Myasthenia gravis requires us to play the long game

It wasn’t my intention to write a column about exhaustion, fatigue, and the part they play in my life with myasthenia gravis (MG). But here’s what happened.

I woke up yesterday and went about my usual routine. I ate breakfast, showered, shaved, and dressed. Then I sat at my desk — and was suddenly overcome with fatigue. I could barely hold my head up. I crawled back into bed and surrendered to blessed sleep.

I was frustrated. A column was half-written, yet I couldn’t summon the energy to finish it. But sleep felt so good.

At times like these, I start saying negative things to myself. I tell myself to just pull it together and get the job done. I remind myself that others with chronic illnesses meet their deadlines. I even ask if it’s my fault; should I have gone to bed earlier the previous night? Did I not plan properly?

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Today I sat at my desk and once again tried to work on my column. And once again, a tidal wave of fatigue hit me. I had two tasks that couldn’t wait. They had to be completed before I could return to writing. There could not be any rest until they were accomplished.

Two hours later, those tasks were done — but I had no energy left. The siren song of my bed called, and I found myself once more in blessed sleep.

What was wrong with me?

Late in the afternoon, I woke up and faced my incomplete column again. When a friend called, I vented my frustration. I demanded to know why I — someone who once worked 48 hours straight without sleep — couldn’t finish a simple 400- to 700-word column.

Luckily, she’s the kind of friend who easily ignores ridiculous demands. She’s been part of my life for so long, she predates MG. Since my diagnosis, she’s endured my frustrated outbursts and tolerated moments when I’ve had unreasonable expectations. She encouraged me to scrap the column I was struggling with and start fresh. “Write about fatigue!” she urged. “Ignore the siren call of the bed.”

Her words struck a chord. I thought back to an evening weeks ago when I hung out with friends, listening to some country music classics. One of them was Blake Shelton singing Kenny Rogers’ song “The Gambler.” Since that evening, the lyrics have been rolling around in my head:

“You got to know when to hold ’em, know when to fold ’em,
Know when to walk away and know when to run.”

This advice, spoken by a wizened old gambler to a young, inexperienced player, also serves as solid wisdom for those of us with MG. I’m trying to learn it — and live it.

That means letting go of the shame I feel when I can’t meet a deadline or reach a goal. That requires a level of self-care I haven’t yet mastered. All my life, I’ve been taught that men — especially American men — get the job done. Think of the motivational quotes we hear, such as “Don’t complain; just work harder.”

But no one tells those of us with MG what to do when fatigue takes over and working harder isn’t an option. We must figure that out for ourselves.

I trust that, eventually, life with MG will teach me how to better allocate my energy and accept its limitations. Maybe there isn’t — and shouldn’t be — any shame in walking away or folding up if it helps me win the long game. Perhaps Peter Drucker, a businessman and author, was onto something when he said, “Efficiency is doing things right; effectiveness is doing the right things.”

Sometimes, doing the right thing means walking away. That might make us more effective.

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.