Category: adaptation
Half-glassed — a metaphor for flexibility
I worked at Borland, which means, I worked with highly capable engineers who were accustomed to doing things right. I once got a very friendly, but very earnest, lecture about the half-glass phenomenon: the point is not whether the glass is half-full or half-empty.
The problem is, the glass was not designed for that amount of water. You either have to fill the glass,
… or use a vessel that’s designed to hold that quantity.
The whole half-glass thing drives them crazy. It’s not a matter of attitude, it’s just bad design!
I love engineers. There’s something adorable about the way they storm the gates of Accuracy, convinced it’s the same as Truth.
At first glance, that attitude looks silly at times. On deeper thought, they’re usually right.
I was thinking about the engineering approach to the half-glass issue, while my subconscious was still bathed in reflections on Rosalie.
I realized that the engineering approach is exactly what those of us with crippling disease have to do: our glasses, our outward lives, were designed to hold a lot more than we’ve got right now.
We either have to build up what we have to put into it, or we need to use a smaller glass. A significant disparity between what our lives can hold, and what they do hold, is depressing. They need to match up better.
Rosalie alternated, and I think all of us with chronic disease (and determination) do that as well. Sometimes we can build ourselves up, and expand what we can put into that glass; sometimes we adjust our expectations and commitments, making the glass smaller so that the contents fit.
I like this image, because it reminds me that I can do either thing. When pushing against my limits doesn’t work, when I really can’t get another drop of water into that glass, I can pull back my expectations and switch to a smaller glass.
By now, I have mental cupboards full of wildly mismatched drinkware – a glass for every occasion, for every level of function so far.
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| The one on the right is for when my hands don’t work. |
“My cup runneth over” takes on a new meaning now, doesn’t it? When it does, I’ll reach for a bigger glass.
Rosalie’s gold
I stayed in the little den next to her bedroom, overlooking the pool. Her house was built in the 50s, when her neighborhood was inexpensive and remote. It has an endless view across the whole valley of Los Angeles.
She was a spring chicken, only 83 years old. She had already had two back surgeries to fuse vertebrae, and scooted around – with characteristic energy – in the distinctive crow-backed shuffle of post-fixation chronic back pain.
About five years later, my CRPS journey started. Rosalie was my first model of how to handle increasing pain and disability with a degree of grace and poise. Whenever I came to visit my stepmom or her mother, I’d see if Rosalie’s and my schedules would allow a visit. In all those years, I don’t think she failed to raise a smile more than once or twice, despite some brutal trials.
She had several more surgeries, implanted devices, physical therapy, and she swam laps in her pool whenever she could possibly manage it, inviting whoever came over to swim with her to have a glass of wine and tonic water (or gin instead of wine, for my stepmom) afterwards.
She kept love in focus: for her offspring and her dear friends, she had a seemingly bottomless well of love and regard, regardless of the vicissitudes of life and relationships.
She was always herself: whatever her opinion, and whether or not you agreed with it, she would let you know. No energy and no words were wasted on making things seem nicer than they were. You never had to wonder what her agenda was. And she managed that without ever being pissy or the least bit mean. Conservation of energy, including emotional energy, is a big issue for pain conditions, because pain is so exhausting; she didn’t waste a drop.
Yet she was famous for the radiancy of her outlook, not to mention of her smile. As soon as she had answered the question, “How are you?” with customary honesty, she visibly put that aside, turned her bright eyes on her visitors, and got them talking about more interesting things. She kept her focus where it belonged: on the rest of life.
As I said at her memorial service yesterday, she always looked for the nuggets of gold, whatever else was going on. She always looked for a way forward, whatever held her back.
If you’ve read this blog for any length of time, you know that I hardly ever write about anything until I’ve found the nugget of gold. You know that I always look for a way forward, whatever holds me back.
I can find this in myself, in large part because Rosalie gave me a living, breathing, occasionally querulous but never unfair, always loving, always real example of how to do it. I need those living models. I can learn only so much in theory.
This is real life. And sooner or later, it ends. I’m slightly bowled over by this intensely personal realization that the true radiance of a life can outlast the grave. Rosalie’s radiance is with me still, reflected off these nuggets of gold.
Unexpected adventures with the rent
I’d better start scouting trails and footpaths around here. I’m going to need more options soon.
As I calm my breathing in preparation for my autogenic exercise (more on that later), I have to admit that I had some angst to work off, and that probably had something to do with the pace I kept up.
