CRPS, or Complex Regional Pain Syndrome (Type 1), is a change in the nervous system that's usually triggered by a very painful episode. The bad kinds affect the brain, nerves, muscles, skin, metabolism, circulation, and fight-or-flight response. Lucky me; that's what I've got. ... But life is still inherently good (or I don't know when to quit; either way) and, good or not, life still goes on.

Thursday, November 8, 2012

Re-learning how to drive

I'm either half a day ahead of schedule or half a day behind, and I'm honestly not sure which. It's roughly another 5 days to Denver, and with my sweetie's troubles slowly and expensively resolving, it's probably best not to try to rush, but to let things unfold.

Mind you, an hour's reiki this morning might be helping me think that way.

Badly as I want to be there already, snuggled up to him and brainstorming, here I am ...

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Between Richmond and Centerville, Indiana.

My room has a fog of mildew which stopped me on entering, but I paid before asking to see the room, so I'm stuck. I can't remember where the AC power cord is for the car's air filter, though I may have tossed it in a burst of mindless efficiency before leaving.

The window is wide open while I do laundry on the other side of town, so we'll see if that makes enough difference. If I wake up brain-dead, I'm sure you'll hear about it.

Despite good energy and good progress, I decided to reef it in and stop early tonight -- largely because I'm out of long-sleeved shirts, and needed to save arm-time for dealing with that.

I stopped here, precisely, because I had mail forwarded here to me at General Delivery -- a system that actually seems to work. It included my permanent Massachusetts driver's  license (which might be handy after the temporary one expires) and a really lovely card from one of the really lovely people I've met on this trip. A wonderful cherry on top of a rather good day.

It occurred to me that I haven't discussed  my accommodative strategies much. Here are a few things I've done, redone, and learned on the way:

Grabbing the wheel


Those of you who know CRPS well know that vibration is absolute hell, and a steering wheel is a big vibrating thing that's made to press against the weakest, most pain-frazzled tendons in my entire body. So that had to be dealt with.

I've learned, from all my adventures with tools when I lived on the boat, that no amount of padding will make up for harsh hardware.  So buying a vehicle with the lowest possible level of wheel-vibration in the first place was a major consideration.

My car, Henrietta, is a Toyota truck:

... but it's built on a Camry base:
This means it has a much more forgiving frame than trucks and truck-mounted SUVs (though it can still tow 5,000 pounds!) and it handles the road very gracefully.

I've learned through many years of athletics that gel provides the cushioning my body likes best. So that was the next thing to go on:

That's extra-thick gel-padded bicycle wrap on the steering wheel.

(And, incidentally, that's the driving grip I use half the time. Holding the cover, rather than the wheel, nearly eliminates vibration altogether, and it's very easy to grab the wheel if I need to dodge.)

Years of nursing and my own experiences with increasingly, um... responsive skin have made me a HUGE fan of good wool. It breathes even when wet, pads even when squashed, and if you keep your eyes open, you can find wholesale prices on new sheepskin (-- and get sturdy sweaters of cashmere, merino, or alpaca for $5-10 at the right Goodwill stores, but that's another post.)

In Massachussetts, I live near the Sheepskin Outpost on the Mohawk Trail, and I lucked into a sale there. That got me:

- The steering wheel cover, to provide more padding and keep my hands off hot rubber;

- The seatbelt cover, to keep the edge of the belt off me and keep the skin on my shoulder and chest aired;

- The seat covers, which I wound up getting for half of wholesale, because they'd just bought the stock of a company that went out of business and had more inventory than they could afford to store.


Boy, did that ever work out for me!

Covering my can

This is about traveling with disability, so here's some physical reality.

I started megadeath antibiotics a few days ago, and the first symptoms are making themselves felt. Kefir just isn't enough to save my skin.
My very favorite brand. I'm getting nothing for saying so, but I'd like that to change :)

Also, I've really been having trouble getting the circulation in my left leg to behave.

Today, in the middle of my day, I had a brainstorm that would minimize the reduction of circulation to my legs and maximize airflow to my antibiotic-ravaged sit-down.

I swapped my underpants for my white silk long-john bottoms instead, and decided I could just wash out the silk each evening and hang-dry it overnight. Besides, the extra layer kept the chill from cutting into my leg every time I opened the door.

Tonight at 6:22 pm, my left leg is feeling better than it did at 2:22 pm, when I made the switch -- despite a couple of hours in the car and far too little activity. Who knew such a little bit of material could make such a difference?

And I'm happy and relieved to say that the parts my undies have to cover are doing better, too. I had no idea that white silk was so healthful.

No more elastic around these legs. It's too bad, because I'd just stocked up on undies. But of course, I got them on sale. It could have been worse.

Gratuitous toilet humor...

I stopped in a gas station that had the kind of bathroom I grew up thinking of as a gas station bathroom. It's not chair-accessible (in fact, there's hardly room for a standing person to turn around in) and the tile might be original with the building.

However, in a totally novel approach to graffiti, this gas station found a new use for the wrongest possible shade of brown paint:
There's really nothing to add, is there?

2 comments:

  1. Ok, the gas station bathroom picture had me LMWO (laughing my wheelchair off)! I love your blog! I'm new to RSD/CRPS (well, I'm not new to it...more like just new to finally knowing what's wrong with me!). Thanks for the info and the HUMOR! :D

    GutsyGirl

    ReplyDelete

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