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)

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Ever want to put on a mask and just hide from the world?

Maybe a masquerade isn’t always child’s play.

Halloween is nearly here, and masks are in vogue. Scary and silly masks fill store displays. People of all ages put them on for fun.

Masks invite us all to make believe we are someone (or something) we are not. Maybe we pretend to be spooky figures, wild beasts, or comical characters. Generally, it’s all in good fun – or so folks say.

That’s not what I mean here about putting on masks.

Psychologists like to talk about masks as emotional defense mechanisms. Perhaps people put on figurative masks to hide their feelings, store their internal secrets, or feign positivity when they don’t really mean it. Sure, mental health experts make a valid point.

But that’s not it, either. Not for the MSer.

When the MS MonSter attacks, sometimes the MS warrior may want simply to slip on a mask and go through the motions of life without having to explain or engage. Although we’ve been told countless times on our best days, “You don’t look sick,” we have days when we glance in the mirror and see death warmed over.

Our foreheads crinkle. Our brows bend downward on the sides. Our smiles droop into frowns. Our heads drop, putting even more pressure on our already aching necks and backs. Our shoulders slump. We may look a whole lot older than our years, at least for a stretch.

You get the point.

Then, if we do drag ourselves out and about, we inevitably run into all manner of colleagues, family members, friends, neighbors, or others.

“How are you?” they ask. But they don’t really want a rundown.

So we simply answer, “Fine, and you?” Then we shuffle along, wishing we’d avoided the whole interaction, so we wouldn’t have had to lie about how we really feel.

Some days, a mask is just what the doctor ordered. It’s easier to be anonymous when we’re under the weather. 

 Vintage photo / public domain

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Who wants to exercise when your head is pounding?

Headaches and multiple sclerosis often go hand in hand, so to speak. (Sure. Tell us something we don’t already know.) And, even though MS may make exercise extra challenging, experts often suggest that physical activity may alleviate certain types of headaches.

How many of us have groaned to hear doctors nag us about exercising more to ease our agonizing pounding heads?

“Thanks, Doc. I’ll get back to you on that.”

I’m not saying physicians need to pull out their prescription pads every time we have headaches. It’s pretty easy to see why adding more medicines isn’t always the answer. But maybe exercise isn’t the fix-all for all varieties of headaches, either.

When your head is throbbing, isn’t exercising just about the last thing you feel like doing?

Maybe it helps with tension headaches. Hey, working up a head of steam might burn off some stress. An all-out workout may not fit the bill, but a walk around the block, a gentle bike ride, or a few sets of chair calisthenics might do the trick.

Endorphins increase with exercise (even moderate exercise). That’s what makes runners keep coming back for more. Endorphins make us feel better, and they even help to reduce pain. Maybe that's why a little exercise actually can help with headaches caused by tension.

But what about other kinds of headaches?

Will exercise actually alleviate these?

  • brain freeze headaches (eg, ice cream headache)
  • caffeine withdrawal headaches
  • cluster headaches
  • dehydration headaches
  • dental-related headaches
  • drug rebound headaches
  • encephalitis headaches
  • fatigue headaches
  • flu headaches
  • food sensitivity headaches
  • hangover headaches
  • hormone headaches
  • hypertension headaches
  • injury-related headaches
  • meningitis headaches
  • migraine headaches
  • overexertion headaches
  • post-spinal-tap headaches
  • pregnancy headaches
  • seasonal headaches
  • sinus headaches
  • sleep apnea headaches
  • spinal headaches
  • TMJ headaches
  • tumor headaches
  • vision-related headaches
  • weekend headaches

Maybe you can think of a few additional types. Some say there are at least 150 kinds of headaches. Well, whaddya know? That’s a head-scratcher. (Sorry, had to.)

Many of these sorts of headaches can signal serious medical conditions or even health emergencies. If a sudden excruciating headache shows up, particularly an unfamiliar kind of brain pain, it’s a good idea to contact the doctor.

But for most of us (especially MSers), headaches can be all too familiar complaints.

I get it. When the worst kind of headache hits, all I really feel like doing is crawling under the covers in a dark, well-ventilated room to sleep off the attack. Exercising is the last thing on my mind then.

