I’m not used to having TV. I grew up in Egypt, at a time when you only needed to take off one shoe to count all the TV channels in New Jersey. Didn’t even have to put down your real-sugar-sweetened soda to count the channels in Cairo — none of which were in English.
J is a more normal American, so between his restoration of normality, and my sense of novelty, we’re delighted to have TV again. His ear for BS is too keen to make sitcoms bearable, so we default to true crime, amateur survivalist, and judge shows, where people really are that idiotic and don’t have to pretend.
A couple of days ago, we stumbled across a show about felons on the lam. I think that was on one channel or another from noon to bedtime, except for the news. It was strangely entertaining, seeing how people fool themselves into believing the false lives they create.
For the past two nights, I’ve woken up in the wee hours from dreams of having done something I knew wasn’t quite right, then it turned out the feds really didn’t like, learning that they were displeased, then discovering they were after me (a mortal issue, since I wouldn’t survive a week in prison), then finding myself hiding and running and trying terribly hard to be clever enough to survive in my decidedly impaired mental state.
This morning, I woke up feeling, quite vividly, as if my limbic system — that set of tiny, nervous parts clustered deep in the primitive brain — was huge, red, and pulsing with overstimulation.
I’m no fool. I know how to deal with imaginary brain inflation.
I wrapped a band around it, colored the whole thing a pleasing blue, and gently and persistently cooled and prodded it down to a more reasonable size.
I also massaged the point between my eyebrows that my old acupuncturist used to needle when I was too jumpy to let her stick sharp objects into me.
When I was calm enough to do my brain exercise that stabilizes my ANS somewhat, I worked it like a plowhorse.
Once I had done that, I was actually capable of noticing how tense my system feels, and could mentally reach the lever that makes that inner spring gently unwind.
Then J brought me a nice fresh cup of hot tea in bed.
Then I read this out to him, and he laughed out loud.
As many physicians have noted, treating chronic pain is peculiarly frustrating. Therefore, treating a pain condition as subtle, complex and intransigent as CRPS must be heartbreaking — though it’s never as bad as having it.
Don’t get me wrong
If you say hello and I take a ride
Upon a sea where the mystic moon
Is playing havoc with the tide
Most of us live in countries where there are practical limits on who we can see for care. Since there are few CRPS experts to start with, this tends to put us in tight spots.
So, meeting a new doctor, as many of us have said privately, is a bit like being a bride in an arranged marriage in a backward society*: you have no idea how you’ll get along, but this person is not only going to have a significant role in defining your life for the foreseeable future, but can torture and even kill you without any fear of the law.
It sounds dramatic, but that’s the bottom line. Think about it for a minute…
For one thing, nobody likes being in so vulnerable a position. For another, we’ve all paid the price for some practitioner’s ignorance or intransigence, somewhere along the way. The fears are not theoretical; they’re real and appropriate.
Suddenly the thunder showers everywhere
Who can explain the thunder and rain
But there’s something in the air
Add to that the fact that chronic CRPS tends to hot-wire the fight-or-flight mechanism, and you have to realize that the doctor is facing a situation that requires about a million times more tact and respect than they ever learned in medical school.
Don’t get me wrong
If I’m acting so distracted
And then there’s me.
I used to be an RN, so I can use med-speak fluently and, more to the point, I’ve got the background to understand the scientific material I read when it’s time to explore a new facet of this condition.
I was beginning to suspect that he was at least awake, which is a huge bonus in my book… But I had to have my duckies in a row, just in case.
Don’t get me wrong
If I split like light refracted
I’m only off to wander
Across a moonlit mile
Everything about CRPS goes off in different directions, so studying it is like working with refractions.
I studied up on the nature of the brain oddities that characterize ADD.
Figured out where they overlap with the brain damage caused by chronic CRPS.
Then it was the neurochemistry.
I have the neurochemistry of CRPS pretty well nailed, and found that, again, the overlaps with ADD were astounding.
How much of that awful, crippling fog we call “pain brain” is a treatable form of acquired ADD?
Do we really have to live like that?
I might be great tomorrow
But hopeless yesterday
I’m not so sure any more.
