To cut a long story short, I wound up with insufficient medication before my next pain doc appointment, and had to cobble together my full dose by using 3 smaller-dose tablets. Periodically over the last month, I’ve been peering quizzically into my bottle and wondering if all those little pills were going to last long enough.
Late last week, I finally had few enough that I could count them. (Due to perceptual issues, looking at a lot of little identical objects makes my eyes swivel, and I can’t keep track of them, even if I pull them out a few at a time. They appear to dance and swim without any help.)
Well, I had a problem. I couldn’t parse what to do about it because I didn’t know who to ask. My pain doc had been a bit more high-handed than usual at my last appointment, so I didn’t expect sympathy there, especially as it implied his math was wrong. I knew my GP would feel understandably uncomfortable prescribing a med he didn’t know well and didn’t normally use, which was normally prescribed by a high-flying specialist in a narrow discipline. That’s a lousy position to put a GP in.
So, regardless of the record heat and shocking floods elsewhere, New England has been cooler than usual, perpetually cloudy, with the Spring rain pattern (3 days and nights of constant rain, one and a half days of sun, a day or two of mostly clouds, 3 days and nights of constant rain, rinse and repeat.) This does tie in — really.
The reason it ties in is because summer gives me my recovery time, which involves sun and warmth and outdoor activity. 3 months of sun, warmth, and outdoor activity is what makes me strong enough to endure a New England winter.
It was so gloomy and chilly this summer, we dug up the money to go to California to recharge our bodies’ batteries. That didn’t go according to plan at all. As some of you know, I had viral meningitis from the day after we landed to 2 days before we left.
So, not much recovery, just a whole heaping helping of extra damage to recover from!
Then, of course, I had a relapse 10 days later, just in case I was getting too perky.
This summer has left me with a brain that’s just not up to par. So, rather than doing my usual thing of targeting the issue and parsing its components and figuring out what solution solves most of the elements, I … froze.
I started cutting the third of the 3 little pills in half, and taking two and a half, so I could buy a little time to think. Since that works out to my normal summertime dose, I didn’t question it much. It occurred to me, just as I’m writing this, that it has really crippled my ability to think, so that was not my usual problem-solving level of skill. Sigh.
I honestly can’t remember how I wound up on the phone with my doctor’s office on Friday. Wait, after 5 minutes’ cogitation, I do: I hadn’t heard from referrals my primary doc was supposed to have written 2 weeks before. Usually right on top of things, he had documented that he intended to make the referrals, but forgotten to enter the orders to do so.
The compassionate office lady asked how I was, and it wasn’t until then that I said, “Actually, I’m kind of in a bind,” and explained about the meds. To my complete lack of surprise, given how things have been going, it turns out my primary doc is on vacation this coming week. She left a note for whoever’s covering for him.
Since then, of course, I’ve been trying to work out whether I should call during the weekend, when coverage is even weirder and less accountable, or wait until Tuesday and the first day of business this week, and try to coherently answer the question of why I didn’t call sooner, and hope and plead to get my meds from someone who doesn’t know me and is working too hard to feel for one more sad case.
So … I’m froze.
Meanwhile, my feelings and my disease-driven propensity to worry paralyzingly, are all honed to a ridiculous edge. Once my pills get past the cannon-ball feeling in my stomach (almost past the half hour mark; 15 minutes to go) I’m going to do an hour of meditation, which I expect to roughly track the pattern of the meditation I did during the meningitis episode: 20 minutes of pure inward flail, breathing quietly while my mind and emotions just went off like a carton of firecrackers spilled on a brush fire; then, once that calmed down, my thoughts chased each other like frantic squirrels for another 20, not slowing appreciably until the last 2 or 3 minutes; then 10 minutes of one or two issues or ideas holding fairly still, allowing me to turn it over until it’s transformed into something peaceful by the pure attention; and then the rest, finally, gradually, moving into a pure and floating calm.
They say that one should meditate for an hour every day. If you don’t have the time for that, make it two hours. I hold this as a constant goal. Sadly for me, I can normally only push myself to sit down and shut up like that when things are so bad all I can think to do otherwise is scream.
I need to work on that.
