I’m still learning acceptance when MG messes with my day
I can learn to adapt and measure the smaller victories in each day
“The spirit indeed is willing, but the flesh is weak.”
Lately, I’ve felt that this Bible verse could’ve been written about me and my muscles. The last week or so has served as a reminder that fall fatigue is indeed a real phenomenon. This time of year always plays tricks on my myasthenia gravis (MG). As the seasons shift and daylight shrinks, my body seems to hold a private protest against both.
I tell myself it’s normal, and I know that if I’m patient, equilibrium will return. Still, I resent the disruption to my days. Even after five years of living with MG, I still get angry about how it affects my daily life.
A recent Sunday started with high hopes. My friend Barbara and I had planned a little outing that combined the civilized with the practical. It was simple, really: a stop at the outlet stores, followed by a victory lap at Costco. I woke up feeling good, even energized. For a few hours, I thought maybe the clouds of fatigue had lifted. Then we got on the highway.
It hit me like a ton of bricks. Not the gentle tiredness of a long day, but the sudden, uninvited wall that every MG patient recognizes. My instinct was to push through, keep quiet, and not be the weak link. But another softer, wiser voice whispered some advice: Don’t be foolish.
So I told Barbara, “I can do the outlet stores or Costco, but not both.” She was perfectly fine with that. I, on the other hand, felt an odd mixture of disappointment and guilt, as if I’d failed some invisible endurance test. It was a reminder of how life with MG involves daily and sometimes hourly negotiations, often requiring a compromise between ambition and acceptance.
That night, I shared my feelings with my sister. “I just get angry,” I admitted. “I know I’m lucky. I have family who go above and beyond for me, and friends who understand. But sometimes I still get mad about what MG has taken.”
She listened quietly. Her silence usually indicates that something is churning in her mind. Then she said, “It’s OK to be angry. Just don’t stay there too long.”
Lighten up a bit
That helped. I’ve learned that anger is part of the package deal with chronic illness. You can’t wish it away, and pretending it isn’t there only makes it louder. As Anne Lamott once wrote, “You can safely assume you’ve created God in your own image when it turns out that God hates all the same people you do.” I suspect that includes hating MG. Maybe God is less interested in my anger than in what I do after it passes.
By the next day, I had cooled off. I even laughed about the situation. I told Barbara that if I had pushed myself, she probably would’ve had to wheel me through Costco like an overfilled shopping cart. “We would’ve saved money,” she replied, “because you would’ve been too tired to pick up much or navigate all the aisles.” If nothing else, she’s practical.
Fatigue is one of the biggest enemies of MG patients. However, I now see that, in a different way, it is the common enemy of all people. MG teaches us to slow down, to rest throughout the day, and to lighten up. If plans need to change, change them. It’s not a big deal. I now understand that the world will keep spinning without my constant supervision.
That’s been my unglamorous lesson: It’s OK to stop. Life isn’t a race to the outlet mall. Sometimes wisdom means heading straight for the rotisserie chicken and calling it a day.
Living with MG teaches humility — a mix of discipline and surrender. Every plan is written in pencil, and every outing comes with an asterisk that says, “Subject to strength and grace.” But grace shows up in funny places: in a friend’s patience, a sister’s gentle honesty, or the relief of making the smarter, smaller choice.
Many times, when I’ve felt depressed about something I can no longer do or something I no longer have, well-intentioned people have told me that when one door closes, another opens. MG has taught me that if a door has closed, you should jiggle the handle and see if it will reopen. After all, that’s what doors do: They open and close. If I can’t do both the mall and Costco, I’ll choose one, and it will still be a good day. Wisdom?
Note: Myasthenia Gravis 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 other 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 Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
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