Saturday, November 21, 2015

Far better than nothing

Yesterday, hanging with a friend, I was asked to describe my MS experience (physically at least), so here it is:

Imagine yourself having drunk too much alcohol. Except, your mental faculties are completely unaffected by whatever you had to drink. Your mind is perfectly, completely, untouched. Everything else, physically, is all bunged up. You can at best sort-of walk, maybe not stand up at all, can't control your hands and arms or... anything, really.

And physically, that's my world. Brain works, body doesn't, and there's not a damned thing to be done about or with it.

Oh, Lord knows there are plenty of other issues... how much time do you have, dear reader? More than I have in the "being able to type/talk about things" department, definitely. But in a nutshell, that's my physical world. In a word, it sucks.

My friend said he had been reading up on MS, and that it was quickly clear to him that everybody who has been accessorized with the MS stuff gets a unique-to-them version. Everybody is different, and nobody knows anything about how to take care of that many completely different people; or in other words, every person with MS is different and the medical world is completely lost.

Welcome to my world, I told him.

But as I also told him, boredom is not one of my problems. Same thing may go wrong every day, e.g., issues with B-san, Mr. Bladder, or "Alan" as I call him (who is basically just a balloon, a character in the cartoon Amazing World of Gumball, which is functionally what the bladder basically is, anyway), but it's always a unique experience in the working with the external and internal equipment. Kind of a meditation, it can be, working with all the various components and getting them to work together. Cooperation in the catheterizing process is quite a significant contribution to success and comfort.

Saw some videos about doing transfers from the wheelchair to the fill-in-the-blank. The car, the commode, the bed, just a different chair. And yet again, being an outlier puts me in a challenging position... All the tools and techniques seem superbly suited for, if not designed specifically for, someone who is in a wheelchair because they're fully paraplegic. I, of course, am sort-of-plegic... I can get myself from the wheelchair to the commode in my house using my legs to get me from place A to place B, and I have arm bars and other stuff to make sure I don't collapse but I do have to make the transfer using my legs. For which I am really grateful, to not be completely paraplegic, but it does involve a risk of hitting the ground, which thank God I don't do any more. Much, at least. And won't, insh'Allah.

And off to the next bit of the morning bathroom adventure... and then if all goes well, breakfast, and then back to bed. Make morning tea for wife. And that's pretty much it for the day.

Well, right now at least...

At least I got that much.

Far better than nothing.

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