Last night, I realized I’d lost my ATM card. I have one bank, one card, and one checkbook. … Er… had…
The card was gone.
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| Suuuuuuuuuucks. |
Welcome to My Brain on CRPS!
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| To be completely apt, these should be thoroughly scrambled. |
I went to the landlady’s bank to see if we could do a wire transfer.
Turns out they’re closed on Wednesday.
I called a different branch and asked if they could.
No, not without an account of my own.
I asked if I could open an account with a wire transfer.
After 20 minutes on hold, it turned out that I could only open an account with cash or a check.
Rather than repeating myself, I said, “You realize that does me no good.”
I called my bank (a local savings bank) in Massachusetts. They were pleased to tell me that someone had called in my missing card and it had been cancelled promptly. 2 weeks to get another one.
They couldn’t do a wire transfer because they’re rather old-school, and I hadn’t gone into a branch and filed the appropriate form in person.
But — and this is why I stay with them — they didn’t end the conversation there.
After exploring several possibilities, which turned up as dead ends, I thought of Cougar, one of my angels (a word with specific meaning.) He bears a passing resemblance to a slimmer and semi-shaven Jerry Garcia..
| A recent photo by yours truly. |
But, more importantly, he takes my mail. Why?
In case you hadn’t noticed, I move around a lot. (I’m looking for a place that has an affordable cost of living, good soil, first-rate medical care, and no extra pollution or radiation, and one day I’ll find it.) I’m here in California for awhile for medical care, BUT, no matter where the rest of me goes, my mailing address remains the same.
The benefits are tremendous:
- Not only is my steel-sieve brain spared the affliction of changing my address every time I move,
- Not only are my ridiculous paws spared the trouble of wrestling with envelopes and handling papercuts (a task which cougar claws are apparently well-adapted for),
- But my memory and cognition issues get a real break from having to deal with pieces of effing paper. I have developed a mental block around dealing with pieces of effing paper, so I get them into softcopy as soon as possible.
Or, rather, most of the time, Cougar does… Because he doesn’t just take in my mail, he scans it in and sends me softcopy of anything I ask him to open. This means I have COMPLETE RECORDS of everything I need to keep track of.
He’s the Magnificent Mail Mage, and I’m grateful. Take that, Pain-Brain!
He’s my current Cash Carrier, now. The management staff at my lovely little bank have agreed to work with him as my designated agent, and will provide him with the cash I request — which he will then send to me via Western Union, so I can take care of business here. And with it, I’ll pay rent, open a bank account locally, and try not to let this happen ever, ever again.
Meanwhile, it’s time to get my heart rate down from the clouds and that strangely full feeling out of my tissues. Easier said…
While the excitement is over for the moment, I have a vivid memory of the stress-tracking line on the biofeedback machine, and how bloody hard and bloody long it takes to get the level to drop after it goes up over something as small as one giggle.
This was no giggle. In fact, it was several hours of no giggle. None. A totally giggle-free period.
I found it stressful.
The walk helped. And I hope — when I find some good forest trails to explore — to spot some wildlife.
Meanwhile, I’m off the hook for laundry and shopping. It all has to wait until tomorrow. Bonus!
Everyone should have a little cougarosity in their lives…
Posture matters, across species
I lived in a dog-friendly marina. – Trust me, this is relevant.
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It’s not just about the scenery.
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I saw dogs in every degree of getting along — or not.
I saw the active posture of dogs who were used to plenty of food and care…
and dogs who clearly weren’t.
This was interesting to me as I was coming out of a period of being thugged on by every force outside myself that had a duty to care for me. Being, not only neglected, but frequently tormented and abused in response to most of my efforts towards survival and care, left me very nervous indeed.
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| Not good for the brain. Or anything else. |
I was having trouble with my posture, and – limited by impaired kinesthesia (the sense we have of where our body is in space) – I was working out exactly what the trick points were.
– My low back was in a tight sway, sticking my stomach and butt out egregiously. I lost over an inch of height to that sway in my back.
– I recently realized that, when I fall back in this posture, my abdominal muscles are braced outward. I’m not slack in the belly; the muscles are braced for an incoming blow!
– My neck was hunched against my shoulders. This was funny because I did used to have a bit of a weightlifter’s neck, short and thick; but that was many years ago… when I lifted weights.
