I always have big aspirations for M.E. awareness day and week. I have so many plans of things to write but due to the very nature of my illness and disability I rarely manage it. Last year I said I would do something everyday on my social media but I think I only managed to do something for two of the seven days. This year I have made one promise to myself and that would be to publish a short blog post on May 12th, M.E. awareness day. I have many blog posts on my health but they are quite long and not quite finished, so this week I have written something from scratch. I decided to write about the day I first got ill when I was 17, a day that does still haunt my insomnia ridden nights...
I remember so vividly the day that would literally change the rest of my life. At the time I had no idea of the significance of that morning so I do not know why my brain stored the memory so well.
I woke up to a normal school day. I tried to get myself up but I couldn't. After a few minutes, I managed to sit up but I felt so weak, I only just about pulled myself out of bed and somehow made my way to the kitchen. Clinging on to the thick victorian radiator I said to my mum "My legs are so weak they hurt and I'm struggling to walk". That's when the warning bells went off, for my mum at least. She had suffered glandula fever as a young woman and knew immediately that this is what I had. It shouldn't of been that surprising that I had caught it as I hadn't been a well child and several girls in my year had recently come down with the illness.
The next few months are a bit of a blur. A painful whirlwind of exhaustion and things in my body constantly failing. The most devastating symptom for me at the time, was that after about 8 o'clock at night my leg would just be so consumed with pain I couldn't move it, and would have to be helped to bed and to and from the bathroom. Not something I expected to be dealing with in my final year of A levels.
After test from the GP I got a result of 'non-positive' glandular fever because we tested too early for it to show up in my system, but I had all the clinical symptoms. I don't remember much of the advice from the GP but I do know it was rather minimal. I was essentially told just to rest up. My mum decided that I would take time off from sixth form but continue studying at home. The teachers sent me a lot of work home and I just kept working away as best as I could. The doctor didn't warn me of any long-term complications, such as developing post-viral fatigue and then M.E. My personality is too strive, to fight, to keep going no matter what, so I just couldn't contemplate giving up everything. I gave up my main part in the school play but as encouraged to carry on with my acting outside of school so I persevered on with rehearsing for Cold Comfort Farm with my youth theatre. How I wish I had know the repercussions.
There's nothing to say if I had literally dropped everything, not tried to exercise through the pain after a few months into the glandular fever and deferred my A-levels that I wouldn't be in the same position as I am now. However, I do feel if I had just been told to just stop until I was better maybe I wouldn't of spent my twenties in bed, missing out on life, watching my body deteriorate and loosing friends (I now know who my real true friends are). Maybe that's just wishful thinking. After nine years I don't know what is the feel well anymore, I do not remember what it is for every action I do not to have a consequence. That includes the basics from getting out of bed to going out of the house. That's not to say I haven't made the most of every ounce of energy I have. I have been lucky enough to meet the most amazing two friends through having M.E. and I have even achieved a degree, but my body is still broken.
Part of the recovery process and being able to be happy is accepting that I am ill and from this I realised I can't live in the past thinking about what could've been done differently. There are no if, buts or maybes in life. How can anyone move forward with could of's, should of's, would of's. I just have to live in the now, enjoying what I can, hoping that my body slowly rebuilds itself and that the doctors who have dedicated their lives to helping M.E. sufferers are working hard to find a control or a cure to make my life better if my body cannot do it on its own.
After reading this blog post perhaps you would like to do something to support all sufferers today. It could be as simple as contacting someone you know with ME, checking out websites for more information such as M.E. Association or Action For M.E. or Association for Young People with M.E. or donating some money to charity or individual raising money for M.E. I do not have a personal fundraising page but any spare 'change' I donate to Invest in M.E.. They are a fantastic charity funding all sorts of great research to try cure this disease. I have personally just taken part in a gut bacteria research study that they are funding and you can find out more on that particular study here http://www.investinme.org/LDR%20UK%20Gut%20Microbiota.htm.
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