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)


Managing chronic illness can mean redefining goals

People living with chronic illnesses (such as arthritis, asthma, crohn’s, diabetes, epilepsy, fibromyalgia, multiple sclerosis, and more) are often the most determined folks one might ever want to meet. We fight daily battles, as our own bodies betray us in curious and uncomfortable and frustrating ways.

Many of us have streaks of stubbornness. Let me rephrase that. We tend to have firm resolves, when we set our minds to do something. And this is rather remarkable, considering the countless ways chronic illness can sideline us (often without warning).

We keep on setting goals for ourselves. We make New Year’s resolutions. We sign up for advanced degree programs, volunteer opportunities, extra projects at work, gym groups, craft classes, and special-interest pursuits. Once in a while (or maybe more than that), we have to go for Plan B.

Here’s an example.

A year ago, I registered to run a full marathon (nine months ahead of the event). This occasion actually occurred just over 10 years after I was diagnosed with multiple sclerosis. But I signed up anyway, knowing full well I could find myself in full MS flare-up when race day arrived. (Only I wasn’t. Iwas able to complete the marathon. But it doesn’t always work that way.)

Sometimes our big goals work out. But often, we have to reconsider them and rework them.

Not long ago, I offered to cater a book group gathering. It was sort of my turn anyway. So I agreed to ante up. That day, MS came at me like a beast. I had to phone a friend and ask her to pick up my refreshments from me and take them to the event. She filled right in, and it worked out. But I was sorry I couldn’t follow through that day.

It happens.

I’m all about showing up, if I’ve committed to doing something. But MS occasionally has other plans. I’ve had to pull out of programs and postpone personal projects. I’ve disappointment friends and family members, when I’ve called to cancel get-togethers at the last minute. Those who comprehend life with MS seem to understand. Others don’t.

When chronic illness deals me a mighty migraine, blinds me again in one eye, sets me spinning with vertigo, or lands me flat on my back, my goals have to change. The goal-of-the-moment might become simply making it through that day. It’s pounding through pain to finish that day’s bare essentials.

Living with chronic illness means doing the best we can with whatever life throws at us on a given day.

Bucket lists and to-do lists, be darned. We’ll try to get back to you. In the meantime, we’re doing all we can to hold it together until we get to punch out for the day (whatever that means this time).

Dragons, beware. We hope to come out swinging our swords soon. But for now, we might just hover in the cave for a while. We’re not afraid. We’re just mustering our strength again.

Public domain image

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MS makes me wanna cheer anyone struggling to exercise

The gym is sort of a microcosm of society. At least, ours is. I’ve met some of the kindest folks ever at the gym, but I’ve seen plenty of pettiness and a smattering of mean-spiritedness too. Hey, it happens.

Yesterday presented a prime example.

A bunch of us were gathering in one of the workout studios, waiting for exercise class to begin. As we chose our weights, we glanced through a bank of windows, overlooking the lap pool. The lifeguard was chatting with a resting swimmer in one corner. Another swimmer was slogging along in a center lane.

This lady swam so sluggishly that it seemed she was making her way through molasses. Seriously. But she persisted, creeping along in some semblance of the freestyle (crawl) stroke. She barely lifted her right arm out of the water. She dragged her legs along in almost a vertical position.

“Look how slow that lady is!” one onlooker exclaimed.

“Do you think she’s alright?” another asked.

We continued to watch for a few moments, as we stood and stretched a bit to prepare for our own routine. And the swimmer kept going, stroke after agonizing stroke.

“Maybe she has MS,” one of my cohorts suggested.

“Like me,” I said.

Then a familiar thought hit me like a typhoon, as it so often does.

I have no idea if that swimming lady has MS. But that might have been me.

I could be the swimmer who barely makes it to the end of each swimming lap (if I even climb into the pool). I could be the runner who stumbles across the finish line, fully spent. I could be the lady in the wheelchair, who cannot walk independently.

When I remember this, I become more mindful. I realize, once again, that I am grateful for every step I can take. I appreciate that I can even get to the gym and join a workout class. Living with multiple sclerosis, I know my days could be very different than they are.

And I salute the struggling swimmer in the pool – because she is in the pool. She’s out there getting it done, no matter how long it takes her. It doesn’t matter that her swimming is labored and painfully slow. She is faster than anyone who didn’t put on a Speedo that day.

Points for playing, girlfriend!

Remember middle school, when kids mocked those who weren’t so good in gym class?

I surely do! If a kid couldn’t hit the baseball, run a fast 50-yard dash, or shoot a goal in floor hockey, that kid instantly became joke fodder. And if someone accidentally scored a point for the opposing team, it was all over – as in all over the school.

I know. I’ve been there. I was that kid.

And I’m not laughing. I am cheering, especially for the underdogs, who underneath are the genuine champions.

Public domain image

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Hold on! Having MS, I'm thankful for ...

November is a popular month for thankfulness, as we count the days leading up to Thanksgiving. Lots of bloggers put up daily posts, pointing out things for which they are grateful. That set me to thinking.

