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Finding That Sweet Spot Between Exercise and CFS

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I used to exercise regularly by walking and doing a routine of strength-building exercises I put together myself. I did this before either were all the rage for staying fit. Before videos, classes, walking shoes.

I didn’t have a car in college or graduate school, so I walked everywhere. And I loved walking no matter the weather, even going out with wet hair that turned to icicles in sub-zero conditions. A campus and city with steep hills and high temperatures proved more challenging. I changed things up with biking and continued with biking as my primary exercise after I finished my degrees, worked, got married, and got a car.

That is, until I came home after biking, lay down, and couldn’t move. I could breath but also felt like I didn’t have enough oxygen. I thought maybe I had heat exhaustion even though I hadn’t ridden very far or strenuously. It turned out to be one of the symptoms of slow-onset chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). This symptom is called post-exertional malaise (PEM), a flare-up of symptoms that happens after physical exertion, especially exercise. Too much lactic acid build-up in muscles and something going haywire in processing oxygen properly during exercise are two malfunctions CFS/ME researchers are exploring. All I know is “malaise” hardly begins to describe the weakness, brain fog, and crushing exhaustion that hit after I exercise. And the burning sensation in my muscles.

I tried going back to walking as my go-to fitness routine. One day, I was by myself and several blocks from home when my body gave that “drop” command again. This time, it included numbness in my legs. I had to lay down on someone’s yard. This was before cell phones, so I waited until I had feeling in my legs again and wobbled home. To this day, I don’t know how I made it home. Shorter walks with my husband were better, and I didn’t worry about being alone if I crashed, but the crashes just happened a day or two later.

I try and fail to find a sweet spot between some sort of exercise for fitness and stress relief while avoiding PEM. I’ve learned to count walking from the parking lot to class, walking across campus, watering and gardening, doing laundry, cleaning, and grocery shopping as exercise. Except for gardening, though, these “exercise routines” are really chores or are done inside or in places I associate with stress. They get my body moving but don’t provide a change in scenery or much relaxation.

To get outside, get away, I ride a horse about once a week. This hippo therapy, as it’s called, uses the same muscles as walking does, helps with balance, and isn’t weight bearing, something helpful for PEM. Focusing on the horse and being in the moment and the ranch’s dirt, sky, palms and cactus give me a mini-vacation. I’ll also swim in the summer once or twice a week every few weeks. These haphazard, irregular exercises are what I can afford, happen if weather permits, if my horse doesn’t need new shoes, if I have any energy left over after working and doing my “chore” exercises.

I’d prefer to stay fit to keep a healthy weight and avoid additional illnesses. I love being outside, the stress relief, the lift in mood, and the satisfaction that comes with taking care of my body and my health. With CFS/ME, self-care and being functional require a strange switch in thinking and practice. Real fitness, strength building, a regular routine I can look forward to – those aren’t realistic goals for me anymore. There’s nothing routine about this illness, and it has a way of turning conventional wisdom about living and health upside down.

Ironically, genetic testing I recently underwent shows I have fast-twitch muscles, what elite athletes in sports like sprinting or jumping have. I remember being impatient for those fast-twitch muscle moments — leaping in ballet class, spins when ice-skating, the long jump in track, sprinting. I didn’t stand out doing any of this, I didn’t train, but I did feel something, well, electric in those moments.

Last week in riding class we each got to gallop one by one around the arena. A student whooped and hollered as his horse made the change from trot to gallop, pulling up to the rest of us waiting our turns. “Is there anything more fun than that?” he asked as we all grinned.

Stop and go and one short burst. It’s not exercise anymore, but it is living.

Getty Image by macniak

Originally published: July 20, 2018
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