Training with MS: Katja’s story

August 1st, 2010  |  Published in Inspiration, Real stories  |  8 Comments

4664228498_fb2fce86fbKatja runs the blog brokenclay.org. She’s 50 years old, and she’s had MS for 16 years. And she weight trains.

She’s lost (and maintained) a total of about 55 pounds to date (~15 more to go). She started doing athletic stuff about 5 years ago, and started lifting two years ago. She’s now handcycling, swimming and racing regularly. She did her first 10K as a wheelchair racer in May 2010 (in the Bolder Boulder, one of the biggest 10Ks on the continent — the wheelchair racing contingent was very intimidating, she says), and her first sprint triathlon in June.

Here’s her story.

Starting out

As a child and young woman, I was pretty much full of self-loathing.

I was overweight (although not as overweight as I thought I was) from my early teenage years on. I worked hard to disassociate my body, my physical self, from my essential self.

My husband, on the other hand, defined himself almost exclusively as an athlete. He ran marathons and did triathlons, he watched what he ate, and he treated his body as a valuable resource that needed to be taken care of. Out of love for me, he begged me to start doing something, anything, physical, but I wasn’t buying it.

Then, in 1994, I was diagnosed with MS.

I was 34 years old, I had 3 young children (ages 8, 6 and 4) and I was in graduate school, working on my master’s degree in Computer Science. To top it off, at just about the same time, my father-in-law had a severe stroke resulting in a move for him into a nursing home, so the entire family was focused on dealing with that change.

At the beginning, I concentrated on not letting MS get in the way of anything else: “Oh, yes, I have MS, but look! Over there! A butterfly!”

And the early years of MS can be very deceptive—between attacks you may feel fine much of the time, which can lead to all sorts of mind games about whether you really have the disease or not. When I was having symptoms, I lied about it a lot: “I twisted my ankle,” or “I fell down the stairs.” The few times I tried to talk to anyone else about it were confusing and frustrating; I was all over the map about how I felt about it, and I’m sure I telegraphed my bewilderment to everyone else.

When I was diagnosed, the prevailing medical wisdom was that exertion was bad for people with MS.

There’s some basis in fact for this—people with MS, even if they are asymptomatic, generally fatigue more quickly than people without MS. For many people with MS, fatigue is a primary and very real symptom. Many people with MS are very sensitive to small rises in core body temperature; increased body temperature can cause an alarming (although temporary) increase in symptoms. My doctor at the time told me to rest as much as possible, and as a dedicated couch potato, I had no trouble following that advice.

I think it’s different for newly diagnosed MS patients now. When I was diagnosed, there were no disease modifying drugs (DMDs) in common use. Today neurologists try to get all patients started on treatment right away, and most of the current DMDs are injected. It’s hard to forget that you have a chronic neurological illness when you’re injecting yourself every day (or every other day, or every week). That’s got its drawbacks, too, of course.

Deciding to change

After several years of “resting as much as possible” I was even more deconditioned than I had been before.

My weight had already ballooned with each pregnancy, and now I was well into “obese” territory. I can’t tell you whether my physical deterioration was due to MS, overweight, or lack of exercise, but I can’t believe that being overweight and sedentary helped.

And I was deteriorating, by fits and starts. Just after Christmas one year I was standing in the kitchen, and I turned to stir something on the stove, and I just slid to the floor. My husband and son had to pick me up and carry me to bed, and I couldn’t get up by myself for a couple of weeks. And I thought, “Someday someone is going to have to lift me in and out of bed every day, and weighing over 200 pounds isn’t going to make that any easier.”

So I lost weight. (Wow, doesn’t that sound easy?) It took two years, several nutritionists, and logging every bite I put in my mouth to lose 45 pounds. No exercise. But — with 20% of my body weight gone, I could walk around a block with a cane instead of crutches. My legs didn’t swell up by noon every day. Was it because I lost weight, or because my MS was remitting? Does it matter?

