I was diagnosed with chronic fatigue in September 2016 when I just started college. Overall my concentration was low and I kept falling asleep in classes. I have no idea where this never-ending tiredness came from, no matter how much I slept. I thought it was the stress of college, as I’ve been out of education for a year. I couldn’t cope anymore.
I described all my symptoms to the doctor along with my medical history and thankfully he diagnosed me with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). The downside? No actual treatment. But I wasn’t going to let it hamper my second chance at A-levels. I found I was entitled to take exams in the morning, because I was more cognitively aware and had extra rest breaks. The teachers understood if I couldn’t make a class and often gave me notes in advance, and a TA named Liz even wrote extra notes. I can’t believe I’ve managed for years of A-levels with this condition and now I’m just waiting for my results to see whether I can go to university.
I tend to do all my blogging and writing in the morning and then if I’m able, maybe a swim in the afternoon (four times a week as I’m rebuilding muscle strength) and perhaps I read a book before bed at 8-8:30pm.
The worst thing I hate is the brain fog when I forget words or struggle to concentrate driving my wheelchair, and my memory is now shot. As I’m writing this now I can feel my eyelids growing heavy but I’m determined to finish. My strategy for my chronic fatigue is to have rest day before a big outing and a rest day after. I’m not a fan of involuntary sleep, where I find myself waking up an hour later confused because I’ve fallen asleep without knowing I’d lost an hour of my day. I also tend to ramble and giggle, which is why I think it’s best that I wrap up this blog post now.
Keep going, all you spoonies battling this never-ending fight.
Rachel Jeffrey is 19 years old (at the time of this post) and a writer. She also battles with cerebral palsy, depression, and CFS/ME.