Kicking MS to the Curb steps out of the box of multiple sclerosis with determination and humor. The MS journey brings challenges and concerns, stumbles and successes, triumphs and trouncings. We celebrate races run and battles won. And we stumble, reel and rise to try again.
Throughout, the orange thread traces our dogged determination to continue placing one foot in front of the other for as long as possible - until we win, until healing comes, or until the medical miracle is found.
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)
Multiple sclerosis warriors know the drill. We understand
that this thing is still incurable, although we hold onto hope that a cure is
coming, just around the bend. We have read the research, explaining how MS
basically means our bodies are betraying us. Our immune systems like to go into
overdrive, attacking us without just cause.
Toss in a real infection, and the sleeping giant that is the
immune system rises with a vengeance. Then we can be in real trouble. When we catch a cold, the flu, or another illness, we
sort of become sitting ducks for full-blown MS exacerbations.
A slight bout with sickness just might toss any of us into
MS distress. On the other hand, stress also aggravates MS. That means worrying
about germs can be a problem too.
So what do we do about handshakes? (Read: Health
and etiquette: Should handshakes be handed off?) How about handling
shopping carts at the grocery store? Do we recoil at the idea of touching elevator
buttons, sink faucets, doorknobs, stair railings, or light-switches? (Don’t get
me started about airplane seats, arm rests, and tray tables.)
Maybe we shudder to think about pressing our fingertips on
the control panels of the treadmill, stationary bicycle, or rowing machine at
the gym (if we are still fortunate enough to be able to work out).
Personally, I try not to freak out about germs, but I am
surely conscious of the possibilities of infection. I wash my hands frequently.
I carry a tub of handy cleaning wipes in my car and tuck smaller pouches of
them in my gym bag and my handbag. I also keep little tubes of antibacterial
hand sanitizer around.
And I pray a lot. Honestly, sometimes I wonder if I pray more
about food safety than provisional gratitude, when we say grace before eating. I
want to work on that balance, but clearly both prayers are important.
Pixabay public domain photo.
What about mixing with sick people?
I think it’s important for folks to understand that the MSer
(and anyone else with an autoimmune issue) is not acting anti-socially when
canceling a get-together or declining an invitation. If we telephone or send
cards, instead of visiting, when a friend or loved one is hospitalized, it
doesn’t mean we care any less.
And, if we show up, we’re not being snobby or stand-offish,
if we stand back from the hugging or give you a friendly nod in place of a
handshake, especially if you are coughing or sneezing or complaining about
We really just cannot afford to be laid up for days or weeks
with an MS relapse after catching whatever you have. We want to be friendly. Most
of us honestly desire to reach out. But we have learned (usually the hard way)
that we have to guard our health.
Because with MS, our own bodies really are out to get us, especially
when we’re under the weather.
This week, for example, I am wrestling with MS-related
balance issues, nearly constant vertigo, and intermittent sudden-onset fatigue
that knocks me flat several times a day. I don’t have stomach flu or a raging
head cold. So far, the flu-ishness is just a matter of stuffy head, all-over
achiness, and several county-clearing sneezes each day. But the harbinger is
Something’s a-coming. The MS MonSter is not on the porch yet.
But something about this whole deal rings a bell.
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).
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
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
Pain-free moments are
Days when our balance and muscle obedience and vision and
other faculties perform satisfactorily bring us joy and motivation to get up
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.