*My Story*
I was a happy, active and well child up until the end of 2000. I never used to be ill at all, the odd cold here and there but nothing major. The only stressful events I went through was my two close grandads dying, and changing schools, going up into secondary school. I also question after having a live vaccine in year 6, which was just before I fell ill.
I started coming home from school more tired, would go upstairs and sleep, was getting bad stomach 'aches' and lack of appetite. I can't remember coming home from school and being sleepy, my mum can remember it well. I was sent into Southampton General early 2001 with stomach pains, generally not myself, dizziness and off my food. I was in there for a week for 'routine' tests, which showed nothing, I was sent home and was told it was just a virus.
So I plodded on, but the days I was having off school became more frequent, I saw the Paediatrician as an outpatient, but was still told it was viral, and maybe IBS too. He basically said he couldn't help at all. I was then admitted again into hospital due to the same problems but alot worse, had some more blood tests, which showed nothing, and I was then diagnosed with having M.E. by the Gastroenterologist, who had a special interest in M.E.
We had never heard of it, infact didn't REALLY know what it was; it wasn't even explained to my family or me. The next few years I suffered with the same problems, fatigue where I wanted to sleep alot, didn't have much energy, nausea, extreme dizziness, stomach problems and general aches and pains. I stopped going to school altogether by the beginning of year 9, I was just too unwell to attend, nor have home tuition, so I didn't manage to get any GCSEs either.
From then onwards I suffered with extreme nausea, along with lots of other symptoms but this was my worst. We had to pay privately to get tests done, as doctors said they wouldn't find anything wrong with me, I really wanted to prove them wrong, and I did, I had a barium swallow and the doctor swore it wouldn't show I had acid reflux, well guess what, it did! And I had it very bad too. I then had a camera into my stomach and the other end into my bowel, had biopsies that showed nothing that could explain my severe nausea.
By 2004 I was around 0% and was very poorly, I had extreme exhaustion now, compared to the sleepiness I used to get, very severe nausea to the point I wasn't eating at all, extremely bad dizziness, could barley move or communicate. It had all got too much, I started getting new symptoms like palpitations and being out of breath just laid in bed, I was admitted three times to A&E until we refused to move and for me to be admitted. I had one paramedic say to me 'you look so pale, you may even have a hole in your heart', you can imagine how I felt, my heart dropped! I saw a number of doctors, we had to push to have a 24 hour ECG and heart scan, which revealed nothing, everything was normal, I just had a heart rate of 160bpm but it was regular. They basically put it all down to my M.E. and couldn't answer why I’d taken a turn for the worse.
The Gastro who diagnosed me suggested I was to be sent to Bursledon House, a rehabilitation place, as the Hospital was only for 'acute' patients, and my illness wasn't 'organic'! I was very scared, but felt so desperate for help and couldn't bare going home and being left to suffer again. So I was in Burlsedon House (of Horrors as my friend Joe used to call it!) for about two months. It was pure hell. The nurses were horrible, and bullying. None of them understood M.E. one bit. I used to cry every night my mum had to leave me, and I used to go in the toilet during the night and ring her because I felt so ill but they were so horrible, it felt like a prison!
I had got down to 6 stone (I’m 5'3"), and by this time they were worried about my weight and whether I had an eating disorder (which I can assure you I didn't). I even suggested to the Gastro could I have a feeding tube so I can put on more weight but not have the stress of trying to force feed myself, as my nausea was just so bad I was reaching and bringing up bile all the time. He felt it was time something was done, so I was NG tube fed for 2-3 months, I slowly put on some weight, although very hard, I was about 10-20% before I left Bursledon, and we discharged myself as they were mentally torturing me with some of the comments the nurses made about my weight.
One of the physios one day said to me 'when are you going to fit into those trousers young girl?', and the head nurse said to me 'look how skinny you are Rebecca!'. There were a fair few comments too made from other nurses, in which my mum and dad complained about, I then had the nurses come back and say 'I know what you've been telling your mum and dad'. It all really wasn't helping, and I felt strong enough mentally and physically to be back at home by now. It was my 16th Birthday by then in October 04. I remember still having my feeding tube, and managing to have my two best friends over and some family, and I sat downstairs, dressed, and opened all my presents. I did spend most of the day in my bedroom but I was alot better than I was by this point (nowhere near well though, obviously).