Then I looked at treatment modalities for ADD.
The cognitive-behavioral stuff — like structuring your day, having contingency plans, staying in charge of your emotions, and creating ways to check yourself and to take care of yourself when things go wahooni-shaped — are pretty much identical, though CRPS adds a lot of material about pacing, communicating about functional and pain levels, and managing physical limits.
The pharmaceutical stuff has some interesting overlaps, too.
Aside from narcotic pain control (which isn’t much good to many of us), treatment for CRPS neurochemistry tends to focus on serotonin, norepinephrine (noradrenaline), and dopamine; treatment for ADD neurochemistry tends to focus on epinephrine (adrenaline) and dopamine.
More overlap, or is that just a coincidence? Hah! No such thing, when we’re treating the brain.
So, after traversing my “moonlit (or candlelit) mile” of research, I showed up at the psychiatrist’s office with the following info:
I can’t have Adderall, et alia, because my heart is dicky enough as it is. (Firm nod.)
I could face Ritalin, et alia, but I’m already on Savella, which also boosts dopamine. (He shrugged and said, “Same molecule, different location.”)
After a bit more backing and forthing, he said, “How about Provigil?”
I’d seen a friend get hooked on it, so I didn’t leap out of my seat, but we talked it over. His reasoning was faultless. (Something I almost never say.)
More than awake, he was really engaged with my case. So I took the leap of faith and said I’d try it.
He said he’d supply me with samples of Nuvigil (a longer-acting form) since the maker no longer supplies samples of Provigil. (Pharma companies only provide samples of what they still have under patent. They’re in it for the money, remember…)
Don’t get me wrong
If I come and go like fashion
I had the singular pleasure of going in for my follow-up, dressed professionally for a change, and reporting that:
+ I had enough energy to get outside and move around nearly every day. This means laundry gets done, there’s proper food in the house, and I can get some of that so-necessary exercise.
+ I had enough focus to put together a settlement offer, which the insurance company accepted. (WOOT!)
+ I could change focus at need.
+ I was driving better, thinking strategically and more able to pay attention to what was going on around me at high speed.
+ I could sleep better, because I’d been properly awake and engaged during the day. (OMG!)
– My anxiety was no worse, but when it did kick in, it was harder to get it to chill. That was one drawback, but not a major one.
– Nuvigil tends to build up in my system, until suddenly I can’t sleep at all. It took about 5 days to clear it after that. So now I take half a tablet (that is, about 75 mg) every other day. That works quite well.
+ It’s not perfect — it’s not like being well — but I’m so much closer to being myself that I can actually think about what to wear again. (I used to be kind of a fashion plate, in the intersection of classic, practical, and colorful, with a dash of steampunk.)
I told him, “Love and the relationships I have make life bearable. But being able to think, and be productive, and learn things, and get some work done, THAT’s what makes my life worth living. This is giving me my life back. I’m really grateful.”
If I hadn’t grown up in New England (land of the unspoken), I might have missed the slight lengthening of his spine, the slight lifting of his head, the slight brightening of his face, the tiniest lift of a smile.
For once in my life, a doctor of mine got to feel like a rock star.
It might be unbelievable
But let’s not say so long
It might just be fantastic
I got into the car and drove away on a shiny September afternoon in Pasadena.
On the radio, Chrissie Hynde was belting out,
Don’t get me wrong
If I’m looking kind of dazzled
And it put the seal on everything.
For a moment, I tried to stifle the beaming joy that shot through me. Then sanity intervened.
What I wanted to do was pull over, slap on a headset, and dance on the glittering lawn in front of City Hall, arms wide and the sun sparkling through my starry lashes.
I wasn’t sure the police would understand, though.
Instead, I danced in my car, grinning fit to split my head, bouncing my red SUV to the Pretenders.
Drawing smiles even in LA traffic.
Sometimes, the only right thing to do is dance.
