2 small ways I boost my mood with Friedreich’s ataxia

I recently complained to my husband, Dave, that taking care of my health is all I ever do. It isn’t, but that’s how I felt at that moment. Dave replied with some version of “I imagine it must be hard, but you’re worth it.” Of course, most of me agrees, or I wouldn’t be doing it.

But a little voice inside my head said, “Easy for you to say, you’re not the one doing it.” To be clear, I could have freely shared this with Dave, I just didn’t.

Sometimes I’m overwhelmed by everything required to take care of my health with Friedreich’s ataxia (FA). Not only is there a lot to do, but because of my poor coordination and need for a wheelchair, basic tasks take longer. Additionally, doctor appointments, medical equipment, and the need for accommodations in various settings can entail red tape. Red tape equals time and energy.

It’s exhausting.

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Consequently, I’m always looking for simple ways to feel better emotionally — things that are easy, free, and don’t require much time. Taking care of my health can eat up that precious commodity of time, so I don’t want to waste it doing things that haven’t proven efficacious for me.

Because I am a licensed clinical social worker, I need to say that these small acts do not replace getting professional help. A diagnosis of FA or any chronic disease can be traumatic for patients and family members. Please feel no shame in getting the mental health support you need. I have done so many times in the 42 years since my diagnosis.

The following are two of the little hacks I use.

Smiling with, and despite, FA

I first learned about the benefits of smiling right after I was diagnosed. I vividly remember walking across the University of Massachusetts Amherst campus wearing my beloved purple sweater with shoulder pads (because it was the 1980s) and a fake smile plastered on my face. To my surprise, even though I had read that it would happen, people smiled back.

Smiling releases those feel-good chemicals in your brain. People you smile at are likely to smile back at you. So not only do you have those chemicals in your brain, but now the person smiling back does, too. What an easy way to spread joy!

As you can tell from my little college vignette, fake smiles work as well as real ones. Good thing, because I didn’t feel I could produce a sincere smile just after my diagnosis.

If you read my column last week, you know I have an amazing service dog named Wendy. During my training to get her, I learned that dogs like to be smiled at. This makes sense, as dogs are able to read people’s facial expressions. So I smile at her often, another win-win. Smile at your dog — you’ll both be happier.

After 40-plus years, smiling is a habit for me, one I like.

Sitting up as straight as I can

When I was still ambulatory, I constantly walked with my head down because of poor proprioception. I had to (and still do) see my feet to know where they are going. This was a far cry from my pre-symptomatic days of horseback riding. In those days, my instructor’s constant refrain was “heels down, head up.”

One riding lesson had us students riding hands-free with a broom behind our backs and through our elbows, which held the broom in place. Try slouching in that position! Because of all that training, I knew sitting up felt better.

That constantly hunched posture was part of my consideration as I transitioned from a walker to a wheelchair. When I use a wheelchair I look up, not at my feet. I am constantly adjusting myself in my wheelchair to get as straight as my scoliosis will allow.

In preparing this column, I wondered if good posture simply helped me feel better or if the benefits were more universal. It turned out to be the latter. Research indicates that good posture boosts your confidence, assertiveness, and performance under pressure.

I know that, depending on your FA progression, sitting up straight may not be possible — but if it is, try it. Maybe it’ll help you feel stronger, too. It’ll be kinder to your back.

Sitting up straight has gotten harder as my FA has progressed, but it’s still doable and very much worth it for me.

After I explained to Dave why I was grumpy, I smiled at him and he smiled back at me. Feeling loved and appreciated, I didn’t feel so overwhelmed. Those feel-good chemicals running around my brain didn’t hurt, either.

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.