Surprisingly, exercise with MG also requires a bit of mental resilience
Returning to physical activity after a long hiatus didn't exactly go as planned
“Breathe in. Hold the ball. Breathe out. Stroke the horse’s mane. Breathe in. Repulse the monkey.”
OK, so maybe it wasn’t exactly like that, but last week, I tried tai chi for the first time in more than 20 years. I was in high school the last time I’d done it. This time was my first foray into being more active since my myasthenia gravis diagnosis. It was an eye-opening experience.
I went in knowing I was weak from a general lack of movement over the span of 10 years. However, with my improved mobility and increased walking ability, I wanted to add something I thought would be an easy next step. The tai chi class at our local community center sounded fun.
Well, I thunk wrong.
I had my regular intravenous immunoglobulin infusion the day before and decided to try the class on a day when I usually feel strongest. I went in knowing two things: I’d be the youngest one there, and I’d likely need to make some modifications to the exercises. The other women in the class could’ve been my mother or my grandmother.
The class started with everyone seated. Now, this I can do — or so I thought. I was hopeful I’d do better than expected.
We began with arm movements — arm movements that are mostly done overhead.
My husband has to help me wash my hair in the shower because extending my arms too much overhead fatigues them. So the class is just getting warmed up and I’m already modifying the movements to keep my arms at shoulder level.
But that’s OK. Why? Because I’m there and I’m doing it. And I’m excited just to be doing something other than walking the driveway.
After all the arm movements it was time to stand. And then squat. And then sit. And then stand again.
More modifications. I stayed seated and followed along the best I could. The squatting movement and holding that position is taxing on my leg muscles. I was already using a chair to help with balance and to sit as needed because of leg weakness.
It was disheartening to think I could do the next thing only to realize that I’d have to modify the movements. If I’d allowed it, it could’ve become a downward spiral. I could’ve been demoralized, thinking I couldn’t do it. But there was something in the class I could do without modifications: the breath work. This involved gentle movement and knowing where my body was in both space and time.
A realization and then acceptance
I realized during all of this that rather than being at 25% of my previous physical abilities, I’m probably closer to 5%. But that is better than where I was years ago, when I was mostly bedbound.
After the class, as I was heading out the door, several ladies stopped me to say that it was good to see me. They hoped I’d be back for the next class. The instructor also stopped to chat. She asked if the class was too much for me and if I’d like her to teach some modified movements in the next one.
I responded that I was OK. I’d already decided to ask my husband to join me to recommend modifications to the movements. He knows my body and limitations better than I do.
While I’m not where I thought I was physically and was initially upset at the realization, I’m glad I went. I now have a new benchmark on this journey to living my best life. I met some amazing women who were very encouraging.
And most of all, I [expletive] did it.
I could’ve let “flare fear” prevent me from going. I could’ve skipped it because I didn’t sleep well the night before and was tired. I could’ve used any number of excuses to justify not challenging my status quo. But I won’t get stronger if I don’t push myself a little harder every now and then.
I went. And I struggled. And I was the worst one there.
And it was OK.
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