Rethinking exercise

As a kid, I used to watch Jack Lalane doing jumping jacks on his morning exercise show. I would hop right up and join him, wondering why some people thought exercise was hard.

Later on, I picked up a booklet that outlined the calisthenics routine of the Royal Canadian Mounted Police. Who could argue with those healthy-looking policemen in their Smokey-the-Bear hats and bright red coats? So I dutifully followed the program, touching my toes, jumping like Jack and push-push-pushing up.

In High School I could play basketball, hard, for four hours at a time. I was never any good at it, but I was in excellent physical condition. After that, I went to college, and I let my fitness slide. I came from a family of smart people, not jocks, and the idea seemed to be that you played hard in your youth and then got by on the results of that as you aged. Right.

I became interested in exercise in my thirties as my inflammatory arthritis really began to heat up. I recognized a need to keep myself as strong and flexible as I could. I began to learn yoga and how to lift weights. I bought a treadmill and actually walked on it. A few years later I bought a Concept 2 indoor rowing machine and discovered a cardiovascular activity that was easy on my joints while exercising most of the muscles in my body. I got into really good shape.

Then The Flare began, the big one. The one that’s been worse than anything I have ever experienced or could ever have imagined. It began, very mildly in the summer of the year 2000, and it gained speed and intensity for several years. In the fall of 2002, they put me on prednisone, and in the fall of 2003 they started me on Methotrexate injections.

Just as the Methotrexate seemed to be helping, my liver enzymes went up. We stopped the Methotrexate and waited, but the values didn’t come down. This earned me a liver biopsy that showed “mixed cell inflammation” (my favorite kind), lotsa fat, and no scarring. My liver doctor told me that I had NASH (non-alcoholic steato-hepatitis) and said that I needed to lose weight.

Admittedly, I looked like the Great White Whale. Two years of prednisone and difficulty exercising can do that to a girl. But the conundrum was that they did not want me on Methotrexate unless my liver was happy, but my liver would not be happy until I was on Methotrexate long enough to improve enough to begin exercising and losing weight. Erg.

So, with a story like that, how could I possibly set myself up as any kind of expert on exercise? I look nothing like Jack Lalane, even if I tried to wear that stretchy blue jumpsuit. And I have never towed a string of tugboats on my birthday by swimming along with a rope clenched between my teeth. (Yeah, he did that.) Most of the people who lecture you about exercise look like models or actors who work out five hours a day – lean, sculpted, fit, and beautiful – glowing with health. I guess the real question is: who the hell do I think I am?

Well, actually, I am the most qualified exercise guru you will ever meet because I am just as ill as you are, and I know how very hard – or even impossible – it can be to exercise. But a few years ago, when I was talking with my primary care physician, a man who had worked with me for ten years, he said something very interesting. He commented that of his “very sick” patients, I had held out the longest, that is, I had managed to keep working and stay active longer than the others. And he observed, almost as though he were talking to himself, that he rather thought that it was my strange obsession with continuing to exercise, no matter what, that perhaps accounted for the difference.

Ah-ha, like a Lily Tomlin character, I’ve got “effidence.” And while following my advice is guaranteed not to make you look like Jane Fonda (unless, of course, you happen to be Jane Fonda), you might enjoy improvements in your state of mind, mood, self-image, and energy level.

Hopefully, my story-telling has amused you enough to keep you reading until this point, but my guess is that along about the time I wrote “exercise guru,” your mind began to wander, just a bit. In fact, in a few moments it’s altogether possible that you’ll turn the page and move onto an article on something more interesting – like hemorrhoid remedies.

Don’t worry, you’re not offending me. It’s simply a case of “EGO” (which stands for “Eyes Glaze Over”), and it’s how most of us react to people who try to hector us into hurting and humiliating ourselves at the local gym. Only you need to know one thing: That’s not what I’m trying to do.

Like I said, I’m neither Jack Lalane nor Jane Fonda. I’m like you. I have some mornings where it takes me a half-hour just to sit up in bed, by which point I feel like I’m ready for a nice nap. If I sit too long in a chair, sometimes my right hip does something so ugly that it takes several agony-filled minutes for me to manage to put any weight at all on that leg. I’ve got a couple of toes on each foot that come (the morning after taking Methotrexate) and go (a few days later), and more than once I’ve been walking along and wondered how a ball of wet newspaper ended up in my shoe, only to discover that what I was feeling were my own numb toes.

So when you tell me, “I just cannot exercise,” I hear you. When you tell me, “I said it’s impossible for me to do that,” I know just how you feel.

