Saturday, November 14, 2015

One thing at a time

Yesterday was... as the friend who helped me survive it called it, "Memorable."

I used to go "off campus" (leave the house, bed, property, everything, and go out into the world) all the time. Certainly hugely more frequently when I was still driving, but even after that, I still went into the world not infrequently with my wife, for dinner or shopping or whatever. But getting out of the house just doesn't happen much, or  "at all," any more. A lot of it is vague leg pain and/or spasticity, plus staying near to the bathroom because B-san, Mister Bladder, or "Alan" as I've come to call it (him), does what it wants not what I want.  Yeah, sometimes it's OK but I never know what's really up. My last contact with the urologist involved him talking about "Well, with MS, stuff like that tends to happen." That's definitely high on the "Oh well... Sigh... " list.
But much of what was so very difficult yesterday really encapsulated the reasons why I stay home all the time. In a word, transfers.

Moving from the wheelchair to pretty much anything can be quite a paradigm "unpleasant experience." For whatever reason (I'll come back to that), circumstances seemed alas-inevitably to a world of "I can't." It inevitably involves what walking people would call foot drop, but in my case it involves the foot sliding forward off the foot-pad at the front of the wheelchair. Which inevitably happens when I cough or spasm and the legs just kinda fly about, but on my "A" wheelchair, I can at least drag my feet backwards fully onto the pad. I sometimes envy one of my fellow MS bloggers, Nicole Lamelie, in her "My New Normals" blog, has an amazing picture of herself on a wheelchair, but said chair has great foot-pad stuff plus her chair doesn't lead with her toes, it leads with a wheel, so if something's gonna run into the wall, it's gonna be the chair not her toes. It looks like a chair that requires more room than my poor little house provides, but it does look cool.

But anyway, back to the nasty challenges of The Day. My friend, who was truly doing the Lord's Work yesterday, had to do lots of ineffective and scary dead-lifts to get me out of the chair and onto some other surface, like say a bed because I was nasty fatigued and needed to rest. But at the end of the day, I absolutely would not go to the place of "never again," but I'm definitely in a very clear and definite "not today" place. Not dark, not despairing, but definitely, not today.

I had tried to involve my friend to do some "training trips" because my parents are coming like 3,000 miles to have thanksgiving with us, and I'm sure it would be less a source of despair to go to a nice restaurant that we all enjoy than to spend every minute of every day beside my might-as-well-be-hospital-bed.

But what was really, really interesting was after a day full of "oh sh*t I can't" was my return home and maybe it's time to cath myself and there was absolutely zero problem making the transfer from the char to the commode seat, and back. Absolutely zero problems getting into and out of bed. Zero problems. What tend to be the usual "oh well" moments that require a little foot adjustment manually was as challenging as it got.

As I think about the whole thing, quite gently and calmly, it comes down to leg strength/coordination and--here's the big one--arm support. My "B" chair goes into and out of the trunk/back seat/whatever with no difficulty, but the "A" chair has no-tip-over bars sticking out of the back of the chair that make packing it, and pushing it (which I sometimes really need) difficult for short-armed pushers. But it also is clearly The Chair for chair-to-car transfers. And if you were to look at my at-home bathroom, it's all about transferring using both arms to provide the real engine of supporting the transfer. There's just something about the ergonomics of the "A" chair that make it possible to put the chair in the perfect place to kinda push myself up until I can grab onto the roof of the car or the door or whatever, but then I am in total control, such control as there is. The "B" chair is just off enough to make it impossible to use both arms to share the support; one just won't do it. And the "B" chair is very poor at staying out of the way enough for care-giver to deadlift me out of the chair and stick me into the car.

So, what's the moral of the story? Well, beyond getting a zero-transfer just-push-your-chair-in van, which I'm really not at all excited to get because I just finished paying for Karen's lovely little Prius, insane low-amount-of-gas using car, and I have little interest in buying another. Which can't fit into the garage with the current Prius. And I sure as hell have zero interest in buying a new house to fit the van that I have zero interest in buying. As Finn the Human said on Adventure Time, there's gotta be another way.

So, the gift of yesterday's MS experience was: Remove things that make your life difficult, use things that make your life easier, live with what you can't remove. Such as the nasty fatigue I seem to be immured with, nowadays, the seemingly constant "I need to sleep now" that seems to be filling my life. When my life isn't filled with bathroom-centric challenges. Which it also pretty much is.

But... One thing at a time. And certainly, one ting you can change at a time. Because trying to change things you can't change is not a path to happiness. Or, in a single word, "Duh."

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