Ordinary Girl’s Guide to Being Active with Scleroderma

The other weekend, Max and I went away and I made a brave step regarding my struggle to stay active (or not) while living with scleroderma.

There are many people who have instructed me to try things that I knew wouldn’t work for me over the years, using their ideas or personal experiences. I’ve allowed myself to damage my body by listening to those who have enthusiastically encouraged me to inappropriately overextend myself.

In the end, it seemed much easier not to take any risks and, as a result, I had become too afraid to try any new physical activities at all.

However, in secret, I’ve been wanting to try out an electric bike for some time now. The idea of being able to pedal as much as I could and then be able to stop and rest when I needed to without having to stop the whole activity seemed like it would work for me. And, as luck would have it, while away we found a man on the street corner of the village renting electric bikes!  

To say I was pretty nervous getting on the bike is an understatement. I was a little worried that my thumbs wouldn’t be able to push the brakes properly; I felt  that my fingers didn’t grip the handlebars as firmly as they should, and I knew I’d get fatigued quickly. But I decided to “extend myself” and give it a try anyway. After all, it was my idea.

Whizzing along feeling the breeze in my face, taking in the sights and pedaling when I could — but not when I couldn’t — was enormously exhilarating! Making accurate choices about when to stop pedaling was easy, because I knew if I overdid it I’d conk out and risk falling off the bike altogether. For me, just getting on the bike was physical exercise, so there was no risk of under-doing things. Somehow, that very fine line between under-doing it and overdoing it became clear.

Thinking about my experience afterward, I found myself trying to identify why I had been able to take up the challenge to attempt something physical and also accurately regulate how hard I pushed myself.

First, I decided to try the electric bike on my own, simply because it made logical sense to me in terms of how it worked, together with how I know my body and mind works. There were no “experts” involved, and no pressure to try it.

Second, the choice to pedal or not was also my own, as I was the only person riding the bike. No one was hanging over my shoulder telling me when to stop and start, which meant I could hear my own body and its reactions clearly and respond appropriately.

Kim on an electric bike. (Photo courtesy of Kim Tocker)

Third, my problem was that staying inactive caused by negative past experiences of pushing myself too hard had only offered me two extremes to work with. I had no understanding or experience of the shades of gray in between that offered me a balance or middle ground.

My answer came when I figured out what I thought would work for me, without pressure, and this in turn gave me the courage to try.

When I was in practice as a counselor, I knew the answer always lay with the client and had nothing to do with my input. I was only there as support while people explored their own beliefs and found their answers.

I’m sure the same theme applies here, too.

I encourage you to trust yourself enough to know what will work best for you in terms of your physical activity. Look for your own options, follow them up, ask for input from experts where necessary, but never give them them all the power. In the end, judge whether it’s right for you by yourself. Take a manageable step and know you are the one in charge.

Be brave, be sensible, and above all, don’t do anything that means you cannot hear your own voice to guide yourself.  

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Note: Scleroderma 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 other 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 Scleroderma News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.