This was going to be the year I learned to meditate and do t’ai chi pretty much daily, no matter what level of peace and calm there was in my life. I’m embarrassed that, even at my age, I still seem to need some chaos to let me bring enough pressure to bear on myself that I’ll do these key self-care activities at all.
Something to mull over in the contemplation stage of some meditation!
I’m working on a novelette about the meningitis madness of last month. Until I get it done, let me entertain you with another tale of traveling with pain.
About five years ago, I fled an intolerable situation in California and, being pretty sure I was in my last few months of life, went back to the Northeast to visit with my nearest and dearest and stay until I mended or died, whichever it turned out to be. In short, I was not at my precarious best. I’d thinned my belongings down to what would fit in a suitcase small enough for me to handle, plus a spare set of “smallclothes” and meds in my laptop bag.
I flew into JFK airport and made my way (eventually) to a New York suburb down the street — and downmarket — from Scarsdale. I thought flying across country was hard work. Leave it to New York City (and environs) to adjust that perception. Anything worth doing is worth doing BIG!
It started with getting my luggage — the carousel changed 3 times. It had my supplements and laptop power cord in it, so there was no leaving it behind, as there was no knowing where it would wind up if I abandoned it and tried to get it tomorrow — it could land in Athens stuffed with either explosives or maple candy, or in the garbage scow on the Hudson stuffed with random bits of unsuccessful mobster; the contents would be more oddly distributed still. I’ve been flying into and out of JFK since the early 1970s, and I never leave my luggage uncollected there.
Each time a new carousel number was posted next to our flight number, herds of wilde travelbeests lumbered across the linoleum plains, flowing around eyots of irrelevant carousels and travelers from other flights, who huddled against treelike pillars and carousel islands in order not to be trampled underhoof.
I limped gamely after, unwilling to leave my luggage to the mercies of the feral crowd. We ultimately wound up back at the first one, which somehow didn’t surprise me.
I managed to get my bag unhooked from the carousel lip, but no further. It was just about to throw us both into the guy next to me, when he kindly popped it out and dropped it neatly next to me, with a brisk nod. Then went back to field the hefty steamer trunk of the twitchy Givenchy skeleton behind him.
I debated taking the bus to Penn Station ($3.50) vs train-shuttle (unstated) to the shuttle-bus($1.50); figured train-shuttle would be free, as my training in UI & signage, and casual acquaintance with the law regarding same, made it absolutely clear that prices must be stated up front. No price stated, ride is free. Sweet!
Of course, every other international airport I’d been to in the past 20 years provided free transport within the airport complex. This was New York, where you’re charged even for the gum on your shoe, so I was a little wary, but I was also exhausted and poor.
Got off at the end of the train-shuttle, pulled my wheeled suitcase to the exit door, and there found a sign stating it cost $5 to exit the train-shuttle station.
Stared at sign for 2 solid minutes, flies drifting in and out of my open mouth. SO. BLEEPING. WRONG.
Briefly considered going back, but too tired. I gave up my prospect of a little “real” food in the city to get out of the shuttle track area (why did I think $5 would buy anything in NYC?), and got to the shuttle bus.
The leaderboard read, “Penn Station.”
I asked the driver when the bus came that would take me to Grand Central. He said, “This bus goes to Penn Station.”
I asked again when the bus came for Grand Central Station, and the bus driver again said, “This bus goes to Penn Station.”
I said, “I understand that. I’m wondering when the bus is that goes to Grand Central.”
“This bus goes to Penn Station, lady.”
It finally dawned on me, as he was about to close the door in my face, to ask if there WAS a bus to Grand Central from the airport.
“Nope. This is the only shuttle into the city.”
“Nope. You have to get from Penn to Grand Central yourself.[I interjected, in shocked squawk, “STILL?” He nodded.] You can take a bus or the subway, but with your luggage, you’ll want to take a cab.”
I hitched up my jaw and hauled self and luggage in. He almost waited until I was seated to take off.
