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)


Life with MS: Sometimes you feel like toasting, but other times you're just toast.

Call it a see-saw, a zig-zag, or a journey of ups and downs. Living with multiple sclerosis can be any of those things. The MS MonSter rages and rests, especially for those of us who battle Relapse-Remitting MS (RRMS).

(For more information, read Reviewing the four types of multiple sclerosis.)

Honestly, sometimes I feel like toasting, but other times I’m just toast. On some days, I have enough wherewithal to accomplish a whole lot. On others, I’m almost crying “Uncle” from the get-go. 

Created by this user with public domain photos

Maybe you know the feeling.

That’s how MS is.

After nearly a decade of personal war against this chronic neurological condition, I often think I ought to be more adept at predicting the battles. But I’m not. The MS MonSter doesn’t telegraph his attacks. He simply strikes.

Sure, sometimes I overdo it, pushing my own limits on my best days. Isn’t that pretty common among MSers? We’re so thrilled to feel less-than-bad that we find extra energy. So we do more and more and more. We find ourselves asking, “Gee, is this how the rest of the world feels all the time?”

Pain-free moments are amazing!

Days when our balance and muscle obedience and vision and other faculties perform satisfactorily bring us joy and motivation to get up and go.

So we go and go and go … until we stop.

I’ve done it again.

Recently I spent a wonderful high-energy weekend with some friends. We stayed up late each night. We arose early each morning for activity-filled days. We ate snacks and desserts and extra-rich foods. We talked and laughed and sang. It was a blast.

But it took me almost a week to recover. I sacked out early for several nights in a row, after returning home.

The next weekend, I ran in a 5K. I met my current usual running pace and received a place medal in my age division.

I felt like toasting.

But the next day, I was toast. Totally spent.

After all these years with MS, I still find that a little baffling and bewildering. I routinely run farther than a 5K. But the race knocked me out. Maybe it was the winter weather we faced, including running in gusty winds. Perhaps the excitement drained my energy, although I sure enjoyed it at the time. I may have experienced an adrenaline drop when it was over. And I was probably still somewhat fatigued from the previous weekend’s festivities. (It’s all about pacing, when you live with MS.)

Clearly, the MS MonSter recognized my vulnerability to an onslaught at that time.

I was ready for jammies before darkness fell around here. That’s right. Totally toast.

But I’ll be back.

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