Facioscapulohumeral muscular dystrophy (FSHD) and other health issues make it difficult for me to move these days. It’s hard to reposition myself when I’m sitting down.
Standing to transfer now requires a seat that’s 22 inches or higher. It’s challenging to turn my feet to move from my wheelchair to the front seat of our van. I’ve given up on getting in the back seat. I need to lean on the van door as I try to pivot to get seated. Turning is extremely difficult with shoes on.
Transferring around the house isn’t as hard. I go barefoot, as it’s much easier to slide my feet around that way.
I recently had my stair lift seats raised from 19 to 24 inches to make it easier to stand up at the end of a ride. I took this step after a few incidents where I simply couldn’t get up.
Getting food from the plate to my mouth has become a real challenge. I’ve switched my diet to foods like toast, pizza, and sandwiches that I can pick up. Recent problems with my arms have made using a fork or spoon extremely difficult.
Family members have bought me multiple travel mugs to try. I’m still searching for one that weighs almost nothing but holds 16 ounces of coffee. It’s inevitable that I’ll switch to a 12- or 8-ounce mug. I’ve thought about using a straw, but because FSHD has weakened my facial muscles over the last year, I have a hard time creating the necessary suction.
Nighttime brings my biggest challenge
None of these movement challenges is fun, but the one that bothers me most right now is repositioning in bed. Trying to get a good night’s sleep is nearly impossible, despite taking several prescription medications and supplements that are intended to reduce pain and help me sleep.
The increasing weakness and pain throughout my body make it extremely challenging to find a comfortable position. Rolling over in bed has been difficult for some time, requiring every muscle from head to toe to get the job done.
But rolling onto the side I want to sleep on is only the start of the problem. My shoulder has to be in just the right position for me to be comfortable. I didn’t realize how much I was using my neck to try to reposition my shoulder until I couldn’t do it anymore. It’s also difficult to reposition my head, as I can’t raise it off the pillow. There are times when, as I slide my head around to get comfortable, my ear gets turned backward. If you haven’t experienced this, I can tell you it’ll keep you awake.
I’m not sure how the biomechanics work, but moving my arms is much more challenging when I’m horizontal. The only way I can pick up the arm beneath me is to grasp it with my other arm and pull it up. If I stop holding up an arm, it falls immediately. It seems like this gets worse every night.
Weakening core muscles makes it tough to reposition and align my hips for a good night’s sleep. It’s also become difficult to raise one leg to place it over the other.
If I only had to go through this process once a night, it wouldn’t be so bad. Unfortunately, I wake up in pain after a couple of hours in one position. I have to reposition several times each night.
There just aren’t many muscle groups that work well for me anymore. That’s the nature of FSHD, despite its reputation as a “milder” form of muscular dystrophy.
Difficulty moving isn’t unique to those of us in the FSHD community. People with a wide range of rare diseases face this challenge. That’s one of the reasons I participate in online disability support groups and forums. There is a good chance that someone else has already gone through this adventure and can share the adaptations and lifestyle changes that have helped them overcome and move forward.
I know I’m not alone as I grow weaker and deal with increasing pain. Sadly, I’m sharing this road with many others. It’s comforting that I’m not alone, but, to quote a principal I worked with in my former life as a special education teacher, “Are we having fun yet?” That line always made me laugh. I hope it gives you a chuckle, as well. Hang in there, friends!
Note: Muscular Dystrophy News 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.
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