Rainy days, Mondays, and FSHD make feeling grateful a challenge

It’s a wintery Monday morning as I write this. My wife, Wendy, left a while ago for an all-day outing with her knitting group. My daughter Jill, who lives with us, is working downtown today. It’s just as well. They say misery loves company, but I’m better off being by myself today. I’m feeling as dismal as the weather.

Yesterday was a good day, beginning with a beautiful church service. Our pastor’s sermon was thought-provoking, and the music went very well. After lunch, my son, Ryan, texted that he and his family were dropping by for a visit. We enjoyed some quality time with Ryan, our daughter-in-law, Danielle, and their children, Julia, 5, and Theo, 3. We had to cut their visit a bit short, though, as we had tickets to see “Hell’s Kitchen,” the musical inspired by Alicia Keys’ life and music, that evening.

Pittsburgh’s weather forecasters had called for a wintry mix that would turn to snow overnight. The weather began changing in the early evening. When Wendy and I exited the parking garage to walk (or in my case, ride) three blocks to the theater, we were greeted by a downpour. We haven’t yet figured out a way for me to use an umbrella without hitting Wendy with it or blocking her view. She needs both hands to push my wheelchair, so she can’t hold it, either. We were both totally soaked by the time we got to the theater.

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Despite feeling clammy as my clothes slowly dried, I enjoyed the show. The singing was spectacular, and Wendy said the dancing was excellent. (I am blind from a long-ago head-on collision with a drunk driver.)

By the time the show was over, my clothing was mostly dry, but I still felt cold and clammy. The rain had stopped by the time we exited the theater, but the temperature had dropped into the 30s, and it was really windy. We didn’t get wet, but it wasn’t an enjoyable stroll back to the parking garage.

Counting my blessings, even when it’s difficult

As usual, I was up early this morning to say my prayers and do my devotionals over a cup of coffee.

I was stiff and sore, but I counted my blessings as I got dressed independently and made a stop at my accessible bathroom. I made it to my computer and music room and got my hearing aids in. They’re a real blessing to me, as well. I made my coffee and got to my lift chair for the quiet start to the day I so enjoy. It was difficult to concentrate, though. I knew it was going to be one of those “if it moves, it hurts” kind of days.

I live with facioscapulohumeral muscular dystrophy (FSHD), which continues to progress. My knees and other joints that were broken during the collision with a drunk driver complain with every move I make. The wounds from spider bites I got back in August are burning, and my fingers would be happier if I stopped typing. Picking up my coffee cup is causing pain from my hand to my shoulder.

Somehow, all of this discomfort reminds me of a song recorded by the Carpenters in the 1970s called “Rainy Days and Mondays.” That seems to be my story today.

I was hoping to take advantage of having the house to myself to record some music without needing to use headphones. I’m hoping I can work the kinks out and try to do some recording this afternoon.

I’ve been on my recumbent bike, trying to loosen up my knees. When my fingers tell me to stop typing, I’ll head back to the bedroom to do some exercises and stretches to see if I can get the rest of my body moving more easily.

It might be a good morning to sit still and make some calls to a few friends. That usually lifts my spirits a bit.

I’m not sure I’ll be up to recording music today. I’ll let my body tell me whether that’s a good idea or if I should wait.

I’ll be participating in the FSHD Society’s monthly wellness group meeting over Zoom later today. If the complaint department is open during the call, I might share a little about what I’m experiencing today. If anyone can understand what I’m going through, it’s my fellow FSHDers.

I know this is the time of year when we give thanks for our blessings, but my body is making that a challenge today. Still, I know I am blessed with a supportive, loving family and a beautiful accessible home. We have a full pantry and an overflowing refrigerator. I am truly grateful.

FSHD can make it easy to overlook the blessings. Despite the challenges, let’s all try not to do that. Happy Thanksgiving, my friends.

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.