10 year diagnosis anniversary!

It’s been ten years this month since I was diagnosed with M.E.

Something had been wrong for a while, at least two years. I had awful leg pains after doing any exercise and had to stop doing sports at school, I felt exhausted all the time and fell asleep at school and when out with friends, I would often feel faint and confused, and I was becoming increasingly depressed, anxious and ‘out of it’. I knew something was wrong but I didn’t know what it was. I felt an increasing sense of dread.

I was doing my mock GCSE’s at the time and I walked home after an exam and then collapsed. My body finally gave up. After years of investigations, at this point the doctor said it had to be M.E. as it was nothing else and I was told to pace myself. I went to school part time and joined in with social activities as much as I could. I tried to carry on living a normal life. Most of my friends were great; looking after me and making me smile but I did become isolated because I wasn’t like them and they couldn’t really understand what I was going through. I couldn’t keep up with them and there was this constant fear of overdoing it. I started having ‘attacks’ when I did too much: all the muscles in my body would go into spasm and I wouldn’t be able to breathe or communicate. This was terrifying for me and everyone around me. I became more depressed and anxious, not only because chemically M.E. causes this but because my situation was depressing and terrifying. I could spend hours lying on the floor staring at the ceiling and became anxious about everything: travelling, germs, food, social situations. I had to use wheelchairs and walking sticks which made me feel embarrassed and just caused different symptoms to flare up. I couldn’t sleep because my body was so alert it wouldn’t let me. I gradually deteriorated and my lowest point was probably winter 2010 when I weighed 6 stone and was housebound. I had to learn to walk again starting with 5 minutes a day.

On the surface of it, not much has changed since January 2008. I still have M.E. I still suffer from pains in my legs and spasm attacks if I do too much exercise and can only walk for about 20 minutes max on a good day at the moment. In fact using my muscles in any slightly strenuous way causes pain in the days afterwards. But what has changed is my mind. I am no longer afraid of M.E. and its symptoms which means I get less anxious about overdoing it or having a relapse because I know I can cope. Going through lots of pain and then not feeling afraid of it anymore makes me feel kind of invincible sometimes. I’m currently ill and will have to have surgery soon but I’m not as afraid as I would have been without having to cope with M.E. No matter what life throws at me I think that mentally I could probably cope. I still get anxious, it’s natural that my body is trying to protect me, but I can talk myself down and be rational and calm. I haven’t felt depressed for a long time; even though I’ve been struggling recently and will probably have to give up another great job because of M.E. I don’t feel depressed about how it affects my life anymore.  I have had to leave more educational courses and jobs than I can count but I still keep trying and this year will finally get my degree. Sure, I have bad days when I feel frustrated and have a cry but I don’t sabotage myself by staring at the ceiling and running through horrible scenarios in my head anymore.I process my emotions now instead of internalising them which I think is helping massively. I don’t worry about what other people think as much and am open and honest with them about my needs and feelings. I have a much better relationship with my body: I listen to it and give it what it needs. This isn’t to say that unhelpful thoughts and behaviours come up, they do, but I stop myself. Knowing that I can be in control of my mind is empowering. Ultimately, if I can be in control of my mind and help myself to be in a calm healing state more than a stressed state I could, in time, recover from M.E. maybe never completely but enough to live a full life. It is because of this that I am positive about the future, something I definitely was not 10 years ago. My diagnosis hasn’t changed but as a person I’ve grown and I like who I am. I’m mentally strong, confident and positive and I’m proud of how far I’ve come. Maybe in another 10 years time I won’t have M.E. anymore, but maybe I’ll just be an amazing person with a happy life even if it’s still here.

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