A teenager tripped over my suitcase on the wide, spacious, brightly-lit shuttle-bus. My suitcase came up to mid-thigh and was HOT PINK. Somehow, he walked right into it and went down with it — wrenching my wrist and elbow of course. After looking around blearily, initially wanting to blame someone other than his own clumsy butt, he very sweetly picked up all 38 pounds that encompassed every object I owned other than the clothes I had on, which was more than I could do, and put the handle back in my hand. I re-wrapped it with the scarf I used to cut the vibration and, with an added loop around my forearm, provide some stability against my weak grip. But, in case of other spaced-out passengers, the loop didn’t go back on until I was off the bus… at Penn Station.
Because it’s NYC, where a good conflict should never be resolved but should be handed down for posterity, they have NEVER IN THE PAST CENTURY figured out how to link up the northbound train station with the southbound train station, despite the fact that the trains are the lifeblood of the city and, on top of that, millions of customers travel from south of NYC (Baltimore, Washington DC, and points south) to north of NYC (from White Plains to Buffalo, all of New England, and Canada) every. freaking. year.
The JFK shuttle comes into the southbound train station, Penn. I needed to leave from the northbound train station, Grand Central. It was up to me, as it has been up to every single individual traveler in the past 100 years, to figure out how to get from provincial-sounding Penn to the arrogantly misnamed Grand Central. Let’s review my choices:
A cab was out of reach, especially as I’d just blown $5 on a ride that should have been free.
The subway meant more confusion, bumping, and stairs (the elevators and escalators are always out of order or being fought or pee’d on, sometimes both at once) than I could even think about without screaming.
The bus required finding secret, unmarked bus stops where they WILL ignore you if you’re off by a few feet and, I’m not kidding, either one or two transfers for one of the most essential routes in the city. There was no direct bus between the two major terminals of this train-dependent conurbation.
I can’t make this stuff up!
I decided to haul myself and my hot-pink suitcase the X blocks of crappy city sidewalks to Grand Central. “It’s not that far” — famous last words. “I’ve done it before” — 20-odd years ago, pre-injury.
I checked the map, got a sighting on the sun, went one block to read the street sign and check my direction, turned left, and marched off — for about 5 steps.
There were many adjustments to work out: soft tethering scarf, arm used (eventually, both), length of stride, and what to focus on — the directions, the pedestrians who mostly swerved nicely, the truly awful surfaces I had to traverse. The surfaces won in the end, out of sheer necessity. The occasional bozos, who thought I could steer better than their unladen selves, bounced off of either me or my sharp-edged case, spitting vile things without drawing breath. I kept on, pushing through the yawing wobbles the collisions caused as I pitched and heaved steadily onward.
Dear heavens, it was arduous.
Halfway there, dripping soot-laden sweat and hauling my grimy, now ashy-rose suitcase which had accumulated about 15 pounds of pollution by then, I found myself heading towards a cluster of burly cops standing between a parked cruiser half in the road with its butt half blocking the driveway, and the loading dock behind.
They gave me that dry, supercilious stare that city cops learn in the Academy. It says, “For our comfort and convenience, we’re deciding whether or not to kill you right now. Don’t try to make our day.”
I thought about that for a moment, trudging along with my case baulking at the bad paving, yanking my swollen wrists around like a fighting tarpon. I glanced at the path around the cruiser, involving 2 curbs, bad patching, and a pothole; quite apart from the random, fast, and dangerous traffic in the street. Definitely worse than the sidewalk.
I realized what I looked like: a grubby, chubby, oversocialized, White middle-aged female, evidently too poor for a cab. Very low on the food chain.
I realized I didn’t care.
I flashed back to the Jaguar my friends used to call me.
It was a youthfully arrogant and vigorous period of my life, when an off-duty cop in a bar in Manhattan wanted me to tie him up and beat him black and blue, because he’d really enjoy that. (I refused ever so courteously — which went curiously with the well-worn motorcycle jacket and wash-and-wear lack-of-hairstyle — and walked away, eyebrows twisting at the sheer novelty of the experience.)
I refused to walk around into the street. It was insane and vile to expect it, when I could clearly hardly put one foot in front of the other and was towing my life with battered arms.
No. Not playing that game.
One tactic of successful women:
If the game is rigged against you, change the rules.
This clot of cops got the twin-engined, diamond-drill stare from under my beetling brows, the burning power of pure womanly disgust and exasperation doing the work of 5 bodyguards and a million dollars.
