Multiple sclerosis, Nick, Struggles

Me 3, MS 56

Me and MS have a little game we like to play. I call it Catch Me If You Can, Sucka!

The idea is simple: I go about my life as if nothing has changed. Mind over matter, I’m not my disease, and all.

I go shopping. I run errands. I go to work. I work some more. I shop some more. Do a date night with my husband. I clean house. I’m feeling good. I’m strutting like John Travolta at the beginning of Saturday Night Fever (although with a better soundtrack in my head.) I even have the audacity to start a project.

And just when I thought I was in a groove – WHAM!

MS gives me a not-so gentle reminder.

“You can’t do that,” it taunts like a schoolyard bully who just found my secret hiding spot.

Sad thing is, it’s right. I did all of those things this past week and am paying big-time for it now. Just try and peel me off of the couch — I think we have merged into one organism now that I’ve been sprawled out on it for so long.

I’ve known since Day 1 that I would have to make some changes. I’ve mostly resisted, much to my own detriment.

Why is it so hard to admit weakness?

Because the crash comes regardless, so I might as well prepare.

In another vein, I’m tired of bitching and moaning. Or at least I’m tired of giving the impression that all I do with my life is bitch and moan. So just to prove to myself that I am more than just this MS thing, I plan on posting updates on various projects. Right now Nick and I are in serious purge mode, but we are slowing beginning to see floor in our “storage” rooms. (Hey, it’s tough living in a 1952 house with 2011 stuff!) But we (OK, I) have big plans that involve painting and furniture rearranging and all sorts of glorious tasks that I will start and Nick will finish.

Thankfully, I’m over my toile phase. But now I like this:

An now comes the part where I convince Nick that he likes it, too.

6 thoughts on “Me 3, MS 56”

  1. I just hit the “find tags” button on WP and you were the first one to pop up — just in case you thought I was stalking! Adjusting my life schedule was toughest for me – still is – but I’m more accepting of it, I guess. I TRY to pace, but it’s so damn hard to stop living life when you feel good. Only now I know the crash is coming and I just try to plan for that too. I like the paper!

  2. Here’s the thing. If I lived my life according only to what seems possible in my down moments, ugh, how boring and limited. I’d rather live like all the possibilities arrayed in front of me are fully available. Then if I’m hit by a 2 x 4, well, I’ll be hit by a 2 x 4 and live with the consequences. But, in the meantime, see, I’ve had this other life which I lived and enjoyed to the max. I might not have had that if I had put a governor on my speed pedal to keep it within the range of what’s possible only during the slow moments instead of the fast ones.

  3. I know exactly what you mean. I tend to overdo it and my body always reminds me! I have to say that it has gotten better for me recently. The first year to year and a half were terrible. Now I’m in a bit of a groove and know how much I can do w/o hitting the wall. Good luck!

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