Understanding multiple sclerosis’ ‘demotivational’ flash points

The seemingly little things that MS causes drive this columnist nuts

Benjamin Hofmeister avatar

by Benjamin Hofmeister |

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I’ve warned you in previous columns that you might have to endure a rambling story or two from my military past. It’s just that there are so many lessons from the experience that pertain to my multiple sclerosis (MS).

It was supposed to rain later that evening, so we wouldn’t be parachuting into the training exercise. “Don’t worry,” the platoon sergeant told us, “we’ll get trucks to drive us to the drop zone, and we’ll start the patrol as if we’d jumped in. The planes could probably beat the weather in, but the parachutes might get wet waiting to be picked up, and nobody wants that.”

It occurred to me — and not for the first or last time — that I didn’t particularly want to get wet, either, but nobody else seemed to care. Some people just aren’t sympathetic to perfectly reasonable complaints, and I seemed to be surrounded by them.

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There’s no point in playing the blame game after the disease is diagnosed

Sure enough, it started raining about an hour into the exercise. At a halt, I turned to the squad leader, who’d taken a knee near me and looked like he needed cheering up. I leaned in closer and cheerfully whispered one of his own motivational refrains: “If it ain’t raining, we ain’t training!”

He stared at me for a few seconds, and although it was dark, I could see his eyes narrowing behind his night vision goggles. I don’t recall what his exact reply was, other than it included a couple of crude anatomical terms and called into question the legitimacy of my birth and my worth as a human being. The rain had obviously found his “demotivation” point.

What is a ‘demotivation’ point?

For young U.S. Army Rangers in general, a common demotivation spot is an area at the base of the spine about the size of a quarter. When the first drop of cold water rolls down between the shoulder blades and hits that spot, soldiers know they’re truly wet.

As we continued walking in the downpour, I occasionally heard a quiet gasp, followed by a whimper, as someone’s spirits were dampened (pun absolutely intended). Almost three decades later, I wonder what the demotivation spot for multiple sclerosis is. Rather, I should say spots. If you’re like me, you probably have more than one, and they likely vary.

I’m not referring to the point of giving up. I mean those spots that, when figuratively soaked, take your motivation away. One thing about my primary progressive multiple sclerosis is that it’s consistently inconsistent. Each MS experience is different. What demotivates me may not demotivate you. What bruised my spirits yesterday may not today.

It always seems to be the little things that bother me. I can’t walk, drive a car, or shower independently, but dropping my fork three times while trying to stab an elusive last bite is what breaks me. Also: not having the hand strength or dexterity to push the button on my electric toothbrush; eye fatigue and double vision when I want to finish the last pages of a book; fumbling fingers that refuse to turn the pages.

These are a few of my demotivating spots from the past week, and I have no doubt that next week’s will be different. Like a drop of water hitting the last dry spot on the small of my back all those years ago, these things make me feel completely soaked and miserable.

MS makes even the smallest things seem big. And I believe that a lot of the demotivation I’ve described comes from thinking these things are too small to affect us. Hint: They’re not.

What are some of your triggers and solutions? Feel free to share in the comments below. It’ll be like passing around a warm, dry towel.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Kris avatar

Kris

Ben,

Thank you so much for your weekly column ! I'm a fellow special forces operator so I can relate to all your references. My wife has PPMS and we've been battling together for the last 4 years with it. Anyways, I love your "consistently inconsistent" comment. That is our life now ! Please keep your unvarnished truths coming, I look forward to getting your column every week! Thank You and Sevare Vitas my friend.

-Kris

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Servare vitas? Is that a reference to my medic past, or are you a fed? 😆

If it's the second one, could you stick your head in next door and tell them to hurry up with my form 4?

Stay strong brother!

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DIANA P avatar

DIANA P

mine is "i just want to reach the chair THEN I'll sit and rest for a couple of hours BUT i must take ONE MORE STEP !! oh and make a cup of tea THEN I'll rest. It NEVER works out that way. I never get a cup of tea and normally end up uncomfortably on the floor resting :(

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks Diana! You nailed it. The key words are "If", "just", and "then".

