Monday, 21 November 2011

5 weeks, 6 days - November 21st 2011

I'm starting to feel ropey. Ropey and panicked and worried.

I know the HG monster is there waiting for me, lurking just around the corner, waiting to pounce and bring me down with him. I've just got to keep on walking through this corridor as calmly as I can, believing that when he does attack I will be ready for him. I can feel his presence, smell his smell - I know I'm about to do battle soon.

The daunting unknown of when and where he is going to strike is terrifying.

I have to keep eating, I'm constantly shaking and my stomach feels in turmoil. I don't want food, I have no appetite, but I know if I eat I do feel better, for the moment at least.

Today Martin has gone away to work. He will be away every week now, back at weekends for the next 4 weeks. I feel for him as it is hard enough for him having to leave behind his wife and beautiful daughter, but even harder knowing that potentially I could be very poorly and he can't be here to help. At least I have my wonderful mum who is such strength and support to me. I can leave Gracie with her knowing that she is in safe loving hands and Gracie loves being with Granny, so much so that on the days we don't see her she asks to see her. I am lucky that I am very loved and supported by my Mum and Husband and together all of us will take each day as it comes and deal with what we are thrown.

Thursday, 17 November 2011

5 weeks, 2 days - November 17th 2011

I'm only 5 weeks and 2 days but ive bloated out to about 5 months pregnant. I did put on some extra weight ready to lose for the onslaught of the HG but really I look and feel many months into a pregnancy!
Still no nausea to report, just fatigue. I can fall asleep in an instant. It is like there is an off switch that suddenly gets flicked. I'm eating as much as I can and as well as I can. It's hard waiting and wondering what the next few weeks have in store for me and hoping that whatever it is I will cope.
I also worry for Gracie, my 2 years and 9 month old. She is a bright happy intelligent child but also very sensitive and I worry if I get very ill what effect that will have on her. I am lucky to have an extremely supportive and understanding Mum who is helping me so much with raising Gracie and encouraging myself and Martin in our role as parents. We couldn't have contemplated another pregnancy without her support and help.
That's the thing in HG, support and understanding is the key ingredient to caring for someone suffering. I can't help thinking of all the women across the world who face isolation and abuse in pregnancy simply from a lack of knowledge of the condition and this really troubles me. The last woman to die of HG in the UK was in 1939. I wonder how many women, particularly in third world countries are dying from it and what on earth I can do to help them.

Wednesday, 16 November 2011

Dizzy - November 16th 2011

Today I am 5 weeks and 1 day.

It was at 5 weeks pregnant with my last pregnancy that I was first admitted to hospital so I am just in a state of waiting to be knocked sideways by it, all the time hoping that it won't be that bad this time.

The Cyclizine, at least I think it is the Cyclizine, is making me feel extremely dizzy and lightheaded all the time. I permanently feel like I have had about 3 glasses of wine, fuzzy and slightly out of control of my actions.

It was my husband's birthday at the weekend, so we managed to go out with some friends and family and celebrate. We also began to tell a few select people, as last time the way we told people was by Martin telling people I was very ill in hospital because I was pregnant. Not a particularly nice thing to have to do. So although we know it is very early to be telling people, 1 in 5 pregnancies ends in miscarriage, I want to tell people whilst I am upright and can pass on the news in a positive happy way, not from a hospital bed!

Most people we have told have been very pleased for us, but no one really can fully appreciate the apprehension of facing another HG pregnancy. The conversations about thinking positive and second pregnancies being much easier are hard to face when you know people are being well meaning but simply do not comprehend what HG is. So, you just have to smile and thank them for their good wishes, deep down hoping that they really are right.

The reocurrence rate for HG is 80% and  in subsequent pregnancies the symptoms are often worse.....

 Pregnancy is a miracle and some people believe it is a woman's right to be a mother and have a child. All I know is that pregnancy and birth is a hard task for every woman, and raising a child is the most rewarding demanding task a woman will ever undertake.

The other thing that really has started to make me think is the keeping it a secret until week 12 issue. Now I know it is that if miscarriage occurs you don't have to then tell everyone you had a miscarriage. However, the first 12 weeks of a foetus's development are the most crucial. The brain, heart, lungs etc all are created within this time so surely this is the time every woman should be most loved, looked after and protected? Not made to go to work, hiding pregnancy symptoms, fighting tiredness and sickness and having to pretend everything is ok, to protect what exactly?

