SMA Pride Month: Knowing My Limits

August is SMA Pride / SMA Awareness Month – each week I’ll be writing a post about a different topic related to SMA.

I have been living with SMA for almost 34 years now, so I’m pretty familiar with it. I (typically, at least) know how I feel when I’m getting sick, I know what I need help with so I can shower, get ready, all that stuff, and I know to listen to my body and what it’s telling me. Sometimes, though, I try to push past and ignore the signs – I want to do one more thing, or stay up just a little bit longer, or go out one more place – and I always end up regretting it.

The first time that I can distinctly remember this happening was in high school. I took academics seriously – I was a good student and chased after those A’s, That often meant late nights doing homework or writing papers after my afternoons were filled with extracurriculars or study sessions with friends… and since I left for school around 7:15 AM each morning, that meant not a lot of sleep. That’s normal, probably, but since sleep deprivation weakens your immune system, and since a cold easily turns into pneumonia for me, it was a little more tricky. I got sick once but had an exam coming up that I did not want to miss – I didn’t want to fall behind and have more work and studying to make up, so I convinced my parents to let me go in for part of the day to take the test and then come home. All well and good in theory, but this pushing my body instead of letting it rest like it needed might have been the thing that caused the flu I apparently had to push my body into a state of shock and land me in the ER and then ICU for about a week, and also caused me to miss the freshman formal I had been looking forward to. It was scary and not fun, and definitely, in hindsight, not worth the one exam – considering that I ended up missing more school in the long run!

That was one of the most obvious times, but there were others over the years, to varying degrees of severity. You’d think I’d have learned my lesson by now, but that’s the thing with SMA – it’s an ever-changing boundary of what is too much, and sometimes you don’t want to listen to your body. I might understand the limitations that SMA places on me, but that doesn’t mean that I always like them, especially when there are things I want to do and commitments that I’ve made.

Right before I left for my vacation to Charleston (more on that later this week!), I was feeling really physically run down. There was SO MUCH I had to / wanted to do before I left – I had blog posts to get ahead on, a presentation to work on for Pitt’s Diversity Forum, work deadlines, rescheduled doctor’s appointments, and packing. I was also majorly PMSing (sorry if that’s TMI!), which always makes me extra physically and mentally exhausted. It was one of those weeks where so many things just kind of convened all at the same time, and it was a lot. I thought that I just needed to get through it – to push through to vacation on the other side of the week. But that was not the case! I was so physically worn down that my strength – and my breathing – were affected. It wasn’t tenable, even for the rest of the week – I had to re-evaluate. So I re-prioritized. I decided I could take a day off of blogging and work a day or two while I was away. I did the things that NEEDED to be done, but then didn’t push myself. I made sure I was eating well, and especially made sure that I was going to bed just a little bit earlier, to get more rest. And, as frustrating as it was, it helped.

For me, this is one of the hardest parts about SMA – having so many things that I’m passionate about and want to do, but needing to balance that with the very real limitations that SMA places on me. It’s a struggle sometimes to be realistic about how much I’m physically able to do without reaching the ends of my limits; a struggle to listen to the sometimes-subtle signs that my body gives me. I’m certainly not perfect at it by any means – it’s probably something that I’ll still be learning and re-learning for years to come. For me, it’s one of the most ever-present reminders of SMA on my daily life. I’ve come to terms with it over the years, but sometimes, like a few weeks ago, I get a little reminder.

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