Hacking my way back against the MS MonSter

Spring allergy season and the warm-weather cold season are raging, and multiple sclerosis warriors are slugging it out against extra symptoms. Some face added frustrations, as any illness can make living with MS increasingly challenging.

For me, it started with seasonal allergies. Heck, I never even had seasonal allergies till my mid-30s. Now they are a pretty predictable harbinger of spring.

Warm winds blew, as I planted my garden and patio pots with bright spring flowers. Dust and pollen whirled (most unseen) around me, while I trotted my dog out for daily jaunts in quiet neighborhoods and woodsy trails.

Then the sneezing started. We’re not talking about a few dainty little sniffles. These were non-stop manly snorts that took my breath away and could have cleared crowded amphitheaters.

Before long, simple allergies led to head congestion, followed by sinusitis and then a full-blown sinus infection. Meanwhile, fluid began building up in my lungs, leaving me wheezing and coughing like a sick dinosaur. At night, I gasped in my bed, with a rattling rale that sounded like someone was moving heavy equipment inside my chest walls.

Breathing difficulties exacerbated the nearly ever-present MS vertigo too.

This is not exactly the spring picnic I had hoped for, I groaned to myself.

Yada. Yada. You know the drill.

MS complicates everything. In a flash, the dreaded MS hug wrapped around my torso. I couldn’t catch a breath – or a break.

Like any experienced MSer, I know we face an increased risk of contracting pneumonia. And the stark reality is clear: People don’t die of MS. But they can die of complications of MS. And the primary culprit is often pneumonia.

“Get thee to a doctor,” is the perennial refrain.

Finally, I did.

At the clinic, they diagnosed me with a sinus infection and bronchitis. They gave me a boatload of prescriptions, including antibiotics and a powerhouse antihistamine/decongestant and an inhaler.

Oh, and pretty clear instructions to slow down for a while.

Yeah, right.

Mostly, this is all helping. I get that it’s gonna take some time. I’m still overdoing it (in terms of personal exertion), nearly daily, and paying a price for that.

Like any medications, these drugs have a few side effects I don’t like. And the antibiotic pills are ginormous and hard to swallow, especially with the MS gag reflex in full attack mode.

But I am grateful to have the prescription treatments. In days gone by (like before antibiotics), basically healthy people used to die from these sorts of illnesses. Now those conditions may just lay us up for a week or so. Sure, I know it will take a little longer to come back to full speed (just because the MS MonSter lurks for times when we are compromised like this).

I’m still hacking with a chest-racking cough. I’m still sneezing non-stop. I’m still going through tissue boxes like they are going out of style. I still run out of steam far faster than usual.

But I’ll be back … once I catch my breath again!

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Yuckies - Facing MS symptoms from A to Z

Multiple sclerosis can give a person the yuckies.

It’s not just that icky metallic after-taste that comes with mid-exacerbation steroid treatments. It’s not the, um, unpleasant and potentially embarrassing personal and private problems that some MSers face. And it’s more than the queasy, woozy, bluesy feeling that goes along with the nearly ever-present vertigo of MS.

MS just feels yucky a lot of the time.

“Where does it hurt?” someone might ask. We may not have specific answers (although we may).

“Are you sick again?” another might query. “Maybe it’s the flu.” But it’s probably not influenza, allergies, food poisoning, or typhoid fever. It’s just life with MS, always running in the background.

The MS yuckies are not like depression or grief. They’re more like riding a tandem bicycle and pedaling hard, while the other person is simply sitting there like dead weight. Add a significant headwind, a light rain, a bit of midsummer humidity, three or four blaring radios (tuned to different stations), a pair of fogged-up glasses, a charley horse in one leg, a too-tight belt tucked up around the rib cage, and some stomach upset – now you’re beginning to get the picture.

And, unless the MS yuckies turn into a full-blown exacerbation, then they just feel like a reasonably difficult day with MS. Sure, some of us have days when we can keep up with fit folks. But we also have times that feel … well … yucky.

Maybe we’ll bounce back again tomorrow or the next day or next week.

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Warped: Describing multiple sclerosis from A to Z

Multiple sclerosis can take an on-course person and steer him or her right off-course. It can scar up the brain (with what neurologists call “lesions”) and cause all sorts of strange symptoms. It can creep up slowly or strike with seemingly random abandon.

It’s warped.

I mean, what could be more warped than a wicked illness that attacks the entire body’s control tower? That’s twisted. It’s strange. It’s out of whack. It’s diabolical and crooked and devious and torturous and more than a little depraved.

MS just ain’t right.

Take the MS hug, for example. (In fact, just take it away!) MSers have a sick (and yes, slightly warped) joke about how it’s not the kind of hug anyone ever wants. The first time I had this MS symptom, I honestly wondered if I was having a heart attack.

Maybe you’ve seen all those warnings that point out how women can have heart attacks without experiencing the classic cardio/chest pain symptoms men tend to have? Well, the MS hug definitely causes chest pain.

You know those super-tight webbed plastic straps they put around heavy packages to keep them sealed? Ever try slipping a scissors underneath to snip them off? Those things are snug! That’s sort of how the MS hug feels. It can take your breath away.

Imagine you had to wear an extra-wide and tighter-than-skin-tight strap like that, wrapped around your rib cage for an indefinite period of time. (Let’s say three to five days, although the MS hug can last for several months or more.) Now you’re starting to get the picture.

That’s pretty warped.

Fortunately, many MSers have this uncanny ability to become a little warped in the humor department, which helps us to cope with this dastardly disease. We learn to laugh at ourselves when we reel or tumble or stagger or stumble. We chuckle and shake it off when we toss out the wrong words in conversation, when we cannot find our car keys (or cell phone or coffee cup or whatever we set down someplace), or when we forget something we specifically stopped at the store to pick up. We make jokes about the dreaded MS hug.

We may not want others laughing at our chronic condition, but we find ways to find our own comedy in it. Hey, being a little warped sure beats moping around. Most of us have been there, and it didn’t help much.

 

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A-Z promising quotes: Choices

Many an MSer has described the more difficult moments of life with multiple sclerosis as a form of captivity. It’s hard to express how frustrated it can be to find our own bodies betraying us – as we stumble, fall, reel, or sink during an onslaught.

And the MS hug actually feels a lot like having chains or ropes or other binding strapped tightly around the torso.

A lot of this stuff happens, no matter how hard we try to manage our diet, personal energy levels, fitness, stress, levels, or other factors. MS just does its own thing.

On the other hand, we can choose how we deal with this mess. That side of things makes this quote from British author Charles Dickens (1812-1870) in A Christmas Carol somewhat appropriate.

“You are fettered, said Scrooge, trembling. “Tell me why?”

“I wear the chain I forged in life,” replied the Ghost. “I made it link by link, and yard by yard; I girded it on of my own free will, and of my own free will I wore it.”

Although MS may diminish some of our lifestyle choices (particularly in terms of activity levels and physical pursuits), we may draw encouragement and maybe some vindication by considering the choices that we will never lose – how we choose to live with the challenges we face. And that’s power even the MonSter cannot snatch.

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