– My tailbone was curled in tight, which I only realized after my physiotherapist at the time taught me to straighten it out as a way of releasing tension on the nerve “sleeve.”
– The points of my shoulders were rotated inward. I attributed this to an effort to ease the nerve opening through my shoulders, but that doesn’t actually make sense.
All of these things reduced effective nerve flow to my limbs, shortened the wrong muscles, limited blood flow to where I needed it most, and reduced my capacity for physical exercise.
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| And you can see how happy it makes me! |
Since activity is key to managing CRPS and keeping the autonomic nervous system under some kind of regulation, this is actually a huge problem.
Good posture is not about vanity, it’s about feeling better, being stronger, hurting less, and surviving tolerably well.
Watching all those dogs running around and deciding whether to let others sniff their butts,
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| You’re not imagining things: the pit bull is missing a leg. |
I realized exactly what my posture looked like: a dog in a hostile area, not wanting to fight, but protecting its spine while bracing for blows. Always ready to snap into action. Never knowing when things will go sour, but pretty sure they soon will.
That’s what those years had brought me to. It was a reasonable response, but not useful.
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| This is what’s really going on when I fall back into that posture. |
I’ve managed to explain this “braced dog” image to my current physiotherapist, who’s wonderfully willing to work with my rather original views. He comes up with ways to tell my body how to stand/sit/move like a calm, alert animal, instead of one that’s braced for the next fight…
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| I can’t do anything about the 3 extra cup sizes this endocrine dysregulation caused, but my back and shoulders hurt less anyway. |
And I remind my too-nervous nervous system that a calm dog can snap into a fight about as fast, but tends to find far fewer of them.
In the meantime, relaxed animals have a lot more fun.
Postscript on self-imaging
Nearly every time I see pictures of someone in regard to posture or movement explanations, it’s someone really fit.
Now, really. Is that who needs to know?
Much as I loathe looking at myself from the outside, using my own image here is preferable to the implicit lie of using others’ figures. So here I am, warts (so to speak) and all.
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| /shrug/ Could be worse. |
Waiting
It’s always a bit of a circus. As I said to the lab tech, “I used to be a trauma nurse. What would be the fun of being an easy stick?”
This time, I had the joyful opportunity of having the first lab tech assess my veins and go find a better vampire without even poking me first. His hands were actually shaking by the time he left.
All I could do was laugh to myself. I used to have hosepipes for veins. They were still leathery, full of valves, and inclined to roll, but with a sharp needle and good technique, you could nail ’em with your eyes closed.
Now it takes 5 minutes with the warm pack (hot water in a blue glove) and the sharpest needler in the house. She got it in one.
In thematically related news… I’ve been essentially incommunicado since I moved into the new cabin. Internet is supposed to come tomorrow and AT&T has knocked $50 off my bill for not providing service yet and having terrible communication with me (losing notes, calling back the wrong week, trying to send me on wild goose chases) when they do get through.
Every effort to do anything other than nest — carefully, gently, and in small controlled increments of effort — seems to take 10 times the effort it should. Not two or three times. 10 times.
All I can do is laugh to myself… and, when necessary (such as when someone’s looming over me with a sharp instrument and a purposeful expression), sitting firmly on my perpetually hair-triggered fight-or-flight response.
As I said to the same skillful lab tech, “I have good doctors, and I’m finally getting lab tests, PT and good care.”
This is why I protect my mental faculties so vigilantly. They let me assess the real risk, the real effort, the real impact of the moment, so I can talk the CRPS-triggered responses down out of the sky.
And then wait for my system to recover.
I think I’m ready to go now.
Pain rating scales that describe reality
I got to the usual 1-10 pain rating scale and my gorge rose. That’s so irrelevant to my life now that I can’t even throw a dart at it.
Between my self-care strategies and spectacular mental gymnastics, the level of what most people would experience as “pain” is a secret even from me, until it’s strong enough to blast through the equivalent of 14 steel doors, each three inches thick. At that point, the numeric level is off the charts.
What’s useful and relevant is how well I can cope with the backpressure caused by the pain reflexes and the central and peripheral nervous system disruption this disease causes.
You can read on without fear, because for one thing, it’s not contagious, and for another, your experience of pain — whether you have CRPS or not — is uniquely your own. This is mine, as it has changed over the years…
Step 1: Acute CRPS, with otherwise normal responses
My first pain rating scale, just a few years into the disease’s progress, was suitable for a normal person’s experience. My experience of pain was still pretty normal (apart from the fact that it didn’t know when to stop):
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Mental impact
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Physical changes
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0
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No pain at all.