But I would also claim that part of your problem is that, like me, when you think of exercise, you envision Jumping Jacks. Or you think of some article you read in the Reader’s Digest about a man who, having lost all of his limbs in a terrible accident caused by his congenital lisp, still manages to perform on a trapeze using only his mouth and a splendid set of abdominal muscles. And you think: “That is definitely not me.”

Well, of course not. Our situation is different, and our definition of exercise and accomplishment needs to be different, too. It’s not that you cannot exercise – it’s that you cannot do what you think of as exercise. You think that walking to the refrigerator for a beverage is not exercise – exercise is running a 10K race. You think that standing up from a chair is not exercise – exercise is careening down a hillside on skis at 70 mph.

The first thing you need to change is your conception of exercise. If you have a serious chronic illness, especially one involving arthritis, arthralgia or fibromyalgia, then it’s time to create a definition of exercise as something that you can do.

For us, exercise cannot be a joint-pounding frenzy of pointless activity, but that does not mean that we cannot move our bodies. I know that you’re probably feeling skeptical. Well, let me share another story with you.

When I was in college, we had to take a swimming test because the school was located on the shore of a large lake. I hopped into the pool with complete confidence, having taken years of swimming lessons in my childhood, and began paddling up and down the pool with my arms, dragging my arthritic and fairly useless legs behind me. The swimming coach ran alongside me, blowing her whistle frantically. “Hey!” she yelled. “That’s not swimming!” She paused, searching for words, and finally sputtered, “You’re just getting around in the water!”

I sculled for a moment, considering this, and then replied, “Well, where I come from we have a name for ‘getting around in the water’ – we call it swimming!” And off I went, continuing my laps. Over her vigorous protestations, she finally passed me on the swimming test.

My point is that just because you are not able to do something the way other people (or you!) think you should, that does not mean that you cannot do it at all.

As chronically ill people, we need to define exercise as the fine art of getting our blood circulating, of quickening – even if it’s just a little – our heartbeat, of strengthening our muscles and improving our sense of balance.

Think of exercise as a chance to commune with your body and the world around you. It can be a way to encourage the release of those nifty little beta endorphins that would make you feel better. It can be an opportunity to reduce perceived pain by lubricating your joints and soothing your muscles.

If your attempts at exercise are not doing those things, then you’re not exercising in a way that is meaningful for someone who has a disabling chronic illness.

The very first thing you need to exercise, is your imagination. You need to redefine physical activity in a way that it’s something you can do.

If all you can do is get up and walk once around your living room. Do that. Set your watch or a clock to beep on the hour, and when you hear it, get up and hobble around your living room, once. Then sit down. Over time perhaps you can increase the frequency or the number of times you walk around the room.

Start small, be kind to yourself, and give yourself an “atta girl” for whatever it is that you are able to do.

I have a name for my own exercise program. It’s called, “Starting Over,” because it seems as though that’s what I’m always having to do. I’ll be exercising, a bit more, little by little, until something happens that sets me back on my heels. I get a virus or I have a flare or whatever. That’s the point when many people give up. But not me. I see my program as starting over, again and again. Because it’s not how much I do that counts — it’s how often I make the effort.

Am I tempted to give up? Often. Do I throw in the towel? Oh, yes. But then, after a few days or weeks, I go back at it.

I know that I cannot make myself well. No matter how well I eat or diet or exercise, I am not driving the bus that is this illness. I’m sick, and that’s how it is. But I want to be as alive and viable as I can be, for as long as I can be. And that’s why I do it.

And that’s why you should, too.


Copyright © 2004, 2009 by Candace L. Van Auken. All rights reserved.


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I am a writer and an activist for people who are disabled by chronic illness. I also interested in issues related to the LGBTI community and to women making music.

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Posted in Autoimmune diseases, Chronic illness, Women's health
3 comments on “Rethinking exercise
  1. Len Levenda says:

    This article has everything I like.It has humor, it stands in defiance of authority-and gives advice you can actually use-immediately. Keep ’em coming Candace.

  2. Don Muchow says:

    Candace, this is fantastic. You’ve bottled the essence of what it is to approach exercise as a life-enabling tool and not a chore. Bless you!

  3. Evelyn says:

    Hi Candace! I’ve been looking for this particular post of yours because this was exactly what got me out of my depression and in fighting Idiopathic Anaphylaxis. I’ll be quoting a few passages from this post to reinforce what I went through. And I’ll direct my readers to this post.

    Take care and I hope you’re doing well!
    Evelyn

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