my daughter might just fade away out of her life in front of my eyes, and in modern times I don't think this would happen.....but I'm sure I am not alone in struggling to believe during those years that life would ever be normal again.
It was my sister who first mentioned the H word! Our whole family had been overjoyed to hear the news that my daughter Fiona and her husband, were expecting their first child, and I could barely contain my excitement at the thought of being a grandmother!
Then it all started.
Fi was suffering from 'morning sickness' but from the outset it seemed to be something rather more. Was it really normal to be so relentlessly sick all day, for her to be climbing up stairs on hands and knees because she was so weak, to be unable to keep even water down, and to be barely able to communicate with us?
Her job as a physio became a daily nightmare, and then impossible to maintain. I drove her to the GP and she was told that she was just unlucky. Some women are more sick than others. So we carried on and then the phone call came from my sister who had been surfing the internet for information and found out about HG.
She said 'Fi has got hyperemesis'...and it was such a defining moment.
All of a sudden there was a reason for what was happening - it had a name and maybe there was a cure. Unfortunately, this was not of course, the case! I will not forget the day Fi saw a different GP in her practice after she had been many times seeking help and been dismissed. A lovely lady who listened to her, tested her urine sample sky high with ketones, and told her she needed to go to hospital. Fi cried, and I cried with her. Relief that someone was listening at last. T
his was just the beginning of endless visits to hospital, always through A and E, which we weren't allowed to bypass, even though we knew what was wrong and where we would end up. Hours sitting with what Fi's brother crudely called 'the vom kit'!!....the cardboard hat, a plastic bag, wet wipes and a pile of kitchen towel. Other patients gave us a wide berth, clearly thinking she had some terrible gastric disease. It was so difficult for Fi to wait for for long periods to be seen...very much a low priority in the triage system..... either feeling desperately sick or actually throwing up. I used to feel so utterly desperate and powerless as she either tried to lie down or put her head on her knees, saying nothing. The end result was always 48 hours in a ward on a drip, at which point she was able to manage a little to eat and looked very much better. 24 hours after leaving hospital we were back where we started.
My son in law is a surgeon and was very keen to keep her out of hospital! I had decided that the best thing was for the two of them to move in with us, so I could look after both, and I would often come home to find a drip rigged up from a curtain rail in our makeshift hospital!! I would serve Fi food in egg cups, coffee cups and saucers in teeny weeny quantities. She even struggled to eat these. Most of the time she was unable to cope with the light and lay in a dark room, only getting out of bed to crawl to the bathroom. Smells of all kinds were a nightmare for her, as I subsequently discovered is common among HG sufferers. We had to abandon cooking and live on cold food, and I wasn't allowed to wear perfume or have flowers in the house! Even the smell of water could start the' vom' process!! Amazingly the result of this terrible ordeal was Charlotte - weighing a little under 7lbs and in perfect working order. Truly a miracle!
Pregnancy number 2 was a leap of faith, in the hope that things might not be as bad the second time.
Sadly they were worse! I had never felt that Fi regained her strength fully after the first pregnancy, and there seems to be very little mentioned about the physical and mental health of new Mums who have gone through HG. Once the baby is born they seem to be viewed in the same way as any other woman who has given birth. The baby has arrived, the sickness is gone, all is well. The reality as I saw it very clearly, was a young woman with a body very weakened by her long ordeal, and a mind traumatised to a degree by it as well.
Had someone been that ill for so long with a disease not connected with pregnancy, it would have been considered necessary for that person to spend time recuperating and regaining strength. HG sufferers do not have that consideration, although perhaps six years on things have improved?
Of course pregnancy 2 brought another dimension to the problem in the form of a two year old child needing care, and a Mother too ill to give it! I found myself in the role of both mother and grandmother for the greater part of the pregnancy....on the one hand a joy and on the other absolutely exhausting! Between us we got through again, and Lucy was born safe and sound in March 2014. Unfortunately we were unaware that Fi had become osteopenic, and she suffered a stress fracture of her pelvis. This gave her months of great pain following the birth and she was on crutches, again unable to care fully for her children. I felt upset yet again about the lack of care for these women before they embark on another pregnancy, and also post partum. This is not the case everywhere I know, and there are some marvelous GPs around who are doing great work for their HG patients.
