Living with Chronic Fatigue Syndrome

So, when I was 14 years old I was ill with glandular fever, I apparently just didn’t recover properly. My mum thought I just didn’t want to go to school, I kept complaining about being tired.

Fast forward 6 months, maybe 15 doctor appointments, 2 hospital checkups: I was diagnosed with Chronic Fatigue Syndrome (CFS), also known as M.E (myalgic encephalomyelitis). If you haven’t heard of it ( I hadn’t), there’s some general information here

I was a fairly average 14 year old kid at the time, I played guitar and sang in an awful punk band that I loved with friends. I played football mainly, but any sport that I could, to be honest. I was told I couldn’t exercise by a doctor because of the effects that this would have on me.

I tried ignoring it and being stubborn. The heartbreaking moment of playing in my local football team’s cup final, I scored a goal, earned our team a penalty and set up another guy for a goal. I took my trophy that I’ve kept to this day, I went home and got into my bed. I didn’t get out of it for almost 3 days. I’ve barely kicked a football since.

Looking back, I kept fighting my illness. It took me maybe as long as 5 years to fully accept that I’m ill, and that I can manage to live and deal with everyday things just fine. Sometimes I just need to listen to what my body is telling me and slow down a little, or take a rest.

My parents didn’t understand, my teachers didn’t understand, later on my University lecturers didn’t understand, my friends definitely didn’t understand. I spent almost 2 years out of school, nearly 95% of that was probably spent in my bed. 5% was trying to drag myself to any sort of social event or just to hang out with friends, a lot of people said they’d visit, very few of them did.

I’d be a totally different person if I didn’t have to deal with this experience. It’s something I could talk about in a lot more depth, but trying to save boring anyone that has even read this far.

You could say I was forced to “grow up”, some people at my age (21) still haven’t gotten around to that.

I was blessed to have a family that understood to the best of their abilities, even if they didn’t really get it. I met someone that helped me so much through this time: Emily. She had CFS too, and helped me so much just by understanding my problems, it was such a relief for me to find someone that got me.

The best advice that I can give for someone that is struggling with CFS or has just been diagnosed: Listen to your body, pace yourself in everything you do and build yourself up slowly. Talk to people, family, friends, doctors, people that blog on the internet. (I wouldn’t mind answering any questions, if somebody was to approach me)

The best advice that I can give to you if you have someone in your life that has CFS. If they tell you they’re tired, you’ve never felt that tired in your life, you asshole. Don’t be patronising, they mean they’re exhausted. That has to be the worst thing! But anyway, just remember that they might not be able to walk the same pace you do, or for as long as you. They might struggle with stairs sometimes, on a bad day even now almost 8 years on: I spend a rare day in bed to rest up.

Anyway, I’m kinda worried I only touched on the negatives here. It’s not all doom and gloom at all, I can’t really fit 7 years of my life into one blog post without skipping quite a few steps! The point is, even with the illness, I made it to University and coped with it reasonably well. You can still do what you want to do, you just have to go at a different pace to the people around you. Hard at first, easy with practice.

I don’t know if I consider myself “better” now, almost 8 years on. I class myself the same as anyone else I’d bump into on the street, but I still occasionally have “bad” days, as my Mum would call them. Where things just catch up with me, that used to be every day at first, now it’s every month, or every two months. It’s so rare that I feel drained or unwell that I can’t even say for sure.

Rather than let an illness define me, like I did for almost 5 years of my late teenage life. I learned that it’s just part of my life and really I’ve just gained empathy for what some people have to go through, or will go through in their lifetime. Which is far worse than a chronic, long term illness.