Catching up with the sun: Fighting fatigue with myasthenia gravis

What do Rip van Winkle and myasthenia gravis have in common?

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by Mark Harrington |

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The short story “Rip van Winkle,” written by Washington Irving and published in 1819, ranks among the classics of American literature. It tells the tale of a man living in colonial America who fell asleep a subject of King George III and woke up a citizen in the newly created United States of America.

The story plays on the sense of dislocation experienced when van Winkle wakes from such a long snooze. While he was sleeping, his wife and many of his friends died, social norms changed, and most remarkably, he slept through the American Revolution, arguably the most important political realignment in history. That must have been some deep sleep!

In the modern world, summer has begun its exit. Here in Maine, the breeze carries a cool hint letting us know we’ll be allowed a few more strolls along the beach and a little more time in the pool, and then it will be time to lock down everything in preparation for winter’s brutal assault. The change in seasons brings what my mother called “sleeping weather.”

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When fatigue is in control

This year, myasthenia gravis (MG) has rendered me something akin to Rip van Winkle. I haven’t been overcome with his level of exhaustion, but I’ve been pretty darn tired. In August, I gave the eulogy at a memorial service. I rested for five days before that. Without the rest, I wouldn’t have been able to attend.

Throughout the summer, my fatigue was so severe I had to cancel plans to attend family gatherings. When I was able to attend, I often left early. This is life with MG.

While fatigue may be “normal,” coping with it is difficult. At times I feel like a small child kept out of sight while the grown-ups enjoy a party downstairs. Other times I feel affinity with Rip van Winkle. I know I haven’t slept through anything as momentous as the American Revolution, but is it possible that lots of little things can add up to something important?

Missing a gathering at the lake won’t be a game changer. But what if I also miss the clambake? How about the alfresco dinner at the hottest restaurant in Portland? Things begin to add up, and before I know it, I’m missing out on the personal interactions that are the threads we use to weave the fabric of our lives.

When I reflect on what fatigue and its partner, sleep, can take from me, I think back to Pink Floyd, one of the greatest rock groups ever. “Time” is a track on their classic album “Dark Side of the Moon.” The lyrics encapsulate my anxiety that MG may take away valuable moments:

“And then one day you find
Ten years have got behind you
No one told you when to run
You missed the starting gun

And you run and you run to catch up with the sun but it’s sinking
Racing around to come up behind you again
The sun is the same in a relative way, but you’re older
Shorter of breath and one day closer to death.”

Nowadays it seems hardly a day passes when I’ve not been part of a discussion about the fleeting nature of time. High school friends, cousins, and even strangers join me in amazement at how quickly 10, 20, or 30 years pass. But as my mom always said, “Each day is full of potential. Get up and get going.”

It used to irritate me when she said that. Now I open my mouth and my mother comes out.

When it all seems too much, when hours of sleep don’t seem to alleviate the fatigue, I remember Christ’s call: “Come unto me, all ye that labor and are heavy laden, and I will give you rest.” Perhaps that’s the answer.

As we live with MG, we can ask the divine’s assistance in our struggles with fatigue.

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.


Mas Sato avatar

Mas Sato

Mark makes some informative comments on the MG and it’s affect on energy levels of patients. I’m very weak at times after having MG MG for over two years and different treatments, I just returned to former treatment of 4 hour infusion of treatment of Rituxamad Medications 2 weeks ago and hope that will make a difference. I’m looking to gain any energy or positive source to stand & regain strength to get up & feel good in a someway to walk around a little around the house to feel better for a minute or two! I’m trusting this will help a little since my changing of Ultramaris to Rituxamad! Mas

Lou DeYenno avatar

Lou DeYenno

I started treatment with Ultomiris in June 2023 when my IViG seemed to fail...I'm just coming out of a 4 month flare...the Ultomiris seems to be working and my symptoms are almost non-existent...tiredness is a continuous challenge but I fight it with daily exercise (if I'm not too tired or not motivated...
I guess thats why it's called the Snowflake disease....I was diagnosed in march of 2020 but probably had it much earlier knowing what I know now...
I have a lot of prayers coming my way on a daily basis!


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