I have extremely severe M.E, my neurologist was 99% sure that I had M.S due to the severity of symptoms. I cannot walk at all and have been wheelchair bound for over three years. I need a reclining wheelchair due to my not having the trunk control to sit upright on my own. I look as severe as someone with M.S. In fact I am a lot more ill than many of my friends who have been diagnosed with M.S. I also have bladder issues, muscle spasms, numbness and tingling. I have reduced feeling and completely failed the neurological exam recently. I think that it is easy when you know people with less severe M.E to forget that there are those like me and gingerbiscuitsandacupatea. I use a hoist to get in and out of bed, I am in a hospital bed at home and spend the majority of my day sleeping. I have carers coming in to wash and dress me and even to brush my teeth.
M.E has completely robbed me of a normal life, first appearing at the age of twenty and robbing me of a career in teaching. It has steadily progressed over the last thirteen years just as M.S does. If I have to go out for an appointment in my wheelchair then I am very ill for weeks after. The only quality time I get to spend with my children is when they come into bed with me so I can read to them and talk to them. Often I stay at home with carers whilst my husband takes my children out.
My neurologists are always apologetic and say they wish they could do more, that I very clearly have a very severe neurological condition. I have seen so many specialists that it is crazy... The neuropsychologist who I asked to be referred to for CBT sent me away saying that I very clearly had a severe neurological condition that could not be aided by CBT or psychological treatment as I have no issues psychologically. Rheumatology wasn't much help either. My heart plays up a lot too, with tachycardia when I do too much.....
M.E is a terrifying condition that varies far too widely from the mildly affected to the severely affected like myself. There was talk of separating the two conditions CFS and M.E. With the milder affected being placed in the CFS group and those severely affected like myself in the M.E group. Perhaps this would help with the stigma or lack of empathy. The problem with M.E is that for most it is an invisible disease. For myself it is not invisible, in fact it is very obvious how ill I am and most people just assume that I have severe M.S. Awareness is badly needed, this condition is a robber of so much, robber of lives, robber of careers, robber of marriages and robber of childhoods in more than one way. Due to the children severely affected by this horrid condition too.