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1
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Hurts when I stop and look.
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3
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3
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Neither looking for it nor distracted.
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5
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5
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Noticeable when concentrating on something else.
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Nausea, headache, appetite loss.
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7
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7
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Interferes with concentration.
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Drop things, grip unreliable.
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8
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8
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Difficult to think about anything else.
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Trouble picking things up.
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9
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9
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Makes concentration impossible.
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Interferes with breathing pattern. No grip.
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10
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Can’t think, can’t speak, can’t draw full breath, tears start – or any 3 of these 4.
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Unrated even numbersindicate a worse level of pain than prior odd number, which does not yet meet the criteria of the following odd number. Note that weakness is only loosely related to pain. I drop things and have trouble picking things up at times when I have little or no pain. However, as pain worsens, physical function consistently deteriorates.
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Notice how the scale ties the rating numerals to physical and mental function. This is crucial, for two reasons — one personal and one practical:
– Personally, I can’t bear to let misery get the better of me for long. Tying the numbers to specific features keeps the awful emotional experience of pain from overwhelming me. Making the numbers practical makes the pain less dramatic.
– Practically, in the US, health care is funded by a complex system of insurance. Insurance companies are profit-driven entities who are motivated not to pay. They don’t pay for pain as such, only for limits on function. This makes my pain scales excellent documentation to support getting care paid for, because MY numbers are tied to explicit levels of function. (Hah! Wiggle out of that, you bottom-feeders.)
Step 2: Early chronic CRPS, with altered responses
My next was upwardly adjusted to describe learning to live with a higher level of baseline pain and noticeable alterations in ability:
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Mental impact
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Physical changes
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3
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3
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Neither looking for it nor distracted. Forget new names & faces instantly.
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Cool to touch @ main points (RCN both, dorsal R wrist, ventral L wrist). Hyperesthesia noticeable. .
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5
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5
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Interferes with concentration. Anxiety levels rise. Can’t retain new info. Can’t follow directions past step 4. May forget known names.
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Nausea, headache, appetite loss. Grip unreliable. Hyperesthesia pronounced. Color changes noticeable.
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7
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7
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Absent-minded. White haze in vision. Can’t build much on existing info. Can follow 1 step, maybe 2. May forget friends’ names.
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Drop things. Cold to touch, often clammy. Arms & palms hurt to touch.
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8
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8
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Speech slows. No focus. Behavior off-key. Can’t follow step 1 without prompting.
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Can’t pick things up; use two hands for glass/bottle of water.
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9
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9
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Makes concentration impossible. Hard to perceive and respond to outer world.
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Interferes with breathing pattern. No grip. Everything hurts.
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10
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Can’t think, can’t speak, can’t stand up, can’t draw full breath, tears start – or any 3 of these.
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Notice how specific I am about what general tasks I can complete — following instructions, lifting things. These are the fundamental tasks of life, and how do-able they are is a fairly precise description of practical impairments.
Step 3: Established chronic CRPS
And my third changed to describe living with more widespread pain, a higher level of disability, and — most tellingly — a physical experience of life that’s definitely no longer normal:
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Mental impact
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Physical changes
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3
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3
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Neither looking for it nor distracted. Forget new names & faces instantly.
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Cool to touch @ main points (RCN both, dorsal R wrist, ventral L wrist, lower outer L leg/ankle, R foot, B toes). Hyper/hypoesthesia. Swelling.
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5
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5
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Interferes with concentration. Anxiety levels rise. Can’t retain new info. Can’t follow directions past step 4. May forget known names.
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Nausea, headache, appetite loss. Grip unreliable. Hyper/hypoesthesia & swelling pronounced. Color changes. Must move L leg.
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7
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7
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Absent-minded. White haze in vision. Can’t build on existing info. Can follow 1 step, maybe 2. May forget friends’ names.
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Drop things. Knees buckle on steps or uphill. Cold to touch, often clammy. Shoulders, arms & hands, most of back, L hip and leg, B feet, all hurt to touch. L foot, B toes dark.
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8
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8
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Speech slows. No focus. Behavior off-key. Can’t follow step 1 without prompting.
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Can’t pick things up; use two hands for glass/bottle of water. No stairs.
