Read about Kristen and Andrea’s personal experience with exercise and increasing their activity levels.
39 years old, diagnosed at 36 — Denver, Colorado | With my MS, I have significant vision challenges. I’m not as active as I’d like to be right now, but I’m continuing to walk a lot. It’s been very helpful to focus on walking and hiking routes that I’m already relatively familiar and comfortable with because going to a brand new area is really difficult. I haven’t been comfortable pushing myself outside a box, and I don’t think it’s a bad thing. For me it’s been important to recognize and accept the challenges that I’m facing and stay active in the ways that I know that I can.
If I do walk in a somewhat unfamiliar area, one thing that has helped me is to pop my ear buds in and put directions on my Google maps. Or if we go hiking, my partner Steve walks in front of me. If I notice that he takes a step to the right, I am going to do that same thing. I’m still getting out there and doing it, and I’m accepting that it’s going to look and feel different.
In recent months, I’ve noticed that I’ve been walking and hiking a little less than I had been, so now I’m looking at taking an adult ballet class. I think I just need to change things up a little bit, and get excited about something else. I enjoyed ballet when I was a kid, so it’s something I am already familiar with but it’ll also be a new way for me to stay active. And I have a friend that wants to do it with me, so that makes it even more appealing. I’m pretty confident that once I start ballet, I will want to start walking more. In my experience, that’s what happens – you start feeling better and you’re more motivated to do it.
When I stay active, I feel better. It totally makes me feel stronger, my balance is better; I do have a little bit more energy in general. I do have the other stuff, the achiness, all of that, but I definitely feel better.
My diagnosis finally gave me answers for the symptoms I had been experiencing. Over the years, I’d had balance issues, numbness in my hands, and fatigue, and finally the severe vision impairment. With my diagnosis, I finally had answers and I had a way to address it.
MS is not who I am, instead it’s part of what I do. I truly believe that MS has pushed me to have a better life. Everyone’s experience is unique, and I do know that it’s an ongoing process for me and different things will be difficult at different times. It’s been helpful for me to be somewhat okay with the difficulties and challenges when they come up, and then getting after it and staying active when I can.
38 years old, diagnosed at 28 — Monument, Colorado | One day, I realized I had a few minutes of “standing around time” while I waited for the kettle to boil. So instead of just waiting and watching, I decided to see how many squats I could do before it was ready. In the quiet of my kitchen, I was able to complete 25 squats before my morning tea was ready.
The next day, with my legs aching, I started plotting as to how my workout would not end with squats at teatime. Before I knew it, I was doing sumo squats while I brushed my teeth, planks while I played on the floor with my kids, side lunges while I cooked dinner, leg lifts while I talked to friends, and any other body weight exercises that I could do when I was just standing around. And yes, there are times I get some interesting glances from strangers. And more often, friends have a few things to say about it. But I know at the end of the day, that I have done three minutes of planks without really trying, and that is a pretty great workout, without going to a gym.
When you have MS, everything is an adaptation in one form or another. I soon learned that I had to listen to my body more than when I was a “healthy” person. The new normal of how quickly my body can, and will, turn on me, scared the hell out of me at first. I thought that all of this would happen with absolutely no warning. Once I slowed down, and really started listening to my body, I realized that there were some subtle signs that my body was sending me that I really needed to listen to. One of my BIG warning signs, when I am working out, is that my big left toe starts to go numb. If the toe starts to tingle, I now know that I have about 10 to15 minutes before the leg will follow. I am being warned that I have given it a try, and that is great for today. I choose to walk away seeing all that I was able to do verses all that I could not.
Nine years ago, I gained 90 pounds due to MS issues, and I had to really work to just get to a place for me to actually get pregnant. When it finally happened, and I got pregnant with my son, I was in passable shape, fitness wise. But the pregnancy was difficult, and everyone was surprised that I was able to carry him to term. My first post-partum MRI found a dozen new lesions, with four of them being active at the time.
My husband and I took these results, and considered the possibility that he might be our only. We spent the next two years, enjoying our new little family, and working on getting me in the best shape possible. Our daughter just happened, like all great things that fate brings you. And though she gave me all the trials and tribulations of a “normal” pregnancy, I was the healthiest I had been in ages, MS-wise.
My post-partum MRI with her, showed, for the first time in years, no progression of the disease. Neither of my children would be here, if I had not made some very serious changes, over a very long period of time.
On good days, I find myself able to do things I have not been able to do in years. On bad days, it makes it a little easier to try to be my best me.
My favorite piece of advice, to anyone, is that you should always have a theme song. At least one, though I highly recommend more. I have dozens of theme songs for dozens of situations. I have a one for the days when I am really pissed that I have MS; and a one for the days that I think I am so lucky to have MS. I have a theme song for the days I cannot sleep, and for the days I never want to leave my bed. My theme song of the day gets me moving, even if I only have the energy to mouth along to the words. Because I know that is more than I was moving before.
Throughout this issue, we’re sharing personal stories of real people who’ve made exercise a part of their lives, including several participants in the Rocky Mountain MS Center’s MS Wellness Pilot Program. With generous support from the Jimmie Heuga Foundation, the Wellness Pilot Program was conducted in 2017-18 and focused on making wellness a part of overall MS treatment. Stay tuned to RMMSC communications for more information on what’s next with the MS Wellness Program.