Humans of ME/CFS
I fell ill in 1982 after a bout of glandular fever. I was 15 years old and little did I know that the future I had planned in my mind was now irrevocably changed.
I tried so hard to conform to what my school wanted, I was accused of malingering. I was sent to a psychiatrist. I doubted myself, but my wonderful parents never did.
I eventually left school, lost most of my friends and along with it a huge chunk of my self-esteem. So now I was ill, lonely and getting depressed. Yes, depression is part of this illness but rip a 16-year-old life apart and try not to be a little sad about it.
I happily met a caring young man whose mum had long-term health issues who therefore could see the me beyond my M.E. and here we are 31 years later. He has been my rock, my salvation, my friend, my lover, my receptacle of all my anger and frustration but never, ever my detractor.
I did get better (I use that term lightly) I managed to conform to society's rules. I went to evening class to get my gcse exams. I found a job. I lived an outwardly normal life. What the rest of the world didn't see was the girl who was in bed by 8 every night, who slept much of the weekend all to enable her to do the 9-5 thing that we are supposed (!) to do. Did I have a balanced work/life? Hell no, but what else do you do in a world who doesn't believe you are sick.
I eventually went part time at work because we wanted to get pregnant and my tired body just wouldn't cooperate whilst I was working to the point of constant exhaustion.
I'm delighted to say that in 1996 I had a baby but how many mum's have to let their three week old go to stay at their own mum's house one night a week so that this tired and hurting body could sleep and recover? My reality vs yours.
My health has had ups and downs over the ensuing years but after a bout of swine flu in 2010 it's been on the decline again. I had to give up my little part time job - a whole eight hours a week - because I was just exhausted and feeling ill all the time.
Pacing is my middle name but the energy envelope with which I can juggle is getting smaller and as a consequence my concern over my future is growing. There is nothing I can do to change it, maybe one day there will be a better treatment than that that lies within our own hands. We pace, we boom and bust just so we can have moments of snatched normality. I know the price I have to pay and sometimes it's worth it.