Throughout these difficult years the PSS was a shining light of hope and support for us!
Caitlin, with her huge work load, was never too busy to chat, and to offer wonderful advice on both a professional and personal basis. With her medical knowledge as well as having gone through three HG pregnancies herself there can be no better person to have on the end of the phone!! She is still working tirelessly for the 'cause' and we can't thank her enough! I've been pleased to take part in the first two rounds of the Definition and Core Outcomes research project for HG which is being carried out currently, and very much look forward to reading the conclusions.
There will be no more babies for my daughter (!) but we will continue to support where we can, and hope that there is a better future ahead for all women who find themselves unexpectedly facing the longest nine months of their lives!
You’re making a list and checking it twice… but what do you get for the HG sufferer in your life who can’t leave the house, is triggered by smells and cant eat much apart from a tiny bit of toast?
Thanks to all of the wonderful ideas from Spewing Mummy followers on Facebook and Instagram I have compiled a list with some links that might be helpful in finding that perfect gift!
Pyjamas; as comfortable and soft as you can find to make those hours lying in bed a tiny bit more tolerable.
Dressing Gown; to wrap up in if she does manage to get downstairs
New bed linen; to ensure a healthy bedroom environment and to enjoy that clean bed sheet feeling for just a minute.
Lip balm; not only helps lips to recover from dehydration but some sufferers like a scented lip balm to help cover up trigger smells (check triggers before you buy!)
Scent free lip balm
Peppermint lip balm
A cosy pillow; to make sure she's as comfy as possible when bed or sofa bound
Unscented candles; to help create a relaxing atmosphere.
Audio book app; to help pass the time
DVD Box set; to help pass the time
Detangle brush; bushing her hair everyday can be a challenge, when she is able to a detangling one can help.
Mediation / hypnobirthing cd or podcast; can aid relaxation
Bubble bath; can help relaxation when a bath is possible (make sure there is someone to call if she needs to get out)
A pregnancy massage; can help relaxation if she has some respite from your symptoms
A scrapbook of memories; so she can enjoy reminiscing and be reminded that this won’t last forever.
A bump to birth photo shoot; to remind her of the HG Hero she is
A 2018 diary; planning ahead could help remind her that HG will not last forever.
A soft knitted cotton blanket; to snuggle up in and keep her at just the right temperature
Netflix; to help pass the time
A favourite magazine subscription; to help those hours pass by a little quicker
Hyperemesis Gravidarum The Definitive Guide: to help her feel informed and empowered
Spewing Mummy Pregnancy Calendar; To help tick off those long days
Maybe book a hairdresser to do a home visit.
Something to look forward too after the baby
A paid night out for the couple after the baby is born as relationships can suffer during hg
And for the HG survivors...
Spend as much time together as a family as you can and make new memories... and possibly a spa day!
Here is a question for doctors and nurses:
You have a patient (not a pregnant women) who is being sick, perhaps post-operatively or due to chemotherapy or an acute condition like appendicitis, viral meningitis or so on. You suspect they may be getting dehydrated and are deciding if you should give them IV fluids. What criteria would you use to assess for dehydration?
Answer: You would probably look at their skin to see if it was dry (does it stay up on the hand when pinched), is their mouth dry, is their urine output down and does their urine appear concentrated. They would be initial signs that would make you think perhaps IV fluids would be good if they are unable to rehydrate themselves orally, for example due to nausea and/or vomiting.
For patients who are starting to get dizzy, confused and drowsy, who aren’t producing tears if they’re crying and have symptoms such as a headache, increased pulse rate and/or low blood pressure you’d be likely to get those fluids up pretty pronto as they’ll likely feel better quickly and even if they could manage sips of fluids orally they’d struggle to rehydrate themselves sufficiently on sips of water.
