Friday, 27 May 2016

National M.E. Awareness Month

Today is National Cellophane Day, National Grape Ice Lolly Day, and National Heat Awareness Day. But whilst you're wrapping things up in cellophane, eating ice lollies and being hyper aware of the heat, take a minute to remember that it's M.E. Awareness Month. It is designed to educate and publicise the illness, and lobby on behalf of sufferers for increased public funding for research and treatment opportunities. The #MillionsMissing campaign has proven a powerful representation of the millions of sufferers worldwide, missing from their 'normal' lives - in schools, universities, workplaces, and social lives. The London protest took place at the beginning of the week, where the millions missing were represented with pairs of shoes, missing their owners, outside the Department of Health. 

M.E. currently affects 250,000 people in the UK. I'm not going to go into all the ins and outs of the illness, because I'm not a medic, the experiences and symptoms vary from person to person, and there is actually relatively little understanding of the illness within medical fields. M.E. is characterised, most generally, by chronic fatigue: it's not just a feeling of being sleepy, of not wanting to get out of bed, but total, overwhelming exhaustion from doing the most menial of tasks, like getting up and having a shower. It varies hugely in its severity, whereby some sufferers can continue with their schooling or work, but need evenings and weekends to rest; in the most severe cases, sufferers may be bed-ridden, unable to do even the simplest tasks by themselves, and suffer painful and prolonged effects if they try to exceed their capabilities. There is no cure for M.E., and whilst sufferers may not feel the effects of the illness for their entire lives, they are only ever in remission, never cured. 

My journey with M.E. began when I was 11. A particularly nasty bout of food poisoning was the trigger, and I just couldn't seem to shake the symptoms off. I felt exhausted and sick all the time; at its worst, the only things I could stomach were gingernut biscuits and sausage rolls, and only really moved between my bed and the sofa. I was prescribed anti-nausea and antacid pills from the GP which made me feel even worse, and it was only because of my mum constantly pushing the GPs for tests and referrals, and finally paying to have it done privately, that I was able to get a diagnosis. I felt like I was being tested for everything under the sun: blood tests and ultrasound scans, terrified about what could be wrong with me. I remember sitting in a room with a paediatrician who said they were going to test for Leukaemia - suddenly, the non-diagnosis seemed better than the potential one. Thankfully, all my tests came back clear. There was absolutely no 'medical' reason why I should be feeling the way I was - so M.E. became the diagnosis. In retrospect, being diagnosed with an illness, and then being told that there's no treatment and no cure, should be really soul-destroying but, at this point, aged 11, I was so relieved that it wasn't cancer that anything seemed better. The next few months are a blur. I had a routine whereby I had to be in bed by 10 every night, even though I couldn't sleep, and I would wake up by 10. I don't really remember what I did in the day. I think I watched a lot of tv and played The Sims. Things really started to turn around when I began to regularly see a homeopath: it was a space to talk to someone completely neutral, and the things she was giving me seemed to be working. I can't explain how or why, but they just did. In the spring/summer term, I started receiving home tutoring and started going into school occasionally. By the beginning of my year 8, I was back in school full-time, feeling back to normal. 

So, after 4 years of feeling fine and healthy, you can imagine my total fear and disappointment when my symptoms began to return under the stress and pressure of A Levels. But this time I knew what it was, and I knew what I had to do. The decision to drop out of sixth form, where all your friends are, to spend the remainder of the year recovering and start again the following year felt like a big but a necessary one. I was never as ill as I had been before, managing to go into school sometimes to see my friends and going out occasionally at the weekends. It was about totally calming down, taking off the pressure and pacing myself. The real life saver however was a treatment programme called The Lightning Process, which basically tries to reset the connection between the brain and the body. It's about reminding the brain that it's not ill, and to stop telling the body that it is. I walked into that programme a recovering, but unwell girl and walked out, 3 days later, feeling like a new woman. However, when I had this treatment, it wasn't available on the NHS and it wasn't cheap - it's incredible, but it's not accessible for everyone. In the last few years I've had, what I think of as, the 'warning symptoms' - nausea, loss of appetite, tiredness I can't shake off and insomnia - but I feel like I know them now, and I know how to manage them, and I'm able to do something about it before I enter full-on, debilitating M.E. pit of despair. 

I'm aware that this illness is always lurking somewhere, and feel very lucky that it's just lurking. I stumbled across this article a couple of weeks ago, and it's the best description I've ever read of chronic illness (please give it a read!) Even today, 5 years in remission (2nd time round!), some mornings I wake up feeling like I've got one or two fewer spoons. I need more sleep than lots of people, and my immune system isn't wonderful. But, I've just completed my degree, I'm able to go out and do the things I want to do, and I don't have to be too careful. I just have to be aware - and take a step back, a 'me' day when I need it, and learn how to forget about the pressures of everyday life. I am one of the lucky ones: I'm not 'missing' any more, but there are so many that are. The developments in research into the illness seem to be so slow, and there's still very little treatment - particularly that which is available on the NHS. This month is about raising awareness for the millions that still are missing, and lobbying for more investment into research to bring these people back and give them the lives they used to have, and the lives they deserve.
 
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