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| Olympics 2012, roughly 6 months after I became ill. I remember being so mortified having to use the assisted mobility trolley, being stared at by all these people as we rode by. My Dad had to keep explaining to the people what was wrong with me so they would let me on. It was horrible. |
Over a quarter of a million people in the UK have myalgic encephalomyelitis (bare in mind I've had it for over two years and still have to check how on earth to spell it). To put it into perspective, around 309000 people have cancer in the UK. The trouble is, although prevalence is roughly the same between the two diseases, very few people know anything about ME, and it receives a fraction of the research funding that cancer does despite being equally (if not, albeit controversially, more) debilitating. Most cancers have a cure, and the five-year survival rate is rising in most cases. ME doesn't, and it doesn't look it will for quite a while, because nobody knows what causes it.
I was diagnosed officially in the summer of 2012, after the required 6-month waiting period before an official diagnosis can be made. I came down with some strange virus illness that rendered me hospital-bound for the best part of a month. I came home, and I just couldn't seem to get better.
Wind forward two years and I am here. Here being in my bedroom, where I spend 99% of my time. After missing both of my GCSE years (I went into hospital on bonfire day when I was fourteen, a month before my fifteenth birthday), I managed to get 4 GCSEs - 2 As, a B and a coveted A*. Ironically, a week or two before I got ill I had my annual review with my form tutor, where he gave me my predicted grades - 11 A*s. I had always been smart, and I always been academically able (if not a little bit lazy), so I wasn't surprised. There was absolutely not inkling in my mind that I would come out with anything less.
I started this academic year a lot better than I was the year before. Over the summer, I had gradually started feeling better following a regime of exercise and clean eating. And it was going swimmingly, until I was back in hospital for surgery to remove my gallbladder. I wasn't allowed to do any exercise for four weeks, which was hindered further when one of the incisions reopened. It's all very well saying that exercise cures ME - I guess it does, if that's all you need to do in life. But you can't live life doing half an hour of slow walking and nothing else for the entire day. I had high hopes for myself when I started my A Levels back in September. I managed to keep up three of them for about six weeks, ignoring all the obvious signs my body was giving me. I was going to school, coming straight home after my lessons were done and going to be at six o'clock every night. That isn't living; that is existing.
I flared big time around October, and we really had to reassess everything. By the time I'd got over it and everything had settled down, it was February. I dropped psychology. I got to mock week, and dropped drama (which I had to sacrifice acting for anyway, because I wasn't well enough, and was stuck on costume design for our practical module).
So it's a week before the first of my two history exams, and I'm sat here writing this.
It absolutely kills me to think how my life might have been if I hadn't have developed ME. I'd have 11 GCSEs, even if they weren't all A*s. I'd be doing four A Levels that I really loved, and a general studies and an EPQ that perhaps I wouldn't have loved so much. I'd be seeing my friends every day at lunch - they wouldn't give shocked gasps when I walked in, because it was expected that I would be there. Maybe I would have made the England U18 hockey squad like I had always dreamed of and was working my butt of towards. I wouldn't be so constantly tired that I feel like worth isn't living sometimes.
Maybe I wouldn't be crying while I wrote this, because I wouldn't be writing this at all.
I was healthy. I was academic and driven and expected only the best from myself. And now most days I'm too tired to even leave the house. I don't socialise, I fear social interaction for extended periods because of the negative repercussions I know it will have on my health, and because people cannot tell I am ill and feel as though it is their duty to comment on me and how I look. I dream of this life that I don't know whether I'll be well enough to have, because I don't know if I'll ever get better. I'm isolated, because people are uninformed about ME and the consequences it has on so many lives.
Perhaps I would prefer to have cancer, because at least everyone understands what that is.
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