I am not one for talking publicly about things very close and personal to me, but after seeing the Daily Mail's poll today, getting people to actually take a vote on whether M.E. is a genuine illness or not, I feel so angry and moved to get so much off my chest.
To have to live your life with this highly debilitating illness, for years on end, day in day out with no actual proper treatment available is bad enough. To lose your physical ability, is bad enough. To lose your mental ability is bad enough. To lose your work life, your school life, your social life, your hobbies, everything it is that makes you happy and makes you YOU, is an unbelievably difficult thing to deal with. All this, whilst feeling very ill, is hard enough. But to have people actually doubt whether this is real or not, and have trained medical professionals even brush you off, is the biggest kick in the teeth.
When you are ill, you go to the doctor and get medicine to make you better.
That is how it's supposed to work. You are not supposed to be told "It's probably M.E." and then pushed off into this unknown world and left to research for yourself what the hell it actually is and how the hell it is going to affect your whole life.
It drives me to tears some nights just thinking about how every single day, for the last 7 years, I have had at least one symptom. I have felt ill at some point, on every day for the last 7 years. How unbelievably frightening a reality is that.
I can't even get out properly what I'm trying to write because my brain doesn't work straight anymore.
I found this video - and I'm not usually one for these sorts of videos, and I try to avoid anything M.E.ey really - because the whole M.E. thing makes my skin crawl with embarrassment
(wonderful how the world has made me feel about my own illness) - but this is good.
http://www.youtube.com/watch?v=IOflARSgNnEI lost my friend Jessie last year, a horrifically severe sufferer. Her mum is now due on trial for her murder over the next few days. Unbelievably serious shit going on. How on earth can there still be doubt in people's minds over this illnes.
Peop
le will say that I am so much better these days, and I am, it is terrific. But I still live with it every day. I still live a limited life, I still cannot run, I still cannot walk very far or do other normal stuff. But I have pushed through it all and I try to do the best I can, because M.E. has taught me how you need to live your life to the full, as much as you possibly can.
How on earth can people think M.E. sufferers are lazy people who are just trying to get out of working? I would absolutely LOVE to work, I hate the fact I am unable to, I want to earn my own way in life I want a goal in life to work for. People for some reason, do not understand this. They do not understand, that every M.E. patient I've had the privilege of meeting, is the most determined and brave and ambitious people.... who push on through this horrific pain every single day .... because we are NOT lazy....we are not going to just sit around moaning..... but try our hardest to live as best a life we physically can.
I am going on and on, I know. My brain is complete mush now and I'm sorry I can't get it across very well, but I'm so fired up and unbelievably sick of feeling ashamed and embarassed about this awful awful illness that if it were any other illness everybody would just accept.
Th
e reason it gets me so fired up, is because, I know how bad it can be. I spent a year virtually bedbound, my mother had to wash my hair for 2 years because I was too weak to do so, I had to hav every single meal brought up to me in my bed because going down the stairs was so intensely exhausting and painful, I could not stand or walk so I had to use a wheelchair. I spent my Sweet Sixteenth in bed, my eighteenth I collapsed in bed after some friends came round for an hour. I had to drop out of college.
I would be in a professional dance company by now, living my dream, if it were not for M.E.