I feel more should be made of these first few precious important weeks of pregnancy, more support should be provided to women, time off work etc and a common appreciation and understanding of what is happening inside and how it should be nurtured - not made to be hidden away like some dirty shameful secret.

It all happens at once! 8th November 2011

Sunday night, straight after Downton Abbey had finished I began to start being sick. It quickly developed into being an every 20 mins vomit and diahorrea session that lasted all night until I took a metaclopramide tablet early Monday morning.

I knew it was a bug as my 2 yr old had been poorly with it the week before but it also felt very hyperemesisy too. I craved freezing cold ice things and fizzy water. I started to wonder if perhaps it wasn't all just a bug...

Martin (my husband), and I had decided to start trying for another baby in October as we thought perhaps it was best not to delay any longer. We are both getting older, me at 33, Martin 38 in a few days and we also didn't want our daughter, Gracie, to have too big an age gap between any sibling that may come along.

My first pregnancy had me hospitalised from week 5 with urine infection, kidney stone and severe Hyperemesis Gravidarum (although that wasn't diagnosed until much later on in the pregnancy) a year ago I had to have my gallbladder removed, due to side effects of HG. So as much as we both wanted to have another baby and grow our family we both understandably had reasons for putting it off.

Hyperemesis Gravidarum is the NHS's best kept secret. It affects many women, more than most realise. It is a condition in pregnancy, not something that is 'part' of pregnancy. So if I told you I had Gestational Diabetes or Pre Eclampsia you would all have heard of it, understand and sympathise. Hyperemesis Gravidarum or HG for short is a condition that is not even recognised by NICE the NHS's National Institue for Clinical Excellence that all Doctors, Midwifes and Hospitals abide by. But sadly it affects many many women and even ends up in some women terminating their babies because of it.

To complicate things further we have also decided to relocate from Cornwall to closer to London for my husbands work. So in September we put our house up for sale.
However, we thought everything was going to take time so we decided to start tying for a baby as who knows how long it would take. House selling or conceiving.

A week after I ovulated we had an offer made on our house, which we accepted. This morning I did a pregnancy test and it was positive! So I have phoned the doctor and he is writing the prescription for my pre emptive meds which I will start tonight. Following the success of my hyperemesis girlfriends, mainly Caitlin Dean (follow her blog here ) I am feeling positive.

So tonight I start taking Cyclizine and Vitamin B6. With Metaclopramide as a top up when  I need it. The theory is the sooner the meds are in your system the more impact they can have. Canada have had great success with this and so have some of the HG girls.

I hope this pregnancy is not worse than the last. I am feeling excited and positive about the chance to grow our family, I hope this joy doesn't get taken away from me too soon.

Wednesday, 9 November 2011

My Hyperemesis Story 2008 - 2009

I married my Husband, Martin, on May 10th 2008 We had been together 10 years he was 34 and I was 29. We were very keen to start a family and getting married was all part of that. Martin works in the IVF industry and is well aware that it can take normal healthy couples anything up to 2 years to naturally concieve so we thought we'd just start trying once we got married and see what happened. We got married on the Saturday and flew off on honeymoon for 2 weeks on the Sunday to the Maldives (heaven on earth!) The wednesday morning I woke up (I sleep on my tummy) and knew I was pregnant. Don't ask me how I knew - I just knew - I had never had a baby before, never been pregnant before, but I just felt so totally different. I told Martin, and I was utterly convinced. So much so that I refused to drink, no sundowner cocktails, I just didnt want it and I just knew I was pregnant. We came home from Honeymoon, I did a test, it was negative. I just declared it was wrong. By this time Martin is thinking I am totally bonkers and panicking if I am like this after the first time of trying god help us! I carried on with my absolute certainty that I was pregnant and a few days later did another test - which was positive. So I had been right, and we were absolutely thrilled - surprised as we hadnt expected it to be so immediate, but very very pleased. 

We carried on as normal as most couples do - wanting to keep it a secret until first scan - going to work with our special secret knowledge etc. I hit week 5 of pregnancy, went to work as normal, I remember it was a tuesday, and about mid morning I started to feel really sick. My initial thoughts were oh here comes morning sickness, you'll be sick but then you will be fine - I knew NOTHING about morning sickness, just the cliche that you felt sick or were sick in the morning. I ate a biscuit hoping that would keep it at bay, half an hour later I was in the staff toilets throwing up my insides. This continued for 2 days, my GP admitted me to hospital thinking it was my kidneys or a urine infection. 