But, when the headache finally passes, the pain-free relief makes me want to run and dance and skip and jump for joy. Until that flurry of activity sets off another episode.

 Adapted from public domain artwork
1890 lithograph by J. Williamson

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Excuses: Ever played the MS card?

Is there an MS card that allows anyone with multiple sclerosis to duck out of unappealing tasks or events with impunity? Do you ever cite MS as an excuse, simply to get out of doing something you just plain don’t want to do?

  • “Rats. I’ll have to miss the toddler’s birthday party. I’m having an MS flare-up.”
  • “Gee, I’d be happy to help you move out of your apartment. But it’s a bad MS day for me.”
  • “You want me to babysit for your four kids for the whole weekend? Well, I certainly would, if I weren’t facing a bad MS spell.”
  • “Can you fold the laundry this time? MS is knocking me down right now.”
  • “Try the ropes course? Not with MS, I won’t.”
  • “If I didn’t have MS, I would love to chaperone the all-school field trip to the three-ring circus.”

Or have you ever pointed to MS to soften the blow, if you somehow performed below your own (or others’) expectations?

  • “My painting (or craft project, or whatever) would have turned out better, if I wasn’t battling MS symptoms today.”
  • “I would have biked (or run or swum or whatever) a whole lot faster, if MS wasn’t dragging me down just now.”
  • “What? I didn’t pick up everything on the shopping list? It’s that MS fog again.”
  •  “Oops. I dropped the ball again. Stupid MS.”
  • “I failed the audition because of MS.”
  • “There I go, tripping over my own toes again. It’s the MS.”

It’s OK. We’re among friends here. We get it.

Often, MS legitimately bears the blame for our skips and our shortcomings. Exacerbations and symptom flare-ups can set us on the proverbial back burner for a bit.

Maybe we bow out of something at the last minute. We feel terrible about canceling, but we honestly feel terrible.

Perhaps we move slower, become clumsier, shuffle along, stumble around, or forget things. MS can actually do that to us.

But sometimes … just once in a while … do we bring up MS as an alibi or an easy out?

OK, I’ve done it. (I’d bet most of us have.) Sometimes I just haven’t felt like attending or exerting. I might not be stuck in the middle of a full-scale MS relapse. But I can’t seem to muster the wherewithal to show up. Is that so wrong? Is that even unfair?

Wait a sec. Maybe that lack of energy, motivation, and oomph has something to do with MS after all. That means it might be an honest reason and not a cop-out at all.

We’re not bluffing.

Seriously, I’ve been accused of using the supposed MS card countless times by folks who have no clue what life with multiple sclerosis is all about. They’re disappointed or angry and want someone to blame, so they call foul.

  • “You sure don’t seem sick to me.”
  • “C’mon, if you really wanted to join us, you would.”
  • “Plea-ase! We really need your help. You can do this, if you mean it.”
  • “How can you be tired? You went to bed early last night.”
  • “Don’t come calling, when you need my help.”
  •  “Hey, you can always rest tomorrow instead.”
  •  “You’re just faking, aren’t you?”
  • “But it’s your turn to pitch in.”

Oh, boy. Sounds like some jokers are a few cards short of a deck, right? (Sorry, I had to go there.)

MS is not some special wild card that gives us a pass for stuff we don’t want to do.

A chronic medical condition is not a rationalization for non-participation or disappointing accomplishments. It doesn’t leapfrog us out of our less-than-stellar achievements. If you’re a card-carrying MSer (like me), you don’t need that kind of license, anyway.

Most of us try to be above-board about MS. Deal us in. We want to ante up and push our own limits - whenever we can.

You bet we do.

Still, the writing is already on the wall. We’re gonna miss gatherings. We’re gonna skip plenty of extra projects. We’re gonna go a little slower. We might even reel a bit. Some days, it’s gonna take every ace in the deck for us to get up and get through it.

And even doing all that requires us to play our cards just right. And that doesn’t include the legendary MS card – just the cards we’ve been dealt.

 Adapted from public domain artwork and 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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