As I’m writing this, my butt is pretty freaking sore. No, I didn’t go bungee-jumping this weekend or hurt myself bull riding; nor did I go to a marathon of all the Marvel movies leading up to “Avengers: Infinity War” and suffer cramps as a result. Hey, true fandom requires sacrifice.
No, the reason my bottom hurts is that I’m having trouble with my ROHO seat cushion and there may be a leak in it. My caregiver has tried adjusting it and pumping more air into it, but no luck. I just scheduled an appointment with my wheelchair-service provider, but until then, I kind of have to deal with a literal pain in the — you know.
Oh, the little joys of living with SMA. For those of you who don’t use a wheelchair, getting your butt comfortable is harder than you might think. I love the ROHO model, but as soon as the one I’m using wears out or the air leaks out, it then becomes quite the nuisance to get it fixed or replaced.
Likewise, another comfort issue occurred just the other day, and it also involved my private parts. To stay in my chair throughout the day and not have to worry about transferring when I have to pee, I wear an external catheter. It was a little weird getting used to this at first, but over the years, it’s become second-nature, and it allows me to stay out for long periods of time. Most of the time, it works fine, but occasionally the tube for it does get loose, and before I know it, the waterworks are all over the inside of my pants.
This happened while I was at a movie with my dad on Saturday afternoon, and of course, I was also going out with a friend that night and had a limited amount of time in-between to figure out a solution. Knowing that my dad and I would both be at home for about an hour before going out again, I reviewed my options. I could either suck it up and keep going in my pants for the rest of the day (which I do not recommend), change completely with a fresh catheter (which can be pretty time-consuming) or change into shorts and pee in a urinal before going out with my friend.
Dad and I both agreed that the last was the best option, and the only thing I had to be careful about when I went out that night was not to drink too much soda. Problem solved.
Ultimately these issues are nothing more than annoyances, and they do make for funny stories. Nevertheless, there was a time in my life when little things like this would have pushed me over the edge. Thinking about where I was this time a few years ago, I was bitter and frustrated about having SMA. I desperately yearned for relief from it, and it was little things like issues with my catheter or barely being able to move my hands that aggravated me beyond measure.
Today, I have more self-control and contentment, and I no longer break down when my seat cushion won’t work or my energy is wiped. Much of this is because I have more independence, better equipment, and a goofball of a caregiver who always has my back; but a lot of it comes down to how my attitude has changed for the better.
There was a time in my life when I felt sorry for myself and focused on the little things that were keeping me down. Things like struggling to get comfortable in bed at night, difficulties transferring out of my chair, or being unable to move my hands much were always at the forefront of my mind. Today, those are still things I deal with, but they no longer bring me down.
Now, I focus on the little things that bring me joy. Whether it’s hearing from a friend I haven’t seen in a while, enjoying a favorite meal, or having a pleasant conversation with a stranger, these are the things that occupy my mind more often than not. It’s the little things that can make a world of difference.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.