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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With MS, a hot flash may not be a hot flash at all.

I turned into a hottie yesterday, right in the middle of the center aisle of a most proper, button-ed down church, where I was a guest. The formal service had ended, and I was visiting with a few folks before strolling to the door.

Then it happened. My face started to sweat. My hair matted to my forehead. I started to feel weak and fumbly (Is that even a word?), while the all-too-familiar vertigo tried to knock me off my feet.

As the multiple sclerosis MonSter roared with delight at my misery, I did my darndest to focus on the sweet lady speaking to me. I’m sorry to admit I can’t recall most of what she said.


After a few moments, I excused myself and made my way to the exit for some fresh air. Soon, I recovered. I felt the delicious chill of relief.

MS can make one a hottie, but not in the way most people think.

It’s not sultry or sexy. It’s just steamy and sweaty. And shaky.

The first time this happened to me, I was pretty unsettled. I didn’t understand it. So it seemed scary. Eventually, I learned that this is a common predicament for people with MS.

Overheating comes easily to the MSer. And it has nothing to do with the weather or the temperature in the building.

The personal meteorological attack can happen fast. One minute the MSer seems perfectly fine. But all of a sudden, her forehead is beading up. His neck is sweating. She’s tugging at the collar of her shirt. He’s shrugging out of his jacket. It’s almost a panicky thing.

Then it’s over. And the now-clammy MSer is reaching for a coat or a blanket.

Weird hot and cold shifts are not unusual with MS.

MSers can run hot and cold without warning.

It’s not overeating. It’s not a thyroid thing. It’s not a blood sugar drop. It’s not overexertion. It’s not premenstrual syndrome or menopause. It’s not a panic attack. It’s not even a heart attack, although it can surely feel like one when it hits.

It’s as if MS messes with a person’s internal thermostat. Cold isn’t always cold, and hot isn’t always hot. The signals are confused. The wires are crossed (or more accurately, demyelinated).

The demyelination that marks MS can cause disruption to nerve signals, essentially confounding the MSer’s perception of hot and cold. We can be overheated or chilled when there seems no logical reason for feeling that way.

Hot diggety!

This crazy hot-cold shifting happens to me a lot!

I know what hot flashes are. I lived through that entire life season. This is something else.

It’s called a paroxysm. And it’s real.

What’s a paroxysm? It’s a sudden attack that increases a disease’s intensity. Usually, MS paroxysmal symptoms appear intermittently (without rhythm or regularity). But they can be unnerving, embarrassing, and uncomfortable.

The good news is that most paroxysms don’t last long.
Vintage image - public domain

Feel free to follow on GooglePlus and Twitter. Please visit my Amazon author page as well.
You are invited to join the Kicking MS to the Curb page on Facebook and the Making the Most of MS board on Pinterest.
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