Additionally, if you happened to dip the urine of someone, say with a Urinary Tract Infection (UTI) and noticed their urine was concentrated with increased specific gravity you would hopefully think “dehydration”.
In my time nursing on wards I never once came across a doctor or nurse use ketones as a test for dehydration or a criteria for prescribing IV fluid rehydration. With the sole exception of hyperemesis gravidarum.
That is because KETONES ARE NOT AN INDICATOR OF DEYDRATION and because nurses and doctors are more than capable of knowing if a patient is dehydrated from their clinical experience without dip tests. And because, with the exception of pregnant women, we generally believe a patient, for example a chemo patient, who says “I can’t stop throwing up and therefore am dehydrated because I’m not keeping fluid down”.
So why are ketones such a barrier to treatment for women with HG? Why do the vast majority of hospital guidelines for treating HG in the UK have “ketones in urine” (often it will specify 3+ or 4+) as a criteria for prescribing IV fluids?
Why do highly skilled doctors and nurses ignore all of their clinical judgment and experience and turn seriously dehydrated pregnant women away from hospital without IV fluids simply because she doesn’t have ketones in her urine? Often these women are showing every other clinical sign of dehydration such as dry skin, mouth and eyes, dramatically reduced urine output and concentrated dark urine, headache, lethargy, dizziness and even confusion. Yet that lack of ketones means she is denied fluid and sent home.
Is it because, ultimately, the doctors and nurses deep down believe that really she could correct the dehydration herself by simply drinking more and not throwing up? Is it because their commitment to following guidelines means that they are unable to trust their own clinical judgement? Is it because they ultimately believe that these women are just making a fuss?
And how do we change this situation?
Well I think really the only way to change it is to challenge it. If you are a doctor or nurse reading this then I implore you… find your hospital guidelines and request that they (ie. Those in charge) take out the line about ketonurina, replace it with “signs of dehydration” (simply that). Need an evidence base for that? Here you go… Click here for the systematic review which has shown that ketones are NOT an indicator of severity for hyperemesis gravidarum. Systematic Reviews are our highest level of evidence and what guidelines should be based on.
Furthermore, ketones shouldn’t be a barrier to discharge either, again because they are not an indicator of dehydration but also because a lot of pregnant women will simply have ketones throughout pregnancy! (for further information on that check out Prof Catherine Nelson-Piercy’s presentation from the ICHG conference this year).
What I would really love to see is a move towards trust by healthcare professionals, not just trust of the pregnant woman who is saying she can’t keep fluid down and therefore maintain her own hydration, but trust of one’s own ability to spot the signs of dehydration and know how to treat it, like you would for every other dehydration inducing condition. Even if a woman has early signs of dehydration sat there in A&E… if send her home she’ll be right back, because guess what… She’s puking up!! Rehydrate her while you wait for the antiemetic script to send her home and perhaps she’ll keep those oral meds down and manage to drink enough to not come back. That early bag or two of fluids could prevent days of admission next week, or even a termination of a wanted pregnancy.
After a very difficult start to the year Me and my HG Heroes are heading off into the Canadian Wilderness for 10 days to enjoy some much needed family time.
We wont have access to WiFi or phone signal, I will reply to any messages and emails during the first week of September.
If you are ordering items from my shop then please be aware they will NOT be dispatched until W/C 29th August.
If you need information and support please register for the Pregnancy Sickness Support Forum by clicking here where you will be in contact with trained Peer Supporters.
Dont forget you can book your tickets for ICHG2017 - the 2nd International Colloquium on Hyperemesis Gravidarum by visiting the website www.ichg2017.org
See you in September!
Have a baby they said, you'll glow they said.
So I did but I didn't.
My glow was more a shade of pond green algae rather than the pregnant lady radiance I had hoped for.
It’s amazing how you know early on when everything's about to change and not just because your boobs are massive, it all proceeds with a puke.
