My M.E. Story
As I write this, it is a warm day in the middle of June, 2006. It has been Exactly 7 years and 2 months since I was diagnosed with ME/CFS, after struggling for over a year to find out just what was wrong with me after so many years of illness.
I've never been entirely healthy. I was born premature with multiple health problems, first encountered surgery at 6 weeks and spent more or less the first 2 months of my life in various hospitals. Nevertheless, I grew into a serious, quiet but happy little girl. When I was 3 I had my first glandular fever test. My parents had taken me to the doctors because I was "tired all the time", I spent so long sleeping I would have often not eaten for many, many hours had my Mum not woken me, and it was not uncommon for me to fall asleep face-down into my dinner! The test itself is my earliest memory - my Dad was there with me and 2 nurses, in a little hospital cubicle. They couldn't get any blood out of my first vein, as it collapsed, but they got some out of the second one. I got 2 little round plasters inside each elbow and one off the nurses drew a picture of a pig on one, and a smiley face on the other. I remember being so thrilled by these plasters that I kept showing them off, even to my Mum, who had passed her driving test that day - forget that! Look at my plasters!
They never did find glandular fever, and things trundled on. When I was 5, I developed severe viral Meningitis following a bout of Rubella and missed 2 months of school. After that I didn't really have any major illnesses until I was 15, but my immune system was terrible, and the meningitis had left me with terrible migraines, something I still suffer from almost 20 years on. I was never overly sporty - I hated outdoor PE and winter games, but I was quite happy swimming in the Summer, as long as the school's outdoor pool wasn't too cold! The cold (and extreme heat) bothered me a lot. It was all put down to the fact that I was small and 'delicate'. I went through school with possibly one of the weakest immune systems in existence. Every holiday and half term I was ill with something or other, and often during the term time too. I remember frequently being off school with ear infections and sitting in my room listening to the radio and painting all day on those days.
I went to secondary school and loved it, although my immune system was still very poor. More time off ensued. I was forever getting D's in PE (and it was only that high of a grade for "effort"!), except when it came to swimming. A few times I captained the class swimming team for sports events, because in the water was where I felt my best, like I was free. I wasn't in pain when in a pool. I swam regularly, and was even able to swim distances of a mile or more within an hour when I was 14. However, walking at that time was a problem for me, especially stairs. Numerous times my legs would just give way under me and I would fall down, laughing and usually making comments about having "Mad Cow Disease" to my friends. One time I fell down a set of concrete steps, ripping my shins to shreds and making them bruised and swollen for weeks. But I carried on, hey I was just working hard and I was always fine by the next morning, so all was ok.
When I was 15 I had appendicitis very badly, and had surgery in the first week of the Summer holidays. After that I never got fully better - I kept fainting and I just generally felt weak and tired. I went back to school and continued to work for my GCSEs. It was during my mock GCSEs that I got flu and it affected my kidneys. I remember walking home from school and being halfway home and feeling like I just couldn't go on anymore. I willed myself to put one foot in front of the other and broke out in a sweat as I told myself it was just a little bit further, just a little bit further, just a bit more. I got home, collapsed on the sofa and fell straight into a feverish sleep. Needless to say, I missed the second half of my mock exams. Many of the teachers thought I had school phobia, and was faking illness to get out of going to school. They were very harsh with me. In the months leading up to my GCSEs, I stepped up my attendance to prove them wrong. This was a big mistake - most mornings I couldn't get out of bed without being reduced to tears from just how painful it was to bear my own weight. But I went into school, battled my way through most days, and tried to keep my head down. I started repeated visits to the doctors, because as well as the tiredness, I had repeated stomach aches too. At first I joked that I must have grown another appendix, but it was worrying - why wasn't I feeling any better? I was now sleeping 10 hours a night or more, and still not feeling human, when I used to survive on 6-8 hours. The doctor first prescribed antacids, as he thought my stomach aches were just exam stress. When they didn't work he put me on Temazepam, a sedative, to help me sleep. This made me worse than ever. Now I was falling asleep in lessons, and sleeping up to 14 hours just to feel ok. Obviously if I did homework, ate and watched some TV, I didn't get enough sleep. Still the teachers insisted I wasn't pulling my weight, and still I kept on, feeling worse every day. I was determined to prove to them I was not lazy, or scared. I wanted my GCSE's, I wanted to get into sixth form, I wanted to go to university and get my degree. So I carried on.
