I’ve spent a considerable amount of time trying to come up with a topic for this week’s column, and it has been rather difficult. Actually, writing in general has been a struggle. Brain fog is the real deal, friends. And today’s column is brought to you by lack of sleep, post-Thanksgiving fatigue, and the inability to function properly in both writing and life outside this column.
It probably would have made the most sense to take the week off to rest and recoup for the holiday season ahead. But in an attempt to put my truest self forward, sometimes that means I have to show up to the scene when I’m a little discombobulated and out of sorts from my daily routine. As I look up from typing, I see my half-empty mason jar of coffee reminding me that no amount of caffeine is going to shake this feeling of disconnect and physical exhaustion. At this point, I’m pretty confident nothing will, besides rest and time. Unfortunately, this pattern of living has become my norm in the past several weeks.
These feelings come in waves from time to time. Living with SMA, fatigue, and muscle weakness has always been my main problem, but lately, it has taken a lead role in my life. I should be used to it at this point, especially considering the time of year. The inner workings of my body have always been freakishly in tune with the environment, and every year when daylight saving time hits in November I become out of sorts for weeks. My internal clock stops working. My body wants to sleep by day and party all night. Meanwhile, my brain tries fighting these feelings by training my body to adapt to its “new” environment. And let’s just say it’s a perfect storm for disaster to strike.
While I’ve never required eight hours of sleep to function, those glorious hours I do get (six to seven hours of intermittent sleep) are just enough to keep my little muscles working throughout the day. It’s just enough to keep my stamina up to go about my day as I please. And it’s just enough for me to think coherently and function at a basic human level.
These days, those glorious hours are few and far between. As of late, I spend my waking hours rationing my energy level to ensure that I have the strength to simply eat and breathe. Once those needs have been met, I take whatever is left to tackle some items on a to-do list that I’m falling behind on, or have (even more) coffee with friends.
It’s a vicious cycle that I’m in right now; one that I’m familiar with all too well. Unlike most columns I write here, I really don’t have much of a takeaway other than to let you know that you are not alone on your hardest days. It took all I had in me today to eat three meals and write this. And as much as I enjoy binge-watching “The Office” on days like these, the reality of my circumstances can be difficult to wrap my head around. But I know that with a little extra time and TLC, I’ll be back to my old ways of living (and thriving) with SMA again.
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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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