New York’s Finest peeled back from my path like an amateur drill team, stumbling slightly and eyes wide.
Yeah. That was more like it.
I heard their startled and admiring voices behind me. I almost smiled. I wondered what they’d say if I turned around and demanded a lift. It was almost worth the effort, but turning back was unbearable, even for that entertainment — so I kept on.
NYC cops weren’t so racist then; it might have worked even if I weren’t White. The good old days.
Stumbled into Grand Central, at last.
After dropping my sweat-sodden self onto a bench until my breathing evened out, I got up on pure willpower (my legs certainly didn’t have much to do with it) and wobbled up to the ticket window (One of those funny alcoves on the right.)
Despite the unmitigated chaos and relentless interference of my cross-City odyssey until now, I had the pleasure of getting good instructions, delivered clearly; the right ticket to my destination; explicit directions to exactly the right track and the right train; and which cars to avoid — “The drunks use that one, and it’s never clean.”
I fell into the seat nearest the door, then slid to another when someone dumped a heavy bag which fell over onto me, edge first of course. I let the bag lie and he eventually picked it up.
A lovely young woman, the quintessence of perfectly-formed and perfectly-presented modern American beauty, got on in one of the suburbs, sat down across from me, and gave my weary, grubby, chubby, middle-aged self the sweetest and most open smile. I did my best to repay such sweetness from out of the blue with the best smile I could dredge up in return, and a nice word.
I got off at the Scarsdale stop and there was a slight pause in my progress as I resisted the boisterous flow of commuters scenting their stables. Clutching the rail that had kept me from being swept under, I saw a car door open. In a few steps, I fell off of the train station and into the arms of my old friend.
I asked her later why such a beautiful, clean, discreetly made-up, perfectly turned out young woman would greet such a gargoyle’s appearance with such sweetness. My friend replied, “I’m not sure how to tell you this, but it’s envy. You can afford to let yourself go [finger-quotes.] She can’t. She wishes she could be like you.”
It finally penetrated what a trap the relentless and expensive looks-slavery of upscale New York is for women. My lifelong sarcastic envy of “Barbie dolls”, not to mention “Givenchy skeletons”, died on the spot and I was glad I’d added the nice word. Anyone who could envy me at that point was in really bad shape.
The cross-country flight was originally going to be the funny story I told to amuse my hostess — delay, changed gate, dashing around in a wheelchair, turbulence, sick babies, nervous lady with long arms and huge rings taking up the aisle and risking the eyesight of those nearby — but it really paled next to the story of the last few miles. She laughed and applauded and then, once I was fed and pilled and washed, tucked me into a soft bed with endless pillows. I slept better than I had in months, safe and still and comfortable at last.
I haven’t tried to cross New York City since, except when I can afford a cab all the way from the airport to Grand Central. Life is too short for that much work and physical battery… and the NYC cops have changed.
Remapping and the primitive brain are key concepts that come up often for people with chronic pain — though we don’t always know it. These underlie some treatment strategies that seem, at on the surface, anything from absurd to cruel from the perspective of the stressed patient. They also underlie a couple of those chronic misunderstandings between medical people and non-medical people, which are especially painful when the non-medical person is a chronic pain patient. I hope this will go some way towards creating better communication between palliative-care doctors and chronic-pain patients.
First, I’ll go over a few fundamentals. Naturally, I’ll translate the dense stuff into Plain English.
Basic brain structure
The brain has sections which have different jobs, but communicate intensely with the others. It’s impossible to view them either as entirely separate or entirely connected; they’re simultaneously distinct, and inter-linked.
Providers, I’m going to oversimplify. Be warned.
The hindbrain, or medulla and cerebellum, manage the business of pulse, respirations, and the kind of moment-by-moment activities of survival we don’t even think about. The cerebellum and cerebrum take in information about our environment, check for reflex response, compare it to learned and instinctual information and decide what to do about it. The cerebral cortex is where we start thinking we’re in human territory, because this is where much of our actual thinking takes place, linked into deeper structures in order to turn into words and deeds. Our thinking brain is very much in the minority and, whether it knows it or not, conscious thinking only happens on top of a great deal of unthinking response which has already happened.
