Hobbies reenergize me when Friedreich’s ataxia symptoms hit

If my disease slows me down, I do something active to find my flow

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by Jean Walsh |

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The other day I decided to try watercolor painting again. That may sound like an extremely frustrating activity for someone who signs their name like a 5-year-old. No offense to 5-year-olds.

Poor motor skills are one of the symptoms of the disease I have, Friedreich’s ataxia (FA).

I’ve always loved creating visual art. Painting with watercolors is something I’ve done and loved throughout my life. However, when I last spent time on it, my motor skills were appreciably better.

When creating in the visual arts, I can put some tunes on and work for hours that feel like minutes. That’s one way I know I love an activity; time evaporates. Some psychologists call that being in flow.

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I needed to find an active, renewing activity for days when the weather won’t allow me to be out in my garden. Gardening is a flow activity for me. Active is key. I love watching the TV comedy “Ted Lasso as much as anyone I know, but it’s passive, and while enjoyable, it’s not renewing.

FA has made it crucial to find activities that renew me. I struggle with fatigue, which to me is the most harmful FA symptom.

Old hobbies with a different skill set

Before I started with watercolors anew, I knew two things: 1) I used to love it, and 2) I’d be less controlled with this painting than when I last tried it about 10 years ago. FA is degenerative, so I knew my fine motor control would be worse. Painting could be too frustrating to be fun anymore. But armed with watercolor equipment, paper towels, and experience watching some YouTube videos, I plunged in.

I did love it. I was worse at it, but channeling the spirit of “I’m doing this for fun,” I was OK with that. Two hours went by in a flash. I felt calm, productive, and accomplished. (OK, my sun in the blue sky was pitiful, but I made something.) Bingeing Netflix never feels that way.

Vegging out is necessary sometimes. Occasionally, despite my best plans, fatigue forces me to try a passive rather than active pastime. I’ve struggled to accept that. It took me a while to silence the voice in my head, which told me I was lazy when my body simply required vegging out. If fatigue is something you struggle with, too, use my experience fighting with myself about what I’m realistically able to do and give yourself permission to veg out sometimes. Skip the internal struggle.

Of course, you can do other things to help your fatigue: exercise, eat right, spend time with friends, etc. But hobbies are a must for my repertoire. Having a hobby can help your mental health. My hobbies take me away from my worries and help me stay focused on what I can do, not what FA prevents me from doing.

Hopefully, you can find or have found an active hobby that helps you refresh. Maybe you’ll metaphorically accomplish a yellow circle against a blue sky, or a beautiful mountain-view landscape. Either way, I hope you enjoy the process and it helps you hit the refresh button as watercolor painting did for me.

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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