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9
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9
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Makes concentration impossible. Hard to perceive and respond to outer world.
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Interferes with breathing pattern. No grip. No standing. Everything hurts.
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10
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Can’t think, can’t speak, can’t stand up, can’t draw full breath, tears start – or any 3 of these.
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The CRPS Grading Scale
The other scales measure the wrong things now. Asking me about my pain level is bogus. It would have the asker in a fetal position, mindless; is that a 5 or a 10? Does it matter?
I need to avoid thinking about depressing things like my pain and my disability. I focus pretty relentlessly on coping with them and squeeezing as much of life into the cracks as possible — on functioning beyond or in spite of these limitations.
The fourth rating scale is much simpler than its predecessors. It’s based, not on level of pain or disability, but on the degree to which I can compensate for the disability and cope past the pain. Therefore, this rating scale remains meaningful, because it describes my actual experience of life.
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Mental impact
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Physical changes
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A. Coping gracefully
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(baseline)
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Track to completion, baseline memory aids sufficient, comprehend primary science, think laterally, mood is managed, manner friendly.
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Relatively good strength and stamina, able to grasp and carry reliably, knees and hips act normal, nausea absent to minimal, pulse mostly regular.
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B. Coping roughly
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B
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Completion unrealistic, extra memory aids required and still don’t do it all, comprehend simple directions (to 3-4 steps), think simply with self-care as central concern, unstable mood, manner from prim to edgy to irritable.
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Moderate strength and stamina, grip unreliable and muscles weaker, balance goes in and out, knees and hips unreliable, nausea and blood sugar instability alter type and frequency of intake, occasional multifocal PVCs (wrong heartbeats) and mild chest discomfort.
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C. Not coping well
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C
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Hear constant screaming in my head, see white haze over everything, likely to forget what was just said, focus on getting through each moment until level improves, manner from absorbed to flat to strange, will snap if pushed.
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Muscle-flops, poor fine and gross motor coordination, major joints react stiffly and awkwardly, restless because it’s hard to get comfortable, unstable blood sugar requires eating q2h, bouts of irregularly irregular heartbeat.
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D. Nonfuntional
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D
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Unable to process interactions with others, suicidal ideation.
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Unable either to rest or be active. No position is bearable for long.
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There is no Grade F. Did you notice that? As long as I have a pulse, there is no F, which stands for Failure.
In the words of that divine immortal, Barrie Rosen, “Suicide is failure. Everything else is just tactics.”
So what’s the point of all this?
Documenting our own experience in terms that are meaningful and appropriate advances the science. The treatment for this disease is stuck in the last century in many ways, but that’s partly because it’s so hard to make sense of it. The better we track our experience with it, the better outsiders can make sense of it.
Since studies, and the funding for them, come from those who don’t have the disease, this is the least — and yet most important — thing that we can do to improve the situation for ourselves and those who come after us.
This isn’t a bad snapshot of the natural history of my case, either. Understanding the natural history of a disease is a key element of understanding the disease. Imagine if we all kept pain rating scales, and pooled them over the years. What a bitingly clear picture would emerge.
I’ve never sat back and looked at all of these pain rating scales together. It’s certainly an interesting mental journey.
Important legal note: These forms are available free and without practical usage limitations; to use, alter, and distribute; by individuals and institutions; as long as you provide free access to them and don’t try to claim the IP yourself or prevent others from using it. All my material is protected under the Creative Commons license indicated at the foot of the page, but for these pain scales, I’m saying that you don’t have to credit me — if you need them, just use them.
Bien approveche: may it do you good.
Pushing back on neuroplasticity
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from the first refusal to cut pain signals off…
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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…
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to the deeper remapping and rewiring that alters cognition, disrupts memory formation, screws up autonomic signalling, knocks endocrine and digestive function out of whack…
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and so forth.
It’s important to stay on top of the brain, so to speak.
Having said that, it’s not completely reciprocal, nor is it ever under perfect control — unlike a good trapeze act.
- neurons hook up, and a connection (or association) is made;
- if the connection gets used (or the association is allowed to stand), more neurons hook up to make it stronger;
- once enough neurons have hooked up, the connection becomes like a good road;
- and the thing about good roads is, they get used, even if they’re used for something odd.
- 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…
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| Only constructive connections, please. |
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| Egrets make great distraction, especially in funny socks. |
Any such thing as "just another day"?
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.
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:
Think zebra
- 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.

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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