Fatigue management relies on careful planning, being intentional
Living with FA requires thoughtful evaluation of what's on today's to-do list
Part of living with Friedreich’s ataxia (FA) is battling relentless fatigue. If I feel energized at all, it is still a fraction of what I need to successfully tackle my day.
Doing the simple, unavoidable, and monotonous tasks that all adults must do can quickly drain whatever energy I might’ve started the day with. Therefore, for the last decade, it has felt like my proverbial tank is drained from midday onward, even on my best days. Feeling constantly drained is, well, draining, even if it is my “new normal.”
Because of this, I must be incredibly intentional with my choices. I have to evaluate what truly needs to be accomplished every day, what I want to do, what the repercussions of completing my tasks will be for my energy, and what I will be asking of my body in the coming days.
If my to-do list is lighter that week, I’m fine to wash, dry, fold, and put away the laundry in one day, for example. If we have youth sports, doctor appointments, birthday parties, or school volunteer tasks that week, the laundry might sit in the basket a few extra days.
While laundry, errand running, cooking, picking up around the house, and exercising might not sound like a lot to some, it can feel overwhelming to me.
How do I prioritize my to-do list?
I haven’t yet found a tried-and-true formula for this. I’m sure there are several methods I could employ to capitalize on my time and energy, and I’ll continue to seek those out. For now, I use the following guidelines.
First, I add all of the sporadic activities I can’t miss to the calendar on my phone, such as birthday parties, school functions, youth sporting events, volunteer obligations, and so on. That way, I can plan around them.
Next, I ask for and accept help. I do curbside shopping to save myself time and energy. My mother comes to help me declutter and get organized as my needs change. My husband graciously picks up the slack when my to-do list gets away from me. I use the safest and most effective mobility aids for each outing.
Third, I always try to do my best. I concentrate on my movements as best I can to ensure my safety. I take my medications, vitamins, and other supplements as scheduled. I wear appropriate footwear to fight peripheral neuropathy flares. I try to eat a healthy diet, drink plenty of water, exercise regularly, get enough sleep, and laugh often. I try to set up my body for the best outcomes.
Finally, I give myself grace. Falls happen. Bad days happen. Laziness, mood swings, rescheduling, and bad weather occur. It’s unreasonable to expect anyone, let alone someone battling a progressively degenerative neurological disease, to be perfect 100% of the time. Sometimes my best is simply taking a nap in the morning after getting the kids off to school, and that’s OK!
Life with FA is predictably unpredictable. I know that the body I woke up in today will be disabled, but I don’t know exactly what those disabilities will allow or not. So I must accept both help and grace.
“To do this, I work and struggle using the great strength that Christ gives me. That strength is working in my life.” — Colossians 1:29
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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