Saturday, July 18, 2009

Softly spinning (minus the spins)

Well, I'm pleased to report that the nasty spins-without-the-spinning was indeed a treatment reaction. It was better two days after the treatment than it was the day after, and it has been getting steadily better.

'Course, it hasn't gone away, really. It's still there. But at least today, it's managable.

I was encouraged this morning, reading another MS sufferer's blog about some of her current dark days, to be reminded that these intermittent bouts of "things are going very badly" is just part of the opportunity cost of having MS.

Now, here's a thought: We all know that, from time to time, we have fallen prey to various bugs--flu, colds, what have you. We can surmise that probably, we will again. And that part of the process of those diseases includes "bad days." Days when we're suffering. Days when we can't do insert-favorite-activity-here because we feel so crappy. And you are 100% sure that this is something you'll have to deal with again, life being what it is. But there's no cloud hanging over us, either from the experiences we've had or from the experience that we expect we might eventually have. It's just part of life. No big deal. You get over it, hang on as best you can through the "suffering" part of the experience, then move on when it's over. Like I said, no big deal.

Scene change: Now you're an MS sufferer. It's not an itinerant "bug" you've fallen afoul of, it's a permanent, uninvited guest. Now, part of this disease process involves occasional (if you're lucky, only occasional, often more frequent than you'd like) bad days. Days when you're suffering. Days when you can't do insert-favorite-activity-here because you feel so crappy. And you are 100% sure that this is something you'll have to deal with again, life being what it is. But somehow... this experience comes with a cloud.

Is it because this is something we'll never be free of? We'll never be free of cold and flu bugs, somehow that doesn't bother us... but this is different. OK, so it's different: different how? Is it because we can't really connect to others when we tell them what's going on? Everybody understands "I have a cold." But "my nervous system is at constant war with itself" isn't really resonant, the same way. (I've certainly experienced this; say "I can't do xyz, I have a cold" and you get immediate understanding, say "I can't do xyz, the MS is acting up" and somehow you're not trying hard enough, "Sorry you're feeling bad but we need you to do it anyway," or something else equally unsympathetic...)

Is it because the symptoms are both the same every time, and different every time? A cold is pretty much a cold, but an MS attack/flare-up/exacerbation/whatever you want to call it... everybody experiences it differently, everyone defines it differently. Whatever's happening may be hard to describe, but you know that it's The Disease, making its presence known.

My doctor says that he has a mantram that he uses, when people don't seem to understand that despite what they want, you need your space/rest/recovery, and you're going to take care of yourself rather than them:


Such a small word. I understand why it's hard to hear; why is it so hard to say?

1 comment:

Denver Refashionista said...

I'm glad the spins are easing up.

Thanks for linking my blog.

I too am feeling a bit better. One day at a time.