Fatigue management is a key part of living with Friedreich’s ataxia

A while ago, a friend of mine with Friedreich’s ataxia (FA), a disease I also have, told me that she only plans one activity a day. That sounded like sage advice, but it was advice I haven’t been following in my own life.

Last week, for example, I scheduled too many activities and ended up being stressed out. I had to cancel appointments, which made me wonder why I hadn’t followed my friend’s lead.

Overscheduling is a problem for many people, not just those of us with FA. However, one of the symptoms of FA is a lack of coordination, which significantly slows down one’s ability to complete what health professionals call “activities of daily living.” These are things like maintaining daily hygiene, getting dressed, and preparing meals.

Each year, I fill out a health-related quality of life questionnaire, which, among other things, asks about how difficult it is to complete activities of daily living. I appreciate the questions because they remind me that it’s understandable that I’m slow while doing these activities, which affects my quality of life.

I call this “FA time.” Most of the time, I’m OK with it, particularly if I schedule things appropriately. Calling it “FA time” injects a little humor into the situation and helps friends and family members understand what’s happening.

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An additional aspect of “FA time” is fatigue, which is another symptom of the disease. When I overschedule things, it makes me too exhausted to enjoy them and to be present in the moment.

Some people manage fatigue by planning what they spend their energy on. I partially follow this strategy, too. On a typical weekday, for example, I won’t plan anything that entails leaving my home after 4 p.m., which is about the time I’ve run out of energy. If I do have energy during the day, I’ll do things like working in my garden.

I’m an extrovert, so while I do need time alone, I’m also energized by being around others. Being aware of what energizes me is an important part of managing my fatigue.

Sometimes, though, it’s an impossible task. I’ll think I’ve planned appropriately but then get to the end of the day and have brain fog. Therefore, planning a routine entails revising it to meet my needs.

As I continue to cope with “FA time,” I think I’ll try to follow my friend’s advice and schedule only one appointment or other activity per day. We’ll see how it goes.

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.