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

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.”

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.


This column originally appeared at Multiple Sclerosis News Today.

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