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 the cancellation disease.

"Sorry. I have to cancel."

Planning has always been a special pleasure for me. I love setting up special occasions and making arrangements to gather with people I appreciate. I even enjoy mapping out upcoming appointments, meetings, and highlights.

But my calendar is a mess. It’s filled with scratched-out stuff.

At least once a week, I find myself succumbing to the need to cancel something I really wanted to attend. I hate doing it. But it happens.

Nope, I’m not agoraphobic. I’m not battling an emotional disorder that makes getting out and about a scary or panicky thing. I just don’t feel well enough to go. Blame multiple sclerosis.

MS cancellations are difficult for non-MSers to understand.

Maybe that’s because MS symptom flare-ups arise suddenly and without warning. For example, I might run 10-12 miles one day and be barely able to climb out of bed another day.

Perhaps the puzzling part is the way MS can bring a mysterious variety of symptoms. The MS MonSter might strike with a migraine, whirling vertigo, foot drop, limb numbness, tremors, or overall exhaustion.

So the MSer postpones a business meeting, cancels a professional appointment, reneges on a lunch date with a friend, or bails on a volunteering commitment.

“Why, what’s wrong?” the jilted party might ask.

That sounds like a nervy question. Is it anyone’s business, as if we have to justify our own condition to someone else?

But most of us don’t even touch that subject. We have enough with MS on our nerves. And we don’t have the energy right then to invite that tricky dialogue.

Alas, we simply issue our regrets. We may even apologize, as if what we are facing is somehow our own fault. But it’s really MS. 

Often, people are miffed or offended. They might feel slighted.

I’ve been accused of not caring, failing to keep commitments, and coming up short – because I have canceled things I actually wanted to do.

But I wonder. If those who are put out by my occasional late-hour opting out faced any of my MS symptoms for an instant, would they come to understand? And would they have an inkling of how many times I do show up, even when MS makes me feel like crawling under a rock?

When MSers cancel, it isn’t that we just don’t feel like going. It’s that we don’t feel like going anywhere.

It’s not personal. It’s illness.

Photo adapted by Kicking MS to the Curb
from public domain image
Word cloud created by this user
with online generator

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