From Clare Stephanie Cartlidge
Myalgic Encephalomyelitis is an extremely underfunded disability. And is also very misunderstood. Some don’t even know it exists. We need YOUR help to raise funds for biomedical research to hopefully one day find a cure! (details about how to donate at the bottom)
M.E can affect each individual differently, here is my M.E story….
I always had problems all the way through school, feeling ill, having lots of time off, always being tired, not having the energy to do P.E, it ending up being painful, but I never understood why. Doctors would always give me different pain meds or recommend rest but that’s as much of an answer I got until I was 21 years old! I worked from the age of 16 and work was as difficult as school and I always struggled to finish a shift, I often asked a manager if I could go home early. I’m surprised I never got fired. Every day slowly got worse and worse, I’d have to sleep more often, I would walk to work and by the time I got their I’d be in pain and want to sleep again. Eventually I had to stop working, which was the hardest decision I ever had to make, but I was waking up every day in pain, only to walk a mile to work, work for 6 hours and walk a mile back again, my shifts were put right down so I was only working 2, 4 hour shifts a week but it was still too much. It was destroying me slowly. Even after leaving work I continued to deteriorate (I think this is due to forcing myself to work for so long)
Life for me now is pretty dull, I have to sleep often, but I can never fall asleep, when I do, I wake up in pain. Every day for me is the same, wake up, eat, feed the cats, maybe tidy a little bit, eat again, and sleep. Maybe nap in between it all. Even doing that much on a good day tires me out. I cannot walk far. If I go out I need to use a wheelchair else I would end up collapsing from pain and exhaustion. For short distances I can use my stick, but even that causes me pain from putting my weight on it. I have gone through major bouts of depression which has resulted in me taking a very high dose of anti depressants. I also take high doses of co-codamol, and ibuprofen for the pain. But they only work to a certain extent, nothing stops the back pain, the heavy feeling in my legs, like I’ve got a led weight on them. Occasionally I will get numbness, even paralysis in my arms or legs, this is incredibly scary thing to happen and you never get used to it.
I’m not after sympathy…all I want is understanding as their are so many others like me. Some that are worse, that are bed bound, and paralysed and cannot say this for themselves.
The picture is of me on a rare good day, when I have the energy to do my makeup and get dressed, the other picture, is how it really is, how I really feel, and how I usually look pretty much every day. YOU can help raise awareness by doing the same. Post a picture of you with makeup on or with nice clothes on, hair done. And one, no makeup, PJ’s, maybe in bed. Because this is what we face all the time. Please do this and post a link to the JustGiving page linked below)
YOU can make a difference to my life and many others like me…
Please find it in your heart to make a donation so one day non of us have to suffer from this any more. Any donation large or small is appreciated and it all makes a difference! Please click on this link to make a donation online…. http://www.justgiving.com/ClareStephanie-Cartlidge
Or text CCME90 and the amount you’d like to donate to 70070