I have chosen a cause that is close to my heart as it affects an old university friend of mine so rather than me waffle on I will hand you over to the lovely Charlotte to explain more...
I'm not sure how I can describe my life to you in just a few paragraphs but I'll try my best. First, think back to the worst hangover you have ever had. How do you feel? Pretty bad, I'd imagine. Next, add a really nasty bout of flu. Sounds horrible doesn't it? But we're not done yet. Now imagine running a marathon in that poorly state and that, my friends, is more or less what it feels like to have severe M.E. Basically, it's as if my brain is hypersensitive to everything and so anything I do other than rest makes my head hurt, my body ache and then comes a myriad of other painful symptoms. Watching TV, reading, phone calls, noise, light, any activity, be it physical, mental, emotional or sensory makes me feel really ill. I have been ill since August 2011 with most of the past year spent lying quietly in my bedroom and I have been completely housebound now for over six months.
For myself and the 250,000 other official sufferers of M.E in the UK (although unofficial figures suggest it's more like 600,000) things are pretty tough. Not only do we have to put up with feeling really awful all the time, but we also have to deal with the stigma of the illness. People still seem to think we're just lazy, or depressed. Some accuse us of making it all up. Most think we just get a bit tired and a lie down will fix things. So far, I've been lucky not to encounter these attitudes but I know of others who get this from their doctors, their friends and even close family.
As for treatment or cure, there is none. In this country, most of the medical profession seem to think if they ignore an illness that they don't yet understand, it will all go away. As such, any funding for M.E. is spent on psychological areas like counseling and CBT instead of the biomedical research we so desperately need. Many sufferers, myself included, are told that exercise is the answer. We are told to push through the pain, ignore our bodies and keep going. Unfortunately this is the worst way to deal with M.E and inevitably leads to a relapse and worsening of the condition. Following this advice is the reason why I am now too ill to be out of bed for more than an hour at a time. I've learnt the hard way that rest and pacing is the only way to beat this illness.
So that's why I am raising money for Invest in M.E. On the 12th May I will be dressing as a princess and becoming a real life Sleeping Beauty to coincide with International M.E Awareness Day. It may not sound too taxing to you Healthies but this is so that even the poorliest of us can join in with the fundraising. The money we raise will go towards a trial for a drug that has already been found effective in 67% of participants in Norwegian research. It will also be spent on educating people about what M.E is, and how best to deal with it so that in future, others don't find themselves becoming more ill due to the wrong advice. If you wish to help by sponsoring, that would be amazing. Even more important is the fact you have taken time to read this and hopefully you have learnt a bit more about M.E. because if ever it happens to someone you know, they will need all the love, understanding and support you can give them. As for those of us who have M.E, we simply want our illness to be taken seriously. We want a cure, we want proper treatment and we all desperately want to get well. Hopefully raising money for IiME will help us do just that.If you would like to support Charlotte and all the other sleeping princesses who are also taking part you can do so via http://www.justgiving.com/mookpixie
Charlotte wearing her Runnin on Empty Tee
So please if you have some spare pennies please consider donating to this fantastic cause as it would mean the world to people like Charlotte.