Here’s the whole song. At first, I thought the visual story, with its false leads, dead ends, and triumphant ending, was distracting — then I thought about it for a second… 🙂
* Common sense note: obviously, not all societies that practice arranged marriage are backward. I know too many couples who have an excellent partnership and tons of love between them, who were picked out for each other by their nearest and dearest. It’s not arranged marriage that’s the problem, but those situations where there’s a lack of choice and utter helplessness of one partner. That’s what’s backward.
64% of CRPSers experience significant cognitive decline. Speaking as a member of that majority, I think that sucks. Most people with chronic pain find that they experience the following:
– Confusion: it’s harder to keep track of things like we used to.
– Forgetfulness: forget the car keys? We’re capable of forgetting the car. It’s more than a touch of early onset Oldtimer’s.
– Distractability: I got up in the middle of a sentence when my meditation exercise was playing. I forgot what I was doing netween one syllable and the next and I could NOT make myself lie down again.
– Locked focus: once I do get into something, it can be impossible to tear myself away, even if I need to move or stretch or calm a racing heart. It’s *weird.*
– Memory: Forgetting the car? Sometimes I forget my birthplace. There are random, shifting holes in my long-term memory that I can’t do anything about, except waffle and flannel until the subject changes. Learning anything new that isn’t related to CRPS or writing (which my brain seems to have anchored with industrial grade mooring chains, so far) is pretty much doomed.
– Intense, driving feelings: catch me on a bad pain day and discover a new word for female dog, and it’s not because I want to be like that, but my internal brakes are off and everything feels like the emotional equivalent of flashing neon.
– Oversimplifying/black-and-white thinking: this was one of the first issues we addressed in my functional restoration class all those years ago. Without constant checking, chronic pain makes everything MUCH more intense, and maintaining middle gears is a constant job.
– Poor sleep. Trouble waking up. No duh.
Now, just for grins, let’s look at the list of symptoms for AD/HD:
– Difficulty tracking complex ideas/confusion
– Locked focus.
– Memory issues.
– Intense, driving feelings.
– Oversimplifying/black-and-white thinking.
– Poor sleep. Trouble waking up. Hel-lo!
Is it just me, or is there a wee bit of overlap here?
Classically, ADD (or ADHD, or AD(optionalH)D) is not considered an aquired disease. However, I noticed that the parts of the brain that ARE distorted in ADD are some of the same parts of the brain that GET distorted in CRPS — and perhaps in other types of chronic pain.
We aren’t making these symptons up. We struggle mightily to keep our symptoms under some kind of control, but the worse this particular family of symptoms gets, the closer it gets to impossible to keep it under control.
Fortunately, ADD (et alia) has been treated successfully for years. The meds used overlap with meds used for neuropathic pain, depression and dysautonomia (because it’s all about regulated nerve signaling); the techniques overlap with the techniques for handling CRPS, dysautonomia and chronic pain (see my last two posts); and the therapy follow-up ties into the fact that ongoing counselling is part of the gold standard of treatment for CRPS, and darn well should be for chronic pain.
This is solvable. Let’s get our brains back, because life is too short for this to be allowed to continue.
When I get my scientific studies lined up, I’ll rewrite this for my bioscience blog. Feel free to take it to your doctor.
We can do this.
Meanwhile, borrow a couple of books like “you mean I’m not lazy, stupid or crazy?” and “delivered from distraction”, and see if it doesn’t take a load off your mind to recognize that there IS a way forward.
In 1986, the course of neurologic treatment changed forever when Mark Block, one severely spine-injured young man, chose “imp-possible” over “impossible” and, every day, spent hours imagining how it would be to walk again, imagining his “wires” getting hooked back up again, riding a wave of inner certainty that can only be called a gift.
He mentally rehearsed endlessly. Day after day after week after month.
And then, months into his care, he told the nurse, “Watch this,” and made his foot twitch. The first nurse dismissed it as a spasm. The second or third nurse got the doctor.
The doctor stood over the foot — really close — and said, “Do it again.” Twitch.
One of the great moments in medicine.
Upon discharge, he walked out of the hospital.
Some of the meditations from my pain psychologist are visualizations. They’re made for a mass audience, not for people with chronic illness generally or CRPS specifically, so a certain amount of tolerance with the language is required. (At one point, the narrator says, after a pregnant pause, “Looking good.” Oh for heaven’s sake.)
