Hi, I’m Lucy, aged 18.
I use to work full time. Everything was going great, until I started making tiny mistakes. For example, leaving things and forgetting where I had put them. Silly things really that just was like clumsiness! I am overweight and was going to the nurse weekly to be weighed and so I talked to her about it all. We talked about the fact that I also suffer from severe depression and am suicidal.
The nurse got a doctor and they watched me for several months. I had to go in weekly for blood tests, urine tests and then was sent from hospital to hospital for test after test. I saw a neurologist, endocrinologist and so on. The tests proved that I didn’t have MS or Cushing’s disease.
As more time went by, the worse I got. I went from being able to walk all of the time, to having to sit down constantly and then to not being able to walk much. I then relied on a wheelchair and now I’m bedbound. It sucks! I hate my life so much! If I could change it, I would!
My depression is still really bad and as there is no cure for ME, they just tell me to live with it basically. I’m in severe pain and discomfort and its rubbish! I manage about an hours sleep every night if I am lucky, so I am forever tired. I have to fight for benefits. I’m unable to work and have been signed off for a year.
I still haven’t come to terms with being ill yet and I still get very angry and upset when I can’t do something. I know about pacing but don’t do it as I get too frustrated. No matter how hard I try not to! I hope soon they can do something to help.
Broken Mind aka Lucy.