Social media in general, and blogs/bloggers especially, are supposed to look effortless. There’s a real tendency to make each post seem like it came together easily. I think that I do this a lot with my life – not just on social media – in an effort to seem more like everyone else. My wheelchair already sets me apart enough; I don’t necessarily need to highlight my differences any more.
But in reality, my life is anything but effortless. That’s what I want to talk about this week for SMA Awareness Month – how much time and effort is involved in life with a chronic disease/disability.
I work full-time in research, so I have to get up and go to work every day like everyone else. But unlike everyone else, getting up and getting ready isn’t a simple task. It takes me between two and a half to three hours to get ready in this morning. I’m not doing anything special or elaborate – getting up, having some coffee, taking a shower, drying my hair and doing my makeup. But when you need help getting in the shower, during the shower, getting dressed, brushing your teeth, everything takes longer, and those extra minutes add up over the course of the morning. I do like to look nice, I won’t deny that – but that just means I like to wash my hair daily, put on makeup, and wear a nice outfit – nothing crazy.
|I don’t actually get up until 5:30, but this is when my weekday alarm goes off.|
This basically means that when I start my day, I’m already tired! And this is before a full day of work, maybe graduate school class, and anything fun/social I might have planned. Some of this might be my “fault” – I like to do things, and am involved in a few different organizations that have weeknight meetings.
Other than meetings or classes, I try really hard to keep weeknights free, because I know having plans at night will make me more tired, and make things harder for me, the next day. Even on a night when I have nothing planned, by the time I do get home from work, have dinner, take a little bit of time to relax, maybe write a blog post, and get ready for bed (which again, takes longer!), 10 p.m. comes incredibly quickly. I then need help getting hooked up to the feeding tube that I use overnight, and putting on the breathing machine I also use overnight. Then I get a few hours of sleep, get up, and do it all over again. By Friday of every week, I’m pretty spent.
And with SMA, being spent manifests itself not just mentally, but also physically. When I’m exhausted, it’s harder for me to do simple things like lift my arms, and hold my head up. And when I’m sleep-deprived, I’m more likely to get sick, and when I’m sick, it’s more likely to turn into a serious respiratory problem.
I’m not sharing this peek into my life so that you feel bad for me, or pity me! But I do want to help people understand the extra effort involved in my life, and I also want to ask that you have patience. If I, or someone else that you know living with a chronic disease/disability, am a few minutes late to meet you – keep in mind what I had to do just to show up! Try to understand that there are factors involved in people’s lives that you might not know about.
(This post uses affiliate links, but all opinions are my own.)