My to-do list always looms, but self-compassion helps me manage
Friedreich's ataxia makes it harder to complete everyday tasks
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This morning, I did my usual thing. I woke up, stayed in bed, took one pill, waited half an hour, and then took three more pills. During that half-hour, I meditated and caught up on the news on my phone. This routine helps me remember to take my pills. If I look at it objectively, that’s a good amount to have done before I climb out of bed.
Yet I woke up today feeling lazy. I wasn’t giving myself credit for the work I did, including taking my meds, meditating, and staying informed. Why? I’m not completely sure. I know I tend to be hard on myself. Maybe because I was in bed?
When dealing with my disease, Friedreich’s ataxia (FA), it’s vital to recognize all the little things I do throughout the day.
Fatigue and declining dexterity make tasks harder
Fatigue is one of the two main reasons why it can be hard to get through my to-do list. Often, I have the time but lack the energy to complete things. When FA fatigue hits, even activities I enjoy can feel overwhelming. My fatigue is horrible. Being unable to do things because of it feels twice as bad.
Additionally, I don’t know when it will strike. I can safely predict that it will hit by the end of the day, especially when I’m sick or worn out. However, often I’ll be humming along through my day, thinking everything is going well, when fatigue suddenly sends me straight to the couch to browse Netflix. These are the sneakiest days — when I slept well, am not sick, and have no reason to suspect fatigue. My to-do list laughs at me on those days.
FA is degenerative, and the decline in my motor skills is my to-do list’s second nemesis. Each day, I am less able than the day before. While these changes aren’t noticeable day to day, they are definitely apparent over time. What I could do in half an hour last year now takes me 45 minutes. I have a hard time estimating how long it will take me to do something.
A recent example is trying to make myself a quick breakfast last week. I took the frozen berry bag out of the freezer and dropped it. Little frozen berries were scattered all over the kitchen floor. I imagine that cleaning berries off the floor is challenging when you’re coordinated. When you add my poor coordination and a wheelchair to the mix, it is especially tough. My cordless vacuum makes cleanup easier, but it still adds about half an hour to my “quick breakfast.”
A year or two ago, I probably wouldn’t have dropped the bag of berries. If I had, the cleanup would have been faster. I had better dexterity back then.
Silencing my inner critic will help me get things done
According to research published in the Personality and Social Psychology Bulletin, people who practice self-compassion and cultivate a kind voice in their heads are more likely to stay motivated. Several studies have shown similar results. An article in Psychology Today combines these findings with common-sense advice.
So, being hard on myself is a problem. It is not staying in bed that made me feel bad.
I am trying to nurture my self-compassionate side. This is the voice in my head that says, “Good job, Jean, you got a lot done before you got out of bed.”
The magic is that the more I celebrate the little stuff, the more things I get done. When I pat myself on the back for doing the previous thing, it makes it easier to do the next thing.
My self-critical side is a fighter. I’ve been working to quiet her for a long time. However, my kind inner voice reminds me that FA makes it harder to get through my daily to-do list.
Today, when I don’t get everything on my to-do list done, I will let self-compassion reign. I’ll buy myself a gift as a reward for getting things done when I land on the couch. There is a blooming succulent I can order online for delivery that I’ve had my eyes on. It will remind me to keep up the self-compassion. By being kind to myself, I know I’ll be more motivated to get through tomorrow’s to-do list. And if I’m not motivated, self-compassion reminds me it’s OK.
It is also OK that self-compassion is hard for me. I’m trying to give myself credit for the little things. I am and will always be a work in progress.
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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