Handling my hinges

I had a day off from driving around. After wonderfully quiet morning, I took a walk to the nearest park, half a mile away. The mistletoe was going like gangbusters:

It was shocking to realize how much the tendons in front of my hips had shortened. I had to use a bit of the washing-machine action through the hips, to get a stride more than a couple feet long.

That's way too hard on the cartilage, so once the washing machine warmed me up enough to stretch without injury, I stretched enough to let me take a tolerable stride without grinding my knees.

There's only so much my tendons will release, in one careful stretching period. There's quite a bit of work ahead of me.

I really haven't been taking position seriously enough: spending so much time driving is not just hard on the torso (which I have managed with better success) but it's hard on everywhere you bend, especially when your body sucks at bouncing back.

Short tendons in the front of the hip pull your lower back out of alignment, dragging on the front of the spine. This is terrible, as anybody who has ever had the least little bit of low-back trouble can tell you.

The way CRPS makes your tissues less resilient means that a few good stretches will not do what they used to do, back in my 20s and 30s, when 10 min. of dedicated work would put me right back in trim. Like most athletic young adults, I had no idea how good I had it… :-)

Taking care of my hinges now has to be part of my daily routine. Especially since the driving isn't over yet. Stretching five or six times a day, like I do my neck, which I'm still losing ground on; walking absolutely every day, or at least six days out of seven. At least it will buy me time, until I come up with something more definitive.

I fight hard to keep CRPS out of my legs in terms of circulation and sensation. Not interested in losing them to any kind of laziness!

The sheer activity of Epsom salt baths

Taking a day to rest has been just the thing.

Now here's what I mean when I say, "I took an Epsom bath..." And I'm sorry to say that getting images loaded will have to wait for another day, so use your imaginations for now :-)

Nearly all motels have a bathtub. I consider this essential. They're small, but adequate. With a swipe of cleanser and a quick rinse, I've found all of them usable so far.

Temperature – the first consideration

People with chronic CRPS have two substantial issues that affect bath temperature: wonky signals to the circulatory system, and screwy temperature regulation.

Hot baths are a thing of the past. They aren't good any more.

I like a bath that's just a few degrees warmer than the temperature that feels like nothing on your skin. That seems to provide the best results.

I find chlorine to be counterproductive, so I let it go first. I run the tub a little hot, with the fan on, and leave the room for 5 minutes until most of the chlorine dissipates. Then I adjust the temperature.

MgSO4, my ally

I've gone up to using about 2 pounds of Epsom salt for one bath. That's about a third of the 6 pound bag, costing between $3.50 and $6.50, depending on where you buy them. I used to use a cup or two, but I really get better results with a stronger solution.

The process

Remember, this is about re-regulating and re-normalizing, so leaping into the bath and getting busy is the wrong thing to do. Going one step at a time and persuading my body to stabilize at each point is how the process works.

So I take a couple minutes to just sink into it, let the mottling pattern on my lower body and arms fade, and get some circulation going to my overworked skin. I brush over all my limbs with my hands, introducing them to the idea of tactile input, and how that should go.
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Nearly all motels have washcloths with a nice scrubby texture.
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The soft kind that you get in the bath and body store feels to me like turgid gelatin, soaking up a lot of soap and doing very little in the way the exfoliation – which is what I used to use washcloths for.

Now, it's all about renormalization – or, to use the standard allopathic medical term, desensitization. (Leave it to medicine to make returning to normal sound like something bad!)

I start with the soles of my feet. I hold the washcloth in my open hand, using a big, squishing gesture.
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With that big gesture, and a certain amount of gentle elbow grease, I reassure the soles of my feet that they're doing fine. Once they start sending appropriate signals of touch and motion, I work around the foot and up my ankles.

Using the washcloth in one hand, and nothing in the other, I alternate strokes, soothing the frazzled burning sensation left by the terrycloth with the silkiness of Epsom water in my palm. I don't just notice what the sensations are from my skin, I tell that part of me what the sensations ought to be: It's just terrycloth. There's no burning here. It's just terrycloth. It should feel pleasantly scrubby, nothing more.

Every now and then, I move the washcloth to a part of my body that still thinks terrycloth is just terrycloth, and give it a brief demonstration. That seems to help.

My calves take a little extra care. I always start on the left, and it feels like a hunk of plastic. I tell it to calm down – in firm, maternal yet authoritarian tones – and go squish my right calf instead. When my right calf and shin are sending nice, normal signals of terrycloth texture in motion, I go back to my left calf, reassuring it that you can be normal, you know perfectly well what that feels like, there you go, you can do it.
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This is a sidebar note, but it's relevant… When I was studying up on Dr. S. V. Ramachandran's work on mirror therapy and lens therapy for people with amputations and other limb pain problems, what impressed me most was the plasticity of the brain. With enough persistence, and a persuasive enough message, the brain can be reshaped.