My MS progression didn’t stop, though. I was already using a wheelchair at work, and within the next couple of years I was using it almost full time. Using a wheelchair, even when I could still walk short distances, conserved my energy to do other things besides get from point A to point B.

About six years ago I bought a handcycle, which is an arm-powered tricycle with wheels. I didn’t have any training, or anyone to talk to—I just rode the handcycle a little further each time, when I could, and did the same in my wheelchair. I discovered that I was proud to push further today than I had pushed last week.

Now, even though I still can’t walk, I think of myself as an athlete, which is something I never thought I would be. I’m proud of my abilities, and I want to push to be able to do more.

Learning what I need

4676572768_e529b05ebaThere’s really very little information in the way of scientific or clinical studies on the effects of exercise on people with MS. I decided to not worry about that, and go with how I felt.

When I started lifting weights, I would go home and go to bed for the rest of the day. It was months before I could both lift weights and do something else the same day (like get up for lunch). I decided that that was ok—that it was going to take me longer to adjust to lifting than it took able-bodied people, and I would just go with that.

Time and energy were both huge barriers, and I didn’t start working out effectively until I stopped working full time (I work three days a week). Even now, I don’t see how I could have done what I’m doing had I still been working full time; I just don’t have enough energy for both, thanks to MS. So switching to part time work means that I’m prioritizing my body, my health and my strength over money and the satisfaction I get from working. Not everyone can even afford to do that.

On a practical level, people with disabling chronic illnesses may need all kinds of support they may not have in order for exercise to be practical—mobility equipment, accessibility of facilities, transportation options, the acceptance and understanding of family and friends.

I wish I understood whatever switch flipped in my head to move me from all the reasons I believed I couldn’t work out to where I am now, but I don’t.

My activity now

Now, I lift weights at a city gym with a trainer. When we started, my trainer didn’t particularly know anything about MS, but he’s willing to learn, and (luckily for me) he seems to have an innate understanding of how far I should push myself. He’s good at recognizing, even before I do, when I need to scale back or take it easy. He’s creative about adapting exercises to what I can do.

I use free weights almost exclusively. I don’t know how much of a badass I am at weights – I can bench press 70 pounds 20 times. I love lifting weights, hate to miss a session, and really like having muscles I can see :-).

I handcycle. I want to be able to tour, with able-bodied cyclists (i.e., my husband and friends), but the hard reality is that I’m never going to be able to go as fast as even the slow cyclists. Mentally, that’s difficult for me to accept.

I race. This is my first season wheelchair racing, and I really enjoy it. I need to get more mileage and more hills in, and enter more races. How badass am I? Well, out of 15 wheelchair racers in my first (and so far only) 10K, I came in last. But I was really pleased with my time.

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I swim. I started swimming last fall, and it’s one of the few sports where I actually can go as fast as (some) able-bodied people.

Participating in adaptive sports is interesting. There are so few of us, and our abilities and disabilities are so different, that it’s hard to figure out where you stand, badass-ness-wise. If you’re a 45 year old woman running 10Ks, you can find thousands of other people to compare yourself with. If you’re a 50 year old woman with MS doing 10Ks in a racing chair, actual competitors are few and far between.

But this same phenomenon works the other way, too — if you’re a 42 year old cyclist, you’re unlikely to find yourself in the same race (much less the same heat) as Lance Armstrong. But I’ve raced on the same track with Paralympic gold medalists (which is really daunting, by the way – talk about being dropped in a heartbeat!).

Really the only way to approach it (and stay sane) is to recognize that you’re competing with yourself, with your own previous performance.

I want to get better at racing and handcycling, and enter more races and triathlons.

Advice to others

What advice would I give to other folks learning to manage a chronic illness or disability?

Accept the fact that you may not be able to do whatever it is you want to do the same way you would have done it if you weren’t disabled, or if you didn’t have a chronic illness.

Once you’ve got the acceptance part down (and you’ll probably have to do that over and over again), find another way to do it!

Find the other people in your situation who are doing the things you want to do and learn from them.