That’s the key, right there. The thinking brain is never isolated, even though we sometimes act as if it can operate alone.
Think about the meaning of the word “objective”, then think about how that can possibly apply to thoughts and perceptions channeled by a mind that’s driven by unackowledged forces at inaccessible levels. Objectivity is only an aspiration, not a rational goal, but that’s too often forgotten or ignored.
When scientists forget this, it explains a lot about conventional medicine’s blind spots, certain doctor-patient miscommunications, and many crucial limitations of scientific method.
When the rest of us forget it, we’re already reacting on the basis of the primitive brain’s unthinking push. We lose our capacity for any objectivity right when we need it most.
The central nervous system (CNS) is “plastic”, a term in Medical Jargon which means that it morphs and changes to meet the requirements of whatever the CNS thinks is going on.
To be more precise, the CNS doesn’t change the shape of its cord, lumps, and lines, it changes the tasks (and pertinent chemistry) of sections of cord, lump, or line, when ongoing survival seems to call for it. The term for that morphing of purpose and chemistry is “remapping.”
During fetal and childhood development, the brain and spinal cord develop into certain chunks, and those chunks learn to store and pass along information and signal responses in predictable ways. Sounds, colors, sensations, Mom’s face, Dad’s scent, sibling’s voices — these all get processed in, stored for future reference and retrieval. The information finds its home in the CNS while the brain and spine build roads and rails to carry the signals on.
In Medical Jargon, this arrangement of storage and signaling is called the brain map. Unlike most other disciplines, in neurology, the map IS the territory, and mostly it works pretty well.
Therefore, a healthy brain has a normal map of the body, including how it signals normal needs and how to meet them. As the body, signals, and needs all change, the map gets re-drawn, and that’s how the brain and spinal cord get remapped.
This is appropriate in the developing years and in times of great change when we need to adapt. Brain plasticity is important and exists for good reason. However, in chronic pain, especially with central sensitization, it goes overboard.
Thanks to the remapping that happens with chronic pain, the pain signals can’t stop because the chemicals that carry the signals change, so the old pathways aren’t even accessible to them. You know how trains can’t use roads, and cars can’t use railroad tracks? It’s a bit like that. Your spinal cord/brain has blacktop where it used to have rails.
In central sensitization, it means that normal signals — excitement, touch, sound, lights — can get processed, not just as emotions (wow!) or touch (hey!) or sound (oh!) or light (ah!) signals, but as pain signals (ow!), because the brain’s remapping means the normal ways of processing feelings, sensations, etc., have been partly overwritten — sometimes completely erased. It’s all pain, showing up right there in the spine and brain; pure, gruesome pain. It doesn’t come from anywhere in particular; it’s just the essence of pure pain.
Yeah, it sucks.
This is why people with chronic pain and central sensitization get so quickly overwhelmed by things that used to be fun, like music, parties, dancing, socializing, and so on. The inputs, however delightful themselves, just get shunted into the “pain” tracks right in the central nervous system.
It’s not about not wanting to have fun! It’s about not being able to bear the unnaturally high price, which is so high the fun is usually lost.
When a normal person sees one of us at a party or other event, it would be totally appropriate for them to fall to their knees in admiration and gratitude, because our level of dedication to the events we do attend is truly special.
Not that anyone ever does, nor are they expected to … but it would be perfectly appropriate if they did 🙂
The primitive brain’s role in all this
The primitive brain is one of those terms that changes meaning depending on who’s using it. So, to be clear, I use it here to mean the parts of the brain that don’t use words a lot, and that underlie all the parts that do. Very simple.
Since pain is a survival function, it has deep roots in the primitive brain. This is kind of too bad for us, because once we understand the concept of remapping, we want to learn how to re-remap, so we can push our brains back closer to normal. The catch is, this is all rather intellectual, and pushing back on pain’s remapping means that the re-remapping needs to target a lot of primitive brain, which is primal, not intellectual. The approaches that have been developed reflect this. They’re hard to keep up with, because they don’t always appeal to our higher personality characteristics. (That is, they can be repetitious, trivial-seeming, and dull.)
Let’s take a look at the underlying concepts here, so the ways we communicate with the primitive brain make more sense.
