May 04, 2023
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Photography by Valentina Barreto/Stocksy United
Having multiple sclerosis means my abilities change over time and from day to day. Resistance bands and a stationary bike enable me to exercise on good days, but I find a way to move no matter what.
When you’ve been diagnosed with a disease like multiple sclerosis (MS), it’s important to understand the role that exercise and physical activity can play in managing it. That isn’t always easy, though, when symptoms like fatigue, heat intolerance, and difficulty moving are frequent.
That’s why my fitness routine has evolved, as my MS symptoms have changed. While I’m not quite as fit as I once was, I continue to adapt my routine to make some level of exercise part of my life.
Researchers have determined that regular exercise can help with symptoms like fatigue, mobility problems, and even cognitive problems, and can also help people with MS take some control and improve their quality of life.
The benefits of getting some sort of physical activity are so important that the National MS Society has even developed new exercise recommendations for people with MS, at all levels of ability.
When I think back to the time when I was diagnosed, one of the things that made it all seem so unbelievable to me was that I was probably in the best shape of my life.
I was a freshman in college and played ice hockey for the school. Along with that, I spent a ton of time in the school’s weight room. When I began having trouble using my legs, I really thought it was because I was simply exercising too much and needed more recovery time between workouts and hockey games. I was shocked to learn that an illness was the cause. How could I be so healthy yet suddenly so sick?
During my first decade with the disease, I exhibited the typical early features of relapsing-remitting MS. I would go long stretches of time where I was OK for the most part. I’d have an exacerbation, which would sideline me for a while — from a couple of weeks to a couple of months — but I would then get back to normal.
OK, I wasn’t completely normal. I couldn’t play hockey at the level I had been because I was also experiencing issues with my balance and struggled a lot with my vision and fatigue, particularly when I got too warm.
How could I be so healthy yet suddenly so sick?
So, while I couldn’t do everything I’d been doing pre-diagnosis, I was still very active and fit (between relapses, anyway). I even ran a marathon during that first decade with the disease.
After that first decade or so with MS, I began to not recover as completely after relapses. The damage done during each exacerbation started to add up. Symptoms became more frequent. One day I left work with the beginnings of a relapse and never returned.
That was a little more than a decade ago, and I am still considered disabled today. I struggle with nerve pain, weakness, and numbness in my extremities, plus cognitive problems, heat intolerance, fatigue, and a bunch of other symptoms. While I have pain most of the time, my other symptoms come and go with no real consistency. Not only have those symptoms curtailed my ability to work, but they’ve altered how I approach fitness as well.
As you may have guessed, I’m no longer running marathons or putting up a ton of plates in the weight room. I do try to work with the abilities I have, though. I rarely drive now, so I exercise at home instead of at a gym.
I’ve replaced free weights with resistance bands, so I don’t have to worry about dropping anything. Over the years, I’ve cycled on a stationary bike, so I don’t have to be concerned about falling off a moving bike. When I have good days, I try to walk on a treadmill that I’ve positioned next to a window with an air conditioner (to help with my heat intolerance) and a small mattress on the other side (so that I have something I can fall onto if needed).
My days of having the same level of ability each day are gone, so I have to work with what I have when I have it, and do my best to not get discouraged.
Living with MS means that we need to think outside the box. Maybe I can’t walk on the treadmill today, but instead, I can make a couple more trips through the house or around the yard. Perhaps I can’t quite use my resistance bands today, but I can empty and load the dishwasher, which can still be a type of activity. It doesn’t have to be a regimented exercise to be a valuable physical activity.
I once had a teacher say to me, “Anything worth doing is worth doing poorly,” and I think that really fits when it comes to activity and MS. Some sort of exercise or activity is always better than none.
This is super important for me because of how inconsistent my symptoms can be. If I feel bad and can’t walk as far as I want that day, I have to always fight the urge to do nothing. My days of having the same level of ability each day are gone, so I have to work with what I have when I have it and do my best not to get discouraged.
That can really be hard for someone like me, who was once a very competitive and athletic person. I do my best to do something active, even if it’s just raising my arms or stretching from a seated position. I try to get some part of my body moving, no matter how difficult. I think it’s important to remember that the small things count!
My fitness level and ability to work out have changed a lot over the years. While my abilities have diminished, my sense of pride in what I can do is greater. A 20-minute walk on the treadmill sometimes feels like a much bigger accomplishment than marathons I’ve run. It can be easy to get a little down by that, but instead, I do my best to rejoice and savor the achievement.
Your ability to work out may change over the years, but that doesn’t make it any less rewarding; it makes it more so.
Medically reviewed on May 04, 2023
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