The comfort conundrum when living with SMA
How pleased I'd be if sitting and sleeping were less of a problem
In the family classic “Willy Wonka & the Chocolate Factory,” all four of Charlie Bucket’s bedridden grandparents share the same sleeping space. It’s a bewildering arrangement that fans have poked fun at throughout the years. Every time I watch the movie, I’m left wondering how these people share the sheets, tolerate one another’s constant presence, and manage to have some semblance of comfort when trying to reposition.
Yes, it’s an unusual observation, but SMA provides me with a rare lens. Comfort, or the lack thereof, is regularly at the forefront of my mind.
My dad noted the other day that I’ve struggled lately with getting and staying comfortable. Whether in bed or in my chair, my muscles tighten, some part of my body presses against a hard surface, and finding that sweet spot of comfort becomes too strenuous.
Troubles in the chair and the bed
Take, for instance, the steps I need to get comfortable in bed. After my caregivers put on the mask for my BiPAP machine, they turn me on my left side. From there, they put a pillow behind my back for support, place another pillow between my legs, and adjust the one for my head. Because of the contractures in my legs, it takes several attempts to stretch them enough so they don’t press against my waist.
Then, with my upper body, I have to keep my left side, particularly my arm, from feeling too much pressure. Multiple pads come into play here. Recently, I started putting a pad between the top part of my head and my pillow. That’s designed to relieve pressure on my ear and the area around it. When I’m on my side, my BiPAP machine strap pushes against that ear and irritates the skin.
If that routine sounds exhausting, it’s because it certainly is. Sleep is especially difficult for people like me. Once I finally get into a position that works, I’m stuck there until I call my parents in the middle of the night to shift me. For me, tossing and turning is a team effort.
When sitting in my wheelchair, I have more independence, but the comfort conundrum remains. I’m constantly adjusting my body’s position, my seat cushion, and my arms and legs. For people who think sitting through the extended editions of “The Lord of the Rings” films causes soreness, we SMAers roll our eyes.
Discomfort and chronic pain are among my least favorite components of living with SMA. As with everything else, those of us in this community manage and live our lives as best we can. Still, some days are harder than others and require more fortitude than I feel I have.
As I approach my 31st birthday in a few weeks, I know, as an SMA veteran, that certain challenges are permanent. Getting physically comfortable has never been easy for me, and I don’t anticipate it will become less problematic anytime soon.
Speaking of, I better recline my chair before my butt gets too sore.
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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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