With FSHD, dealing with pain is a daily challenge for me
It's like a thief, relentlessly trying to steal my life
In a daily devotional I’m reading titled “Incurable Faith: 120 Devotions of Lasting Hope for Lingering Health Issues,” author Andrea Herzer describes pain as a thief, stealing her joy. Her words ring true for me as I navigate life with facioscapulohumeral muscular dystrophy (FSHD) and other health issues. Relentless discomfort is trying to steal my mobility, motivation, and joy.
When I was diagnosed in 1970, I was told that FSHD decreased muscle function but didn’t cause pain. That might’ve been true when I was a teenager and my symptoms were mild. Perhaps that will be true again when I get to the last stage of this journey, where I can’t move at all. However, it hasn’t been my experience for the past 40 years or so.
The pain just seems to get worse and worse. These days, it starts the moment I wake up and get out of bed. Any movement can cause it, including standing up, getting dressed, and even just moving food from my plate to my mouth.
I continue to use a walker around the house, but the pain starts with the first step. Within a few minutes, it’s in my lower back, hips, and legs and compels me to sit down before I fall down. I do my best to keep moving, but pain is slowly winning the battle.
I find myself reluctant even to do activities I enjoy because it simply hurts too much. Despite sticking with the exercise program recommended by my therapists, I continue to get weaker, and the pain worsens. It is relentlessly trying to destroy my life.
Learning to fight another day
I get relief only from taking over-the-counter medication and sitting perfectly still in my nicely padded lift chair. That’s what I was doing on a recent Sunday when two of my grandkids were at our house for the afternoon. I was still feeling some discomfort after playing music at church that morning, so I was content to sit in my comfy chair and listen to them while they played.
When my wife, Wendy, and my daughter, Jill, took them outside to play on our driveway, I just couldn’t do it. As much as I enjoy being with the grandkids, I thought about how much it would hurt to get downstairs and navigate the hall and laundry room to situate myself in the driveway. I surrendered and stayed in my chair.
One evening, Wendy and Jill asked if I wanted to accompany them to the neighbor’s pool. Unfortunately, there was no way for me to get in and out of the pool. I had a great swimming adventure last summer when we vacationed at the beach, but I’m done with pools unless there’s a lift to help me. They offered to guide me to a spot where I could chat with them while they enjoyed the water, and they even guaranteed some shade. I enjoy being with my family, but once again, I let the pain I knew I’d feel keep me in my chair at home.
Regular readers know I love playing music at local senior centers, nursing homes, and care units. In the past, on the morning of a performance, I’d spend time putting together a set list, text a reminder to my driver, and otherwise prepare to have fun.
These days, as I think about playing on any given afternoon, I have to talk myself out of canceling the engagement. I know the folks I’m entertaining will enjoy the music, as will I. But I also know that I’ll be hurting for the rest of the day. When I make it home after a sing-along, I have to take a pain reliever and park myself in a recliner for a couple hours, if not the rest of the day.
I know I’m not alone in this battle. Many of us who are dealing with a chronic illness are doing our best to stay positive and enjoy life, despite the circumstances. It’s a daily challenge, but let’s all do what we can to live our best lives. It’s important to try to stay as active and involved as we can. It’s also essential to give ourselves permission to surrender every once in a while and live to fight another day.
Right now, the stiffness and pain in my fingers, hands, and forearms are telling me to bring this column to an end and save more typing for later. Thanks so much for allowing me to share my FSHD journey with you.
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 Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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