Fortunately, she’s dropped pearls of wisdom about what’s important in these exercises, so I’m (naturally) mulling over a new set of scripts which attain those ends a wee bit more gracefully. (Of course, the files will be freely available to download.)
The key point is, it’s important to imagine what it feels/looks/smells/sounds like to be really well, really functional, really active, really smart again. Here’s the lowdown:
It’s not just a set of images, it’s a multisensory experience that I imagine as clearly as a good memory.
It’s important to do so vividly and frequently.
It’s important to think of imaginative experience as a good working hypothesis, rather than a hopeless quest or pointless daydreaming.
That’s key. Making it seem real, and not dismissing it afterwards. Over and over again.
That’s how the brain is persuaded — molecule by molecule, link by link, cell by cell — to give up its current structure, which pins so much of the neuro-anatomical, neuro-chemical and neuro-endocrine dysfunction in place.
Then, in many cases — and with suitable support from nutrition, psychological care and physical activity — it’s possible to reverse-engineer a healthier, more functional neuro-setup.
It takes time. It takes dogged persistence. It takes a vivid imagination — which can be developed, if it’s not already there. (Like getting to Carnegie Hall: practice, practice, practice.) Last but not least, it takes a smidgen of luck.
The imaginative experiences, if all goes well, help your neurological structure leap the chasm between what it is and what it should be. It’s an enormous leap of faith to get started, let alone keep going for as long as it takes to rewire such an astoundingly complex structure.
Of course, inner resistance and outer events are liable to leap out and knock us off track, because that’s what they do… and we have to find ways to pick ourselves up and dust ourselves off and get back on track as soon as possible.
It’s a huge job, inside and out — all that leaping.
But it’s not impossible.
I’ve been mulling experiences that I can imagine failing to do with my current body, but remember doing with my healthy one. I think I’ll write them out (word-painting at its most precise) and build really great imaginative experiences to come back to, again and again.
Running; sailing; riding; studying; traveling; writing complex books; lecturing on neurology, pain, and healing — you know that’s what I’m thinking about.
What would your imaginative experiences be? What would you leap the chasm for? What could you immerse yourself in, week after week, month after month, maybe year after year, for the chance of pulling yourself up to it?
It’s an interesting question, isn’t it? I have a feeling my list will change with time. As I sit with these imaginative experiences, I’ll see which ones really keep on giving, and which ones were better in theory than practice — and, of course, I’ll find the one I haven’t thought of yet, which will turn out to be key.
At the moment, the hard part is coming back to reality afterwards. That can really suck. But there are ways to deal with that — instant distraction, for instance — and the more I think it over, the more I think it’s worth it.
On top of my careful eating and constant self-policing… I’ve cut my online time to the bone, to conserve neurotransmitters and wear and tear on my telomeres.
I’m moving to a sunnier flat, to improve vitamin D uptake and exposure to beneficial UV bands.
I’ve gotten a cat, to lower my bp and help stabilize my diurnal cycle. (They get stirred up and worried when you stay up past your bedtime. It’s the cutest form of nagging ever.)
I’m doing my autogenic exercises as often as I can bear to, to bring my baseline level of overdrive down and begin to approach “normal”.
For better or worse, I’m getting more closely in touch with what a “normal” state of relaxation really feels like — and realizing how far from “normal” it is for me.
If I am as close to “normally” relaxed (or “normally” tense — its the same thing) as I can get, I’m nonfunctional.
All I can do is lie there, bathed in the peaceful antitoxins of adequate tissue perfusion and a still mind. Getting up requires dropping that calm, because there just isn’t enough energy there.
I’m far, far too tired to function as a normal person. My very cells are tired — I can feel it when I let down this chemical structure of overdrive and tension. Their very organelles are tired. The vacuoles, I bet, are tired.
Why? I mean, weariness is all very well, but isn’t this a little ridiculous?
Ridiculous it may be, but not irrational or inappropriate. Here’s why, as far as I’ve thought it through.