"If" I can "just".... "then" I'll.....

Maybe it’s our "justs" that are the weak links.

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Julie Farkas avatar

Julie Farkas

That Last Elusive Bite
My demotivation points used to be the articles from people who found wisdom, personal growth, gifts, etc. from their illnesses. I never felt that way. Not once. Then I found an article written by Dan Airely, a psychologist, who had suffered disfiguring facial burns while in high school. He admitted he had never found anything good about all the pain he had suffered and the burden of having to go through life with severe facial scars. That set me free. No more trying to find the good in not being a better child, a better wife, a better mother, a better employee, and everything else that the burden of MS has added to my life. So, I have bad days and good days just like everyone else. And I've never found anything profound about not being able to grab that Last Elusive Bite, but it is a profound description about always being so close to the whole experience of life because there is always some MS issue that keeps us from that Elusive Last Bite.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks Julie for reminding me that I'm not obligated to be grateful that it’s not worse. That I'm not obligated to find the good or the silver lining. My life is pretty good. I have a lot to be grateful for, but MS isn’t one of them.

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Judy avatar

Judy

I so relate to what you have written. Not being able to switch off the electric toothbrush especially! My inconsistent bladder is the usual cause of my meltdowns. This ties in often with feet that won't move to allow me to transfer without damaging an ankle. Other times both are fine!

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Hi Judy. I keep telling myself, "it's just a toothbrush. Nothing to be frustrated about.".

Then another voice chimes in. "It's just a toothbrush! I could teach a monkey to do this!!".

That voice isn't helpful at all and I hate that it comes from me.

I'm trying out a hands free toothbrush. It's not really a substitute, but it's better than not brushing when my hands don't want to cooperate.

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Mira Shea avatar

Mira Shea

Thank you for giving a name to the weird, wearing daily challenges of PPMS. I expend too much effort trying to shield them from view of others when what I really need to do is ask for assistance once in a while. But I am very fortunate to still be walking, driving, etc. So thanks for sharing your "demotivation" triggers.
Onward!
Mira

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks Mira! Asking for assistance (or not asking) is my downfall. My pride tells me not to bother anyone with something so little and trivial. The problem is, nothing is little and trivial with MS and it demotivates me to no end.

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Pat Kimura avatar

Pat Kimura

My breaking point...when I get more mascara on my nose than on my eyelashes! :)

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thankfully that's not one of mine 😅

Thanks Pat!

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Charles Dick avatar

Charles Dick

I find that with MS there is a thing I call "motivational dissonance". This may or may not be related to the demotivational flashpoints. I want do do a thing, or at least I want to want to do a thing, but I just can't muster the resolve to do the thing. This is not me feeling emotionally down, just a problem with getting my "inner gas pedal" to engage.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks Charles! I like the analogy of a stuck gas pedal. Don't forget the feeling of shifting without a clutch. 😕

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Sharon Howell avatar

Sharon Howell

I need to remember "demotivation." Sometimes I know what my point was, but there are times like now that I don't know. I fell a couple of weeks ago, but I've gotten mostly over that, except for a couple of bruises. I can use my walker (rollator) again; being stuck in a wheelchair for two weeks was driving me nuts. But I'm still unmotivated to do anything--like getting out of bed, or fixing supper (grab something from the freezer and stick it in the microwave), or even go to bed (it's now 2:15 am). I just don't ever feel like moving. Maybe it's because my left leg won't cooperate; it wants to go left when I want to stand still or walk straight ahead. I don't want knee surgery, but that's what the doctor says is next. I guess that is my problem; that's what I'm worrying about. Thanks for reading through my rant, but at least I figured out my problem.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

I think what demotivates me the most is that I don't feel completely in charge of this ship anymore. Legs would move, fingers grasp and release when I said so. Now it feels like someone else grabs the wheel at the most inconvenient times. Oh and it's someone who doesn't like me apparently.

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