Sleeping problems are another part of the SMA package

When 'good night' brings the opposite, with woe upon those seeking rest

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by Kevin Schaefer |

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The 2021 Netflix movie “Awake” imagines a world in which a mysterious catastrophe wipes out all electronics and takes away humanity’s ability to sleep. Mass hysteria ensues within hours of this apocalyptic event, as people long to let their minds and bodies rest. Citizens turn against one another, society collapses, and the main protagonist learns that her daughter may be the key to saving the world.

One doesn’t need to look at the Rotten Tomatoes score for “Awake” to know that it’s a bad movie. It’s the kind of flick you make fun of with your friends on a Friday night. A co-worker and I had a good time ripping it apart via text messages after we’d both seen it, highlighting our favorite excerpts of cringy dialogue and preposterous story beats.

Enough people said that the Earth was flat, so the Earth was flat. Then, they said the Earth was round … so the Earth was round.” This is a quote from the movie’s prestigious script.

But the most laughable element is how quickly the characters lose themselves. Like me, my co-worker, who also lives with a rare disease, is familiar with sleepless nights. Between sleep apnea, anxiety, medications, and other medical factors, we’re each accustomed to staying awake longer than we’d like. We both laughed at the notion of turning on other humans and unleashing chaos after a mere one night without sleep.

If that were the case, I’d be in trouble!

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What I Learned When Sleep, My Longtime Friend, Eluded Me

Lately I’ve been struggling to get an adequate amount of sleep. Part of the issue is that I recently had a debacle with my BiPAP machine, which I wear every night. My previous machine malfunctioned a couple of weeks ago and was beyond repair. Getting a new one required waiting on authorization from my pulmonologist and then approval from my insurance provider. The latter required me to have the patience of a middle school teacher right before going on vacation.

With this setback, I had to go a full week without my BiPAP. This isn’t ideal for someone like me, as spinal muscular atrophy (SMA) makes my lungs weaker and causes respiratory issues. I didn’t like going so long without such a key piece of my medical equipment. Still, I thought that things would improve once I got my new machine.

Sigh. I’m still dragging this week. I guess I have to get ready to wreak havoc upon everyone around me.

Having a working BiPAP has certainly helped me breathe better, but the fact remains that getting enough sleep is a continuous obstacle for me. Often it’s my hyperactive mind racing around the clock that keeps me from falling asleep. Other times I struggle to get into a comfortable position. Once I’m in bed, I have zero range of motion and have to rely entirely on my caregivers to shift me. This becomes especially frustrating when all I want is to move my leg a few inches.

This is just one of the many overlooked nuances that come with the package that is life with SMA. And like every other part of this package, I manage it as best I can. Though I’m trying to take care of my health and am looking for solutions to this issue, I often have to deal with just getting by. Once winter finally ends, the warmer weather will hopefully alleviate some of my stress and allow me to get a good night’s sleep on a regular basis.

Until then, my boss will have to deal with me looking like a zombie during conference calls. Maybe I can star in the “Awake” sequel.

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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