– For one thing, pain is exhausting. An hour of pain is as wearying as an hour of running, but without the cardiovascular benefit or endorphins. Quite the opposite. And it never really stops.
– Moving the body with degraded muscles is hard work.
– Making decisions and doing the business of life (rent, bills, laundry, shopping) with a brain that flickers on and off… requires a lot of repeated trips and extra effort — also tiring.
– Remember that list of JCAHO-rated crises I mentioned on my last post? That was a sample from the latest in a series of years, each of which was about as harrowingly difficult, in different ways. Truly, I had no idea that so many ghastly things, most far too protracted for Hollywood to use in even their most grueling work, could grind through one measly life.
So maybe I should give my weariness some credit. Maybe I should stop bitching about how I just can’t get things done. Now that I’m trying to ratchet my ANS responses down from the stratosphere, maybe I shouldn’t wonder that it’s becoming hellishly difficult to get off the couch most of the time.
Maybe I should stop obsessing on my characteristic need to be productive.
Maybe it’s finally time to stop ignoring the fact that I’m really damn TIRED, and put my attention on getting more rest.
That might be the most productive thing I could do.
I have to resurrect a set of rules I thought I’d gotten past:
– No internet before noon. – No more than 2 hours daily for all internet activity: email, FaceBook, Twitter, research, posting and illustrating blogs. – This includes surfing on the phone.
I will be moving upstairs to a brighter apartment that’s arranged better for two. J still plans to move in come September, so I’m grabbing the opportunity while it’s there.
For the past several months I’ve been learning to notice and deal constructively with signals from body and brain. Part of the reality of this is, there’s a ton of backlog to sort out.
This is significant, partly due to CRPS and partly to the nature of last year, which was an ongoing festival of upheaval:
– Got SSDI. – Had to save life of same friend twice in three months. – Sold my boat/home. – Moved 3 times. – Travelled for 6 months at a stretch. – Started an important romantic relationship. – Had 2 serious threats hanging over my own life.
It’s not good for the ANS, all this excitement. I’m not personally opposed to eventfulness, it’s just really hard on my regulatory systems. Given similar situations, I’d probably have to do similar things, but it’s time to chill the h#11 out now.
I’m moving and it makes my lizard brain howl — if lizards can howl.
I’m moving upstairs, not far at all. And it’ll be safer — you can’t even find it from the road. It’ll be brighter and quieter. The paint scheme is far more cheery and pleasant.
But I’m moving, and at some level, that’s an absolute… That is, an absolute brain-fogging mess of suppressed fight-or-flight response and irrational despair. It’s seriously altering how well and how long I can think… changing the water level in my current glass, so to speak.
Packing my few things is not a physically imposing task, but moving at all is a brain-crippling one, apparently.
I still have to maintain my care schedule, keep appointments and stay caught up (-ish) on laundry and groceries, none of which is optional.
When my adrenals are under stress, my brain gets quickly exhausted, especially in the morning. According to my old acupuncturist, that’s a classic diagnostic indicator. Cognition is linked to adrenal function, he says.
The thing to do is go with it, and not make decisions or try to parse communications until the whole system has had a chance to wake up and get moving. Thoroughly.
So, out of respect for my brain’s needs, I’ll be spending my mornings playing with the kitten and catching up on my bookshelves, instead of being online.
Oh gee, isn’t that tough 🙂
And when I’ve moved in and gotten the new place under control, with no intention of moving again until I’ve got a “forever home” to go to, I’ll find out just how resilient this brain really is and see what parameters make sense then.
Until then, the online world will go on with, at most, 2 hours a day of attention from me — for research, social networking, web page managing, and posting & illustrating blogs.
Sooner or later, deep and chronic illness (like, oh, let’s take an example at random, CRPS) will bring you face-to-face with your worst demons. It’s only a question of when, and precisely how.
When I came to adulthood, I realized that I felt a powerful need to earn my right to take up space and breathe the air. You’d think I’d be a cringing slave with that underlying attitude, but I wasn’t. I felt I deserved good pay, reasonable work/life conditions, and common courtesy, because that was fair; I just didn’t deserve to live.
