Living with M.S.

"Living with M.S. is sort of like training for a long race. The harder you try, and the longer you keep at it, the stronger you become.
Eventually, looking back, you may be amazed at the power you possessed, even when you had no idea it was within your reach." (Linda Ann Nickerson)


Horsing around with MS: Slaying dragons or simply draggin'?

Multiple sclerosis is often likened to a wild beast, familiarly tagged as the MS MonSter. This title seems somehow fitting for a chronic medical condition that sporadically challenges those it has afflicted.

Sometimes we succumb to the MonSter’s onslaught, at least for a spell. Often, it smacks us to the ground, singeing us with its fiery breath before raging off to gloat for a while.

What are some of the dragon’s favorite ploys?

Any experienced MSer can recognize the fiery flashes of symptom flare-ups. We know when our energy fails, vision blurs, limbs turn numb, balance vanishes, muscles spasm, pain increases, or basic bodily functions go awry. That much is obvious to us.

Some of his ambushes are more intangible. How often does the MS MonSter stomp into our daily lives to load us up with anxiety, confusion, disappointment, discouragement, dread, fear, frustration, or other weapons that leave us shaken, frozen, or unsteady?

Look for the victories!

Occasionally we win those battles. Once in a while, we find the strength to stand our ground, collect our wits, hold up our shields, and attack the dragon head-on with our proverbial swords.

Celebrating such wins is not aimed at diminishing the valiant efforts of those who fight the MS MonSter bravely, but find themselves charred and beaten and crumpled by his senseless violence. All too often, no matter how hard we slug it out against the MS dragon, we collapse in the dust and wonder how that happened. It sure wasn’t a lack of determination. We’ve got that in spades.

We’ve all been there.

At the same time, when any of us are able to score a few points against this dreaded beast, it can raise our spirits to trumpet the good news. Maybe it even offers hope to the rest of us, when we hear of such triumphs.

When one MSer kicks the dragon to the curb, even for a while, we can all take heart. The war isn’t over yet.

Right now, I’m facing off against the dragon in a multi-year battle that has largely sidelined me from horseback riding, which has been a long-time favorite pursuit. He’s lobbed vertigo, limb numbness, muscle spasms, foot tingles, crippling exhaustion, distractibility, exaggerated startle reflex, and loss of balance in my path. He’s added a whopping portion of dread of possibly repeating a devastating (and nearly life-threatening) accident that occurred a few years ago. 

More than a few MSers have benefited from horseback riding therapy. Not me.

It’s been a genuine struggle. Mostly, it’s been heartbreaking to lose the desire to saddle up and ride. I cannot count the number of times I gathered up my gumption, drove to the stables, fetched my horse from the pasture, and saddled up to ride – only to step down within moments after finding MS symptoms accentuated while mounted. (It’s one thing to stay upright on one’s own feet during a flare-up. Keeping centered atop a moving creature with a mind of his or her own is another matter altogether.) 

Sometimes I haven’t climbed aboard at all.

Honestly, I’m not sure which has been worse: riding poorly, not riding at all, or fielding all sorts of comments and criticisms from those who thought I was merely wimping out. I don’t have those crazy, young, wanna-kill-me horses anymore. I have a sensible and willing mount. It’s not about all that.

Non-MSers don’t have a clue what the dragon can do.

It’s not like the MS warrior can wave a feather (like Dumbo) and instantly take flight again. This stuff is much more real than that.

For a while, I seriously pondered stepping away from equestrian pursuits altogether. I sought other ways to regain activity and build fitness. During my too-long period of watching the horse world from the sidelines, I took up walking … then jogging … then running. I’ve joyfully (and exhaustedly) crossed the finish lines of a few half marathons and more 5K races and trail runs than I can count. I'm slow, but I go. And I refuse to stop.

Take that, dragon.

In the meantime, I have reunited with a patient and understanding equestrian trainer, who also enjoys running. She gets it. And she has worked painstakingly to comprehend the ever-changing and unpredictable ins and outs of my MS journey, which is a tall order. Without warning, our lessons may be cut sharply short, or they may stretch considerably longer, depending on my ability to hold off the MS MonSter on a given day.

Together we’ve refused to accept defeat.

Finally, things are changing! After several months of MS battles, I seem to be on an upswing. I’m feeling better. My strength is returning. And I am saddling up, every chance I get.

I know the MS MonSter is likely to launch another attack at some point. He’ll lash out with his tail and try to land me on my butt.

But not today. For now, we’re bouncing along boldly and blissfully – at last! 

At this very moment (although I know it can change), I feel like a dragon-slayer. Remind me next week, will you?
 Adapted from public domain artwork and photo

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