If I had a hundred dollars for each time I’ve heard staying active is the best way to preserve motor function, I’d be among the top 20 percent wealthiest people with MS. (It would be hard to out-earn Jack Osbourne and Montel Williams, but my piggy bank would at least take up an entire ballroom in Downton Abbey.)
Likewise, if I had another hundred for each time I’ve heard that rest is even more important than activity, I’d have enough Ben Franklins to buy the biggest, most tech-advanced adjustable bed known to contemporary bed-dom—and have enough left over to buy one for all of you, too. Alas, it is not to be. I missed the gravy train. I’m poor as a Monroe County muskrat, but that’s not a big deal. No learning curve there.
What I need to learn is how to balance activity and rest. Problem is, all the money in Mozambique couldn’t make me get off my tush more often. I don’t know about you, but when I’m still in a stupor an hour after getting up in the morning, you couldn’t dangle enough thousand-dollar bills in front of my face to get me out of the La-Z-Boy and onto the strider. So what that my tush is getting wider and my muscles are weakening! I can always buy larger clothes and a recliner that propels me out of the chair and into a standing position without my having to flex one centimeter of abdominal muscle. Why, with all the assistive technology available today, I can live a quality life whatever my degree of disability. But let’s say I’ve decided I want to stand up and walk around under my own steam for as long as I can. Where do I go for inspiration?
A little effort goes a long way.
Inspiration is different for everyone. An infusion of information lights my inner fire, so I find internet research very helpful. The NMSS has PDF files you can download that illustrate resistance and stretching exercises. There are also many journal articles that explain the benefits of light to moderate exercise, even if it’s only 15 minutes three times a week. I’ve printed out the PDF file. Now I have to actually read it and do the reps. Maybe tomorrow.
It’s small and compact enough to sit in my living room to one side of the television. Twice a month, I jump on it in a fit of guilt and swing away. I can feel my abs get tighter after only two 5-minute sessions on the strider. My posture instantly improves as does my upper body strength. And because my arms pull on bars that swing my legs forward and aft without taking steps, it doesn’t tire my legs or worsen the foot drop like a treadmill or stepper would.
A short walk.
Taking a short walk outside gives me lots of benefits but is also more tiring. My usual route is over uneven grassy terrain and takes only seven minutes. It’s a workout for my weak, discombobulated feet, ankles, thighs, hips and lower back. When I get back home, I feel like a marionette with the strings cut as I collapse on the recliner. But I do recover after a short while.
Afternoons for 15-30 minutes, repeat as necessary. Napping doesn’t seem to affect my ability to fall asleep at night. But my need for naps decreases or disappears all together if I get 8-10 hours of uninterrupted nighttime slumber.
Progress is its own reward—and also motivates me to keep it up. But guess what throws an Allen wrench into the works? Fatigue. The mind is willing but a rolling brain fog gathers much moss, swathing noble thoughts of physical exertion in emerald green forgetfulness. Yet I persist. One must.
Do I want a buddy?
Well, yes and no. I very much like the thought of it, imagining someone softly knocking at my door at 9 a.m. every day and asking me if I’d like to take a brief promenade around the building. I might respond with yes, what a lovely day for it, we can see if the robin’s eggs have hatched yet. Or, are you freaking kidding me? I’m so dizzy my butt missed the toilet not ten minutes ago! On second thought, that dreaded knock would probably stress me into a pseudoexacerbation, or at least a bad mood. So, no buddy–unless it’s Jeeves bringing me espresso and a bloody Mary.
Rest and sleep are two different things.
Sleep occurs at night (one hopes), which will last at least 8 hours if there is the perfect storm of cool, moving air near my face and feet, a lack of pain, spasms and stiffness, and the white noise of a fan at the foot of my bed. Easy peasy? Not yet. I might ask Jeeves to chloroform me every night around 11:30.
Rest is something I strive to interrupt in regular intervals of 30 minutes by getting out of the recliner and walking to the desktop or kitchen or bathroom. If I sit in the chair for two hours without moving, my legs will seize up like the Tin Man in a rainstorm. No magic oil can here. I’ll just stiffly fall over like a statue onto cobblestones and have to wait for the coroner to find my shattered remains.
I wish I could tell you I pulled myself together and found a plan and a pace to follow with which I’m fully compliant. Maybe someday, I think I’ve got the right ideas, it’s just that I lack discipline and that makes me feel like a failure. On the other hand, I didn’t think I could quit smoking, but I did. That was 14 months ago and I’m still smoke-free. So it’s possible that a year from now I’ll have developed a healthier, more active lifestyle, too. I do like the thought of it. You can help me with it if you’d like. Just please promise me you won’t knock on my door at 9 a.m. every morning and ask if I’m up to it.