Pushing back on neuroplasticity

I got the Sydney norovirus right before it hit the news. I’m recovering, but slowly; the persistent low-grade nausea is annoying — and worrisome. I don’t want my body to get the idea that this is the new normal…

Brain plasticity is a major culprit in CRPS and its maintenance —
  • from the first refusal to cut pain signals off…
  • to the growth of the brain cortex area that monitors that body part, so it can handle more pain signals and provide less space for normal body areas…
  • to the deeper remapping and rewiring that alters cognition, disrupts memory formation, screws up autonomic signalling, knocks endocrine and digestive function out of whack…
  • and so forth.




It’s important to stay on top of the brain, so to speak.

 
Thanks to the brilliant pioneering work of Dr. V. S. Ramachandran, we now know that mirror therapy and reducing-lens therapy can remap the brain’s perception of injured body parts to something closer to normal. That was a huge help with the pain, when I had CRPS in limited areas.
 
The reality-shattering concept behind mirror therapy is, basically, that conditioning can work in reverse: rather than allowing ourselves to be the passive objects of what our brain becomes accustomed to doing, we can push back against the brain’s alterations using our natural mechanisms of perception and intent. (The basis of Dr. Ramachandran’s discovery is that perception alone can provide the altering input. Intent gives it more focus, force and direction.)
 
The relationship between body, intention, and brain is interactive, multi-dimensional, and interdependent. 

Having said that, it’s not completely reciprocal, nor is it ever under perfect control — unlike a good trapeze act.

 
If we could will ourselves better, then, given the extraordinary focus and determination of my fellow CRPSers, I know for a fact that we would have done so already. I never had met anyone with as much determination as me, until I met my core group of CRPS friends. If will alone were the answer, we’d have it!
 
CPRS is complex indeed.
 
Anyway… back to what we CAN do.
 
Communicating with the brain, in language it can’t ignore
 
The basic principle of RE-re-mapping the brain is this: describing to the brain, in language it can’t ignore (combining sensory perception and intent), what it should be doing.
 
In my Epsom bath article, I described rubbing a washcloth over body parts that have distorted perceptions and telling them silently, over and over again, “It’s just a washcloth. Feel just a washcloth.”
 
Where there is normal perception, or even nearly-normal perception, I stroke from the normal area to the abnormal area — never, ever in reverse! the brain understands the concept of “spread” — and tell my brain and body, with absolute focus, “This is what normal feels like. Feel normal HERE now. This is normal. Feel it here now. That is the correct feeling. It’s just a washcloth. Feel a washcloth.”
 
Not a burning sheet of sandpaper twice the size of my leg. Not a blunt sense of almost nothing, somewhere else.
 
A washcloth, right here.
 
When I’m doing this, I don’t even think about what the abnormal feelings are like; I came up with those metaphors just now, sifting through my memory. I shut the incorrect perceptions out of my mind and dismiss them, over and over, as obviously false information.
 
I have to take a break sometimes when the pain is bad and just breathe, but I don’t think about it, I focus on the point: learning to perceive what’s really there.
 
Vision, tactile input, kinesthesia (meaning that, as my hand and arm moves over the body part, my brain’s mechanisms triangulate on where things really are and its picture of my body gets corrected), and the focus of intent, are all part of the exercise.
 
This combination of factors is what makes it so effective. The multisensory inputs, the constant messaging of proper information, eventually overrides the false information.
 
Slowly at first, but with increasing pace, the normal sensation spreads over into the abnormal area. Every time. Not always completely or perfectly, but often both.
 
So far, I’ve reclaimed normal sensation in my back and most of my left leg, and I’ve kept the sensation and function in my arms at a level almost incompatible with the decade that I’ve had this disease.
 
Considering how bad things have gotten when I let this slide, the value of this exercise is clear to me.
 
Pruning your neurons intelligently
 
Learned responses are due to the basic learning mechanism in the brain:
  1. neurons hook up, and a connection (or association) is made;
  2. if the connection gets used (or the association is allowed to stand), more neurons hook up to make it stronger;
  3. once enough neurons have hooked up, the connection becomes like a good road;
  4. and the thing about good roads is, they get used, even if they’re used for something odd.
It’s important to manage the roads in your brain, especially when you have a neuro-plasticity disease like CRPS:
  • Make sure the roads in your brain are useful to you.
  • Do that by pruning the connections you don’t want.
  • Prune those connections by letting the associations die.
  • Let a connection die by deciding to think about, or do, something else, whenever it comes up.
    Consistently. Persistently. Relentlessly.
  • And keep making that decision every time it comes up.

