Monday, May 2, 2016

bicycling, crohn's and the spoon theory

Yesterday, I loaded up the trailer wiith my guitar, amp, mic stand and other gear, and rode into downtown Portland to play a two-hour solo show at a coffee house. Strangers and friends came and stayed to enjoy live music; a few bought my CD or left money in my tip jar. I was in surprisingly good voice for the entire show, which made me happy.
When it was over, I packed everything up, re-loaded the trailer, and rode home again. It was roughly twelve miles round trip.

For anyone living the bicycle life daily, this would likely not be a huge deal. Even when you add in the extra energy required to perform for two hours, it's still fairly easy (if you know what you're doing).
But that's where most people and I differ.

I have Crohn's disease, an auto-immune disease that affects how my body pulls useful nutrients out of the food I eat and converts them into fuel. It also makes my bowel movements irregular and far more frequent then the norm, and when I am in a flare-up I also get slammed with massive buckets of fatigue and occasionally even severe pain. There is, as yet, no cure; but I am able to function with a combination of medication, dietary restrictions, moderate physical activity and regular periods of rest.

Hauling a trailer full of stuff across town and performing for two hours and then hauling all my stuff home again requires an output of energy that, for someone with an auto-immune illness, can sometimes be hard to call upon. Because some days, it just isn't there. So I have to keep track of my energy and try to plan ahead.

Yesterday was a good day. I had energy enough to do everything mentioned above and enjoy myself in the process. I knew I'd pay for it later. So this morning, I was productive and got stuff done -- and this afternoon I'm staying close to home and giving myself permission to nod off for a half-hour if I need to. I also spent a fair amount of time, well, indisposed. Because that's sometimes a big part of life with Crohn's (or its cousin, Ulcerative Colitis).

Twenty years working in the bike industry was an amazing run for someone like me. But the clock was ticking and there were other things I wanted to do before I got too old, so four years ago I walked away from the bike shop. I have no regrets, even though I miss the steady paycheck. I couldn't have sustained 35 to 50 hours a week on my feet indefinitely, and in hindsight I'm glad I left while I could still choose.

Freelancing is a very hard way to earn a living. When it rains, it pours, meaning that sometimes I have plenty of work; and other times I'm living very close to the ground and struggling to pay bills  because I can't get enough enough work (or can't work enough with my fluctuating energy levels to work full-time for someone else).
But freelancing as a musician and teacher affords me the flexibility that life with Crohn's  disease sometimes demands. There are people with this disease who are far less functional than I am, who are so weakened by the illness that they cannot work at all. I am fortunate in that my case is considered moderate.But I am getting older and the disease is progressing. There may come a day when I cannot travel, or work much at all. The fact that I could ride my bike across town and back yesterday -- that I had a good enough day with enough energy to do that -- resonates as a real gift, a blessing, that I don't take for granted.

Riding a bicycle has helped in some ways, providing enjoyable physical activity that I can moderate as needed. But I still need to be mindful of over-expending of energy sometimes. Which is why I really like the lesson provided by this essay called The Spoon Theory. It explains how energy plays a big role for many who live with auto-immune illnesses. Because May is Crohn's and Colitic Awareness Month, I am sharing this essay with everyone I know so they'll understand why sometimes my body -- and therefore, my schedule and availability to work, play or socialize -- is unpredictable.
Please read the essay and consider if anyone you know is living with an invisible illness.
Some illnesses cannot be seen easily, but that doesn't mean they aren't there and real. Thanks for reading, and thanks for your patience and understanding. I'm gonna go take a nap.
Happy riding!

Crohn's & Colitis Foundation of America:
Get Your Guts In Gear (GYGIG):

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