Once I could no longer work, but had to fight like mad to live, this was a bit stressful. Like many, I almost didn’t make it. But then, as the very deepest trough began fading into memory, I noticed that something remarkable had happened.
Rewind about 10 years… I was a nurse for eight years, which put me in a critical relationship to others at critical points in their lives. I might have dealt with 10 patients in an hour, but, in the moment that I was dealing with each person, that was the most important person in my life. I may have coded hundreds of people, but every life I fought for, I fought for with all I had.
There were no caveats or conditions: if you were my patient, you had my absolute attention every moment I was with you.
I think this healer outranks me, but you can see how focused he is on his patient. It’s like that.
I found that it’s impossible for me to work hard for someone’s survival, and not come to care about them – no matter who or what they are.
Fast forward to where we started, after the deepest trough, around early 2010… I had spent several years increasingly incapacitated, used up all my money, all my favors, all my savings, and lost a lot of friends – some of them to the Grim Reaper.
I won’t go into the brutal and abusive bureaucracy of California EDD or Oakland Social Security offices, because if you haven’t been through it, you wouldn’t believe me. That bad. Worse, even.
I woke up one spring day, with a strange sense of dawning inside. It took an hour or two to wake up, and to realize that I’d been fighting so hard, for so long, for my own survival, that I had become important to myself.
I no longer felt I needed to earn the right to live.
Ever since that time, I’ve never had a serious case of any kind of block – writer’s block, self-care block, learning block, anything – that lasted more than a couple days, unless it was explicitly disease-related. Then, with this move to a strange area, with no connections, near a city I almost loathe… To get real care, for the first time in years, from seven highly skilled and capable professionals…
I hit a wall. Not just a block, but a huge, massive, precision-crafted, towering, deeply bedded, gateless wall.
Since writing “Frustration at the wall“, I’ve been faking it in the hope of making it. That’s a lot of weeks to keep running up against the same damn wall!
I finally started talking about it – I’m a writer; I’m a woman; I process by words; let’s move on – and began to get unscrambled. Then I had the deeply disconcerting pleasure of having my brain picked apart, cleaned with a dental pick, and neatly reassembled by the deliciously incisive Dr. Faye Weinstein.
I can’t help thinking that the following is going to strike a few chords with some of my lovely readers…
I am, as she said with characteristic precision, “a helpful, compulsively self-reliant minimizer.” Really, why should I trust these people, who wield the power of Gods over what happens to me?
There’s a deep part of me that says “blow that, let’s go hide instead” and off I go, hiding behind advising on Facebook and diving into books and catching up on others’ crises; my condition is not that bad, so my care is not really that important, and it’s not like these people care more for me than their own crap anyway, so I’m on my own really.
My distraction activity is all very worthy, so I needn’t justify it. But, well, so much for the many new things I need to do to put together my own health…
Unconscious reactivity could be the death of me yet.
I said this illness would raise all your demons, even the ones you’ve hammered a stake through the hearts of. It turns out that the squat and fetid cranks who propped up my old conviction that I “don’t deserve to live” are still there, farting wetly and hawking loogies.
With apologies to Heironymous Bosch.
The demons of our earliest perils can shape our responses to major change forever. The trick is to see them for what they are, face them honestly, and put them back where they belong: in the past.
(Easier said… I think a booger just landed in my hair. At least, I hope it was a booger.)
To add to that, with years of excruciating work behind me and more ahead, my old motto of “change or die” doesn’t carry the same weight: Yes, part of me wants to lie down and die. The frantic, aching, endless weariness is beyond description.
But change is more interesting. A lot more interesting. And I only get to do this life once.
Conscious curiosity could be the birth of me yet. With luck.
With a better sense of what I’m doing, I’m preparing to turn and, with tactful and gentle persistence, come to terms with those monsters.
I might as well. I’m going to be here awhile.
Speaking of which…
Marathon training update
After one day to recover from the trip south, I was able to pull off my .8 mile route up and down this hill, and recover enough a few hours later to unpack the car (that’s a lot of steps!) and get some things done. Today was a lot of appointments, which involved walking at least a mile on city surfaces.