It works by a negative, which is not how we are taught to do things: turn away from the response, shut out the perception, ignore the link. That’s how you prune an unhealthy connection.

It takes time, but it works. The time will pass anyway, so your brain might as well be better off at the end of it…

Masters of distraction
 
We CRPSers are masters of distraction — not to mention the kind of persistence that this pruning takes. We can learn to be diligent about applying it to sensory associations we don’t want. This is where ADD, used selectively, becomes truly — oh look! Yellow feet!
 
… Wait, what was the connection I was about to make? I’ve forgotten.
 
See? It works!
 
The joy of having a bit of ADD and being a meditator is, you really can choose when and how to let out the ADD — as long as you do it often enough. It’s a great tool, and I’m grateful for it.
 
Pruning specific sensory and functional associations
 
I’ve had recurring nausea for months now. It’s related to upticks in stress, of which I’ve had more than an elegant sufficiency in the past year.
 
Then there was this tummy bug…
 
It’s day 5 and I haven’t vomited in 3 days but I’m still nauseous. While this bug is supposed to leave one nauseous for quite some time afterwards, I really don’t want my brain getting the idea that sending nausea signals is going to be the new normal. I’m not going to let the nausea become habitual. So I’m pruning those connections.
 
I can’t will nausea away, as it comes from quite deep in the brain from a primitive place. And, unlike pain, distraction doesn’t help much for long.
 
So I’m balancing the use of ginger (short acting, “hot i’ the mouth”, sugary) and anti-nausea meds (long-acting, makes me slower in brain and gut) to shut down the nausea for a good part of each day. 
 
This means I’m not nauseous for a good part of the time. This helps retrain my brain away from constant nausea by letting the relentless association, and the neurons that make it, die off. I’m going to keep after it over the expected week of recovery still to come.
Only constructive connections, please.
That’s one example. It doesn’t take much thought or mental discipline, just persistence.
 
My lovely friend X has a recent example of something different, an obviously inappropriate new association being made.
 
She multitasks, making full use of her functional time. When she was eating, then turned aside to the plastic phone or plastic computer to respond to someone, then turned back, her food suddenly tasted and smelled like plastic.
 
That is a very errant association indeed. Prune it!
 
She is now putting aside the laptop and turning off the phone while she eats, so the association doesn’t develop further. Moreover — and she may have just enough ADD to pull this off — she hopes to be able to switch her attention immediately when the plastic taste pops back into her — Look! Yellow feet!
Egrets make great distraction, especially in funny socks.
It takes time to let those connecting neurons die, but if you get on it quickly, as X did, it can turn around pretty well and pretty quickly.
 
The Principle of Primal Exclusivity
 
This is simpler than it sounds. It’s the opposite of pruning.  
 
When you’re doing something really basic (or primal), like eating or drinking or sleeping or running or sex, keep your attention basically on that activity. It helps keep your brain straightened out about those things.
 
You really don’t want them getting bollixed up, because rewiring primal functions takes more work to undo.
 
That’s one reason why insomniac advice is about having a calming bedtime routine and sticking to it: it’s retraining the brain around a primal activity. The brain needs absolutely consistent signals over a period of time, to retrain successfully.
 
Incidentally, sex (alone or together) is the only activity that (ideally) engages both sides of the autonomic nervous system: arousal is mediated by the sympathetic nervous system, and orgasm by the parasympathetic nervous system. It provides a balancing mechanism I can’t think of occurring in any other sphere of life. Done properly, it could be the perfect autonomic tuning tool…
 
And with that happy thought, I’ll leave you to wash your hands against this norovirus and do whatever seems best.
 

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Any such thing as "just another day"?

At the end of last year, I had the pleasure of writing exactly the kind of end-of-year post I’d always wanted to: Pleasant without being dull, reflective without being melancholy, whimsical without being trivial, and, of course, linking back to blog posts marking turning points in the year.

I took that week to reflect, which was appropriate. It had been, for me, a year of great inward shifts, starting from the inevitable, flattening despair of the massive practical and intangible losses this disease brings, to a new awareness of possibilities that I had discovered, fought for, or created out of whole cloth. It was probably the year that this blogging voice really took shape.