Jamaica Baby! Literally on our ‘oneymoon’. We'd made it a year and so decided to jet off to Montego Bay in celebration. A trip to Bob Marley’s birthplace in Nile Miles and several undignified pee stops by the side of the road did make me wonder, the fuller chest, the spotting which I thought was a UTI (sorry for the TMI) and a pukey 10 hour flight home mistaking sickness for overindulgence and jet lag for what was about to become my hyperemesis hell.
Except I didn't have a bloody clue what hyperemesis was or that it even existed! Little did I know I’d go on to become a ‘professional puker”.
I was pregnant, I just knew it. The second line appeared as I sat on the loo laughing nervously. I needed digital confirmation, 2-3 weeks it told me!
Fuck a duck!
Must inform the husband, he was working away so I rang him up (never call him, he always calls me) I've always been high maintenance. He thought someone had died, and I did a little along the way.
Anyway he's delighted, we did say we'd try. I can tell he's gutted not to be trying more often, trying for longer, but he's chuffed everything’s in good working order! Every macho cloud and all that. By the time he's back home I must be about 6 or 7 weeks and we laugh at my first puke - ah that's the morning sickness kicking in we chuckle, all pregnant and smug together!
I look back at this memory and hate us both!
Then the fog descends, the nausea, the vomiting and not just in the morning but all the live long day! It's like the worst hangover known to woman (and I've had some belters) or think of food poisoning which lingers for 9 whole months!
I naively thought 'this is how it must be' until I couldn't get off the bathroom floor, until my piss was the colour of petrol, until I couldn't even sip water. Husband knew this was wrong, this was not normal morning sickness.
I lay across the blue plastic chairs of the A&E department with zero fucks to give. I looked like a homeless wreck, a drunk, a junkie even but I'd lost the will to care. Anything would’ve been better than this! They tested my urine - ketone levels were high, I was seriously dehydrated. They were lucky I managed to produce any urine in the first place - it really was taking the piss, they got a dribble at best.
Next I was scanned for multiples, we were equally terrified and excited somehow at the prospect of this! It would have saved me the head fuck of considering another potential HG pregnancy to have BOGOF babies first time round.
Alas there was no multiples as the 7 week scan showed what I declared was a single prawn in my womb. I called it a ‘wee bugger’, the midwife called it a parasite (she was on my side). It was healthy, heart beat visible on the screen and it was sucking the life out of me. There was love and relief but I still felt like I was dying. I can relate to Bella in Breaking Dawn (if there's any twihards reading this you'll get my meaning).
So I'm hooked up to IV fluids, I have a memory of sharing a IV stand with some other poor soul who just stepped out a lift. We looked like the walking dead, the stand was the only thing holding us up.
They gave me the cheap anti emetics first and they only made me sicker (the irony)! Zofran literally saved me, Zofran (or ondansetron), an expensive anti emetic usually reserved for chemo patients is pretty much the last resort. Those tiny yellow pills were priceless and now I had new sympathy for addicts.
Zofran helped reduce the puke sessions but the nausea never, ever let up, or the excessive spit (could fill a bucket) or the extreme sensitivity to smell. I couldn't even stand the smell of my own skin, I sprayed perfume on myself before bed and I'd became allergic to husband. Poor guy!
I had my prawn pic to keep me company in hospital on my first admission and I looked at it closely trying to figure out what the hell it was.
A fetus, a parasite, my vampire baby, my little love.
This was the standard chat that followed. ‘Get to twelve weeks and you’ll be fine’, what lies! ‘Ok it’s got to be better at sixteen weeks’, nope! There is no sense of time when you’re in the HG zone, it’s timeless, minutes, hours, days mean nothing. I didn’t even bother to hope for better, I knew it wouldn’t come. I firmly believe HG is the biggest endurance test known to woman. I sat zombie like for the duration. I went off the grid with some not knowing I was pregnant until after the baby arrived. Daytime TV proved to be a mild distraction. Murder She Wrote (which I’d never given the time of day) was a firm favourite. I could figure out a crime scene in less time than Jessica Fletcher, I was embarrassed for us both. It was my fate that I would endure HG for the whole nine months, little love did make an appearance five days early which was a welcome relief of sorts.
