What Muscular Dystrophy feels like
A lot of people that I meet or talk to about my disability have never heard of it. Those who have heard of it often don’t really know much beyond the name. I usually just throw out some generic line about having weak muscles, but obviously, there’s a lot more to it than that.
I get that there’s a lot of curiosity when it comes to disability. While I’d never recommend going up to someone and asking them personal questions about their body/health, I can see why people want to know more.
Muscular Dystrophy varies a lot from person to person, as pretty much all disabilities do, so what I experience might be totally different from you or someone you know with the same diagnosis. I’ve never been that good at giving medical explanations or anything too scientific or specific. If you’re just curious about what my disability feels like, though, I’ve got you covered!
I think one of the easiest ways for me to describe it is that it feels heavy.
And by it, I mean everything. My body and everything I hold or move. Sometimes when I’m tired, my arms feel like massive weights hanging at my sides. If my shoes aren’t super lightweight, I can’t move my legs or feet. It can feel like the soles of my shoes are glued to my chair.
I can’t pick up anything that weighs more than about a pound, or maybe two. After about 15 or 20 minutes of eating, even lifting my fork can feel like a burden. It’s not as big of a deal as it might seem, though! I’ve learned how to find what will and won’t work for me – from silverware to books and everything in between.
Muscular Dystrophy also feels crampy and sore.
Muscle cramps are pretty common for me. They’re usually not too bad and don’t last for more than a few minutes, but every once in a while they get really obnoxious. I remember the first few nights we spent in my apartment I could barely sleep because my legs kept cramping up.
I also get cramps in my stomach and back pretty regularly. They’re more annoying than anything, to be honest. While I could definitely go without them, I’m also fine to deal with them.
In general, my pain levels are pretty low almost all of the time, luckily!
As weird as it sounds, it also feels crooked.
My back has a 30 degree curve in it, so I lean quite a bit. I also have a lot of muscle contractions, which means that my arms, legs, wrists, jaw, etc don’t straighten or have as much flexibility as they should. Where I should be able to stretch and bend, I’m stiff and locked into place in wonky positions.
It might not seem like it, but I notice my crookedness more than almost anything.
It feels slow and sneaky.
Muscular Dystrophy has been a part of my life since the day I was born. The thing with this disease is that it progresses. I can’t do as much as I could when I was 16, and that was less than I could do when I was 5.
When I was little I could do a lot more than I can now. Things like standing up if I was leaning against something or keeping my balance when I wasn’t in my wheelchair. I used to have more flexibility in my arms and legs, and it used to take a lot more for me to get tired.
It progresses, or at least it has for me, so slowly that most of the time I don’t realize that I’m getting weaker or losing the ability to do something until it’s gone.
Most of all, Muscular Dystrophy feels normal.
This life and this body are all I’ve ever known. I don’t always love all of my symptoms, but I’m really not all that bothered by my disease. It just feels normal. To be honest, the thought of being suddenly cured freaks me out more than continuing to live with it!
So, that’s how I’d describe what Muscular Dystrophy feels like. I’m happy to talk about it, because as personal as it is, I think more people need to know that having a disability isn’t always super scary or tragic. If there’s anything you’d like to know about it, feel free to send me a message here on Twitter! As always, thanks for reading my little blog!