This year is quite a bit different. I’ve been technically homeless for most of it, catching up with friends I hadn’t seen in far too long, and looking for a rational way and reasonable place to set up my post-poverty life. (Oh well.)

 Despite my plans, I haven’t had much time for reflection these past few weeks. Physical survival in the form of an income and affordable home were taken care of… but then the survival issue became much more personal, and at the same time, even further beyond my control as my nervous system took off without me.

Despite all that work, all that expense, all that hope of 2012… Nothing is assured. There is more to manage, but less I feel I can hang onto.

Admittedly, this isn’t my cheeriest post ever. Be assured that my determination remains unmoved.

With it, that F-U imp still holds the back of two fingers up to anything – or anyone – that thinks to squash me.

This date is an accident of history. The end of the year has even less reason to land on this day, of all days, than the last cycle of the Mayan calendar had to land a few days ago.

Our calendar is only loosely tied to anything but mental habit — and centuries of political pressure.

But it does us humans good to have a chance to pause and reflect, think about how we define ourselves, how we adapt, how we react, how we think, notice what we’re grateful for, what we cherish and want to keep.

As for me, that’s now too obvious to bear speaking of.

I will not die.  
I have work to do
I love, and am loved, more than my pitiful mind can encompass.

It’s more than enough to keep me going!

Whatever we call this day, it’s one more in the middle of an adventure beyond imagining...

 Adventures tend to be damned uncomfortable things, as Bilbo Baggins was not the first to assert; but they make good material. As a writer, I get something out of that. If it’s a form of insanity, at least it’s an adaptive one.

Come with me on the journey. I always appreciate the company.

Links to blog entries:

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Think zebra

This title has two meanings:

  • Medical students are often told, “When you hear hooves, think horse, not zebra.” This means that a set of symptoms is probably due to a common cause, not an uncommon one. Zebras are rare.
  • There was a popular book about chronic stress and fear that pointed out that, when prey animals like antelope or zebras are attacked, they get really upset; as soon as the attack is over and the predator is gone, they chill right out again. It suggested reacting like the zebra; respond fast, then relax when the threat is gone.
Zebra face
I have a rare disease — a real zebra.

One of its many effects is to hair-trigger my fear, because of the disruption of the autonomic nervous system that regulates the fight-or-flight response and everything that comes with it.

My bf and I are dealing with a crazy ex. It’s an unpleasant experience for anyone, but truly trippy for a former ER nurse (talk about comfortable under stress) who now has a CNS hotwired for the fight-or-flight response. I keep blinking to check whose life this is, anyway.

In between the bouts of crisis management, I’m doing my very best to “think zebra”, do a logical assessment, and chill right out again. One must function, after all.

The daffiness of CRPS-brain (especially one that has been overtaxed with a long trip and multiple moves) means that things I need to do occur to me bit by bit, not in a tidy list. However, I do make lists, and have the backup of good friends with relevant experience: I follow their advice promptly and to the letter.

All that’s left to do is keep on with my mental disciplines: meditation, contemplation, qi gong, and prayer. Studies show it works, though they’re vague as to why. Doesn’t matter what format or religion you meditate or pray in, as long as it’s sincere.

Makes perfect sense in quantum physics — but medicine is stuck in the 1600’s, with the radiant Sir Isaac and classical physics. Maybe it’ll catch up one day.

Meanwhile, here’s a zebra. Time to meditate and pray, then stop and chew grass.

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Whiplash…but the good kind

We now have a cute li’l trailer, sufficient to our simple needs:

 

I lived on a sailboat for years, and J is a camper from way back, so we think it’s about right. I can hear some of you gasping and a few saying, in slightly strained tones, “Well, if you’re sure…”

It’ll do for now.

We paid too much for its years, but about enough for its general condition. It’s clean and tight and, with a few electrical personality issues not surprising in something 30 years old, is in very good shape inside. That is, the cushions, cupboards, furnace and water-heater are excellent!

The trick is finding a place to put it.

We look weird on housing apps.

This is new territory for us.

My nursing and writing/software resumes were irresistible, or so I assume, since I hardly had to look for jobs; they’d just as often come looking for me. J’s carpentry work is second to none, as his rate of re-hire attests. Too bad so much of it was in Mendo, where people change their phones like normal people change their underwear.