The primitive brain relies heavily on nonverbal cues. Take a look a few paragraphs back, where I was discussing how sensory signals turn into pain. I’ll repeat the section here:
…emotions (wow!) or touch (hey!) or sound (oh!) or light (ah!) signals, but as pain signals (ow!)…
See what I did there? For each type of signal, I made a pertinent sound, and drew attention to that sound by adding an exclamation point. I was totally talking to your primitive brain, there.
Most of us find we talk more easily with people who don’t have arms crossed or brows lowered. That’s the primitive brain noticing the lack of withdrawn or threatening cues. Body language is 90% of visible communication, just as tone is 90% of audible communication, and it’s rarely noticed by the cortex at all — it’s primitive brain stuff, and humans respond as reflexively as Pavlov’s dogs.
Color (for those who can see it) sends powerful signals to the primitive brain.
Interior decorators may suggest painting the marital bedroom red, because red makes the primitive brain tend to feel passions more strongly and this can improve the sex life.
Some prisons use grey (which is depressing, and slows people down) or pink (which tends to promote calm. The nice theory is, it’s the first color we saw, as light penetrated mother’s stomach wall while we were in the womb. The mean-spirited theory is, it makes grown men feel like little girls; rather than learning to control their impulses, they get emotionally emasculated. Not corrective at all.)
Here’s a classic example of good intentions: In 1991, the administrators at my hospital decided to paint the walls of our HIV unit yellow, in a conscious effort to cheer the environment and counteract the depressing nature of early-90’s existence with HIV. They should have involved caregivers in the choice of shade… after only a year, the one they chose looked just like the serous fluid oozing from a skin ulcer. Still, they meant well.
Movement is powerful. The movement we see around us and what we do, ourselves, gets plugged in very deep indeed. Movement involves the most primitive parts of our brains. Because so many of us become limited in our movement due to central pain disease, what movements we do make, and even observe, become even more important, more concentrated.
Very primitive indeed. That’s why these things can be so effective.
Putting several primitive-brain cues together: food, pills
Eating is comforting to the central nervous system for all sorts of reasons, one of which is that taking something, putting it in your mouth, and swallowing, is something we first experienced before we were even born. Also, eating good foods and taking effective medicines makes us more capable and less miserable, because of what happens afterwards to our chemistry — a powerful reinforcement of that primal reward.
The sensation of feeling better is even more compelling when being alive is unbearable at baseline.
Freud went to town over this instinctual action, but he wasn’t completely wrong.
Putting hand to mouth and swallowing is one of the most powerful primitive-brain signals we habitually engage in. (Realizing this makes me think about how I eat, fidget, and generally do hand-mouth things. I’ll be less mindless about those actions — at least for awhile — and try to give my primitive brain its due.)
This is where we get to one of the things that seems so cruel from the patient’s point of view, but makes perfect sense to the doctor seeing it from the brain’s point of view. I didn’t really get it until mulling over my recent visit, so those of you who’ve seen me saying something different before, I apologize for not having thought it through. They might not be wrong!
This was not easy to write, but for the reader, who doesn’t know what’s coming until you read it, it could be triggering. I want to insert a reminder to my fellow painiacs, for whom black-and-white thinking is very easy to fall into… Take a breath, let it out slowly, and keep in mind that there are no absolutes here, just lots of context and a few guidelines. This can be pretty tough material, but you are way, way tougher.
What we can do about this
Now that we have some idea just how powerful the primitive brain is, how easily it remaps itself once central sensitization takes hold, and how powerful the act of taking and swallowing things that make you feel better is …
Ideally, think long term
We can see why, when doctors don’t want us to ramp up our daily meds when the pain gets worse or to become too regular about taking our breakthrough meds, these things worry them. It’s too easy to program the primitive brain in pain. They see it as powerful signaling that sets the brain up for needing an outside chemical push whenever it starts acting up.
Pain patients come in all sorts, but can broadly be divided into the passive care recipients and active care participants. The latter tend to have much better prognoses and quality of life, but the nature of bitter central pain tends to suck everyone down into the former approach now and then.
