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)


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.

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

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Despite MS, sometimes we just have to take it to the limit

Multiple sclerosis is an energy drain, bringing crippling fatigue (often unpredictably) and heat intolerance. It also steals vision, tackles balance, renders limbs limp and leaves various body parts numb or painfully tingly. Ask anyone living with MS, and you’ll hear some of the same complaints and stories of spending time on the sidelines.

But don’t count us out just yet.

Those who shoulder MS or any other chronic illness that threatens disability understand the quandary of possessing unknown and ever-changing daily allotments of energy and wherewithal. On any given day, the MSer (or other chronic illness battler) has no idea what the current balance is in his or her energy bank.

That assumption leaves each of us with a couple of choices.

We can hunker down and conserve every last bit of vim and vigor, so as not to run out. Or we can go for broke and expend all we can, right up to the point at which we are fully depleted, even if we have to pay dearly for it afterwards.

I frequently exercise the second option. Often, this pays off.

For example, I am training to run my first full marathon. (That’s 26.2 miles, if you’re counting.)  I’ve completed several half marathons. (That’s 13.1, if you do the math.) 

By the time I toe the marathon start line, I will have been a diagnosed MSer for 10 ½ years.

That’s no boast. I am grateful for every step of mobility that I still enjoy. I know life could absolutely have turned out very differently for me, as it has for so many others living with MS.

I am fairly certain that this marathon endeavor is likely to set me back a bit, by the time it’s over. Knowing this, I have cleared my calendar as much as possible for several days afterwards. I am sure I will be spent. But I’ve gotta do it anyway.

As the Eagles sang in their 1975 hit single, “Put me on a highway, and show me a sign. And take it to the limit one more time.” 

“One and done” will be my marathon motto.

I’ll likely never sign up for a second one. But this is one dragon I want to slay, even if I have to pay for it.

Adapted 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.


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

Feel free to follow on GooglePlus and Twitter. Please visit my Amazon author page as well.
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