Work aside, I’m highly mobile (always have been, except when disease really slaps me down) and J is moving out of a region of the country which, in my view, is a total pit. Among other things, anybody who looks Native American (as J does) looks like a punching bag to the local thugs, uniformed and otherwise.

And, since we’re both now a little daffy, it’s not like we have the routines nailed down. As J says, “We put our two screwy brains together, and we’ve got one pretty good one.”

Still, I’ve always paid my rent on time, even in the worst of times; and J has survived 62 years as a neatly made, brown, feisty dude of less than average height. Persistence is key, in housing as in chronic disease. He is certain something will come soon. Meanwhile, we keep doing the rounds.

***

No sooner had I entered and saved the above then, on J’s advice, I called the manager of the mobile home park we wanted to buy a home in, just to ask if he might have anything…

He had one RV spot left.

It’s huge, has already been dug over and gardened in, backs onto a creek, has good neighbors and a manager who likes us, and it’s in budget (just). He took to us so much, he’s trusting us to move in Wednesday and do paperwork when I’m back the following Monday.

On our previous visit, I gave him a jug of real old-fashioned maple syrup from his old home and mine in rural New England. That might have made us more memorable.

Img from this intriguing article: http://www.ishs.org/news/?p=1588

My well-honed reflex is to wait for the other shoe to come flying out of the dark and whack me upside the head.

My determination is to be profoundly grateful, a good citizen, and maybe re-learn how to relax…

Meanwhile, I’m  off to see my new doctor in LA

I’m leaving tomorrow on a 2-day trek down. I’ll stop for a visit with relatives, giving J free rein on getting us plugged in, set up and organized. He’s going to enjoy that!

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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.

I should add that baths are not essential to Epsom treatment for CRPS. Here are a couple of tricks I’ve used, with a degree of success which not only included the targeted limb but also improved CRPS for me generally:

  • I’ve immersed my arms in an Epsom solution in a sink or basin. This is great when I’m not up to a bath, but I’m too chilly to sit around with wet limbs. I lean into the basin, with sleeves all the way up, and slosh and slosh and just soak it up. I’ve found that not only does it help my arms, but the relief goes up through my shoulders, down my back, and even my feet feel better after doing this with my arms for 15 minutes or so, 20 minutes if I can stand there that long.
  • When the dysautonomia is being REALLY bratty, I sit with a basin of Epsom solution and a tea towel nearby, and simply wipe the bothersome limb, stroking from healthy area to painful/spasming/misbehaving area, with the same mental chants I describe below…

Both of these strategies work extremely well. Many of us are accustomed to sink baths, and it’s no harder than that — easier, because rinsing is optional.

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 to me 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 5-10 minutes until most of the chlorine dissipates. (This really works.) 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. This is an important first step, because the touch of a hand wet with Epsom solution is softer than silk, and it’s important to start with the most positive possible sensations. This helps de-alarm your central nervous system as well as re-acquaint your skin with the world. This is supposed to start, and end, as a definitely positive experience. In between, there might be some work.

When working on such deep and challenging health issues, it’s important to set yourself up for success whenever possible!

Back to our bath.

Nearly all motels have washcloths with a nice scrubby texture. 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 of 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. If yours are too sensitive to touch, start where you can touch. Remember, set your body up for success. This second pass distinguishes between contact on the surface and underneath, which are two different sensory realms. The first thing I do is go underneath, to the tissues below the surface of my feet, in a gentle and encouraging way.

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. The frazzled sensation eases off gradually.

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 myself a brief demonstration. That seems to help.

Once the signals start calming down a bit, I can go deeper. My calves take a little extra care. I start on the left, and it feels like a hunk of plastic. I tell it to calm down – in firm, maternal, authoritative 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.

Firm, yet loving, maternal tones are hard to resist. It’s a great re-progamming tool for bringing your brain closer to normal.

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Eventually, my left calf loses that awful dense feeling and starts to feel like a leg again.

The next step is to address the surface sensations on up the rest of me.

I coach my skin 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.

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 very tissue-mobilizing.)