2005 was a really good year for me, I had got upto about 40-50%, I was able to go out for car rides with my friends, started going to the cinema too, obviously felt awful afterwards but I felt like I was gaining some normality back, and it felt SO good! I will never forget those feelings; it was a taster of what life should be like. I met my ex boyfriend in August 2005 too, and we had times of being able to go to the pub with my family now and then. That summer too we even went to Spain for a week in June, I had my wheelchair with me at all times, but after everything I’d been through it was amazing to be there.
2006 wasn't a particularly great year, I lost my two so called best friends, who decided to dump me for some strange reason, and I was very up and down with my M.E. varying from being bedbound again to being able to sit up in the wheelchair for a couple of hours. I still had severe exhaustion, dizziness, nausea OCCASIONALLY (hurrah!), palpitations, out of breath, pains etc. it was a pretty average year, but with alot of ups and downs - mainly downs.
By August 2006, my boyfriend and I had split up; I was also in the middle of a relapse and was slowly getting worse again. We were so desperate that I had heard of the Lightning Process, on an M.E. website, and that people who had been severely affected were now 100% better. So I went to have LP in October, sadly it didn't work for me though, and I had a sudden massive relapse. Before having LP, we had planned on having a big party at home for my 18th, a marquee and lots of food and drink, I was so excited. But obviously I relapsed and we had to cancel, but I plan on celebrating it when I’m well enough!
After being in bed, resting, trying to get a little bit better, end of November 2006 I started getting very bad chest pains, palpitations and out of breath again. My GP would come and check me out but had no idea what it was. I had several out of hour doctors; I had about 4 in less than a week come out in the middle of the night! It went on for about 3 weeks until my mum phoned and said she wanted me to be admitted because I was so poorly again. I was then on an adult ward because I was 18, it was horrible! The doctors were worried I had a PE, a blood clot on my lungs, and felt it would be best to even start treatment before they test me for it, I had Blood Gas tests twice and they came back normal, luckily.
It continued over night, saw a Doctor in the morning who was very abrupt and rude, and said 'you're getting your knickers in a twist young lady', to which I was so shocked and felt too ill to fight back, my mum and dad were so upset. He basically put it all down to anxiety. So I was sent home, although very scared as I was feeling so ill. Less than a week later I still had the same problems, but this time I was throwing up too, continuously, I felt so drained I couldn't be sick anymore, I didn't have the energy. So I was admitted again and was told I had Gastroenteritis, whether this was right or not I’m not entirely convinced, but that basically there was nothing they could do for me.
Christmas 2006 and I was stuck in bed again, this year we had the table up in my bedroom, all decorated and with a pretty candle I bought my mum to have on for Xmas day. It was so upsetting for us that it was another year in bed for me at Christmas, but my family put on a brave front and made it as special as they could. So from 2007 to where I am now. My mum and dad fought for me to be sent into the Inpatient unit at M.E. centre at Essex, it took 2 years to get funding and 6+ months to wait to get in there.
I went in beginning of April, I was so positive and felt so desperate, and felt this was going to be the place where they could help me, I had balloons with good luck everywhere and my mum had bought me a cake with 'Good Luck Bex' on it. It was a two hour drive so the most I’ve ever done since being ill, and I’ve never been away from home either. Sadly it didn't work out, they weren't very supportive, the nursing staff were awful as far as I’m concerned, there was one 'CFS' nurse to 8 beds, and even he really didn't understand I don't think.
They only worked 9-5 Mon-Fri, shame our M.E. doesn't stop after 5pm and over weekends, so you're basically left to yourself. Well I won't go into detail but we're all so gutted, I especially, that it didn't work out. My symptoms at the moment are exhaustion, pain in chest and back, palpitations, out of breath, severe dizziness and weakness. There is alot more that has gone on I could write about but you get the jist of it. At the moment we're looking into my thyroid, and hope someone can help to find out whether I could have a thyroid problem, as things just seem to be dragging on.
It's easy to lose hope, but the people who keep me going are my friends, my family; Mum, Dad, Tom (My brother) and Tara our dog, my guardian angel.
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