“I’ve not always had my disability, in fact, growing up I was extremely sporty. I did karate lessons, signed up for every event at sports day, ran charity runs and eventually even got into my county Badminton team! That was an amazing achievement for me as despite my love of sport, I never really had much aptitude for it – especially running – but hey, it’s the taking part that counts right?
As I got older I tried all sorts of exercise classes, gym workouts and developed a love for mountaineering. Indoor climbing is by far what I miss the most these days. I was diagnosed with a mild case of M.E. in my third year of university, and to be honest, I kind of ignored it. Boy did I live to regret that. You can’t beat M.E. you see, thanks to the main symptom of Post Exertional Malaise (PEM) – which basically means the more I exert myself, the more ill I am. So as I continued to work hard and exercise hard, ignoring the signals my body was sending me, and using painkillers and drugs to mask my body’s cries to stop, I just became increasingly ill.
I unfortunately now have a moderate case of M.E. which heavily restricts what I can do. Even small activities can trigger PEM. I have a perching stool in the kitchen for washing up, but I still have to spend a few hours resting afterwards as my entire upper-body will feel like I’ve been lifting weights. I recently purchased a coverless duvet because changing bed sheets left me feeling worse than that time I did a half marathon years ago. I even cut most of my hair off because of the exertion of washing and styling it. Theoretically I could still go climb a wall, but I would ‘crash’ afterwards, becoming extremely ill and bedridden for days or weeks. So traditional exercise is kind of off the table…
With M.E. you can only really talk about activity rather than exercise, because things like washing up may now be a major workout for you. However, M.E. varies a LOT in severity, so you’ll sometimes see individuals with the mildest cases still doing low impact workouts, but the most severe of us are permanently confined to bed. It’s kind of like putting pins & needles and paralysis on the same scale.
I still struggle with doing any kind of activity for activities sake, most of my limited energy is used up on day-to-day living activities. But I’m trying to get into the habit of doing something, even if it’s once or twice a week, sometimes not even that. I like to do 5 minute ‘yoga’, though it’s basically 90% child’s pose. Essentially I get a yoga mat out and do some stretches. I think this helps, as I spend so much time sat still, inactive, that I think my body just starts cramping up, but I can’t really say for sure. I do know that mentally it makes a difference, it makes me feel like I haven’t given up, like there’s still something I can do, it reminds me that I’m not being lazy, that I want to do more, it’s just not good for me.
If anyone else with M.E. reads this, I can’t give you much advice because of how varied our symptoms are. Just make sure to listen to your body. Don’t push it. I know society teaches us that we should push harder, that we shouldn’t take a day off unless we’re really ill, the whole ‘no pain no gain’ but sometimes that backfires. Sometimes your body just can’t take it and if you don’t listen you’ll only make things worse. Had I stopped and listened, maybe I would still be able to work part-time at least, do some of those low impact workouts, be able to make it up a single flight of stairs without stopping to rest.
So that’s my story. Listen to your body, work with it, not against it, do what you as an individual can, and forget what others can do. For most people, exercise is worthwhile and good for your health, but that doesn’t mean you have to go all out. Just getting a walk into your day is good enough for some. We’re all made differently.”