I go back to my knees a couple of times, where the main effort 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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Speaking to my brain in a way it can’t ignore

Health professionals dress it up in fancy words, but this is what brain plasticity boils down to: our brains take in messages that are so simple and so primal they slide in below the level of words. The way to push back against that plasticity and make it go the way you want, is to address your brain in ways that are simple, primal, and slide in below the level of words – even if you use words at the time. Even in spoken exchanges, remember, 90% of the communication is nonverbal. This is true when we talk to ourselves, as well as others.

With enough persistence, and a persuasive enough message, the brain can be re-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.

Dr. S. V. Ramachandran’s work on mirror therapy and lens therapy for people with amputations and other limb pain problems led the way in brain plasticity work, highlighting the very powerful (and nonverbal) effect of visual input on brain remapping.

There are several other ways to do this, including forms of brain retraining such as hypnosis, biofeedback, meditation, specific and clear visualization of painless movement (which, if done clearly enough, can cause brain activity nearly identical to the real thing) – and, naturally, using tones of parental imperative with your own sensations.

Speaking to my body in tones of loving maternal authority, I find, is remarkably persuasive.

Why I start deep and work my way out

I find that it’s often easier to start with deep tissues and then address the surface issues. It sounds weird, but it’s often easier for me to get past the surface sensations when I’m reaching into the muscle and fascial layers, and then, when the deeper tissues are responsive and the blood is flowing through them again, it’s a lot easier and more productive to work out the surface sensations.

Conversely, if I start with the surface sensations, I may not get far enough to be able to dig in to release and mobilize the deeper tissues. Getting halfway through surface pain leaves my body a lot more sensitive to intrusions than just charging in and starting with the deeper tissues.

On the other hand, there are times when the surface simply has to be dealt with, or there’s no chance of getting to the deeper tissues. My left calf was like that when I first wrote this, though it has improved a lot since then.

YMMV. Each of us is different. That is part of what makes CRPS so interesting, and at the same time so darn hard to treat.

Physical issues

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 either one hand or two, boof them against the bone, and jostle them around.

I can mobilize a lot of tissue with very little effort, if I use a washcloth in the bath.

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.

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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 …

View Larger Map
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?
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Not even anger is wasted

I’ve been struggling with how to make certain changes when my mind and body are so intolerant of change. I’m not naturally intolerant to change — quite the opposite! — but CRPS makes changes cost me a whole lot more.

Selling my home of 6 years, moving twice in one month to different regions under difficult circumstances, starting a relationship (which quickly became long-distance), having a setback with CRPS, and getting a windfall, is a heck of a lot of change in less than two months.

Some of them are good changes (for a change, ha ha) and am I ever grateful for that! But they cause significant shifts in the mind, which causes significant shifts in the body. …With chronic CRPS, there’s simply no practical difference between physical shifts and mental or emotional shifts any more. The domino effect is complete.

I had malabsorption syndrome for a few weeks there, where all my food went whizzing through me and I couldn’t get much nutrition out of it. It has settled down, but I still have considerable endocrine weirdness and I’m gaining too much weight (more than my intake should cause.) This means my feet and knees are under still-heavier attack from CRPS and fibromyalgia.

I find this disturbing enough to be frightening — if my feet get wiped out, there goes my one good form of exercise — until I got reminded of one of those things I used to know, back when philosophy was easy, before this past decade’s descent into Hell: “Fear and sorrow inhibit action… anger generates it. When you learn to make proper use of your anger, you can transmute fear and sorrow to anger, and anger, to action.”

That’s from Millman’s Way of the Peaceful Warrior, a book I couldn’t read for years because allegory’s contrived tone always put me off. One of the great advantages to getting my butt so severely kicked for so long is that I finally shed a lot of intellectual arrogance; I can now stomach the clumsiness of allegory, if there’s something worth gleaning from it.

That tip alone might be worth the effort. I’ve got plenty of anger, and rightly so. Rather than always managing it out of sight, I can dump my fear in there, where I can use it.

Chosen change is mine. Make way.

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Brain fog …and living anyway

I’ve been struggling with chronic brain fog for awhile. I generally wait for a clearer time to blog, but I’m not sure that’s sensible. It’s been ages.

This could go on for quite some time, especially since my figuring out how to fix it is going to involve a better-functioning brain than I’ve been able to bring to bear. Or else a flash of insight. Or a tremendous stroke of luck. Possibly a gift from the great good gods. I’m open to all of that!

