Piss-poor planning makes for poor performance in life with MG

Who knew that military training might one day help with MG management?

Shawna Barnes avatar

by Shawna Barnes |

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The good ole Army still has a few things to teach me nearly 12 years after my medical retirement.

“Piss-poor planning makes for poor performance” was drilled into my head as a combat medic. When you fail to plan, sh*t invariably hits the fan. But even when you do plan, sometimes those plans go awry.

How does this relate to myasthenia gravis (MG)? In more ways than you might realize.

Do you …

  • find yourself looking at the weather for the week to know which days might be best for some fresh air?
  • incorporate into your schedule rest and recovery days after a social event? Or maybe rest and recovery time is built in your schedule before and after any outing?
  • eat different foods depending on the level of symptom expression you might be experiencing on any given day?

If you are nodding your head to any of these scenarios, then you are planning to ensure that your performance is optimal. Performance isn’t just about the things we see on stage or television. It also includes personal performance in our everyday lives, like managing myasthenia gravis.

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Making the most of treatments

In my experience, every myasthenic is different. From symptom expression to how we respond to treatments, we are all unique. There is a reason MG is considered a snowflake disease, after all. Knowing how we respond to our treatments, which activities are best to do and when, and acknowledging environmental factors are all part of managing this disease.

One of the things that has the biggest impact on my quality of life is how I prepare for my intravenous immunoglobulin (IVIG) infusions. I get them every three weeks. Over the last year, I have found that hydrating the day before and the morning of the infusions helps to prevent headaches. Eating a high-protein breakfast the morning of the infusions helps as well.

I take along water, snacks, and things to do for the four-hour infusion. Then, I know I’ll hit a wall and be utterly exhausted within four hours after the infusion is complete. I tend to sleep up to 12 hours afterward, and when I awake the following morning, I feel like a new person.

It’s easy to overdo it when you feel like a new person. But from experience, I know that to make the most of my treatment, it’s important to dedicate the following day to rest and recovery. My infusions are almost always on a Tuesday, so Wednesday is a recovery day, and Thursday I allow myself to start acting on how I feel.

Memorial Day

This month is different in terms of how I make the most of my treatments. Every Memorial Day since 2018, I have participated in a 5K called Miles for Mills, using my handcycle. Last winter, our barn collapsed and damaged my bike. This year, I am thankful that my IVIG infusion fell on the week before Memorial Day. I can’t ride my bike, but I still plan on participating.

I have a multitude of mobility aids, including a stand-up walker with a seat. We have a looped driveway that measures about a fifth of a mile. It takes me 15.5 loops to complete the 3.1 miles that is the equivalent of a 5K.

I could start on Wednesday and break the routine that I know works for me to make the most of treatments. But I won’t. Why? Because it could adversely affect me for the remaining three weeks. And it’s not worth it.

So starting on Thursday before Memorial Day, I will walk our driveway loop. By pacing myself, walking slow and steady, and getting in three loops every day and four on Memorial Day, I will be able to complete the 5K and participate in the Miles for Mills event.

Is my plan foolproof? Nope. Nothing is when you’re talking about myasthenia gravis. But it’s a plan that my husband and I are comfortable with. It’s just slightly pushing the boundaries I’ve set for physical activity without adverse effects.

It will help me continue to live my best life possible. It incorporates physical activity, is an event with great emotional importance to me, and provides catharsis in several ways.

Proper planning helps me get the most out of my treatments so that I can avoid poor performance and maintain the ability to live my best life.

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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