Kicking MS to the Curb

Kicking MS to the Curb steps out of the box of multiple sclerosis with determination and humor. The MS journey brings challenges and concerns, stumbles and successes, triumphs and trouncings. We celebrate races run and battles won. And we stumble, reel and rise to try again.

Throughout, the orange thread traces our dogged determination to continue placing one foot in front of the other for as long as possible - until we win, until healing comes, or until the medical miracle is found.

Showing posts with label encouragement. Show all posts

Friday

Stop the skipping soundtrack to beat back the beast

Living with multiple sclerosis (or nearly any chronic medical condition) can feel a lot like listening to a skipping record.

Vinyl records are making a comeback, but I sure hope someone has engineered a way to make songs stop skipping. If you’re been around awhile, you may recall the frustration of hearing a song stop mid-phrase and repeat the same measure or two, again and again, until somebody got up and moved the needle forward on the record.

Why did records skip?

Usually, the culprit was dust or dirt on the surface of the vinyl record. Sometimes a scratch in the record’s groove caused it. At other times, the arm of the record player needed rebalancing, or the needle had to be replaced.

Hmm. I think there are a few lessons to be found – at least, for me. Maybe for you too! Dust and dirt are clutter. Scratching is damage. Lack of balance is a challenge as well. Maybe these factors combine to make life with MS seem like a skipping record sometimes – when the same annoying symptoms crop up again and again and again.

How can we stop the skipping soundtrack to beat back the MS beast?

Sure, we cannot eliminate an MS diagnosis and the struggles that go with it – until a cure is found. But we can equip ourselves to battle it as mightily as possible. Here are some statements of strength that I’ve found helpful. Perhaps they will inspire others, as we take on the MS MonSter in our own daily lives.

Acceptance is authoritative.

This is critical, but it’s a tough step. Coming to terms with the reality of owning up to having an as-yet incurable chronic and potentially disabling medical condition is very hard. But accepting this truth helps us to step up to the proverbial plate and slug it out each day, even with MS throws its weirdest hard balls our way.

There’s a reason people refer to MSers as warriors. Ask any of us, and you’ll hear some vivid stories.

Consider the name of this website, Kicking MS to the Curb. There are days when MS kicks me – not just to the curb, but out into the middle of traffic. It happens. But with everything I have, I want to take authority over the dreaded MonSter, retaking ownership of my own life, right in the face of strange symptoms.

Stop me, if you’ve heard this: I have MS, but MS doesn‘t have me.

Gratitude is empowering.

This is true for anyone facing down any form of difficulty. Even if our vision fails, can we spot something for which we are thankful? Gratitude changes the channel, switching our focus from our struggles to something more satisfying, even for a little while.

Little and large points of appreciation can come from unexpected places, such as:

a delicious snack that doesn’t trigger any symptoms
a flare-up that waits till after an important event
an encouraging phone call from a friend
a long-lasting symptom that finally abates
a few moments outside on a mild day
an appointment suddenly canceled, leaving newfound time for rest
a cozy reading time with a warm blanket, fresh from the dryer
an MS scan that shows no new changes

It’s all about perspective. We are boosted when we notice.

Hope is helpful.

It’s easy to fall into the cancellation rut, living with such a tiring condition. And it’s hard to commit to repeating responsibilities or plans. How do we know how we might feel on such-and-such a day? The what-ifs can be even more crippling than our actual symptoms.

Most of us find that we have to educate our friends and loved ones about MS, at least enough that they can understand when we bow out of plans (often at the last minute). But isn’t that better than not making plans at all?

A teacher I have long respected, who carried a chronically disabling condition for his entire adult life, used to offer this advice repeatedly (almost like a mantra):

Don’t skip the plans, even if you end up having to skip the event.

He knew that anticipation was worth plenty. Maybe we all need to look forward to something. So we go ahead and fill in our calendars (even if we clutter them less than we used to do), and hope for the best. Yes, we learn to balance busy and idle, and we might aim for lighter schedules. But we still make some plans.

Then we hope for good MS days, rather than bad ones.

Attitudes add up.

I only knew one grandfather, when I was growing up. Folks called him Tiger, because he was such a fighter. He wasn’t angry or contentious. He didn’t pick fights. But he fought back when life was hard. When his health failed, he fought even harder. His attitude was upbeat, even when his body felt beaten down. He enjoyed his life, despite difficulties.

That’s a lesson. Many of us haven’t fully learned that yet, but we want that spunk.

Platitudes are pointless.

Every one of these statements only rings true when we preach them to ourselves. When someone else parrots them at us, then they are mere platitudes. That feels like we’re being shut down, instead of supported. And that helps no one.