The old idea was that it was silly to post unless I could post something I’d be happy to reread, and I can tell when I’m not happy to reread something if it gets changed or deleted. I’ve been changing and deleting  more, indicating a certain amount of wasted effort.

I’m beginning to think it’s silly not to post. This is life with CRPS, after all. It goes on, whether I’m ready for it or not, and frankly, it does involve a certain amount of apparently wasted effort.

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Just enough

The feds owe me backpay. It should come to quite a chunk of money. Naturally, some of my friends are spending it for me according to their own wishes and tastes. Bless their hearts.

It’s not here yet, and I have to manage with what I have. I’m grateful for my monthly disability income. It would be nice to have more, but it’s enough for me to live on. Just enough. My  income is more than many have, and I have really simple tastes… but most people can live a whole lot cheaper than I can, because my “basics” are different.

I want to ask my blithe friends to point to something in their cupboards — something to eat. Anything.

  • Pasta? For me, that’s 3 days of poor vision, no memory, no thought, of being so disoriented I’m unable to drive, let alone get to the end of a sentence. Corn and rice aren’t quite as bad, but they still cost my body too much.
  • Beans? Depends on the bean, but it usually means sluggish bowels, insulin resistance, worse nerve pain (because the endocrine misbehavior triggers inflammatory responses), and disproportionate weight gain. Every extra pound I weigh is a tax on my feet and legs, where the pain and swelling are already about all I can cope with. 
  • Cannned goods?  Neurotoxic preservatives that set my thoughts rattling, interfere with sleep, make me feel like someone took a baseball bat to my head. 
  • Soda? Oh boy, let’s talk about soda. The phosphoric acid alone will send my peripheral and central nervous systems into spasms, and the caffeine throws my fight-or-flight response a curve-ball. Don’t even get me started on the corn syrup. Corn fractions are bad, but high fructose corn syrup is a straight descent into neurogenic Hell.

I have to put expensive berries and piles of organic greens in my cart.

  • If I don’t eat them several times absolutely every day, my brain starts to shut down. 
  • If I eat too much of the herbicides and pesticides used in conventional produce, it’s a quick descent into autonomic Hell, with weeks of constant PMS, radiant gin blossoms, and blood pressure that won’t settle down. 
  • I choose the high-end cheddar over the store brand. Want to know what they use to keep the store brand “fresh”? I need to let my bowels continue working, thank you… But aged cheeses provide precursors for the neurotransmitters used in memory and decision-making; when I’m having trouble thinking, sometimes all I need is a bit of good cheese and a couple of hours to absorb it.

I spend hundreds of dollars each month on supplements, herbs and homeopathic preparations, carefully tuned at every purchase to make sure I’m getting the best possible effect for my money. Collectively, they let

  • my mitochondria cope, 
  • my nerves fire, 
  • my brain work, 
  • my body repair itself — reasonably successfully, most of the time. 

I constantly double-check and experiment to make sure I’m not wasting my money, that every one of them makes a real difference. They are not optional, and there is no slack in the system.

I can’t live like a normal person. If I try, I’m dead. It’s not drama, it’s just a fact.

I don’t choose to live like this because I can afford it. I live this way, and do without other things. I think of those who live in houses or flats with multiple rooms, petting the companion animals they can afford to feed, with their feet on a coffee table or rug, drinking out of their own mugs. And the poor things don’t realize how good they’ve got it, but eye my windfall askance and look for something more to be dissatisfied with. It’s human nature. I’ve done the same, back when I could afford to.

Everything I own right now fits into a messenger bag and a carryon; that’s it. There are three boxes and a dive bag stored with a friend somewhere. I know I’ll see the friend again (to the extent one can be sure of anything), but heaven only knows whether I’ll see the stuff, because stuff tends to leave me by freaks of chance. In the end, if it’s not important enough to keep with me, how badly do I really need it?

I’ve learned to be relaxed about possessions. Having the US Postal Service lose thousands of dollars of art, books and paraphernalia at a formative moment in life, can have that effect. All I need is enough to wear, plus the laptop and e-reader. Other things (pots, knives, movies) are useful, but I find them hard to hold onto; they keep slipping away, one way or another.

I know exactly what I’m going to do with that backpay. Every penny will be used. Not spent, not frittered, not idly indulged with. Nothing will be wasted. It should be just enough.

There is still no excess or slack in the system. But as long as there is just enough, I can make it work.

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