Sleep issues have a serious impact on my daily life with SMA
A columnist grows frustrated with her recent lack of rest
Peeking up from my pillow and seeing that it was 4:55 a.m. was an unpleasant surprise the other day. I had slept only a whopping 20 minutes longer than the night before, and it was becoming a pattern. Having fallen asleep around midnight, my body was riddled with exhaustion, but somehow, my brain was ready to face the day. It was an interesting juxtaposition.
After having the most unproductive rest for the past two weeks, I’m beginning to think I’m allergic to sleep. At least that’s what I tell myself in the early morning hours when I’m awake in bed. It isn’t my fault I can’t sleep. I’m not the one with a problem. It must be the “allergy” that’s keeping me awake.
Sleep has never come naturally to me. Living with SMA also poses additional hurdles when it comes to getting adequate rest. Requiring a BiPAP machine means I can’t fall asleep or doze off when my body is tired unless I’m near the device. Because the machine is meant to keep my airways open, I start to experience apnea-like episodes and stop breathing if I don’t use it.
However, my BiPAP isn’t the only hurdle. Sleeping well means being comfortable in bed, and getting me comfortable in bed is an art that few master.
Finding that sweet spot of comfort is challenging with my scoliosis, contractures, and general aches and pains. As a result, my discomfort often causes restlessness and requires me to call out to be repositioned. Sometimes I even struggle with communicating to others how to position my body because I don’t know what will make me feel better. The disruption this causes in my REM cycle is enough to affect my energy level the following day.
I’m still showing up
Sleep is a necessary component of my overall health and well-being. It’s more than just feeling rested. My body works incredibly hard each day to breathe, talk, and perform other simple tasks that many take for granted. I need my sleep to keep pressing forward and showing up each day. Sleep restores my muscles and clears my head. Even though my energy grows scarce, sleep gives me a semblance of control over what I can pour this finite energy into on any given day.
While I’ve been accustomed to interrupted sleep all my life, it’s been even worse in the past couple of weeks. Though my mother reminds me that my sleeping patterns go through phases, I’m still frustrated. I’m still defeated. And I still have to muster up strength and energy each day because SMA doesn’t take days off. But amid the exhaustion and demands of this disease, my resilience to continue showing up remains unwavering.
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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