I’ve mentioned before that in my day-to-day life, I don’t actually spend that much time thinking about my disability. Because it’s the only life I’ve ever know, it really is just second nature for me, for the most part. But sometimes, though, something happens that forces me to confront my disability and all that it entails.

Over the past week and a half, I’ve been dealing with some on and off back pain that mostly hits me when I’m trying to sleep. As a bit of background, a had spinal fusion surgery when I was in middle school for scoliosis, which is super common in people with SMA. Since it’s been 15+ years now since my surgery, and since my disease is progressive, it’s likely that my muscles in my back are a little weaker or support my spine slightly differently than they did when I was in middle school. I’ve had this issue with pain before, and this time the pain is actually less severe, but it’s still bad enough that I couldn’t get any rest at night without taking medication.
I’ve been to doctor, don’t worry, but right now it seems like the best courses of action is to wait it out while my muscle repairs itself. But not surprisingly, it’s left me kind of exhausted – underlying pain plus uninterrupted sleep will do that to you! So it’s forced me to take it easy for the past week. There’s been lots of reading, spending time outside in the sunshine and fresh air when I can, and just not pushing myself too hard. It’s forced to me to remember that sometimes, for me, being disabled does mean that I need to rest and make sure I’m prioritizing my health.
But I don’t think this is something exclusive to disability, either! Everyone needs to remember to prioritize rest, and to listen to your body when it’s telling you that it’s being pushed to it’s limits (or even beyond them). And honestly – it felt nice to rest. I didn’t think about the things that I should have been doing instead, but instead just really focused on living in the moment. If I’m being forced to rest, I might as well enjoy it, right? And I really encourage all of you to do the same!