I took my GCSE's and was able to relax through the Summer, thankfully when it came to results, all my hard graft had paid off. I was vocal with my teachers and told them that my results were not those of someone who didn't care, and they backed off a little, because now I was fighting back, because I knew I was right. In the first term of sixth form it all went wrong. My boyfriend got glandular fever weeks into term, and everyone presumed that was what was wrong with me too. Repeated blood tests ensued. My GP, who by this point was getting annoyed of my almost weekly appointments, told me that she really thought I needed to be referred to a psychologist, as this was obviously all in my head. I was devastated. As a last ditch attempt at diagnosing glandular fever, she sent me for a chest x-ray to check for lung changes. Glandular fever wasn't present, but it turned out I had a rather large hiatus hernia. That is, my stomach was partially protruding through my diaphragm into my chest cavity. I needed surgery, and thanks to my Dad's company insurance, I got to have it done privately and quickly. 6 weeks later I was in hospital awaiting my operation. The night before I had spent over an hour sobbing down the phone to my boyfriend that something was going to go badly wrong - either I wasn't going to make it, or I would never be the same again. He reassured me that this wouldn't happen and like everyone else, told me to stop worrying for once in my life - a trait I have always had, and still have to this day.
Of course, I was right, and it did go wrong. When they opened me up they found that I actually had a congenital diaphragmatic hernia, where my stomach was attached to my left lung, which was folded over. My diaphragm in the previous 6 weeks, had ruptured completely, and now my entire stomach and intestines had drifted upwards, as well as my liver and kidneys. They managed to get everything back in place, but did not realise that they had cut an artery in the process. 36 hours later I was in a bad way. I was not really aware of much, and as such, can't really remember much from this time. Needless to say, I was losing a lot of blood, and was spending a lot of time when I wasn't unconscious passing out. Finally, after an ultrasound which showed nothing amiss despite my continually falling blood pressure, the surgeon decided it was time to go back in and take another look. Initially I refused. I just wanted to sleep, but my parents told me if I didn't sign the consent form then they would. Reluctantly, I managed to write half my signature on the form before passing out again.
Upon my return from surgery, hooked up to various drips, drains and a blood transfusion, the surgeon informed my parents what had happened. A small artery behind my liver had been severed and had been continually losing blood. I needed an 8 unit blood transfusion - ¾ of the body's blood capacity. Without the second surgery I would not have made it through the night, a matter of hours at most. Most people ask me now, "Did you sue?" Of course we didn't - the surgeon corrected the problem that he had caused, he held his hands up to it, he was devastated. We didn't need to do that. I was released from the hospital in mid-December 1998, but was soon back in, as I reacted badly to the painkillers I was given and my internal stitches burst.
Cue my third surgery in as many weeks. Again I was released from hospital, by this time it was 23rd December. I spent Christmas at home, very frail, but I was glad I got to see my Granddad, as it turned out to be the last time we ever saw each other, he died a month later. On 27th December I was back in hospital, because I was still reacting to painkillers and as I could keep nothing down I was dehydrated and my weight plummeted to just under 6 stone. One of the nurses, when helping me sit up one day burst into tears because she could feel my spine protruding through my skin. I was in hospital over the new year, and for a further 2 weeks. After that, I was frail, but also so worried about my school work - by this point I had missed almost 3 months of school. The day I was due to go back to school was the day my Granddad died, so I took another week off school. I also did a really stupid thing and took a call centre job, when I was still barely able to look after myself, but I kept pushing myself, as I thought I just needed to get back into the swing of things. I was glad when the job fell through a couple of months down the line.
After all this, I was expected to start feeling better, but I just didn't. I was still tired, more tired than ever. More trips to the doctors and more blood tests ensued. My GP again declared it was all in my head, and said she would be sending me to a psychologist, IF, the endocrinologist she was referring me to first didn't find anything.
I am so glad she referred me to the endocrinologist! I went in there and described everything I had been through for the past 2 years and beyond, all the symptoms and sickeness, the awful exhaustion, the pain and the utter despair I felt at no-one understanding what was wrong. After a few tests he told me authoritatively that I had CFS or ME, and I needed rest, not to keep pushing myself. The relief was incredible! Even just the act of being told there WAS something wrong, that I wasn't making this up, helped me more than I could ever have known. He advised I took a year off school, but I wasn't having that. Now that we knew the score I was sure there was a work around. Luckily I have been blessed with the most supportive parents in the world, who agreed to help me in every way possible.
I returned to my GP, triumphant. There was something after all, I wasn't creating this myself in my head. And then she pissed on my bonfire. "Don't go giving things labels like that." She said with distain when I used the term ME. It was like a slap in the face. "Have you even read the consultant's report?" My Mum asked her. It turned out she hadn't, so convinced was she that there was nothing wrong. After that I opted not to see her anymore, she had been so terrible, even though teenage girls prefer to see female doctors, I didn't care anymore and went back to my regular GP.
That was 7 years ago, and it was such a relief to know I wasn't mad, or making it all up. Funnily enough, my parents and I had all privately decided I had ME months before my diagnosis, but hadn't voiced our thoughts. I guess deep down we all knew.
