I know Disability Pride Month is over, but that doesn’t mean that my disability content stops! I do always have disability posts, regardless of the month – disability is a huge part of my life, obviously, and not something that stops at the end of July. But August is also SMA Awareness Month! So this month, I’ll be sharing about disability again, but from a more specific SMA perspective.

Since it’s the first post of the month, I thought that I’d do something a little more introductory. It’s hard to explain all the ways that SMA affects my day-to-day life, so I thought I’d take you through parts of a day in my life to give you a bit of a glimpse.

Mornings

Overnight, I use a breathing machine to help me get get deep breaths while I’m sleeping, and I’m hooked up to my feeding tube to give me extra nutrition. I still eat during the day, but it’s hard for me to eat enough during the day to make up for the calories that I burn just by living my normal day, so using the feeding tube overnight helps supplement what I eat with extra calories. So when I wake up, the first thing I have to do is to get unhooked from both of these. With the feeding tube, you also have to flush it with some water, or else it can clog, which you definitely don’t want. I also have to use the bathroom immediately, because I’ve had liquid pumped into my body all night long!

Once that’s done, I get lifted and positioned into my wheelchair, and take about 30 minutes to drink some coffee (mixed with a medication I take daily!) and water, then head to the bathroom again – the liquids from overnight really do run through me! You’ll see as I go throughout the day that using the bathroom this often is a morning-only activity for me. I then either shower or wash my face, depending if it’s a shower day for me or not. Showering is a bit of an ordeal, and can be tiring and time-consuming. When I shower, I have to get lifted out of my chair into the shower chair, have someone wash my body, face, and hair – I can’t do any of it independently – get dried off, and get lifted back into my chair, and then tape a piece of gauze around my feeding tube to prevent it from leaking. This whole showering process takes about 45 minutes total or so. On a day where I shower, I start to wake up around 6 AM, and it’s about 9:15 by the end of all of this, which is when my personal care attendant leaves.

After that, I have to have help with my skincare and my makeup, getting dressed, and combing my hair out post-shower. All of this take about another 30 or 45 minutes or so, and then I usually let my hair air dry for a bit while I eat something. Since I’m on the feeding tube all night, I don’t wake up hungry, so my first meal of the day is typically on the smaller side. Once my hair is air dried a bit, I blow dry it – I rough dry it on my own, and then my mom helps style it with the round brush of my Shark FlexStyle. Through all of this time, I’m also checking and replying to e-mails and working so that my day doesn’t get off to too late of a start. It’s super helpful for me to be able to work from home and take breaks in between steps so that I can give my body a bit of a break.

The rest of my morning is just work! It’s all a lot, though, just to get to that point, and honestly, on most days I’m pretty tired by the time my day is starting…. so there’s also lots of coffee in between, too.

Afternoon

My afternoons are usually less eventful. Sometime in the early afternoon – between 12:30 and 1:30 or so – I use the bathroom again. I have to plan it around my parents’ work schedules, since I need their help, so the exact time depends on what everyone has going on. After that, I start to eat my lunch and get back to work. I am a sloooow eater, so usually I will take at least an hour or so to eat, but I keep working at the same time. And of course, there’s more coffee involved, too.

If the weather’s nice, I might take my laptop outside to the patio to work for a bit. I love working from home – truly, it’s SO much more accessible for me – but sometimes you just want a change of scenery. It’s too much work for me to just take my laptop to a cafe for a few hours – I’d need to get someone to drive me there and back, someone to help set me up there and get situated, and then I’d be stuck until someone came back to get me. So being able to work from the patio is a really nice compromise. Getting fresh air for an hour or two goes a really long way. I have a breathing machine (different from the one I use overnight) that I use a few times throughout the afternoon with my mom’s help. It basically just pushes air in and then pulls it out, helping me get a few nice, deep breaths. It only takes about a minute or two at a time, so it’s a relatively brief interruption.

Since it takes me a little bit longer to get ready in the morning, I work past 5 to make sure I’m getting everything done that I need to.After my regular job is over for the day, I get to work on my blogging job. I try to have posts partially drafted more than a day in advance, but often that doesn’t end up happening! So I spend the next few hours either writing a post, working on an image collage, brainstorming future posts, creating links for things… it varies based on what work needs to be done. During this time, I start eating a small dinner, too. I get most of my dinner nutrients through my feeding tube, but like to make sure I eat something so I’m not starving. I also have to take my SMA treatment, Evrysdi, with food to avoid nasty GI symptoms, so this is when I typically take that.

Evening

When I’m done with blogging work for the day, which is between 8 and 9 PM on a good day, I start getting ready to get into bed. In the morning when I wash my face, I’m either in the shower or I wash it at the sink, but by the evening, I’m more physically exhausted. So I use Bioderma micellar water to take off my makeup and wash my face at night instead – it’s a lot easier and more accessible. I finish the rest of my skincare routine next, which takes about 30 minutes, and then take one of my EarlyBird gummies so I can ensure a nice, deep sleep – they take an hour or two to kick in. I get help changing into my pajamas, and then get help using the bathroom and getting into bed. By this point, it’s usually anywhere between 9 and 10 PM.

Once I’m in bed, I get hooked back up to the feeding tube. It runs on a pump, so I set the rate I want it to run at, and it pumps formula into me overnight while I’m in bed and sleeping. I usually set it at a slightly higher rate for the first hour or so while I’m lounging in bed but not sleeping – it’s like my “dinner” – and then turn it down a little bit while it runs overnight. I base the rate on the math of how long I’ll be sleeping and how much formula I want to get in overnight. Setting up the pump, changing the pad/gauze I use on my skin, and hooking me up to the tubing takes about 15 minutes, so it’s not too long.

I relax in bed for a bit then, either reading or watching TV (… or scrolling ok TikTok), getting some nutrition in while I relax. When I’m ready to go to sleep, I call for help to get hooked up to the breathing machine I use overnight, which has a little mask that fits inside my nose, and to get positioned comfortably in bed. I can’t really move overnight while I’m asleep, or at least not move enough to reposition myself, so I have to be sure that I’m positioned just right before I fall asleep, or else I wake up in pain in the middle of the night. Once I’m all comfy, I check my alarms for the next morning, turn on my Headspace sleepcast, and usually fall asleep within 10 minutes, right around 11:30 or 11:45 PM. It’s a long day, and I’m usually so exhausted (both physically and mentally) by the end of the day that I’m more than ready to fall asleep!