I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
Friedreich’s ataxia causes a wide array of symptoms. Every FA patient experiences the disease differently. For me, fatigue is a major symptom. Before I experienced FA, I thought I understood what “fatigued” meant — being really tired. Boy, was I wrong.
Oxford Dictionary’s definition of tired is: “in need of sleep or rest; weary.” When you’re tired, a good night’s sleep, a cup of coffee, and a reinvigorating activity (girls’ lunch, exercise, spa trip, etc.) can fix you right up.
Fatigue is so much more. According to Farlex’s Free Dictionary, fatigue is “characterized by a profound lack of energy, feelings of muscle weakness, and slowed movements or central nervous system reactions. Fatigue can also trigger serious mental exhaustion.”
When I am fatigued, all of my symptoms worsen. I trip and fall more, I slur my words more, and I flat out don’t have the energy to function at my normal capacity. Even on a good day, navigating life with FA takes so much mental and physical work. For every step I take, I have to think about where my foot will land.
Usually when a person tired, a restful day or two can snap him or her out of the funk. But my fatigue can’t be slept off, and it exhausts both body and spirit. My fatigue can drive me to dark places. In its midst, my disease’s toll is emphasized. As a mom, I don’t have the luxury of “calling in sick.”
When my fatigue gets the best of me, I often find myself saying, “I’m just so sick of being me.” I want to be someone healthy and “normal”; someone who can slam a cup of coffee and “fake it till I make it” through my day. But I’m just not that person. My fatigue can’t be slept or caffeinated away. It seeps into my very cells and drains me but I must power through while my own genes fight against me every step of the way.
My fatigue is a vicious cycle: I get exhausted, so I get sloppy, which makes things harder, which makes me even more exhausted. I don’t quite know how to navigate this slippery slope yet. I need to find a way to stay on top of my fatigue and fight it before it starts by keeping up my exercise routine, eating healthily, and prioritizing sleep. If I can keep my fatigue in check, I can find the strength to manage other symptoms.