But when we learn (often the hard way) how mighty our mindsets can be, then we become much more than the medical condition with which we contend. That’s how we stop the skipping record, or maybe just stop the sound from getting under our skin. Sure, we cannot stop the symptoms, as MS stages yet another onslaught. But we grow stronger in spirit, so we can rise (even figuratively) to do as much as we can for as long as we can.

Maybe that’s all anyone can ask for. Let’s play that tune again … and again … and again.

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Wednesday

Can infirmity be a blessing?

I met a woman in a wheelchair yesterday. And she’s a miracle. Her cheerful attitude and upbeat outlook inspired me more than I knew I needed.

This lady was diagnosed with multiple sclerosis almost 50 years ago. She’s battled the beast ever since.

MS research has come a long way in the past five decades. Back then, when this dear new friend was diagnosed, doctors had very little to offer her. None of today’s disease-modifying treatments were available. Physicians could only address some of the MS symptoms, as they arose.

This sweet lady is basically bedridden. Her husband, recently retired from a lifelong career, cares for her daily needs and more. He’s a marvel.

The two of them came out to address a monthly fellowship group to which I belong. Their appearance required herculean efforts on both their parts. They said they rose at 6 am to prepare for the event. They said she almost never leaves their home.)

As they spoke, recounting their story, sheer joy fairly seeped from their pores. He said it was the greatest blessing of his life to care for his beloved wife, feeding and dressing and assisting her in every way. She sang his praises as well. Honestly, they were adorable.

After their brief presentation, I was able to slip across the room and introduce myself to her. I leaned down by her and told her I shared the same diagnosis. She looked up at me with a contagious smile and a light in her eyes. Yes, despite her physical limitations, this woman jumped at the opportunity to encourage someone else.

I thanked her for coming and said I hoped she would not be overly exhausted by the effort.

“Honey,” she answered. “I’ll be done in tomorrow, but it’s worth it.”

Seriously, I’d been feeling a little cranky that morning. I’d had a few unexpected inconveniences that cluttered my progress before the meeting. I arrived just in the nick of time, struggling a bit to show up with a chipper attitude.

Boy, was I missing something!

Then I heard this lovely couple’s story.

I do not know why MS has crippled her and left me still standing with nearly full physical faculties. I cannot explain why she is restricted to her bed and sometimes her wheelchair, while I'm out hiking and biking and participating in nearly every activity I choose.

People often tell me I’m staving off MS with all of my exercising. They claim to be astounded when I run a race or log the year’s number in annual miles. Sure, pursuing physical fitness can make us healthy in all sort of ways. But MS can still sideline anyone, seemingly randomly, no matter how much we try to fight it.

Other claim that a solid faith can keep MS at bay. I believe in faith. But I also know extremely faith-filled people (like my new friend) who have been attacked viciously by MS. And my faith seems feeble next to hers (if it’s even fair to compare). I know God is able to heal and sustain anybody. But I cannot begin to understand why some still struggle immeasurably, while others seem to face simpler challenges.

I cannot tell you why MS boxes in some people and allows others to keep on going in all sorts of physical ways.

But I can earnestly tell you that this dear lady is still going strong, even if it’s from her own bed. And I am both impressed and inspired.

That’s hope.

I don’t know if infirmity can be a blessing. But she surely is.

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Image/s: Adapted from public domain image. Word cloud generated by this user.

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Saturday

Ever have a surplus of energy with MS?

Fatigue is a hallmark of multiple sclerosis. We get that. Sudden overwhelming exhaustion affects nearly everybody who battles MS.

Yup.

But if you have MS, have you ever experienced a seemingly random day (or even a few hours) of amazingly high energy? Ever surprised yourself with everything you were able to accomplish on a certain day?

That just happened to me. And it’s not the first time.

I’m not complaining. Just puzzled.

Maybe it’s not random at all. It just feels that way.

Once in a blue moon, I get to have a day when my head doesn’t throb or spin. My vision isn’t foggy and color-dim. Nothing hurts (at least too much). And I feel like checking all sorts of things off my never-ending to-do list.

It’s only noon, and I’ve already:

baked a banana bundt cake from scratch
changed the cat litter box
cleaned out the refrigerator
cooked a full breakfast
loaded and emptied the dishwasher twice
mended a pair of trousers
polished the wood furniture
prepared, published and posted a client newsletter
refilled my bird feeders
reorganized my pantry
run a couple of laundry loads
switched out the bedsheets
taken out the trash
tidied up my craft cupboard
treated myself to a do-it-yourself facial
updated a website
walked the dogs
wrapped a couple of birthday gifts
written and mailed all my Christmas thank-you notes

… and I’m not through yet.

What a Saturday morning!

Maybe this is how the non-MS world feels all the time.

Tomorrow I’ll be tired. I’ll wonder what I was possibly thinking to go after so many projects today.

But I’ll still count it as worth the effort.

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Monday

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. I was 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.

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