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)


A special freedom can be found in finding an MSer friend

I have a new friend who has multiple sclerosis. And she’s awesome.

I’m so glad.

Let me rephrase that. I am sorry my new friend has MS. I wish with all my heart she didn’t. But she does. She’s awesome anyway. In fact, she is even awesomer (I know that’s not a real word.) because she has MS and doesn’t let it sideline her.

MS can isolate us. It’s easy to hunker down and basically become hermits when the MS MonSter attacks us. We don’t feel good. We’re exhausted. We’re dizzy and queasy and tingly and uncomfortable in our own bodies. Stuff hurts. So it’s hard to get up and get out into the world when MS is at its worst.

But we do it anyway. And often we find blessings when we’re out and about.

Like my new friend.

She’s having a really tough time right now with MS. Her legs buckle beneath her without warning. She cannot feel one of her feet. She’s struggling with vertigo and nerve pain. And the summer heat is making all those things worse.

But she’s still smiling.

Immediately after meeting one another, while pursuing a mutual hobby with friends, we began “talking MS.” Our friends clearly couldn’t follow much of the conversation, as we veered into all sorts of MS-related strangeness.

  • “Do you feel cold when everyone else is hot, and hot when everyone else is cold?”
  • “Are you doing shots?”
  • “What happens when you stand up or turn around too fast?”
  • “How do you stay in the MRI for an hour or two?”
  • “Can you work out at the gym one day and have to stay in bed the next?”
  • “Did you do the spinal tap?”
  • “Do you get dizzy, if you lay flat on your back?”
  • “Have you ever lost your eyesight for a few weeks or months?”

We could have gone on for hours. And we both felt heard and understood and affirmed for the first time in a long while. Because another MSer gets it.

Public domain photo

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MS makes me clumsy sometimes.

Some days I wake up and want to be a dragon-slayer. I climb out of bed with great ambitions, hoping to tackle a long list of tasks. I want to work out and run a bunch of miles. I’d love to fill my calendar with all sorts of stimulating and enjoyable activities, especially with people I’ve been wanting to see for a while.

Basically, I aim to put multiple sclerosis on the back burner – as if that were actually possible. Sometimes we can sort of do that for a while, if we’re between exacerbations.

I should have known better today.

This past weekend, I ran a half marathon. Yes, that’s 13.1 miles. And I pushed the pace a bit. So I might have expected to feel pretty spent (and out of so-called “spoons”) for a couple of days.

That’s the staccato rhythm of MS, as I live it:  Feeling good, feeling crummy, feeling good, and so on.

I lounged around yesterday, for the most part. I finished some sedentary projects, but didn’t exert myself much physically. That was a given for the day after a big race.

Today I was raring to go.

I hit the gym for a midday break and cranked out a 5K on the elliptical machine, followed by two miles of track running and weight circuits. Midway through those, I bumped into one of the weight machines, with the metal handle smacking me squarely in the middle of my back.

“Ouch!” It’s not like I don’t already have MS demyelination in that neighborhood. And it’ll definitely leave a mark.

I yelped and grimaced and gasped. Then I kept going with my workout routine.

Eventually, I climbed into my car and reached for my seat belt.

“Yow!” I bent an entire fingernail back, catching it between the car seat and the center console.

Not exactly nimble.

It is certainly shaping up to be an MS-clumsy day. I probably should have seen this coming, as soon as my toes went numb during the first mile on the elliptical.

I almost want to wrap myself up (head to toe) in bubble wrap till this bout passes. And I am evaluating all of today’s remaining calendar commitments to determine which are worth the risks my current clumsiness can bring.

Adapted by this user from public domain photo

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You have MS? I know someone who has that.

Picture this, if you can. You summon the gumption to tell someone that you have multiple sclerosis. You wonder how that person will respond. But before you even finish revealing your MS secret, you get this:

“You have MS? I know someone who has that.”

Immediately, that person launches into a Quadrasonic and Technicolor description of how their MSer is way worse off than you are. Or that person might begin a diatribe about how their MSer is doing much better than you are.

“I know someone who has MS. He’s been in a wheelchair for 10 years.”
“I know someone who has MS. She was elected mayor of her city.”
“I know someone who has MS. He became a drug addict.”
“I know someone who has MS. She got divorced and lost her house.”
“I know someone who has MS. He is training for the Olympics.”
“I know someone who has MS. She is in a nursing home.”
“I know someone who has MS. He couldn’t get insurance, and it ruined him.”
“I knew someone who has MS. He died from it.”1

Um, none of these are exactly helpful. Why do people feel the need to surpass your sharing with a more extreme story? 

 The focus here is on MS, but these concerns transfer easily to other medical conditions.

Is it one-upsmanship or empathy?

I suppose there could be multiple reasons why someone would hijack your personal revelation about MS and take the conversation into a sideline situation.

Often, it seems people don’t really know how to react, when they learn you have a chronic, potentially disabling, and so-far incurable medical condition that causes your own body to betray itself. Perhaps they mean to be compassionate and caring, but they may feel a little awkward about how to do it. So they spill stories of family, friends, friends-of-friends, or whomever who happened to have MS.

People sometimes believe they demonstrate empathy and understanding, if they share a somewhat related story. They seem to think you will be comforted by hearing that someone somewhere faces (or faced) something even remotely close to what you face.

On the other hand, they might simply be overconfident conversationalists, who are only comfortable when they steer conversations into their own areas of familiarity (real or feigned). If they can come up with anecdotes that loosely relate to your initial share, then they might be pleased to assume you will think they are clued-in. We all know people who want to be experts on everything, don’t we?

Maybe it’s just about someone’s need to be heard. Plenty of people are uncomfortable with lapses in conversation. So, before you even finish your sentence and take a breath, they plunge in with their proverbial two cents. It’s as if leaving a little air-time is just too scary, especially when a sensitive subject is in the air.

What’s the most helpful response people can have, when you disclose that you have MS?

Certainly, that’s an individual thing. And how an MSer deals with the subject can depend largely on personal temperament, how long it’s been since the initial diagnosis, how he or she is coping with the struggles of having MS, what symptoms (and how many symptoms) are flaring, and how he or she feels at the moment.

Would you rather be allowed to elaborate further before people respond? Would you welcome questions to help you get your own story out? Would you prefer listeners simply nodded and urged you to continue? Or would you be encouraged to hear the dramatic follow-up stories people are prone to share?

Oh, and how do you feel when people shower you with financial, fitness, life skills, medical, nutritional, political, time management, or other advice after you share such a personal issue? (Yeah. Didn't think so. Me neither.)

1 People don’t generally die from MS, although they may succumb to complications of living with MS. Statistically, the life expectancy for MSers is not significantly different (estimated at approximately 6-7 years less) than that of the general population. MS tends to impact quality of life much more than length of life.

MS Conversation –
adapted by this user from public domain photo

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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