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)


MS is like a carnival thrill ride without the thrill.

Oh, baby. Here we go again. Here come the whirls, the spins, the ups and downs, and the twists and turns. I don’t remember buying a ticket for this ride.

It’s not exactly the Ferris Wheel.

Multiple sclerosis warriors know exactly what I’m talking about. We’re the ones who don’t even get in line for the rides at the county fair. We’ve already had more than enough dizziness, sudden drops, and uphill climbs. We don’t need an amusement park attraction to give us those.

Adapted by this user from public domain photo
I might have seen this latest episode coming. It’s just that I sort of stop paying attention when my MS symptoms subside a bit. I jump in with both feet and exert extra efforts each day. I run more miles. I blast through countless projects. I show up for events I might otherwise decline. I knock errand after errand off my ever-growing list.

And I pay for it later.

The cycle is sort of like a merry-go-round gone bad. The floor wobbles. The horses bounce up and down without rhythm. And the whole thing picks up speed and slows suddenly without warning.

Adapted by this user from public domain photo

This is no kids’ stuff.

Today it hit. Again.

I stopped at the stables with highest ambitions of riding my horse better and longer than ever. I pulled on muck boots and trudged out to the paddock to fetch her and lead her back to the barn. I groomed and polished her. I tossed the heavy Western saddle up on her back. I bridled her. And I climbed aboard.

That’s where the MS amusement park ride went off the tracks.

The horse recognized my vulnerability today and began testing my aids. It’s as if she were saying things like:

“I don’t feel like working hard today, and I’m pretty sure you don’t either.”
 “What’s that noise outside the arena door? Something out there’s gonna eat me.”
“Do you really mean to go faster today?”
 “You want me to trot all the way into the arena corners? Ha. Make me.”
“'Whoa?' What does that word mean?”

MS vertigo is a crazy thing.

I am amazed at the adaptability any of us can have, walking around on two feet. If the vertigo doesn’t make me reel too much, I can kind of compensate. Maybe I run one hand along a wall while I walk. I might hang onto the railing on the stairs. Often, I can sort of get by, even if I feel pretty woozy that day (which is often).

Climbing aboard a horse is another story. This means adapting to unpredictable movements made by an independent creature. It’s not like riding a bicycle – or even a carousel horse. The rider’s balance (or lack of balance) influences the live animal underneath him or her. The MS dizziness can increase exponentially. And a well-trained horse is likely to follow the rider’s most subtle weight shifts.

Today, for example, I tried to sit as steadily and evenly as possible in the saddle. I didn’t think I was leaning to one side at all. But my horse veered to the right… then the left … then the … well, you get it.

Public domain photo

Sometimes a straight line is a whole lot more complex than it seems it ought to be. 

Toss in a spell of optic neuritis in one or both eyes, and the whole depth perception thing is gone like the proverbial wind. That takes away the sense of speed. (How fast is this horse going, anyway?)

That’s when the MS warrior feels a lot like an amusement park customer, stepping off a wild ride. Except the MSer can’t just step off the ride at will – or even predict when it will come to a full and complete stop.

Let’s just say my time in the saddle was a whole lot shorter than usual today. But the whirling ride in my head is still going on and on and on.

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