I choose my responses when the bone-deep fatigue of FA controls my body
This disease determines my days far more than what I ever imagined
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Friedreich’s ataxia (FA) affects my abilities, mood, energy levels, major musculoskeletal functions, and choices. It determines my days in ways far beyond what a 23-year-old newly diagnosed me could imagine.
It is a lot to process. But, like most things, I get kind of “used to” it. New adaptations can feel startling or all-consuming at first. They bring insecurities and feelings of anger at having to adapt yet again. But somehow, my mood recovers, and I get back to living my life the best way I can.
Still, my daily life looks very different than that of people in a similar stage of life as me who don’t have FA.
What I can control
One difference is neurological fatigue. This is so far beyond just feeling tired, something a good night’s sleep and a cup of coffee can fix. It is debilitating, bone-deep exhaustion that all FA patients must work through. I know this might sound extreme from a wheelchair user, but fatigue is the most disruptive symptom I face because it affects every aspect of my day.
I have the tools to safely get around, but there is no tool to bypass fatigue. It has the power to determine how mentally tough I feel, how physically confident I am, how I speak, and how much I can accomplish in a day.
The hardest part of fatigue is that it is invisible. People can see my poor coordination or hear my slurred speech. People can see the scars from my femur, ankle, and nose repairs (all of which were necessitated by falls resulting from my FA-affected balance) and how I need mobility aids. But my fatigue is unseen and hard to comprehend.
While everyone has experienced fatigue at some point and can relate to it to some extent, the neurological fatigue I experience is more like what follows the flu or COVID-19, when you are trying to get back to your normal activities, but your body resists. This is my “normal.”
But while FA may control my body, it doesn’t control my mind. Yes, I have to make mental adjustments constantly to accommodate my physical limitations, which can affect my mood, attitude, and determination, but I can control my responses.
In the mornings, I acknowledge that I have FA and that it imposes limitations on what I can do. Then I sit up, gauge how fatigued I feel, and make quick, necessary adjustments to my to-do list. I usually repeat the serenity prayer: “God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.”
I can’t control what FA does to my body each day, but I can control what I choose to do about it. And I choose grit and grace, despite my disability.
Note: Friedreich’s Ataxia 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 another 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 Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
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