The frustrating reality of living with chronic fatigue

How a columnist manages this challenging SMA symptom

Kevin Schaefer avatar

by Kevin Schaefer |

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In the 1987 science fiction spoof movie “Spaceballs,” Princess Vespa (Daphne Zuniga) is betrothed to Prince Valium (Jim J. Bullock), who dozes off constantly. He has chronic drowsiness, so much so that he yawns when Vespa flees their wedding ceremony in a runaway spaceship.

When I first saw this movie in middle school (my parents weren’t thrilled), I never imagined I’d find a guy like Valium relatable. Alas, life with SMA goes hand in hand with absurdity. When I’m watching “Spaceballs” now, a goofy caricature like Valium reminds me of the fatigue I experience regularly.

For anyone outside the rare disease world, understand that fatigue is infinitely more extreme than mere tiredness. A person can usually mend tiredness with a nap and a reasonable amount of caffeine. With fatigue, I can get a full night’s sleep and still wind up exhausted the next day. It’s an overwhelming sensation that depletes my energy.

I’ve written that my fatigue increases the closer I get to my Spinraza (nusinersen) injections. I receive this treatment every four months, and my body recognizes when I need another dose.

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Fatigue’s impact on my daily life

Lately, I’ve been experiencing more fatigue than usual. It’s springtime here in North Carolina, and I hoped the warmer weather might help with my energy levels. Yet even driving my chair around the neighborhood on a sunny day is sometimes too much. My arm strength has been weak throughout the second half of my life, but it’s much more severe now. On some days, all I can manage is circling my driveway and sitting by the front yard. I still get fresh air, but it’s frustrating when I just want to leave my house.

Fatigue can also hit me at any time during a typical workday. I work from home for this site’s parent company, and often it’s a struggle to type on my onscreen keyboard or complete daily tasks. I enjoy working and value productivity, but my body only allows me to do so much.

On days when I physically can’t keep going, I surrender to the clutches of fatigue. It’s not like a movie or video game where you can level up and defeat the boss villain. Fatigue is a behemoth of a symptom that can beat the functionality out of a person.

My only concrete strategy for managing fatigue is to stop what I’m doing when it hits me and rest. If it’s the middle of the day, I shut down my laptop and recline in my chair. On weekends I try to relax my body and spend less time on my computer. The dilemma here is that it’s difficult these days for me to do things like use my phone or handle physical books, so I depend on my laptop for texting and reading. I’m tethered to this device even when I’m not working.

Despite my 30 years of experience living with SMA, some components of it are as challenging for veterans as they are for beginners. SMA fatigue isn’t something that will simply evaporate, and it does make me concerned about what I’ll be capable of in the future.

Still, a lot of the disabled life is about doing what we can and accepting the things outside our control. If that means yawning as much as Prince Valium on certain days and having to slow down, so be it.

Note: SMA News Today 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 SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.


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