Of all my FA symptoms, I despise fatigue the most
Managing fatigue is challenging, but I've found several strategies that help
Today, as I do most days, I woke up still tired. My sleep last night wasn’t great, but that’s not why I’m tired. I’m exhausted because I have Friedreich’s ataxia (FA). I tell myself I’m tired, and then the self-help book reader in me says, “Tell yourself you’re energized.” It doesn’t matter. I can’t talk myself into being energetic.
The self-talk that works for me right now involves being kind to myself and taking control where it counts. It goes something like this: “You have FA; that’s why you’re tired all the time. While I can’t erase the tired, I can improve my energy.”
FA is a complex condition that affects every part of my health and daily life. It causes many symptoms, but for me, the worst is fatigue.
Fatigue is a common and often overwhelming symptom for people living with FA. Unlike regular tiredness, it can persist and drain both physical and mental energy.
Because of my poor balance and coordination, even simple tasks require more effort and can quickly lead to exhaustion. Getting dressed is tiring, showering is tiring, preparing meals is tiring, and so on. But I can’t skip daily living activities, even if they make me tired. Chronic fatigue greatly limits my ability to participate in home, work, and social activities, which lowers my overall quality of life.
I’ve often heard chronic fatigue explained using the spoon theory. This analogy uses spoons as a measure of energy, noting that people who are chronically ill start the day with less energy than healthy people. Because we have a limited number of spoons each day, it’s essential to establish and prioritize our daily activities.
I used to find this really helpful in keeping the fatigue at bay for most of my day. But I currently feel tired all the time, so I need to find ways to accomplish tasks despite my fatigue.
Managing fatigue with FA typically involves a combination of medical care, lifestyle changes, and support strategies. Physical therapy, occupational therapy, and regular exercise tailored to each person’s abilities and needs can help preserve strength and stamina. Additionally, pacing activities, prioritizing rest, and seeking emotional support are vital.
Recognizing and addressing fatigue as a key part of FA is crucial for both patients and caregivers to promote better well-being and independence.
What’s working for me right now
Even though I feel tired after a workout — more so than healthy people — it gives me more energy in the long run. Plus, exercise benefits people with FA on multiple fronts.
Eating right definitely helps, but preparing healthy meals is tough for me. Pulling a box of crackers off the shelf and a tub of cottage cheese out of the fridge is semi-healthy and a lot easier than grilling a chicken breast.
I’m currently trying out a service that delivers prepared meals. So far, so good, as the meals are tasty and nutritious. I view this expense as health-related, which makes it more palatable to include in the budget. Eating well also benefits people with FA in multiple ways.
Sleep hygiene is beneficial, too. I usually don’t sleep well; I’ll fall asleep quickly but wake up frequently. Disordered sleep is common in people with FA. I’ve noticed that good sleep hygiene improves my sleep, although it doesn’t completely fix it. Skipping a glass of wine before bed has really helped!
Do I always do everything possible to manage my fatigue? No! My expectations about what I can accomplish each day are unrealistic, so I’m trying to pare down my to-do list. Wanting to do more than I can is an ongoing challenge. I am a work in progress.
Last week, my sister Lisa encouraged me to write something funny about my life with FA. To paraphrase her, I don’t constantly talk about the hardships of FA, so why do I continually write about them? I will try to bring more humor into my column. Maybe next week?
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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