Thus, the doctor has no way of knowing if the patient in front of them is currently able to be an active participant and do their disciplines first, or if they’re sufficiently overwhelmed and disabled to just reach for a pill (ow! — mmm!).
None of us is immune from mental exhaustion. However appalling their terminology may be, good docs’ instincts are founded on caring for our greater good, even when we can’t think that far ahead.
Unlike acute pain, life with chronic pain requires us to take more than one approach at the same time. (Insurance doesn’t much respect this fact, which makes it all the harder to manage!) We aren’t expected to recover, unlike those lucky so-and-so’s with ordinary acute pain, so we have to think in terms of having a life while thinking ahead to being able to live the rest of our lives in a bearable state.
This means that all of those primitive-brain approaches and re-remapping tools — eating well, keeping moving, mental rehearsal, coloring, internal arts like meditation and yoga — PLUS individually tailored pharmaceutical therapy and occasional procedures — have to be part of the picture.
Doctors can help us, but they can’t save us; we have to do as much re-remapping as possible, and contribute as little as possible to the pain’s remapping. We aren’t talking about a couple of days or even a couple of years; we have to be able to keep life as manageable as possible for however many years or decades we have left.
The painiac’s barriers to success
Considering how devastating it is to think that we’ll most likely be dealing with this all our lives, our own brain-care requires us not to think about that, because so much perfectly rational despair is waiting when we do.
It requires thinking years ahead on every aspect of our treatment. This is more than usually hard for us to do, becuase thinking too much about this aspect of our future is so counterproductive in other ways.
Nobody’s brains are set up to stay detached and rational when our nerves are running riot with pain signals and our bodies are just exhausted with it. It’s okay if this seems insanely hard, because it IS insanely hard.
This is not a normal situation! We’re rational people stuck in a complex web of relentless, irrational challenges, and we are obliged to prioritize our current survival. Just do your best! It’s all you can do!
Personally, some days, getting out of bed and doing my tea-snack-pills routine is all I can manage, and I have to be glad of that. (Things could be worse.) I realize that, good as my disciplines (and consequently my perspective) are, they aren’t always up to the job of keeping this mile-high view. Also, I’m a brain-hurt human, and I can’t necessarily keep track of all the myriad things I’m supposed to do.
This is why I seek out and travel to such astoundingly good doctors. I need them to DO what I can’t, as well as to KNOW what I don’t.
Taking more pills and feeling better is powerful retraining. Yet… There are only so many pills in the world, only so many chemical boosts that can do any good at all.
What a set-up!
Built-in pain control and building up tools
On the other hand, remember that we have other tools available to us. For one thing, the brain/spine complex has many ways of managing pain and distress which can be leveraged by a conscious and determined owner of that system. These ways, from the descending inhibitory pathway to oxytocin, endocannabinoids, and endogenous opioids, can be consciously operated and can be nudged by what we take in and do. (Go ahead and google the heck out of those terms. I don’t have enough spoons left to dig up the best links.)
They take practice to master. Not surprisingly, developing these skills can be repetitious, trivial-seeming, and dull.
Just like building a muscle, it takes work to build — rebuild — and keep on building — the ability to counter pain in ways that use what your body has already got.
Letting the primitive brain slide into taking a pill for increased pain as Plan A or B puts the kybosh on those other methods. They wither, like unused muscles.
The pain patient is left with fewer and fewer alternatives, as the years go on.
Yeah, that REALLY sucks.
The one member of the doctor-patient team who isn’t currently losing their mind to disabling pain has the perspective to think ahead, and to realize that NOT retraining the brain to go with “pill as Plan A” is crucial to ongoing survival.
They aren’t always tactful about it, of course (!). They learned it in terms of Pavlov’s dog, and nobody likes being compared to a slobbering animal, so the usual explanation is deeply offensive. I hope they’ll figure that out and start using terms like “primitive brain” and “primal reflexes” and so forth, rather than “operant conditioning”, let alone “Pavlov’s dog.” Sigh.
This conflict of ongoing needs and current distress often winds up painting the doctor-patient team into a corner: the patient’s desperation may lead them to remap their brain to need something it can no longer make for itself, while the doc is not able to communicate real concerns effectively (between their own language gap and the patient’s neurological chaos) but winds up patronizing the patient to a standstill.