Is it possible to be thankful for multiple sclerosis?

That’s a tall order. But I believe enumerating blessings is a healthy and worthwhile endeavor. With that in mind, here’s my alphabetical list of MS-related things for which I am thankful. Some items may seem tiny and trivial, but they matter to me.

Awareness – Before MS, I pretty much operated on auto-pilot, never having to focus much on personal health concerns or my own physical condition.

Believing – My faith insists that every battle is part of God’s purpose – even MS.

Cooler temperatures – I’m not a big fan of bitter winter weather, but I definitely appreciate the onset of autumn’s sweater-y days. I’ll even put on a parka with a smile, as long as frigid winds don’t chill us to the core. (Extreme cold sets off MS issues too.)

Dogs – I have a couple of high-energy canines who nudge me and urge me to be up and about, even on my MS-draggy days. I’m always glad I did, especially when I didn’t really feel like it. Their enthusiasm is contagious and rewarding.

Energy – MS makes my energy rise and fall. My vim and vigor varies. Knowing this, I make merry when my wherewithal is worthy of it.

Fellow MSers – I gain considerable encouragement and helpful information from others who are fighting the same MonSter as me.

Glasses – As chronology and MS dim my vision somewhat, I am grateful for my specs, which are most often perched atop my head. Now, if I could just find them …

Horses – Although I don’t always ride (like when MS vertigo attacks full force), simply being around these wonderful creatures heals my spirit in ways nothing else can.

Icepacks – This sounds simplistic, but there are days when a little chill can be a beautiful thing.

Jokes – Yikes! Please don’t fill the comments section with hokey quips, tired riddles, and painful puns. But I have to say that humor is healthy. If we can’t laugh at ourselves, how can we fight the MS MonSter? Comic relief is definitely real relief.

Knowledge – When a doctor first told me that I might have MS, it blindsided me. As I awaited the diagnosis, I began to research and read. Learning that MS is not a death sentence and what life with MS might look like gave me hope, which I carry today.

Layers – Like most MSers, I am temperature-sensitive. That means I am layering and peeling my clothes all day long.

Music – I think everybody sort of has a soundtrack for his or her life. Or maybe we ought to. I enjoy compiling playlists for all sorts of activities and settings. Playing some favorite songs brings me joy, increases my energy, and draws me out of the MS dumps.

Nutrition – I used to eat nearly anything I wanted. Cravings counted. As I’ve learned more about MS and its symptoms (including headaches, various forms of inflammation, and gut issues), I’ve also explored proper nutrition with more interest and discipline. I believe I am healthier overall as a result, and I’m grateful for that.

Occupation – I love to write, even when I’m cranking out copy to meet a deadline. It’s expression. When I write about MS, it’s also an outlet. (Thanks for reading.)

Pain-free days – Every day without an MS migraine is a big blessing. (Remind me of this on my worst headache days, would you?)

Quilts – I’m not a thimble-fingered artisan, but I have made a few cozy patchwork quilts that welcome me warmly when MS sidelines me. It’s nice to have a nest when I need it.

Recreation – OK, this kind of goes with exercise (see below). But a bit of distraction and fun can go a long way, when it comes to coping with MS … or life in general.

Stretchy clothes – Tailored clothes are awesome and stylish, but some MS days simply call for extra ease in dressing and wearing. Yes, I’m one of those moms who darts out to do errands in gym clothes (but never in PJs).

Timing – I count it as no small gift that many of my worst flare-ups have somehow peaked when I have been home, rather than out of town and in the middle of some inescapably hectic event.

Understanding – Lots of non-MSers will never comprehend what the MS life is like. Maybe that’s OK. I’m just grateful for those who are willing to come to understand why our energy waxes and wanes, why we may seem absolutely fine one day and fall to pieces the next, and why we make plans that may require last-minute rescheduling.

Victories – Living with MS can be frustrating, and it takes flexibility to face canceling when symptoms flare. But I think it’s important to celebrate the times when we can actually show up and meet goals and live life at its best.

Walking – Before MS, I assumed everyone who had it would eventually become unable to walk without assistance. Since MS, I have trained and run a full marathon. I know my own outcome could have been so very different. I am extremely thankful that I can still walk and run.

eXercise – Grateful for continuing mobility, I am pleased that I am able to keep on running and biking and hiking and horseback riding and pursuing other physical activities I like -- at least on my better days.

Youth – Most people would say I am no longer young. I’m celebrating a milestone birthday this month. But some say 40 is the new 20, 50 is the new 30, 60 is the new 40, and so on. I don’t act my age, even with MS. I don’t plan to. And I’m thankful.

Zen – I don’t practice formal meditation or follow the religions that promote “Zen.” So I’m using the term rather loosely here. But I am grateful for the de-stressing that comes with accepting MS. Once I learned to live with this chronic medical condition, I realized a sense of power, rather than defeat. Contentment brings its own sort of relief. MS has become a challenge to face, a dragon to slay, and a MonSter to kick to the curb. I’m not giving up here.

Adapted from public domain image

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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