I was admitted to the hospital we have here in Cornwall. The Royal Cornwall Hospital, Treliske. (It is rated the worst hospital in the country) I was put on a mixed ward with elderly men and women as I wasn't pregnant enough to be admitted to any maternity ward. I was there for a week, prodded and poked, examined, put on a drip, kidney scanned, tested and sent home with no one knowing what was wrong, but since being on a drip the vomiting had stopped so that was that. The only positive thing I remember about that was the chap who scanned my kidney also looked at my pregnancy - it was just a cluster of cells, but they were beating and he showed me the heart beat. I will never ever forget that image and I believe that is what carried me through the rest of it.

So, I was sent home. Within less than a week I was back in, the same ward, the same cant go in a maternity unit, the same no idea what was wrong with me. 

All our friends and family and work colleagues now knew I was pregnant - so no excitement of having a scan and then sharing good news. Martin had to tell everyone I was ill in hospital, no idea why and I was pregnant. For both of us that was hard - it was the start of something that should be a joyous positive happy thing to share becoming this 'problem' and something negative and worrying.

Again, the same thing happened, put on a drip, I felt better, sent home, start vomiting again, back into hospital.

I still never received any specific treatment or help. Was just in and out of hospital on a drip. Martin did lots of internet research, we tried all sorts of things to help. I can't say any of it made any difference. The worst thing for me was the lack of care and understanding in hospital. Martin eventually made a fuss and I was transferred to a private room - but even then things didn't improve. I was losing weight rapidly, I had to have a pitch dark room, I couldnt tolerate light, sounds or any smells , I could barely lift my head, let alone speak. Nurses would come in the room, rip open the curtains and tell me to pull myself together, to get up and sit in a chair, I needed some light and air and to eat something "you are making yourself ill, think of the baby, eat something" 

By this point mentally, you are so weak physically that mentally you cannot function or fight for yourself. You can barely say your name let alone answer back those nurses. When I look back on those moments it makes me want to go and seek them out and educate them on HG and their horrendus care, now I am strong and in control.

The worst thing about all of it was being completely out of control. Out of control of the sickness, I would just uncontrollably vomit every 20 mins, and eventually you lost control of your whole life. For 9 months I was in a dark room with no sounds or smells, I couldnt eat, barely drink. I lost the chance to finish up my job properly before going on maternity leave, I lost the chance to prepare for the transition in my life from girl with no real responsibilities to becoming a wife and a mother. I lost the relationship with my husband, mother, friends. Ultimately I lost the chance to be a pregnant woman and cherish that experience and relish in the love of those around me at that 'special' time.

Half way through my pregnancy we had some friends come down to Cornwall for their holidays from Newcastle. My friend Justine is a GP. She took one look at me and prescribed me Metaclopramide 3 times a day and made me question to my doctors down here why I wasnt recieiving any treatment and she also asked for me to have steriods - I cant tell you if I had injections of that or not - I was at my worst when she was down and I don't remember a great deal. The Metaclopramide changed everything - I was still sick, but not as badly and I was able to come home. I did end up back in hospital a few times after that, but generally I spent the rest of the pregnancy in my own bed, in my own dark room, with my husband and mum looking after me. They were amazing.

I did worry if taking drugs was safe in my pregnancy, but I knew that it was either that or be really really ill again and I decided that couldnt be good for the baby either. So taking the drugs was the lesser of 2 evils.

I was very particular how things had to be, I couldnt have Martin or Mum talk to me - they could just come and sit and hold my hand. They couldnt wear perfume or deodorant and had to be really careful what shower gel they washed with, that could set me off vomiting. In rare moments I would fantasise about tuna and cucumber sandwiches (no idea why!) they would make me one, it had to be cut into squares, with brown bread and salad cream, brought to me on a small plate ( I am not normally this demanding I can assure you) as soon as it arrived in my sight I couldnt eat it, my jaw physically wouldnt open, my tongue wouldnt move, I couldnt swallow. It was a living hell. I was terrified and felt so completely and utterly alone. 

Left alone with my thoughts I just wanted to die. There has been alot in the press about people having terminations with HG. I didnt want to have a termination, I just wanted it all to end. I wanted to die. That sounds dramatic, it wasnt a wailing please let me die plea, I just quietly wanted to die, go to sleep and it all to be over. 
I had days where I didnt want to be pregnant anymore, I couldnt face it, couldnt think about it, it wasnt as calcualted as wanting a termination, I dont think I was well enough to have such logical clarity of thought such as that - I just didnt want to be pregnant. I just wanted it all to end.