Since so much of CRPS's maintenance relates to the brain having been reshaped in a distorted way, part of the task is to reshape it into a healthier structure.

There are several ways to do this, including lenses (optical input is very powerful in the brain) and forms of retraining, such as meditation – and the exertion of parental authority over your own being.

Speaking to my body in tones of loving maternal authority, I find, is remarkably persuasive.
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Eventually, my left calf loses that awful dense feeling and starts to feel like a leg again. Then I coach it not to send sparkling messages of hot and cold where the washcloth goes, but just the sensation of terrycloth rubbing moderately over skin, and that that's okay and the right thing to do.

In mobilizing tissue, the washcloth provides traction against my skin, so I hardly have to use any hand strength at all. This is important, because if I had to rely on my grip to get hold of the tissues, this would be totally out of the question. The water neutralizes a lot of gravity, so it's easier to control a limb you're massaging.

I can squish the muscles with one hand or two, bouf them against the bone, and jostle them around. You can mobilize quite a lot of tissue with very little effort, if you use a washcloth in the bath.

I work my way up my legs, paying attention to the major nerve path and the major muscle groups (always with big, squishy gestures, not too challenging, but mobilizing.) I go back to my knees a couple of times, where the main issue is to mobilize the circulation and draw away the swelling.

I work on my low back and hips until the inclination to spasm turns off. I tell them to take it easy, just let go, you'll know when it's time to contract, now settle down.
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Then I lean forward to dip my arms and work on them, with somewhat gentler gestures. Since I can't remember just what normal sensation is there, I look for overall warmth and better mobility in my forearms, with touch signals as close to normal as we can get.
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Part of the idea, obviously, is not only to re-normalize my skin as much as possible, but to improve surface circulation, so that as much magnesium as possible can be taken up by the troubled tissues.

Once I have squishy-massaged my arms from fingertips to collarbones, I do a quick scrubby pass on my back (where I used to get symptoms, and don't want anymore)…

And then I get the Calgon experience, lying back in a warm bath, feeling alive and remarkably well, with nothing to do but enjoy myself until the water cools.
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I figure I should spend at least a solid 20 min. in the tub, to absorb as much as possible of the magnesium, the warmth, and the chance to melt all the little knots out of my brain.

It's not a bad prescription. Not bad at all. There is always considerable improvement, and sometimes it makes me feel almost completely well.

Reality check in the pause for breath

With some relief in sight, I can admit that being on the road somewhat underequipped and jnderfunded is really hard. The overnight options, as I learned in Centerville, are fraught with the potential for devastating toxic exposures. Packing and unpacking dvery day is painful and an egregious time sink. The solitude doesnt bother me but the lack of distraction does. The constant, relentless struggle with tbis poor body leaves the words "frustration" and "hovering bitterness" feeling hopelessly inadequate.

I'm supposed to create a budget fod implementi g the CRPS: Art & Spirit projdct. I'm much mord clear about what ig will need to include. Good information to have.

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?

I'll take it and be grateful

I'm happy to say that it has been an otherwise fairly uneventful day. I'll have to repair the male connector that activates Oliphaunt's tail-lights, but it's taped up and will do until I'm somewhere warmer and hurting less.

Heading South was a good move. It was bitterly cold on I-80. It's getting more bearable every 50 miles.

I've discovered that not only stopping every hour and stretching, but running in place for a few minutes -- until my whole body starts getting warm -- really makes a difference. 

Exercise not only improves circulation and oxygenation, it helps stabilize the autonomic nervous system. This is my substitute for a 20 minute walk at every break, which is rarely realistic at highway rest stops.

I got 4 hours of driving time today, which was my target amount. Considering I'm in hard recovery from the previous 36 hours, that's pretty good!

Well away from Pennsylvania's peculiarly slimy water, here in roaring downtown Ashland, Ohio (you can blink without missing it, but don't blink twice, or you might),  I'm curled up in a rather luscious little Super 8. (I did say my needs are simple...)

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The bath overflow is halfway up the tub, leaving a depth suitable for a footsoak. I tied a couple of loosely folded tissues into the plastic bag they leave in the ice bucket, stuffed it into the overflow gap, and it blocked it completely.

I put about a pound and a half (~3 kg) of epsom salt into the bath, and had a looooovely warm bath. My spine and hips and legs and arms are sooooooo much happier now, and I can bear to be inside my left leg. The thought of doing it again tomorrow is bearable, and that's all I ask.

My sweetie is safe and well, my last lovely hostess's internet is up and running, and I am warm and at rest. Life is good.