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)


Feet? Feet? Where are my feet?

Living with relapse-remitting multiple sclerosis means walking a strange path. Often, we may seem to cover miles with reasonable ease, taking the MS life in stride. But at other times, usually without warning, the most curious neurological symptoms can bring us to our knees.

Daily, we walk a veritable tightrope between normalcy and numbness, movement and misery, spryness and spasticity, energy and exhaustion, vigor and vertigo, wherewithal and weariness, power and pain.

If you are an MSer (or if you know and love one), then you might understand.

For most of my life, I have jumped into all sorts of experiences with both feet.

Maybe that’s just how I’m wired. And I kind of think it’s hereditary, because I come from a family of ready-set-goers. I’m not one to drag my feet, except when MS foot-drop kicks in. Or when the MS MonSter somehow steps on my toes and makes them go numb.

Then it’s as if my feet have somehow slipped away.

Sure, I know they are there. I can see them. I can touch them. But I cannot feel them. Or they actually hurt. Or they don’t obey what I ask them to do.

MS is a crazy thing. Our own bodies betray us in the weirdest ways sometimes. And that’s no walk in the park.

It’s OK. I hope to be back on my feet again tomorrow.

Adapted by Kicking MS to the Curb
from public domain artwork

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Overdo leads to overdue.

Multiple sclerosis warriors know firsthand. We really do. We’ve been there again and again. But lots of us still fall into this trap. OK, repeat after me:

Overdo leads to overdue.
(And that leads to overdone.)

Yes, it’s true (even if this long-time career editor just broke a couple of grammatical errors to get the point across).

When we feel pretty good, we tend to make the most of it. We do and do and do. And we keep on doing until the MS MonSter rears up and swipes at us with his ugly claws. By then, we’re already nearly spent, because of all that doing.

Our “Do-be-do-be-do” has done got up and gone.

That makes us easy prey.

I’m there today. Right now. A couple of weeks of doing and overdoing are pushing into peril. On the up-side, I’ve knocked several items off my to-do list. I’ve enjoyed lots of intriguing and enjoyable activities. I’ve met my personal fitness goals for several days in a row. And I’ve juggled more than the usual amount of stress and emotional overload.

Guess I sort of earned this setback.

Tomorrow, maybe I’ll be back on my feet. But for today, I’m sending more than a few calls directly to voice mail. I’m tabling a couple of not-quite-due deadlines. The overachiever hat will have to sit on the shelf for a bit.

I think every relapse-remitting MSer knows exactly what I’m talking about. It’s a classic condition. When we feel good (or less terrible), we usually have more energy and less pain. We get up and go. We eat what we want. We accomplish amazing amounts of activity (at least by MSer standards). We stay up later than usual.

And we wonder if this is how everyone else feels all the time.

It’s almost a high to not feel low.

And maybe, just for a short spell, we almost forget what it feels like to battle MS with both hands and both feet and everything we’ve got. Until the MonSter rails on us and reminds us.

Yup. Overdo leads to overdue. And that leads to overdone. But sometimes it’s sort of worth it.

Word art generated by this user.

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MS has made me more body-conscious.

I was never really in-tune with my body – at least, not before multiple sclerosis knocked my off my feet. For decades, I hardly paid attention to my overall health, energy levels, and apparent absence of pain.

OK, if I was sick for a while, like with a flu episode, I was aware of the symptoms I endured during that time. If I was injured, like when I broke a leg skiing as a kid, I was fully conscious of how much it hurt – until it didn’t anymore.

When hurts or hiccups, numbness or nausea, tinges or tingles went away, I simply went on with my life. I sort of forgot they had happened.

Then I was diagnosed with MS.

Let me just get this off my chest.

Until I was 50 and found out I had MS, I basically just played life by ear. But once I was diagnosed, I was all-ears, when it came to the subject of MS. At least, after I had cried my heart out over the whole deal. I knew I was in over my head.

I had to pay attention to my own body more than I ever had done.

No, I didn’t want to become a hypochondriac, boring myself and others with incessant organ recitals and physical complaints. On the other hand, I needed to become more cognizant of constant and intermittent symptoms, MS patterns (if you can even call them that), and potential triggers.

Here’s an example. Heat is a well-known trigger of MS symptoms. When the weather is hot, when I am stuck in a crowded spot, or when I am working out, I have had to be more clued-in to my own core temperature. I don’t walk around with a thermometer, but I have learned to estimate when it is approaching a dangerous level. If I can find a way to cool myself off in time, I can sometimes beat the curve and minimize some of the ill effects. But not always.

Migraines are another example. These horrendous headaches are a hallmark of life with MS for many people. And certain foods can predispose us to blaring migraines. When I can avoid these, it can make an enormous difference. I’ve even learned to recognize the early symptoms of migraine, as they set in. Often, I can tell while I am still eating something that contains a trigger (such as MSG, aspartame, or even chocolate). If I stop promptly and take migraine meds, I may thwart part of the attack.

Maybe that sounds like a no-brainer, but it wasn’t for me.

Pre-MS, I had grown pretty accustomed to operating on autopilot, from a health standpoint. Essentially, I lived by a simple standard: “If it ain’t broke, don’t fret it.”

Post-MS, that changed. In fact, I began to recall weird health episodes and troubling symptoms that had come and gone over the years and to connect the dots between those dark days and MS.

It baffles me to consider how many years I lived without paying any attention to strange sensations (or lacks of sensation) that I experienced in the past. Maybe I would have found out I had MS a lot sooner.

Frankly, I’m not sure if that would have changed the picture much. But it might have helped me to understand and live better amid such strange and unpleasant episodes.

And I wonder how many others simply stroll through life without cluing in to their own symptoms. How many times does a person sit funny (or sleep in a strange position) and find that a foot or a hand has gone numb and begins feeling all prickly (like pins and needles)? When normal sensations return, does that person ignore or forget what happened?

With MS, that’s pretty much a daily thing, no matter how we sleep or sit. So we learn to pay attention. We take note of it. Then we get up and fight anyway.

Face Reflected in a Mirror by Julian Alden Weir 1896

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