A Good MS Problem to Have: What to Do When I Feel Great?

Mike Knight avatar

by Mike Knight |

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I knew it was going to be one of those days as soon as I opened my eyes.

I woke in some sort of half-start, my eyelids popping abruptly open as I looked up at the ceiling.

Something seemed weird.

For starters, I wasn’t on the sofa. My sleep has been sketchy for some time, and I often migrate through the night from our bed to the spare bed, to the sofa, and sometimes back — a bleary night watchman on the lookout for some sleep.

I did a quick system check before I got out of bed.

Tingling, burning feet? No.

Stiff, wooden hips? No.

Medication-induced grogginess? Nope.

Zombie-like right leg, foot, and hand? Yes.

OK, three out of four wasn’t bad.

I rolled across the bed, dragging my left leg into position so that I could swing my right leg over and onto the floor. Most mornings, that process takes way more effort than it should, and I’m never quite certain if the right leg is going to be stable once my right foot touches the ground.

But it was a surprisingly smooth transaction. I bounced out of bed. OK, it was more like I lurched onto my feet and then dragged myself to the bathroom. But still. I felt more rested than normal. And I definitely felt better than normal.

By that point, I knew it was going to be a good day. The question was, how would I spend it?

In the past, I greeted this kind of day like a puppy let off its leash in the park. I’d try doing everything and anything, pushing myself as hard as I possibly could. Most of my days are some combination of managing symptoms and knitting the non-MS part of life around them. Once every other week or so, I wake up feeling like I’ve been beaten with a brick-stuffed bag.

I’ve learned — or I am trying to, anyway — that “good days” are a different type of currency than they used to be and that I need to be smart about how I spend it.

I think there are two schools of thought regarding how I invest that currency. One school is “use it or lose it.” The other is “save it for later.”

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In the “use it or lose it” gambit, I go ahead and do everything and anything, even if I pay for it later. The theory is that I never know when — or even IF — a day like this will return. Better to use the good days now because they will soon be gone. And, as a fellow MSer told me, “If you could guarantee me that I wouldn’t feel awful later anyway, I’d take it easy on myself. But you can’t guarantee that. So, I do what I want.”

The “save it for later” approach urges that I be careful and (warning: tired sports cliché ahead) “let the game come to me.” I think this means I should have a plan and stick to it. I should be mindful of my reduced capacity. Perhaps if I don’t overdo things solely just because I can, I might have the energy or capacity to do other more meaningful or rewarding activities later.

On that good day, I decided to try a blend of the two, combining an ambitious and pragmatic to-do list with an eye on assessing each item and deciding how much of a priority each really was, and how valuable the outcome really was to me, my wife, or both of us.

Nothing I did that day was especially remarkable other than the pace was manageable and I was thoughtful about what I was doing and why. The plan seemed to work out well enough, but I’m still not sure how much of a role my approach to it really played in the outcome.

Sometimes a good day is just that. Twenty-four hours where nothing too bad or unmanageable or overwhelming happens. For whatever reason, everything is in alignment and more or less working in unison, and I feel commensurate to the day.

The truth is, in many ways those days may be as good as life gets for any of us, MS or not. And that’s fine. The trick is to get it — and enjoy it— while the getting is good.

***

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 Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Michelle lalonde avatar

Michelle lalonde

Been hiding in my apartment all summer because of the heat I have ms it totally decks my plans I don't risk it I know what will happen legs will get heavy blurry vision fatigue alot worse it's hell I cancelled all plans with friends and family they don't understand?

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LAURIE avatar

LAURIE

I haven't had a good day in a long time, but I still remember what they feel like.

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Mike Knight avatar

Mike Knight

Mine are becoming rare enough now that they've become "remarkable" enough to want to document them when they do happen. But at least they do come every so often.

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Mare avatar

Mare

Aww. I can imagine how you must feel. I sincerely empathize with all of you. I don’t have a diagnosis yet, but I felt as though I was having a good day today and wanted to know if that happens when you have ms. I’m happy it does.

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Noelle avatar

Noelle

Oh gosh this is me. Feeling a bit physically "ugh" is my standard state. Something always hurts, or tingles, or feels tired and jelly-like (even my brain lol). Those days I just ping out of bed full of beans and raring to go feel so foreign that I am almost scared to take advantage - primarily because I know that if I do... I am likely to crash either tomorrow or within the next 2-3 days. The more I do when I feel good, the harder I crash.

Does anyone else also get that feeling like when you feel good you "forget" you were ever sick? I manage to somehow convince myself that it must've all been in my head, even if that's my only good day in three months.

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