Humans of ME/CFS
ME/CFS has totally changed my life. Previously, I was fit and very active. In my teens, I was a dancer and singer before marrying and having three children in quick succession. I was used to doing regular exercise and running as well as managing three teenagers, three dogs, two cats, and my husband. I was also active in church life and was about to start a fitness class for the ladies at the church. Then I caught a virus.
I could barely move. I struggled to get back to normal. I’d always been very independent, but a relapse stopped that. Now I couldn’t do anything I used to do. Even walking, I appeared drunk. Gradually, I found that being upright was difficult. My head felt like a cannonball, so hard to hold up.
I began to find thinking difficult, concentration impossible. Anything I read meant little or nothing and was soon forgotten. Watching quiz shows on tv became impossible because by the end of a question I’d already forgotten the start of it. Yet only a few years earlier I’d taught myself navigation from a library book and safely navigated us on a holiday to the Channel Islands! My already difficult marriage had ended and my new partner eventually found my increasing mood swings and lack of energy to do anything difficult to cope with and left.
Since then I’ve lived alone, becoming more and more of a recluse, only seeing a doctor when absolutely necessary, and rarely going anywhere else. Day-to-day it’s like being on a planet with far too much gravity and little oxygen. I struggle to breathe, to move, to think. I live on the internet which is where I now have friends and contacts. I read books I know I’ve read before, but have absolutely no memory of. Which saves buying new ones. Always the silver lining.
To most people, it wouldn’t seem to be much of a life: stuck indoors, alone, and unable to even keep the place tidy or clean. It doesn’t seem much of a life to me either. But, you get used to it over time. And I’ve had time. It was August 1985 when I first became ill. I’ve had over thirty years of watching all I was and all I knew disappear. I can’t walk far. I certainly can’t dance. And singing? Even talking is exhausting. But I don’t feel sorry for myself, not often anyway. I know there are others worse than me, who are tube-fed in bed with no tolerance for light or noise.
I’ve been taking supplements for years and my brain is somewhat improved now. But energy gets less and less, every action takes days or weeks to recover from. I’m still alive, if not kicking.