Sitting on a cushion for hours at a time may look relaxing, but it’s certainly not a walk in the park when you have Duchenne muscular dystrophy (DMD). This is the reality of spending nearly 13 hours a day in my wheelchair. I’m going to explain why this is, in fact, a feat of endurance.
Prolonged sitting every day can wreak havoc on your skin. Pressure sores are one of the primary risks that stem from it. I’ve been fortunate not to have many complications arise from this. I do, however, often use different ointments as a preventative measure when redness is visible.
There was one occasion I can recall where this sort of issue did occur. On top of the lengthy sitting I do in the chair, I have to be on the toilet seat occasionally, too. As a result, I had a noticeable red spot develop and some blood right after getting transferred from the toilet to the chair.
Read about experimental therapies for DMD
Ultimately, I had to go to a clinic that specializes in this type of care. There, I was prescribed a type of bandage designed to care for this type of recurring sore called InterDry®. It worked quite efficiently and would probably be something I’d use again for this issue. And I made sure to get a softer toilet seat.
Being in the chair for so long starts to just not feel comfortable over the course of a day. Typically in the evening, I start to have soreness in my thighs and sometimes around the groin. The same can also be said for my back and legs.
All this sitting isn’t really the best for circulation either. This is a reason I can feel cold pretty easily. I’ve had to actually wear a scarf at times this summer. A remedy for this again is adjusting your positioning in the chair.
Another method I follow religiously to counteract discomfort is laying in bed for a couple of hours each day. This probably sounds simple, but my memory foam mattress can offer some much-needed relief. After having such long stints in the chair, this feels better than I can describe.
Certain tasks can become a struggle when you have to do them from a seated position. It’s not my favorite thing to discuss, but using the bathroom is one of them. I use a handheld urinal that someone holds up for me. It doesn’t take much for this to end in a mishap. That’s one reason I’m wary of different care providers. I always have to explain how to do it correctly to someone new.
It takes plenty of diligence to keep negative outcomes in check when being seated in my chair for significant hours. This is an example of why managing all angles of my care is a full-time job. It can become mentally taxing to have all this on my mind. It can hurt the motivation I have and my sources of enjoyment. It’s also one of those aspects of DMD that I think only someone in my shoes could understand.
The seemingly simple act of standing up and stretching after being seated for hours can be easy to take for granted. The next time you have a long work day sitting down at your office job and stand up later, I’m not asking you to feel bad. But I would like you to be mindful of those who don’t have that option.