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)


You and your stupid M.S.!

Multiple sclerosis is stupid. It’s frustrating and aggravating and irritating and inconvenient – especially for the person who actually has it.

OK, maybe living with an MSer brings some added challenges.

We can be energetic and active and fully engaged and productive at times – and pretty much spent at others.

We get it.

The unpredictability of MS might be difficult for others to understand.

We may need others to pitch in occasionally, especially on our tougher days. And we are certainly grateful for those who are willing to pick up the slack at such times. 

On our better days, we hope to return the favor.

But if I had a nickel for every time I heard this lament, I’d be … well, wealthy.

“You and your stupid M.S.!”

C’mon, that’s just mean.

Like anyone with MS, I agree that it is a stupid disease. But it’s not our fault.

And we are truly sorry if our chronic medical condition rains on anyone’s proverbial parade, whether that happens often or hardly ever.

Does an MS warrior really deserve such an attack?

Here’s a little secret: MS is no picnic for us, either.

No one has to handle us with kid gloves.

Most MSers are not afraid to talk about multiple sclerosis or to try to find ways to cope more fully with this MaliciouS MonSter. Many of us would like nothing more than to carry our own weight in life – and more.

But if we’re not carping constantly about our own disease, then do onlookers really have license to do so?

Ask me tomorrow – when I might feel better. No, wait. I’ll probably be too busy playing chore and workload catchup to answer.

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Tuning in sometimes clears the clutter for an MSer

Surplus stimulation can be startling, spellbinding, or simply shattering for anyone with multiple sclerosis. Loud, competing noises are often a particular problem to an MSer.

Even during a season of remission – as for a person with relapse-remitting multiple sclerosis (RRMS) – the clutter of cacophony can be confusing.

Living with MS in a busy world sometimes feels like:

  • managing too many open computer windows,
  • trying to connect to more websites (at one time) than the current internet connection is able to manage,
  • listening to lots of complex conversations running simultaneously,
  •  or watching multiple televisions (at full volume) at once.

It can be annoying, confusing, disorienting, frustrating, and perplexing.

Loud and dissonant noises, in particular, can cause MS symptoms to erupt and blow up without warning.

In such situations, lots of MSers tune out … by tuning in.

We slip on headphones (or earbuds) and listen to rhythmic, soothing, relaxing music. Maybe we don’t listen to anything at all – just the sweet sound of silence.

Maybe mild MuSic does soothe the savage beast … or at least, the MS MonSter.

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MSers sometimes gotta laugh at ourselves

The MS MonSter isn’t funny. Not at all. But sometimes our own antics can crack us up – in more ways than one.

OK, maybe that’s not funny, either. Dropping and breaking things, or falling and breaking ourselves are anything but comical.

And if anyone else laughs first at our neurologically-induced clumsiness, the whole army of MSers might band together to teach that tacky and heartless hooligan a lesson.

But when we do it ourselves, it can be downright hilarious.

I cannot count the number of times I’ve had a slew of dropsies, as items have slipped right out of my hands without warning. 

Or the many moments when I’ve found myself flat on the floor, suddenly staring at sky. 

How about those unpredicted encounters with doors or walls or furniture or inanimate objects, either in the dark or in plain daylight?

More than once, I wondered what a police officer on night duty might think, if he asked me to walk in a straight line and found that (stone cold sober) I might miss the mark.

Don’t even get me started about falling upstairs. That’s a real trip.

Hey, I have a doctor’s note for that.

Score three points against the MonSter.

Laughing at others may be cruel. But poking fun at ourselves just might make us feel better.

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Barefoot, pregnant and MS?

Hey, MSers. How many of you are women? OK, how many of you ladies were diagnosed as expectant, new, or young mothers?

The Mayo Clinic says women are twice as likely as men to have multiple sclerosis. The National MS Society suggests it may be two to three times more prevalent among women than men. Other medical sources place the female-to-male ratio closer to 4:1.

Statistically, most MSers tend to be diagnosed between the ages of 20 and 50. In fact, many childbearing women discover they have multiple sclerosis during or after pregnancy.

Doesn’t sound like a picnic, huh?

It’s not like medical experts are saying pregnancy causes MS. But what timing.

An adoptive mother, I was diagnosed with MS a bit later in life, but the MRIs showed older lesions. That explains a lot about some difficult physical symptoms and seemingly inexplicable health seasons I endured during my kids’ early years.

At the time, doctors pointed to unknown injuries, food poisoning, miscellaneous infections, eyestrain, fatigue, stress, and other random possibilities.

Those theories never panned out, but the issues resolved, so life went on.

Certainly, I’ve known ladies who developed clearly diagnosed MS in their 20s and 30s, while they were having and raising their babies.

It’s like the stork drops off an infant … along with a whopping episode of optic neuritis, a tingling limb or two, and a touch of vertigo.

Betcha didn’t register for MS at Babies ‘R Us, Macy’s, or Target. Nope. None of us did.

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