How I get ready in the morning
There’s a lot of curiosity surrounding disabled people and what our lives are like. When people learn about muscular dystrophy they sort of picture my life as being pretty unpleasant. But I think a lot of people would be surprised to see that a day in the life of someone with my disease isn’t everything you’d expect.
There’s a lot of stigma surrounding disability. I think a lot of just comes from the fact that most people just don’t know what a disabled life actually looks like. So while every disability is different, I thought it might be interesting for some people if I shared a little about mine. There’s a lot to cover, so I’m going to break it up into different posts.
And today it’s how I get ready in the morning!
At 7 am, my alarm goes off. And by alarm, I mean my mom comes in the room, because I can’t reach my phone or my clock on my desk to actually turn an alarm off from my bed.
Getting up in the morning is a fairly involved process. Not because any one step is overly complicated or difficult on its own , but because my mom has to do pretty much all of it. By the end of it, she’s exhausted.
Step one is starting the process of getting me dressed. I’m a big fan of dresses and skirts, but for work I usually wear leggings. Most pants aren’t flexible enough for me to easily put on and off, and the zipper/button combo is uncomfortable on my waist and impossible when it comes to bathrooming throughout the day. So stretchy leggings it is!
Putting pants on isn’t the most graceful process. I’ll start on my back and once my mom has slid both my legs into my pants, she then has to roll me back and forth as she slides them up little by little. I can only imagine how flattering I look every morning. I hope you’re enjoying the visual.
To get in and out of bed or my chair, we use a
Anyway, once I’m in my chair, I can finish getting dressed. My mom has to lift both my arms through the sleeves and pull the shirt over my head and down my back. Shoes can be complicated because my feet are wide and puffy, like babies feet before they learn to walk.
They’re also small, but I can’t wiggle my toes so I need a bigger size or my feet get smashed and stuck for the day. My actual size would be around a 1 in kids. Like, my 8 year old cousins have bigger feet than me. But because my feet love to be difficult, I usually have to wear a 5 in
I think getting me out of bed and dressed is probably the most difficult part. Both for me and for my mom as my caretaker. Aside from showering, which I’ll get to in a later post.
Once I’m in my chair, I have more independence since I can move around on my own. It’s one of the biggest reasons I remind people how freeing wheelchairs are. Without mine, I’d be in bed 24/7, and I can’t move at all in my bed.
The main things I need help with during the day are things like personal hygiene and food prep. I can’t shower or wash my face on my own. In my loaner chair, even just brushing my teeth is difficult on my own. My kitchen is tiny. Since I can’t lift up or straighten out my arms, using the stove would be impossible for me. So, while I can get to the fridge, I can’t do much else except look inside or grab a water bottle from the top shelf in the door.
But, I can move around freely and keep myself entertained. I try to keep as many things I might need throughout the day where I can reach. That way I can bother my mom as little as possible. My room is set up so my laptop, art supplies, and charger cords are always within reach. A few months ago I also invested in an iPad. It’s so much easier for me to carry around with me than my laptop.
It’s mostly just simple, conscious decisions of what goes where so my apartment is as accessible as possible. Could it be more accessible? Definitely. It’s an older building. If the layout was different and the rooms were a little bigger, it’d be much easier for my brother and I. But it’s been like this to some degree every place we’ve ever lived. You learn to make it work.
Anyway, back to my routine. To get ready to leave my apartment for the day, my mom will help me use the bathroom. Being disabled isn’t exactly glamorous. H
I have my mom wash my face for me and fix my hair. I usually always keep it buzzed super short because it makes it easier to maintain. Some days she’ll brush my teeth for me, too. Other days I can manage it myself if I pull into our dining room table just right so I can lean my elbows to keep me balanced. I have to lean over since I can’t lift my arms. So, I need a table just high enough that I can lean on it easily, but not too high that it becomes too difficult to rest my arms on it. If you haven’t figured it out by now, everything I do on my own is done pretty clumsily.
Other than that, I don’t do much else to get ready in the morning. I just have to make sure I eat a small snack and drink just enough tea that I don’t dehydrate but also don’t burst halfway through my shift when I can’t go to the bathroom. It’s a pretty tricky balance. If I’m being totally honest, I’m amazed that I’ve made it more than a year without a UTI.
So that’s about it. That’s what getting ready in the morning looks like with muscular dystrophy, for me anyway. This is just the first post in this series. I’m planning to talk about things like transportation, working, cooking and cleaning, my nighttime routine, and anything else you guys want to know about.
If you ever have any questions about living with MD, feel free to leave me a comment or message on any of my social media! I also created a super simple suggestion box. You can leave questions, comments, or ideas for things you’d like to see me write about.