Now as much as I was grateful for the Zofran and the doctor who prescribed it, his name was actually Dr Love and I did love him, it left me feeling rather bagged up. Constipation is the curse of the Zofran. They’d given me the usual stool softeners to combat this but of course an HG sufferer is going to puke that stuff straight back up. So, no, the constipation along with the sickness and nausea was my constant companion. By Christmas I was six months pregnant and I’m not sure if the bump was all baby or due to a blockage. The best Christmas gift that year would’ve been the ability to have a crap. I’d googled (as you do) how to alleviate this horrendous situation. Take a warm bath said one website, I knew what this meant – and I did not fancy a festive floater. Lay on your side on the floor with a towel advised another site and so that is what I did. Christmas Day and there I lay on the bathroom tiles, on my side with a towel underneath my arse, husband was thankfully completely oblivious in another room. How undignified I thought as I pulled my knees up to my chest and hoped for the best. The bathroom floor was the scene of many a crime, if I wasn’t hugging the toilet I was laying on the floor as it’s alternative but it worked!
It was a very Merry Christmas!
Prawn baby was now affectionately named Hubble, being the nosey bastards we are husband and I paid for a gender scan. I’d always had a thing for Hubble Gardner (Robert Redford in The Way We Were) and Hubble rhymed with trouble which prawn baby had been nothing but. You can’t resent your unborn child (actually you can, so don’t feel bad about that) but you can resent the situation you find yourself in. I didn’t know Hyperemesis Gravidarum existed until it was written on my notes, until a kindly doctor knew I wasn’t functioning the way a normal pregnant woman should. Before Dr Love, I’d been to see a few GP’s during emergency appointments, sadly I don’t think many of them knew much about it either. One floaty female GP in tie dye told me to persevere as it wouldn’t last much longer. Where was the solidarity? I got back to the car and punched the dashboard in frustration at the ‘fucking hippie’ much to husband’s amusement.
The next GP told me to go straight to A&E and that’s how I knew I was ill and not just pregnant.
The last few months passed by in much the same way, still vomiting and still nauseated. The nausea was worse than the puking. Husband said he could tell what stage I was at in the puke zone by the tone of my vomit groans. The nausea was all consuming, I gained great skill at staring into space, sometimes I didn’t want to talk, sometimes I wanted to maintain the art of silence forever. It’s a lonely place to be, even when you’re harboring a tiny human life inside of you, when you’re puking for two instead of eating for two. Hyperemesis is a solitary affair.
March was the month of deliverance. I’d managed to practice the art of hypno birthing and found the meditations quite soothing so I was ready. I had my birth plan in place and consultant led care so I knew all would be well. I also knew the sickness and nausea had to go when baby arrived. I was so ready for this!
The labour was actually quite liberating. It was a Saturday and I’d had what husband and I later referred to as ‘the last supper’ - some Italian food that I managed to keep down. It was absolutely delicious and miraculous, it was obviously the fuel I would need for getting through the next twenty four hours. Propped in my usual space on the sofa which now had indentations the shape of my arse, I settled down to watch Ant & Dec’s Saturday Night Takeaway (doesn’t everyone)? They’d proudly re-released “Let’s Get Ready to Rumble’ I laugh as they do their dated dance moves and come over all nostalgic for PJ and Duncan. Then I felt a rumble of another kind, some pain which grew more intense, like how I imagine a concertina must feel when being squeezed in half, bloody hell this is it I realised and so I made ‘the call’ to husband, who drove back from wherever he was in jig time. “Get the bloody tens out” I screamed, having been a victim of chronic back pain my whole thirty years even I knew I needed back up. Now I’m all business, managing the tens machine with one hand and my contraction app with the other, both a great distraction from the reality that I was going to have a baby and soon! With all my tech I felt I could rule the world, I was in control, I knew what was going on. Clearly these women who surprise deliver on the toilet never had HG, how could you not know you were pregnant in the first place?
