One of the questions that came up during my Elizabeth Holmes Instagram takeover was what a typical day in the life looks like for me. Keeping SMA Pride Month in mind, I thought it might be fun to share an old-school blogging “Day in the Life” post, with a little extra information about the ways that SMA affects my normal, everyday life.
Obviously, no two days are exactly the same! I only have a personal care attendant (PCA) three days a week right now, and those are the days that I shower. It’s something that can be time-consuming and tiring, so I try to avoid showering every single day. I think this is something that’s become a little more normalized during the pandemic, but I just thought I’d mention it. I’m going to kind of write a hypothetical day in the life – this isn’t one specific day, but is the standard schedule that most of my days end up following.
6:00 AM & 6:15 AM – Alarms go off, take off my vent
I am a snoozer. I know that it’s “bad” to snooze and that I should get up right when my first alarm goes off, but I love to sleep and I want every single extra minute of it that I can have. I am also decidedly NOT a morning person, so I need time to slowly adjust to the idea of getting out of my warm, cozy bed.
When I sleep, I use a ventilator (with a mask like this) to help make sure I’m getting full, deep breaths overnight. When you’re sleeping, your breathing naturally becomes more relaxed and shallow, so the vent just applies a little extra pressure to make sure my breaths stay nice and full and that I feel rested when I wake up. I take this off at my first alarm so that I can ease into the wake up process
6:15(ish) AM – 6:50 AM Flush and unhook my feeding tube, tape my feeding tube, use the bathroom, get in my wheelchair
I use a feeding tube overnight – I do eat during the day, but I just was really struggling to get enough calories in by mouth. Using the feeding tube lets me not have to stress about what and how much I eat. So first thing when I wake up, I have to flush it with some water – it can clog if I don’t, and then I’m need to replace it. My feeding tube has been having some leaking issues lately, so I have to tape it down to my stomach… this isn’t something that everyone has to do, though! Since I’m hooked up to a lot of liquid all night with the feeding tube, I have to use the bathroom immediately when I wake up, ha! I also get lifted into my chair so that I can start my day.
6:50 AM – 7:20 AM Drink my coffee and start to wake up
Coffee is, in my opinion, the most important part of my morning. While I love my Nespresso, I start my days with a regular cup of coffee – no milk, yes sugar. I’ve been ordering beans locally from Commonplace Coffee and feel like I have upped my coffee game by one thousand percent. I sip at my coffee and start to slowly wake up. I used to watch TV while I did this (and sometimes I still do), but I’ve also started reading instead, and it’s been a great way to start my day.
While I’m doing this, my PCA cleans out the different pieces of my feeding tube and cleans my retainer, too (I had braces in high school and am still committed to wearing my retainer!).
7:20 AM – 7:50 AM Bathroom again and brush my teeth
Without going into tooooo much detail here, I’ll say that SMA means that all of my muscles are weaker, so sometimes using the bathroom takes a little bit of extra time. Again, I can’t transfer myself, so I have to get lifted from my wheelchair to the toilet and then back into my chair when I’m ready. I have a toilet seat that gets rolled on top of the regular toilet so that I can be more supported – it has a cushioned set, a backrest, and armrests. I also set a tray table in front of me so that I make sure that I stay balanced.
And then I brush my teeth to get rid of my coffee breath before I head down to the shower.
7:50 AM – 8:40 AM Shower
Just like I have a chair to use on the bathroom, I have another very similar chair to use in the shower. I have a roll in shower, so the chair fits in it super easily and there’s enough spaced for it to be wheeled around too. I add an extra “spa cushion” on the seat of the chair for comfort while I sit. Again – someone has to lift me into the shower at the beginning, and then lift me out and back into my wheelchair at the end. My shower itself is pretty typical… except that I need help with basically every step of it.
