Living with myasthenia gravis makes me skilled at the art of anticipation

I recently heard myself saying that going on vacation was simply not an option for me. I was craving some rest, though, and saying it made me sad to realize that I wasn’t dismissing the idea because of my job or family arrangements, but because of living with myasthenia gravis (MG).

Sometimes, I have to give up on having fun just to avoid pushing myself into a flare-up, my ultimate nightmare.

I can sense a flare-up long before one actually happens. During one, I become so exhausted and my symptoms worsen so much that the only solution is to lie down for an entire week. I will do everything I can to avoid reaching that point, even if it means giving up a vacation. That’s because riding in a plane, even for an hour, is a complete disaster for my body. My arms and legs become weak, and holding my head up feels like trying to lift 100 pounds. Car rides are similar. I just can’t handle the constant vibrations, and whenever a drive lasts more than two hours, my neck brace comes out.

It usually takes me two to three days to recover after traveling. That means I can end up spending almost half of my vacation recovering.

That’s what it means to live with MG. I am constantly anticipating, constantly calculating, constantly adjusting. Because of this, I’ve developed a list of things I do in the hope of sparing myself a painful stretch or flare-up.

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1. Watch what I eat

Whenever I eat too much sugar or too many carbohydrates, I feel incredibly sleepy and more tired than usual. I also feel that it affects my inflammation levels, which I worry could contribute to a flare-up.

So I try to eat as healthily as possible without depriving myself or making food another source of sadness. I have been feeling much lighter since I started my weight loss journey, which has been incredibly helpful in reducing the pain in my joints and muscles.

2. Take small breaks

Whether it’s during the day or throughout the week, I try to set aside an hour to disconnect from work and go offline, just to recharge.

The same applies to particularly demanding work weeks. I always try to arrange my schedule so that I have one day when I do the bare minimum. Doing this doesn’t just help me anticipate exhaustion; it also gives my body time to rest and recover from the stress of the days before.

3. Don’t lie down too much

Being sedentary is a big challenge for me because my body and I love rest.

But I’ve noticed that too much inactivity can leave me feeling incredibly weak, almost as if my body is shutting down. And having already weak muscles because of MG, the last thing I want is to lose even more strength. Finding the right balance between resting and staying active is an ongoing challenge.

4. Listen to my MG, but don’t let it define everything

While I’m fully aware of my body’s needs and limitations, I try not to attribute every little thing to MG, because giving everything a meaning also means giving it space to exist.

Sometimes, symptoms are present, but I try not to let them take over my thoughts or define my entire experience. I want to leave room for the possibility that not everything I feel is necessarily MG.

I’m sure there are many other things I could name, but these are the most important ones for me at the moment. I’m equally sure that everyone living with this disease has their own way of coping with it. We all keep trying, adjusting, and finding ways to stay in the best shape we can, while hoping that one day, science will find a definitive cure.

Until then, we’re learning to live, one adjustment at a time.

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.