Saturday, September 19, 2015

Captain Fatigue vs. Me Episode VII - MS Awakens

I'm sitting on my couch watching a baseball game - Red Sox at Toronto.  The Red Sox are winning, which is nice even though the Sox are sitting in the basement of the American League Eastern Division and won't make the playoffs again.

Oh,well.  Red Sox, lately, it's

No. Wait.  They just rallied.  Now they're winning. Whoa, they're giving the lead back. Not again!  Oh, never mind.  They held on in the bottom of the ninth.  Whoa.

The above was not what this post, which I am sorely lacking in keeping, was about how you try and have a regular life, but Captain Fatigue always gets his bloviating way in his never ending attempt for bodily domination.

Like having a party.  This year my wife and I celebrated our 30th wedding anniversary and her 60th birthday, plus a noting that 5 years after the diagnosis of PPMS, I'm still here, still standing (though if no one is using that chair, could I borrow it? Thanks) still doing yard work (for maybe 20-25 minutes an hour then one rest and then.... Hey, there's a Star Trek rerun...I'll just watch a few----------------)  and writing ( though I must admit that what your eyes are moving along with here recognizing symbols for sounds which is transformed by your brain as words is all I've done this week).

We've never thrown a party and invited friends and family.  Aside from our wedding, and a small graduation party for my Master's Degree, rarely does everyone appear in the same city, not even mentioning the same room.

And it was a lovely room at a local winery.  This one:

So we provided the funds, they provided the wine and the space, and after going through three possible caterers in one afternoon, we had the place lined up, and guests invited.  The attendees included family, friends and (former) coworkers.  There begins the first line of trepidation of how the mix will go, who will talk to whom, if anyone would or will it be four groups in each corner, eating pizza on paper plates, and waiting for the polite time to leave.  My wife and I did our best to have the place decorated with balloons, Official Jackie and Tom Memorabilia, and small gifts, plus our scintillating personalities.

It would work out fine, I thought.  Or I thought I thought.  But Captain Fatigue had started his whispering crusade.  And he at the best weapon any MSer has - My Twelve Spoons.  If you're unfamiliar with it check here:

Captain: Did you take your afternoon pills?

Me: Um, yes.

Captain: I heard an "Um" in there.  You're not sure. How about the red one, the long red one?"

Me: Yep, got the Amantadine. (I hope).

Captain:  Look, kid, I've only been living in your brain for five or six years now.  You know the ropes almost as well as me, but you'll never know it all.  So for this special occasion, on account of how much dough you blew on this and the stress of putting on yourself this shindig  (Glad I could be of help, hee, hee)I'm gonna, let's see, three hour party, spoons here, there, oh yeah, crisis there, that's a bit more.  OK, this show and dance is gonna cost you around 13 spoons. And the Amantadine will kick out around 7:30 PM.

Me: 13 spoons? I only get 12 a day. Where's the other one come from?

The Captain in his spiffy naval commander uniform guffawed quietly.

Captain:  Look kid, you belong to that Disney condo thing, right? I haven't had time to check where in the brain you're hiding that info now.  Darn Re-myelination. Anyway, you know if you want to do anything special at DisneyWorld, like the fancy schmancy Grand Floridian Hotel, you gotta use your points for the year, and then borrow points from next year.  Same with Spoons.  You want to do something special? You gotta use the spoons. Your cherce, kid. Or stay home and watch the ballgame.  You can make that early morning meeting you've got.  Me, I gotta get down to your digestive tract and pull some levers. I love lever pulling.  Enjoy, kid.  Oh by the way, you will be so exhausted you won't be able to sleep.  Ain't that weird? Nah, that's MS.

Captain Fatigue was right.  The party was great but I could feel the draining begin around 7:30 PM, and for the last hour just plopped in a chair and visited with folks even my own family and we got through the night with no casualties, and everyone went home happy and with a candle.  We packed up and headed home.

I have never been so tired in my life, so drained, but of course not sleepy at all (like tonight as I'm writing this on Sunday morning at 2:30 AM) and so I remained miserable until felt a Spoon or two click into place.  Low grade moving around Saturday.  Jackie was affected by our collective sigh and availed herself of some naps.  I was looking at a crossword puzzle that Jackie had half finished and I could barely read the clues. The puzzle is still on our coffee table.  I swear Captain Fatigue was jiggling every lever he could find - mass itching, toes won't work, and there seemed to be invisible bricks attached to my legs.  I have never in my life had a hangover. Even in my deepest depression, nothing like this.

But tomorrow, technically Monday September 21, is our actual 30th wedding anniversary. And what a long strange trip it has been. But I have my wondrous partner with me still and much to do, whether Captain Fatigue cares or not.

13,000 views? Wow, thanks for sharing the ride.  Coming Next - how to fall down the steps of the New York Public Library!

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