8:40 AM – 8:55 AM Head back up from the shower, tape my feeding tube (again,) say hi to Lily
I have to un-tape my feeding tube when I shower (I have gauze around it to help with leakage, and that obviously can’t get wet), so it gets re-taped once I’m out of the shower. I’ve (accidentally) trained my dog, Lily, to expect a Furbo treat when she hears the elevator door open (we have an elevator in our house because it’s a super split level), so I make sure to give hear a treat or two before I move on.
8:55 AM – 10 AM Skincare, makeup, get dressed, dry my hair
I know this is a big chunk at once, but it’s all pretty straightforward. I start with my skincare routine and some basic makeup depending on the day. Sometimes I do this without help, sometimes I have my PCA help – lifting my arm can get tiring and takes me longer, so if I’m running “on time” (aka following this schedule), I have my PCA help with some of the lifting/holding of my arm.
I can’t get dressed on my own, at all, so when I say “get dressed” I mean have someone dress me. Sometimes I might wear a cute dress or top for Instagram… or I might wear a t-shirt and a blanket on my legs. Those days tend to not make it to the Internet, ha! For drying my hair, I can do some of it myself, and then have to have help reaching the roots and very back of my head. Luckily, my hair dries pretty easily – I just aim the dryer at it and I’m good to go.
10 AM – 12:30 PM Eat breakfast, work, and take my SMA medicine
I am a creature of habit, and I get in definite food ruts. Right now, it’s a pre-made crepe from Whole Foods that I fill with an egg, sauteed onion, some breakfast sausage, and cheese. It is delicious! I came up with the idea, but I can’t actually make it myself, so my mom does that for me. I eat while I work. Then, between 12 and 12:30ish, I take my Evrysdi, the SMA treatment (it has to be taken on a full stomach).
12:30 PM – 1 PM Lunchtime bathroom and bring in my Starbucks
Obviously, this time changes a little bit day to day, but sometime between noon and one is typically my afternoon bathroom time. I order Starbucks through UberEats most days (a tall, extra dry, nonfat cappuccino with five shots), so I get that brought inside from my front porch.
1 PM – 6 PM Each lunch and back to work
Not a whole lot to say about this! I usually eat lunch while I’m working, although sometimes I’ll take a break and read a little bit on my deck or patio – it just depends what my meeting schedule looks like for the day. I also often work from my deck or patio – it’s an absolute working from home perk that I love.
6 PM – 8 PM Wind down from work, do my evening skincare, change into PJs, bathroom
I like to slowly wind down from work by doing some reading or TV watching… something to delineate between work and non-work time for me. Then I’ll change in my PJs (my favorite part of the day!), do my evening skincare, and go to the bathroom again. I like to do my skincare earlier rather than later – part of it is because my arms get physically tired later and it gets harder for me, but also because the later it gets the lazier and more tired I start to feel!
8 PM – 10:30 PM Eat dinner, watch TV, work on my blog
I’m definitely a slow eater – it just takes me more time and effort to chew and swallow. I try to do a lot of blog work on the weekends to minimize the amount of work I have to do on weeknights, but inevitably, there’s something that I need to edit or wrap up. And of course I have some TV while I’m eating and working. These two and a half hours always FLY by.
10:30 PM – 11:30 PM (Final) bathroom, get in bed, get hooked up to my feeding tube and vent, get comfy and sleep
I always have to use the bathroom right before bed because I don’t go during the night. I get in bed, get hooked up to my feeding tube, and typically spend a few minutes cuddling with Lily in bed. I can’t turn or adjust my positioning in bed, so when I’m ready to actually sleep, I have to get hooked up to my vent and get positioned in a way that I can be comfortable overnight, with lots of pillows in different places. Then I hit play on my Headspace Sleepcast and it’s lights out!
You can see – my days are LONG – it’s really strange to see it all written out, honestly! And this is actually a “good” day – things can start to run late and long easily. I don’t want you to feel bad for me or anything – this all feels normal to me – BUT I do hope that this helps give you a little bit of understand of the behind-the-scenes of my life and the lives of other disabled people. There’s a lot going on that’s not apparent just on the surface!