Humans of ME/CFS
I started off as a rather intelligent child, who could neither throw nor catch a ball, but what I could do was swim. As a baby, I would cry when I was taken out of the bath. I loved being in and playing in the water, and still do. I'm a mermaid at heart. Naturally, I got into competitive swimming and broke dozens of Cheshire County Records over the years. I think I still hold onto a couple. At the age of 14, I competed at the 2008 Olympic trials, where I made it to the final in my event. I was selected to represent Great Britain in the European Junior Championships.
At the same time as competing for England and Great Britain, I sat my GCSEs. I got As in the most important subjects, Maths and Dual Science, not that I am biased. I am biased. I love maths and science. When I got to AS Level, my studies were interrupted by horrendous migraines and constant infections. I had always fallen asleep at school, training nine times a week--three of those sessions being before school--meant I had to catch up with sleep somewhere! This, however, was different. I struggled to get myself out of bed when my alarm went off at 4:30 a.m. to get to training. I was told that it was normal, no one should be up that early anyway. My swimming coach told me I was no longer dedicated or motivated enough to train. I, being 16 and possibly naive, thought that the adult must know best. So I pushed harder, dragged myself out of bed, and when my muscles felt utterly depleted, tried even harder. This obviously didn't go down well with ye ol' immune system.
A rollercoaster ride ensued, with a steady decline in my swimming abilities, and then slowly my mental function waned. I'd never felt stupid before; I didn't know what was happening. I knew something was desperately wrong when I could not rearrange an equation one day. Getting so suddenly exhausted that I had to stop while walking down the street and continue at a crawl was fine. But when I could no longer process information like I used to, I felt like an old slow laptop that keeps crashing. You can take away my swimming career but you can't take my brain. I need that.
I'm getting better now, after a year out of education and swimming, but I still struggle to string a sentence together a lot of the time. It's such a struggle to find the words that I want to use--they come out all jumbled up. I often have to describe the word I want to use and hope someone likes playing guessing games. At my worst, I couldn't muster the energy to talk, lift a finger, or open my eyes. The back pain you get from being immobile is a ginormous pain in the butt, in the back. Yoga helps. Rest helps. Friends help.