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 fear. 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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Image/s: Adapted from public domain image.

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Got MS? Should you get the COVID-19 vaccine?

Multiple sclerosis warriors are wrestling with this sticky question, as pharmaceutical giants feverishly roll out their own versions of coronavirus vaccines. For many, this is an answer to prayer. But for MSers, the whole COVID-19 issue may be stealing our sleep.

The answer is that there is no easy answer.

I’m not playing click-bait or bait-and-switch here. It’s the reality.

MS is different for everyone who has it. And that colors the answer about the vaccine.

Each of us needs to make his or her own inquiries about the vaccine.

At this moment, it seems specific testing has not been done with MS patients and COVID-19 vaccinations. That makes our decision more difficult. It does appear a group of MS experts are examining the possibilities, so we may learn more about this eventually.

Here are the questions I have asked, in my personal search for answers about the accepting a coronavirus vaccine. Frustratingly, there are at least two sides to every answer.

What kind of MS do I have?

Life is very different for those with the more progressive forms of MS than it is for those of use currently living with relapse-remitting MS (RRMS). So is the COVID-19 threat.

Based on my type of MS, how should I proceed?

Those with progressive types of MS may be categorized as high-risk and boosted ahead in the line to receive COVID-19 vaccinations. The coronavirus can be extra dangerous for those already immunocompromised and physically challenged in various ways by MS. On the other hand, their personal medical conditions (and MS medications) may increase their risk of MS complications arising in response to the vaccine.

Those of us with RRMS tend to have stretches of time (of unpredictable duration) where some or most of our symptoms seem to abate. Of course, the last thing we want to do is awaken the sleeping giant. COVID-19 can do exactly that. Can the vaccine to that too?

Am I taking medications that may compromise my immune system?

Many of the disease-modifying therapies commonly prescribed for MS are aimed directly at the immune system. That may forestall some MS flare-ups, but it can also leave a person extra vulnerable to infection. And that includes the coronavirus. For that reason, a physician might direct an MS patient to have the COVID-19 vaccine.

At the same time, lots of experts recommend MSers refrain from this vaccine (and perhaps also flu shots) because those shots are intended to cause the body to produce antibodies. That means rousing the immune system.

The issue is really a double-barreled shotgun for anyone with MS.

Which would be worse, catching COVID-19 or reacting to the vaccine?

It’s a crap shoot for sure. The simplest response sounds like a pat answer, but it rings true:

Check with your own MS doctor.

Sorry, that’s the best we can do.

Which COVID-19 vaccine will I be offered?

It’s too early to tell, at least around here. Currently, two coronavirus vaccines are in play, with more potentially entering the arena soon. Each may come with its own set of potential side effects and risks. We may or may not have the opportunity to pick which shot we receive, as shipments seem to target various organizations and facilities.

We kind of have to watch and wait … and pay attention.

As for me, I am generally leaning towards receiving the COVID-19 vaccine.

I took a flu shot for the first time in a decade last fall. And I had minimal adverse reactions. I did feel a little funky for a couple days, but I have (so far) avoided the flu. My hopes are high that I will respond similarly to the COVID-19 vaccine.

My opinion about the COVID-19 vaccine may change before I am eligible for it.

We are likely to learn a lot more in the coming months, so I’ll be reevaluating my position on an ongoing basis. My personal characteristics place me pretty far down the list in vaccine priority.

I refuse to pass judgment on anyone who does or does not choose to have the coronavirus vaccine, although I do look forward to the day when the pandemic lifts.

On the up-side, we MSers are pretty good about enduring injections.

We definitely take this in stride. I cannot tell you how many people I have heard complaining about having to get a COVID-19 vaccine, simply because they dread shots.

Heck, we could do it ourselves!

Related items:

Image/s: Adapted from public domain image.

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You are invited to join the Kicking MS to the Curb page on Facebook and the Making the Most of MS board on Pinterest.

Monday

With MS, a hot flash may not be a hot flash at all.

I turned into a hottie yesterday, right in the middle of the center aisle of a most proper, button-ed down church, where I was a guest. The formal service had ended, and I was visiting with a few folks before strolling to the door.

Then it happened. My face started to sweat. My hair matted to my forehead. I started to feel weak and fumbly (Is that even a word?), while the all-too-familiar vertigo tried to knock me off my feet.

As the multiple sclerosis MonSter roared with delight at my misery, I did my darndest to focus on the sweet lady speaking to me. I’m sorry to admit I can’t recall most of what she said.

Whew!

After a few moments, I excused myself and made my way to the exit for some fresh air. Soon, I recovered. I felt the delicious chill of relief.

MS can make one a hottie, but not in the way most people think.

It’s not sultry or sexy. It’s just steamy and sweaty. And shaky.

The first time this happened to me, I was pretty unsettled. I didn’t understand it. So it seemed scary. Eventually, I learned that this is a common predicament for people with MS.

Overheating comes easily to the MSer. And it has nothing to do with the weather or the temperature in the building.

The personal meteorological attack can happen fast. One minute the MSer seems perfectly fine. But all of a sudden, her forehead is beading up. His neck is sweating. She’s tugging at the collar of her shirt. He’s shrugging out of his jacket. It’s almost a panicky thing.

Then it’s over. And the now-clammy MSer is reaching for a coat or a blanket.

Weird hot and cold shifts are not unusual with MS.

MSers can run hot and cold without warning.

It’s not overeating. It’s not a thyroid thing. It’s not a blood sugar drop. It’s not overexertion. It’s not premenstrual syndrome or menopause. It’s not a panic attack. It’s not even a heart attack, although it can surely feel like one when it hits.

It’s as if MS messes with a person’s internal thermostat. Cold isn’t always cold, and hot isn’t always hot. The signals are confused. The wires are crossed (or more accurately, demyelinated).

The demyelination that marks MS can cause disruption to nerve signals, essentially confounding the MSer’s perception of hot and cold. We can be overheated or chilled when there seems no logical reason for feeling that way.

Hot diggety!

This crazy hot-cold shifting happens to me a lot!

I know what hot flashes are. I lived through that entire life season. This is something else.

It’s called a paroxysm. And it’s real.

What’s a paroxysm? It’s a sudden attack that increases a disease’s intensity. Usually, MS paroxysmal symptoms appear intermittently (without rhythm or regularity). But they can be unnerving, embarrassing, and uncomfortable.

The good news is that most paroxysms don’t last long.

Image/s:

Vintage image - public domain

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