• Chrissie - My Story

    I've had M.E. half my life. Fairly typically I became ill after contracting glandular fever and ever since then things have never been the same. I was about eleven years old when I became ill and before that I had a pretty idyllic childhood. I was captain of sports teams and had won a scholarship to a really good school and loved my life.

    I can't specifically remember when I became ill I just presumed it would pass and I was desperate to get back to school. People around me definitely noticed a change. My netball coach began taking me off at half time as she could see me fading despite the fact that I was very defiant. Sometime after this I had started my new school but I was so worn out I would never make it to Friday. My glands were also still up despite glandular fever being long gone and I was dizzy almost constantly. After many trips to the GP, we went to see a consultant who said she thought I had M.E. and suggested I attend school part time. I can vividly remember laughing with my mum at her suggestion. I thought I knew better...

    This resulted in me becoming really ill and living in constant darkness for about a year. The only time I would leave the house was to go to the hospital, where they would say, "Come back in 6 months". I did have a few unpleasant experiences with psychologists after this period. My parents spent a fortune on a psychotherapist who I really liked but who ultimately couldn’t do a thing to make me better. His motto of “the less you do, the less you want to do” which of course makes sense, I could just never get him to understand that M.E. is not laziness or an apathy to life.

    When I was about 15 I became slightly better. I was not well by any means but was able to attend school part time. I was encouraged to repeat the year rather than try and sit my GCSE’s but I was confident that it was achievable and I managed to gain 5 GCSE’s with an A* in my favourite subject English literature. After this I went to college, had a huge relapse and spent another year on the sofa. When I was 19 I had improved again slightly and so went to a local college and studied an Access Course.

    I got into the University of Sussex studying English Lit with straight ‘A’ students. I was convinced I was now ‘well’ that my M.E. was behind me and I could finally live a normal life. After about 6 months at Uni I started noticing the signs. My essays were being sent back by my tutors because they made no sense; I had constant ear infections and generally felt really rubbish. It got to a point where I would be so exhausted getting ready to go out with my friends that I would leave the club we were in after about half an hour as I couldn’t stand it any longer. I continued this way for as long as possible, I generally refuse to give up or give in to my illness which I’m sure is probably to my detriment.

    Since having to leave Uni, life has been pretty rough. I was on a course of strong antibiotics which did seem to help for a time but sadly I relapsed. I am happy for my friends at Uni who are now finishing their degrees and have their final exams in a few weeks although I cannot say I don’t envy them.

    Right now 15 minutes of feeling ok or even being able to wash my own hair would be a huge triumph. I am not ashamed of my illness but I certainly refuse to embrace it as others do. I will not use a wheelchair although I know I probably should and I don’t tell people I’m ill unless they need to know.

    I have a huge admiration for other sufferers who are able to live in the moment, but this is something I currently cannot do. I have never accepted that I am ill and I do not want to be seen as an ill girl or get sympathy from others. The thing I most resent about this illness is the effect it has had on my family. My father has changed so drastically and I know he feels tremendous guilt for the way he handled my illness in the early years. My mother is the one who mainly looks after me and is very supportive but I feel as though I have robbed her of her life. I feel like a very tall toddler at times and the lack of independence is hard to accept. The fact I can no longer drive or swim or wash my own bedding. I never expected my illness to become so severe, I thought I would always ‘yo yo’, a year down a year up. Pain is now a constant part of my life, which is something I didn’t experience in the early years.

    My story looks a bit depressing! I am fed up with being ill and constantly fighting this illness, I often describe it as drowning but I hold on to the hope that things will get better. I search the internet almost every day hoping that there may be a new breakthrough looking for ways I could help myself. I am part of the UK WPI study and am really hopeful that a better quality of life and some relief from this illness is more likely to become a reality now than ever before.

    Foggy Friends has been a huge help to me. I do not write on the forums that often but I find reading others experiences really helpful. It makes me realise that there are so many people who have been living this way for such a long time and I should be grateful that my illness has only increased in severity recently and I have not been this way from the start. I will continue to fight this illness and I will not let it break me down.

    I think hope is just around the corner...