Fighting the urge to lie down and stay down in life with FSHD

Every day is different with facioscapulohumeral muscular dystrophy (FSHD). As I wrote in a previous column, managing the condition is a balancing act. If I do too much, I’ll pay for it later. While some days are easier than others, each one is a struggle. I often wonder if perhaps it’s time to lie down and stay down.

I think there’s a lot of misinformation out there regarding FSHD and pain. I was told by a neurologist years ago that FSHD doesn’t cause pain, it just weakens muscles. In my experience, that’s only partially true: I don’t experience much pain — unless I’m being active.

I’m not sure if the pain stems from using the muscles that have been affected by my disease or from my unaffected muscles overcompensating for the weakened ones. Regardless, the result is a double-edged sword: I can avoid pain if I’m willing to sit and do nothing, but forgoing my regular activities causes my quality of life to suffer.

When I overdo things, I’m forced to vegetate for a couple days. At some point, the muscles I’ve agitated will settle down and the pain will decrease. The temptation then is to stay down and avoid further pain.

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Most activities cause pain for me. Typing this column causes the area between my shoulders to tighten up. After half an hour, I have to stop typing to ease the ache. Getting out of bed hurts. Pulling a shirt on or off usually causes an “ouch,” which I try to keep inside my head. Even sitting still can cause pain if I’m not in the right kind of chair. Folding metal chairs and picnic benches in particular seem like they’re designed to light up the pain receptors in my brain. Standing for any length of time can be excruciating.

I’m also a musician. I feel like music is a gift I was meant to share with the world. When I play it hurts, but the feedback I get tells me I’m bringing joy and uplifting spirits. Still, there are times when I ask myself if it’s worth the pain.

I hope you see the problem. When most activities of daily living cause pain, a voice in the back of my head says, “Just get comfortable. These activities aren’t worth it. Lie down and stay down.”

Keep on rolling

I’ve related some of my personal story in a past column. I’ve been blessed with a supportive spouse, three wonderful children, and three energetic grandchildren. Every time I’m tempted to stay home instead of going to a park, concert, or other special event with my family, I remind myself that I want to leave behind lots of great memories with “Pappap.”

This point was driven home to me shortly before moving from Shanksville, Pennsylvania, to Pittsburgh. My daughter-in-law was playing a game with Julia, one of my granddaughters. At certain points in the game, Julia was asked, “What does [fill in a name] do?” When it came to Pappap, her answer was, “He sits in his chair.” I realized then that I had to push myself to be more actively involved with my family, particularly my grandchildren.

This was a major reason for our move. Now that my wife and I live closer to family, the kids are at our house much more often. And in my home environment, I’m able to do more than I can in unfamiliar surroundings. Most visits with the kids now include a music session with Pappap. I also love sitting outside listening to them have fun in our yard.

I’ve tried approaching activities both ways. I’ve stayed home when the rest of my family did something together, but this left me with the feeling that I was missing out. I’ve also participated in activities that didn’t work well for me and found myself wishing I’d stayed home. However, I find I’m happier and more content when I push myself to do things, even if I know they’ll cause some level of discomfort.

For instance, last year, I avoided amusement parks and the like. Because I have to be pushed around in a wheelchair, I thought I was creating more work for my family. Plus, despite a nice cushion and a reclining back, I still get pretty uncomfortable if I’m in the wheelchair for an extended period.

This year, I’ve gone on many more adventures. My grandson enjoys sitting on my lap for a little rest while traveling from place to place. Holding him somehow eases any discomfort I feel. I hope the memories we’re creating as we roll around together are as sweet for him as they are for me. Let’s keep rolling, Theo!

Note: Muscular Dystrophy 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 another 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 Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.