The times when I did talk I think all I said was how am I going to cope - how can I be a mother?

I did worry about my baby, but that wasnt a major worry. I was having lots of scans to check her growth and every time it was all fine and her heartbeat was all fine so I can't say that was a big problem for me. Neither did I blame her. People would say to me, when she comes out you can tell her how poorly she made you. I thought that was terrible - you cant blame an unborn child and I was adamant and have been adamant that she will never be told and never be made to feel that it was her fault I was poorly. I never felt that, but I can completely understand why some people would feel that.But ultimately for me - I couldnt see the end, it was just in moment to moment. I couldnt visualise a baby at the end and being a mother, I wasn't able to think like that.

The other thing was that I when I was able I wanted to know why this was happening to me. To understand it better might have helped me cope better or accepted it better. Again, no one could help me with that. 

The day I gave birth I weighed exactly 2 stone less than I do now sat here 2 and a bit years later. I was a waif of a thing. I can remember the looks on peoples faces when they came to see me when pregnant and poorly. It was a look of horror, like they were looking at someone who was terminally ill and in their last few days. They didnt know how to be with me, what to say and would always make me feel terrible, inadequate and hopeless at being pregnant, even thought that wasnt their intention.

I have felt a failure in pregnancy and I still do now. I know it wasnt my fault, but I still feel that I failed at it. It's something I can't do. 

My beautiful daughter, Gracie Rose came into the world a healthy 7lb 5oz. So yes it had been true what the nurses and doctors had said - she had been eating me alive. The moment she was born the sickness left immediately. It was like someone had peeled a heavy green veil off my fragile weak shaking body. I ate a piece of toast, it was unbelievably brilliant. I could taste the butter, the texture, it felt good. Martin later tells me it was the coldest worst piece of toast he had eaten, but to me, amazing. Food wasnt my enemy anymore.

My health problems didnt subside with her birth unfortunately - I tore my pelvis ligaments during labour - so was on crutches for several weeks unable to walk or move for several days initially. That did not help psychologically at all. Not only had I failed at pregnancy, now I couldnt walk, pick my baby up etc. But I was determined not to let that ruin this precious time of the most beautiful baby in the world. I couldn't breast feed, Gracie just wouldnt latch on - I spent the first 6 weeks desperately trying and tearing myself in two over it. I will always regret trying it for so long, and I since find out that women who have HG can't generally breast feed anyway! The metaclopramide etc all affects it. 

The health visitor came to do the post natal depression questionairre on me. I was determined not be diagnosed with that. I gave her all the right answers, which weren't relevant anyway. I did feel fine, I had no bad feelings towards Gracie, she was the most amazing beautiful baby and through everything bad came her the most wonderous thing in the world. 

Gracie wasnt a baby that slept - she still isnt great now, so I have had very severe sleep deprivation. I suffered with excruciating back ache for over a year after giving birth. Blamed it on my body not healing from the birth. Saw numerous doctors and chiropractors. Spent last summer in agony until it was finally diagnosed I had over a dozen gallstones and my gallbladder was half the size it should be days away from ruprturing. October 2010 I had that removed and not a niggle since.

So through horrendus health care, medical support and aftercare, terrible knowledge of HG and the after affects (HG is a common cause of gallbladder failure) healthwise I have had the worst 2 1/2 years of my life. I believe none of it had to be this way and am a fierce supporter of raising awareness and helping others. I have set up a Facebook Hyperemesis UK page in conjunction with the UK charity Pregnancy Sickness Support  and went on BBC Radio 4 to talk about my experience.

It wasn't until I listened to the Radio 4 programme that I started to come to terms with what had happened to me. I listened to it alone, my husband was away (he works away alot - works from home when he is here) and I realised I was crying. I then sobbed for a good half an hour afterwards.

I have lost touch with friends, simply because they didn't and never will be able to understand what happened to me, but also because they have had such different pregnancy experiences and are worried about how I feel about them glowing in pregnancy. For the record, I am thrilled for them, but it affects the way they can talk to me about their pregnancy. They are afraid of it I guess. Hyperemesis took so much away from me, emotionally, physically and mentally.

Hyperemesis Gravidarum is a severe condition in pregnancy that affect many women. It is not a part of pregnancy, it is an illness in pregnancy. It is not something that needs to be ignored and a great deal more needs to be done about this condition, to raise awareness, support and eventually prevention of it happening. I intend to be part of that.