Is It Trick or Treat? With Myasthenia Gravis, You Can’t Always Be Sure

A columnist compares living with MG to a constant string of Halloweens

by Shawna Barnes | October 31, 2022

There are days when I feel like every day is Halloween because of the way I must live my life while navigating myasthenia gravis (MG). Is it a trick or a treat? Sometimes it’s hard to tell.

Stability

Now that I’ve been on a solid treatment plan that includes regular intravenous immunoglobulin (IVIG) infusions, azathioprine (known by the brand name Azasan), pyridostigmine bromide (known as Mestinon; immediate and extended release), and prednisone, my MG is relatively stable. I’m slowly but surely able to increase my activity levels.

When I first tried to bounce back from being sick with COVID-19 in January, I was lucky if I got in 500 to 600 steps a day. I spent much of my time then either in bed or on my recliner. Now, as October ends, I’m up to 1,500 steps a day on average and will be increasing my goal amount by 100 steps a day during this week. So I’ll begin November at 1,600 steps a day, and I’ll stay at this goal until I can achieve it consistently for two weeks.

Even while weaning down on prednisone, I’m having more good days than bad.

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Work-rest cycle

I maintain a proper balance with my work-rest cycle. For me, that’s making sure I rest with my feet up for at least 20 minutes after I’ve been standing or walking for more than 10 minutes. For example, walking my 0.3-mile-long looped driveway takes me 15 minutes, assisted by my cane, walker, or rollator. After I’m done, I come inside, grab a glass of water, and sit my happy butt down in the recliner to rest for a minimum of 20 minutes.

If I’m not feeling quite strong enough for a walk, I try to help my husband with the household chores by loading the dishwasher. If it takes seven to 10 minutes to rinse dishes and load the dishwasher, I follow it by grabbing a drink and — you guessed it — sitting in my recliner with my feet up for 20 minutes. The feet up part is important for me because I have edema (swelling) in my legs and ankles.

Trick or treat?

So is the stability of my health a trick or a treat? I can do a little more around the house if I’m smart with my activities. Perhaps this is the trick, as now I feel that I have to help with chores. Even at 38, I don’t like chores. Does anyone?

Even so, I must plan my day out so that if I help with dishes in the morning, I’ll have more rest periods to ensure I have strength left over to take a shower (with my husband’s assistance) at the end of the day. When I shower, I use a chair and generally have enough strength to wash my hair and most of my body, but I need help conditioning it and washing my back. I don’t have enough arm endurance or grip strength to hold a long-handled brush to wash my back or condition my hair by the time I get through everything else.

Perhaps this is the treat because I get to enjoy these special moments with my husband. Or maybe it’s a trick because by the end, I have no gas left to apply any product to my hair, so I go to bed with a wet head and wake up with a halo of curls. It can be a scary sight — just ask the dogs.

Good days feel like tricks because they’ve always been met with days of recovery, not minutes. Learning the kind of work-rest cycle that works best for me and the status of my MG has turned these tricks into treats.

It’s a treat to be able to walk outside again for any length of time.

It’s a treat to enjoy a warm shower more than once a week.

The trick has been to live within my boundaries while pushing them ever so slightly so that those boundary lines continue to expand.

However you celebrate Oct. 31, may you have a happy and safe Halloween or a memorable Día de los Muertos (Day of the Dead).

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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About the Author

Shawna Barnes Shawna N.M. Barnes is a writer, accessible website designer, and disabled veteran living in Cable, Wisconsin, with her husband. She was diagnosed with seronegative generalized myasthenia gravis (MG) in 2018 after seven years of advocating for herself within the VA’s medical system. She hopes that through her transparency, bluntness, and no-nonsense way of writing about life with her disease that she can help others see that there is hope after an MG diagnosis. Sometimes, we just have to get out of our own way to live our best lives.

Comments

Mark Harrington

Thanks for another great column. As I read today’s I kept saying “oh yeah. That’s me!’ It’s a strange sort of affirmation ~ knowing I’m not alone with these struggles. Regards, Mark

Shawna Barnes

Thanks Mark. You are definitely not alone my friend. - Shawna

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