I was so agitated I couldn’t think straight. I was only comfortable laying bent over a chair, I must’ve looked so graceful. I know it’s time to ring the labour ward but midwife tells me I don’t sound like I’m in labour (I’ve always had a good telephone voice) so I soldier on. A trip to the loo and I have ‘a show’ – time to go! Suddenly realise the Husband only has a coupe and I literally can’t sit on my arse so I clamber into the back seat and kneel with my arms hugging the head rest, face squashed up against the tiny rear window. Some poor sod at the red lights think’s I’ve been trafficked. We made it to the hospital which was in the midst of a massive refurbishment so we have to walk round the back of the building to the labour ward, I recall this was not fun as I stop for a contraction to pass and to puke.
I think I’m going to shit myself and go to the toilet as soon as we get there, and it’s carnage with blood everywhere. I think I’m going to die, then I remember this is supposed to happen. Midwife states she’ll need to examine me to see how many centimeters dilated I am and asks me to lay down. I’m adamant I cannot lay down, and ask ‘if we can do it standing up’. She doesn’t know how to take this request and I spy husband trying not to laugh.
I’m five fucking centimeters! I’m off to deliver. Birth plan goes out the window, no water birth for me so I remain as I have done for hours, on my knees. I hear husband at the business end ask the midwife ‘what’s that?’ – ‘Piles’ she casually replies. Classy to the end. Three hours of pushing and the threat of a c section under general anaesthetic which I point blank refuse results in a forceps delivery but finally he is here. Hubble has entered our world. We didn’t actually name him Hubble but the thought did cross my mind. He lay on my chest and we marvel at our miracle. I have some tea and digestive biscuits and I don’t feel sick one little bit, I have third degree tears but no sickness or nausea. You can’t have it all.
The thing with hyperemesis is physical illness aside - the mental torture is just, if not equally as bad. Have a baby they said, you'll glow they said.
The only glow from me was a shade of puke green. To this day, I can vomit just brushing my teeth, my gag reflex is super sensitive (ask my dentist and my husband) again poor guy! When Kate - Duchess of Cambridge was pregnant and hyperemesis made the media I physically threw up. I felt the nausea like it was happening to me. Smells, songs, places can trigger it. It's like puke PTSD and still people ask, 'have you tried ginger'? Jesus Christ how I'd have punched these people if only I had the energy to make a fist. I tried the lot, all the cheap meds, travel sickness bands, two on each wrist, it was a fetching look, very Wimbledon, dry crackers, ginger bastarding biscuits but nothing worked. Mint humbugs helped for a bit - reduced the saliva output for a while then I was sick of them too.
I wanted the glow, to be on mat leave doing pre-natal Pilates and lunching around town picking out things for the nursery, but no! I lay in bed graduating to the sofa on a good day, permanently in pjs, make up less and mojo less (saved a fortune on cosmetics - so much so I bought the husband a Rolex). Sick pay had a whole new meaning. He did alright out of it really.
Ask anyone who's had HG and they'll tell you the same, they felt robbed. Robbed of the pregnancy they'd dreamt of, longed for and that's a hard pill to swallow.
Today I am not the woman I once was, yet now four years down the line I find myself hankering for another, a sibling for my HG hero who I love with all my heart, who was worth every puke, every pill, every pile and who despite it all is pure perfection. We endured it together, we were a team from the start, we have a special bond, we made it. I'm still stunned that somehow during my HG hell I managed to keep him safe inside. Not only does he know the sound of my heart from the inside, he knows a good puke when he hears one.
So what now? Do I gamble, do I risk it all, my health, my sanity?
Have a baby they say,
You'll glow they say
'Fifty Shades of Green' Written by Christine Howie -
HG Survivor and Pregnancy Sickness Support Volunteer
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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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