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Living with Multiple Sclerosis: I’ll Do What I Can While I Can

Multiple sclerosis is a sneaky bastard. It has the uncanny ability to kick you in the teeth when you’re feeling your best.

My MS (wait…is it odd that I say that like MS is a beloved family pet?) has lived up to its devious reputation. One day I feel good – almost, dare I say, great – and the next day I’m down for the count like I’ve been slugged in the gut by Muhammad Ali. This is why I’m determined to take those good days and make the most of them.

While that may sound like the slogan on a corny roadside billboard (“Welcome to Nirvana” Where good days are few and we damn sure make the most of them!”), for me it’s apropos. I’ve been telling myself not to look too far into the future of what MS may have in store for me. However, at times I believe I’m doing myself a disservice. Thinking ahead helps me plan for the eventualities that MS will throw my way. But it’s a dismal view into a peephole that I’d rather not see.

Yeah, I Can Walk

A few days ago, on a sunny but chilly Saturday morning, my friend JoAnne and I suited up and, being mindful of social distancing, walked around our neighborhood. It was something that we’ve done often in the past, but since the onslaught of Covid-19, we haven’t seen much of one another. It did my soul good to see JoAnne in the flesh and catch-up with her. She’s my confidant, she’s my walking buddy, and, above all, she’s my friend.

And so, we walked and talked. We continued to walk and talk. And then we walked and talked some more. Before we knew it, over an hour had passed. An hour. I’ve gone months without going outside and letting my legs take control and spirit me away for anything close to an hour. I did it that day for one simple reason: because I could.

Falling Down

I’m not gonna lie. I’ve fallen down a few times since being diagnosed with MS. On those occasions, my brain and legs were adamant about not playing well together. Nothing screams “MS” quite like face-planting on your front lawn in full view of your neighbors.

It hasn’t all been gloom and doom, though. I’ve had days where I felt like I could lace up my sneakers and sign up for a 5K race. I didn’t because, well, I’m not a glutton for punishment, but I felt like I could.

That leads me to learning to keep my big mouth shut.

When someone asks me how I’m feeling, and I reply with a genuine, “I’m fine” (because yeah, I really am feeling fine, unlike the “I’m fine” I say just to keep from having to recite a laundry list of whatever’s ailing me on that day), MS is lurking in the background like the boogeyman, whispering in my ear, “Soooo, you feel fine, eh?!? Not for lonnnnng!” Such a bastard.

True story: Two days after my neighborhood walking tour with JoAnne, neuropathic pain came in rolling waves throughout my entire body and sidelined me. The pain began at 5:30 in the morning and lasted throughout the day, leaving me bedridden for the better part of 24 hours. In case you couldn’t tell, that really sucked.

Doing What I Can

This brings me back to doing what I can while I can. I’m early in my MS journey and the uncertainty of the disease keeps me on my toes. But I have no way of knowing if tomorrow will be the day that my legs stop working properly. I don’t know if next week, chronic pain will drop by and overstay it’s unwelcome, much like a houseguest who comes for a week and stays for six months. And not even my trusty Magic 8-Ball can tell me if or when depression will set in.

So, for now, I do what I can, while I can. A couple of weeks ago, I danced in front of my bathroom mirror and wouldn’t have given a damn if anyone was watching. Last week, I ran up the steps in my house. Today, as the sun shined bright and the temperature hovered around 65 degrees, I went for a 40-minute walk at lunch . . . because I could. Tomorrow, I may not be able to so.

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