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)


Is MS gonna make me a germaphobe?

Eek! It’s a germ!

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.

Image created by this user on text generator.

Germaphobia is a genuine concern for the MSer.

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 illness.

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 here.

Something’s a-coming. The MS MonSter is not on the porch yet. But something about this whole deal rings a bell.

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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.

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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