On Thursday or Friday, I hope to increase my hill walking to 1.1 or 1.2 miles. We shall see. No more overdoing.
Islam was a thoughtful, neighborly religion. Guests were treated like the loveliest royalty. A blonde 13-year-old girl with a forward figure could (at least, did) walk the streets in daylight fearing nothing more than vile remarks and, in a crowd, a vile grope.
That was the key to life in a tourist country: avoid the crowds.
When terrorist attacks happened, and they were rare then, they happened in crowds. My family was constitutionally adventurous and put off by mob thinking, quite apart from the (really tiny) chance of bombs, so we just did what came naturally and took off on our own.
We saw crowds the way a sailor sees sandbars: a lot of work, and not much fun to get stuck with.
Now, with CRPS, this distaste for crowds has become a deep aversion. The physical dynamic of being in crowds is unbearable: when people bump me unexpectedly, it’s horrific; the noise overwhelms my sensory brain, which, let’s face it, is overworked already; and, of course, my hotwired autonomic nervous system is ready with the fight or flight response… with nowhere to go that isn’t in the crowd.
Breathe. Breathe. Breathe.
I was reading Angela N. Hunt’s book about living while training for a first marathon, and her description of the starting crowd was appalling. For me, it would be like being inside a tiny electric fence, cattle jostling around against the outside, bashing and zapping me mindlessly and endlessly.
Not do-able. Not even think-able.
But that’s just a problem, and problems are meant to be solved.
There are several possible solutions: invoke the ADA and start in my own class behind the crowd; rustle up about five good buddies — preferably large, sturdy types — to run around me for the first half, and be a better fence until the crowd thins enough;
run a different marathon course over open country, with only a handful of others; or abandon the whole thing.
I will go on. If distance is not an insuperable barrier, then neither is willful fear. I’m a woman, weakened, disabled, and rather poor; I have enough to be afraid of. I don’t let it stop me. Why should this? I’ll wear the names of the dead, if it helps. I won’t let it stop me.
I will go on. I’ll find a way to avoid the crowds, in some creative and tasteful fashion.
The grip of the last round of the Yucks started to break right after posting my last. I hate it when I have to go that far to get past a bad spot, but hey, I’ll do whatever it takes to keep heading in the right direction.
Dignity is optional. Progress is not. Words I live by.
My new kitten has changed apparent gender twice, and is back to being a boy kitty — not that it matters in any practical way. I was looking for a name as elegant, good-natured and playful as he/she/it, while treating an upper respiratory infection that made that left eye look like a mouse:
My cat’s mouse
But then, with returning health and strength, his natural energy and violence reasserted itself. He has exactly two gears: 1. Unconscious (or nearly so) 2. Full-tilt, greedy, grasping, and spikily impulsive (as the scratch-marks around my blinked eyelashes attest)
As for my own care, I’m up to 2/3 of my reiki time and 2/3 of my basic qi gong routine, and hope to get some t’ai chi in today as well. This is tremendous progress.
Vegetables are once again a chief component of my diet, thanks in no small part to an enormous bag of frozen “Normandy style” blend from Costco and our local dollar store, which sells cheap organic produce out of cardboard boxes.
I actually did laundry yesterday. Today, I hope to take a shower and — gasp — wash my hair!
I realize only a minority of you will find that truly inspiring, but the rest can have a good laugh… and then think for a minute 🙂
For me, life with CRPS is indeed a matter of tiny triumphs and great goals. For the record, I’m still bound and determined to advance the search for a cure, and yes, I’ve gotten slightly more concrete in my ideas about that… More to come in time.
And now, just for the deliciously hokey yodeling at the end…
Links list: Here is a recap and explication of the links used in this post:
Where you can buy Lee Holden’s excellent beginner routine, which gets more interesting, more useful and more inwardly complex the more I do it: Qi Gong Flow (external site; his work highly recommended)
An excellent blog post on the relationship between tiny triumphs and great goals: New year, new thinking from Elle and the Auto Gnome (external site, very highly recommended)
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:
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.
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!
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.