The most pervasive myth was the one I bought into for so many years, that people with MS can’t (or shouldn’t) exercise. The dumbest things I heard, in fact, were the things I was telling myself—that there’s no way to do this, or that it’s unacceptable to compromise in order to do it. I’m still wrestling with the myth of independence and the belief that I should be able to do all this stuff without any assistance from others.

Once I started exercising, I experienced nothing but support and encouragement from the able-bodied (and otherwise) athletes around me. Sometimes this support can veer dangerously close to the “you’re so inspiring” trope, but even then, people’s hearts are in the right place.

I’m having a good time and I feel like a new person. Your website has helped validate my decisions to do this stuff.

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Responses

  1. Kimberly says:

    August 2nd, 2010at 1:16 am(#)

    What a great story. Thanks to you and Katja for sharing it. What a brave woman.

  2. Neil Sligar says:

    August 2nd, 2010at 3:00 am(#)

    Katja
    If you should get time to read my occasional diary observations to Krista, you’ll accept how supportive of you I feel. Maybe a better way to express myself is that, although we’ll never meet, we run in the same relay side.
    Yes, Katja. People tell us what’s good for us and what not to do. They tell us to “take it easy” and “lift only light weights.”
    Well, they can all get stuffed.

    Often I arrive home from the gym, drive the car into the garage, and fall asleep behind the wheel. Other times, I make it to my bed, fall on it without first showering, then sleep until morning.
    But my effort is as strenuous as anyone else’s effort. Like you, I compete with myself.

    We seem to share a closely similar personality.

    Go girl! This Aussie bloke will encourage you all the way.

    Written spontaneously without edit
    All best wishes
    Shaky Neil

  3. Melanie says:

    August 2nd, 2010at 7:19 am(#)

    Katja, as always, you rock SO hard!

  4. martha says:

    August 2nd, 2010at 8:55 am(#)

    Thank you so much for this, Katja.

    I was diagnosed with MS about 9 years ago, and the feelings and experiences you write about feel to me as if they could have come from my own life. I can’t tell you how good it feels to hear from another woman with MS who struggled and decided to fight back.

    For those of us with physical disabilities, exercise is invaluable. Besides the mental and physical benefits it grants to everyone, being able to exercise is proof that our bodies can do something besides fail. I need that proof so much sometimes, and weightlifting gives it to me, every day.

    Katja (and you too, Neil), thanks for being a badass. I’ll be thinking of y’all tonight when I’m hitting the free weights with everything I got.

    xoxox

  5. Katja says:

    August 3rd, 2010at 1:48 pm(#)

    Neil – I’ve read all of your diary observations to Krista; that’s what got me to write to her myself in the first place. Thank you for your support and encouragement – they mean a lot to me!

    Kimberly, Melanie (hi, Mel!) – thank you so much.

    Martha – hooray for both of us! You go, girl.

  6. Louise says:

    August 9th, 2010at 7:37 pm(#)

    You are such an inspiration and a hero in my book. I admire your determination and your success at doing what you want to do.

    My daughter-in-law is a paralyzed from the waist down due to overdose of radiation for Lymphoma a few years ago. She works out on a special bike machine at home and trains on a paved walking trail. She wants to train for a 10K and asked my advice because I am both a marathon and ultra-marathon runner. I don’t know how to advise her the right way to train in a wheelchair. I wonder if there is a site that addresses someone in her situation. How much to train, how far, etc. before the race.

    Any help you can give me would be so appreciated. I think doing something competitive to keep her focused on exercise is important. She is also a mother of 3 under age 10.

    Thanks and keep up your good work, I wish you sincere success in whatever you do.

  7. Katja says:

    August 10th, 2010at 8:54 am(#)

    Louise, please have your daughter in law contact me – my contact info is at katjastokley.tel. Depending on where she lives, there may be an adaptive sports organization that can help out. Otherwise (or in addition) I may be able to put her in touch with other wheelchair racers. I’d love to talk to her.

  8. Jodi Traver says:

    May 2nd, 2012at 8:32 pm(#)

    I really needed this tonight!! Thank you for rescuing me from my self-pity!!


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