2015.01.25

The wheel keeps grinding.

Bed-zilla kept us snug for about a year, but I had to dismantle her last night. The problem came about when MW hyper-extended her thumb trying to rise up from the double queen mattresses on the floor. This pain, she was sure, would cause her to have to quit and go on disability. She would never be able to hold a spoon; work a mouse. Her life was effectively over. All because she hurt herself getting out of Bed-zilla! So the mattresses were moved, shuffled, re-shuffled, and now the sleeping situation is thus: MW sleeps in the sitting room on a mattress resting on a box spring. I'm on the other mattress in the foyer. We are separated by blankets tacked up over the entryways designed to keep MW's room dark, but still allow for enough light so she can make it to the restroom. Tricky business, this. It looks like we're trying to build erratic passageways for a lame haunted house.

Today, of course, the thumb felt just fine (it really was just a sprain and not a permanent disability. Go figure), so we'll see how long the current arrangement lasts. Recall that Bed-zilla was developed in response to MW's worry about bumping her head or falling out of bed. I asked her if she was sure about the box spring. That's a foot/foot and a half extra on the way down. She considered it for awhile and decided a fall from that height wouldn't be too bad. A better risk than having to push up off the ground all the time, anyway.

We shall see.

For me, for now, this is great! Sure, I'm still close enough to hear her when she snores or bursts out talking in the middle of the night, but we're on separate beds so I don't have to feel her spastic movements or hold her twitching hand. Peaceful.

***

In the past month, MW has declined two invitations to hang out with friends. She is afraid to be around these people because they all have small children and she doesn't want to catch a cold, or worse, the flu. Children are horrible when it comes to spreading disease, she says. And she can't risk loosing sleep because of any sickness.

Okay.

Here again, I could disagree. I could tell her it is worth the risk to spend time with friends. I could try to coax her out of this irrational behavior. Hell, I know time is short. She really should be having as much fun as possible now. Right now.

But I don't. I do the opposite. I shrug, say, yeah, kids.... Always sick. And this year is supposed to be a bad flu season, so....

Easier and safer to just stay home and cook and clean for MW while she watches TV. Plus, at home I can sneak upstairs and drink and drink and drink until I don't feel like such a bad person.

***

It has been a dreary, rainy, shitty winter; but the last two days have been sunny and mild. I'm still thinking about that trip to the University of Houston, but I've added another item to my list of hopeful accomplishments for 2015 - a good goddamned spring cleaning of Casa Muncie. See, I can't really clean the house when MW is around because, well, just because she's pretty demented is the best I can do without getting into the sad details (they involve a fear of moving dust around and toxins in cleaning supplies). So if she can continue working weekends for another month or two, I might get a chance to fling open the windows, turn the radio on loud, and swab this dump from steeple to floorboards. There is always the risk that she'll notice and get angry, but I'm not too concerned. She hasn't been noticing much recently and as long as I don't leave any incriminating sponges, clothes, or other cleaning supplied behind for her to fret over, what's the worse she can do?

Ha. Famous last words.

***

I know I shouldn't, but I've been looking at Huntington's Disease blogs, facebook pages, internet noise again. You tell yourself you want information - information is always good, right? - but the reality is you just want to find company for your special brand of misery. Then you get pissed because there is no fucking company for you. You're all alone. And all those bullshit "bare the truth" or "caregiver happiness" advocacy movements just raise your hackles. My truth is that I have to lie - HAVE TO LIE - all the time every day and the only happiness I have to look forward to is that first drink of the night - hidden away in the closet of my upstairs bedroom drinking, drinking, drinking. And when MW asks why she smells alcohol I shrug. I just used mouthwash, I say. Because everything has to be a fucking lie. Has to.

Then there are the movies about at risk people who get tested. I can't.... Can't even.... You know what? They all have families and support groups and friends and loved ones and go ahead. Go right ahead. If it's positive, there's the arms to hold you. A wide angle shot of all the loving arms to hold you. Negative? Good for you.

Good for you.

Me? I have to stop surfing the internet.