Where to go from here
So, when your doc says, “Don’t pill up,” this is why. They’re worried sick that you might be reaching for pills as the easiest fix — just like most normal people do. Just as they do, when they’ve got an infection or allergies. These days, reaching for a pill to solve a medical problem is the normal thing to do. That’s why it’s a natural assumption for them to make.
I know my readers are a lot better informed and more skilled at self-care than most people. So, if you find yourself having this kind of conversation with your doctor, pause a moment, take a breath, exhale slowly, and explain:
You understand the concern about screwing up your body’s reward-signaling,
You’d like them to know you’ve been using your alternate methods for days/weeks/whatever, and
The pills were the last ditch effort.
That’s exactly what breakthrough meds and med increases are for — last-ditch efforts when our home remedies and personal strategies can no longer meet our minimal requirements.
You may have to say this every time. (I do.) That’s okay; it shows they think of your survival before they remember their manners. These docs are seriously worried that you’ll wind up beyond the ability of modern medicine to do anything for you. (We want docs who worry for us!)
Some of us wind up there anyway, as we’re all well aware from our networks. Our best bet (though there are no guarantees) is to explore, discover, and refine the set of non-pharmaceutical management techniques that offer each of us, individually, the most manageable level of trouble/expense which give us the best results. We’re all neurologically different, so we have to develop our “toolkits” on the basis of what works for ourselves.
Suzanne Stewart (among others) at National Pain Report, intelligence diligently applied;
For the multiply allergic or drug-problematic, Taming the Beast, out of Canada, for more on home management and strategies that are as nontoxic as possible, discussed as pleasantly as possible.
These blogs all discuss strategies that are compatible — or at least not incompatible — with current science.
In the end, what tools matter to you is what tools work for you. You don’t owe anyone any explanations for those. It’s your body, your life, and you who have to face the consequences of every strategy used in your case. Might as well own it.
Other “ancillary” or “alternative” therapies
Once you include strategies and therapies outside your doctor’s bailiwick, it’s not fair to ask the doctor if they think it will help. They’re already doing what they think will help. Conventional mainstream medicine names these techniques with terms that specifically put them off to the side, because that’s where they believe these things belong, so it’s normal and appropriate for conventional practitioners to have a bit of trouble making sense of them.
For the pain patient, these strategies are likely to take more time and attention than conventional care, but only because they are so necessary to living with central disruption and pain.
As long as these therapies don’t disrupt or interfere with your medical care, then the physician’s opinion is not relevant; your experience with that therapy is.
This brings us to a form of intellectual integrity which many well-educated people have trouble with. Ready? Here goes:
Others’ belief systems are not relevant to your personal experience of less pain and greater function.
Even if the “others” are care providers, and even if their belief systems are based on the current state of our limited and ever-changing model of science.
The only proof we need, here at the sharp end of reality, is what kind of good something does, and what kind of bad it doesn’t do, for the only body we’re in.
If it helps, doesn’t hurt, and you can access it, success! It’s in your toolkit!
Below is a short table of “alternative” therapies and modalities I’ve used with success, with annotations about what I learned about how to make the most of my benefit from them. (With apologies for the weird formatting.)
Essential. Our brains are the most susceptible organ in the body to deficits. Air, food, and water underlie everything our brains do. Immune activity in the gut is becoming a hot issue for study, as the results can be multi-system and devastating. Nutrition is the first and most important step, in my view, to managing a life with serious illness. Eliminating or reducing immune triggers, maximizing nutrition within your practical limits, and being able to absorb and process your food, are key to getting your body to work right again.
As those of you who’ve checked the science know, nerves can’t work without mitochondria, and mitochondria can’t work without antioxidants. The only known preventive strategy for CRPS is vitamin C in frequent small doses for 2 weeks before surgery and 3 months after surgery or trauma. Vitamin C! So yes, nutrition is the base of everything. This also means, beware! Nutrition can interact and have side effects. Brassicas and soy can deplete the thyroid. Co-Q 10 interacts with Lexapro, a common neurochemical modulator used for central pain and depression. Check with your pharmacist.
The practitioner needs long experience to avoid accidental damage, plus specific training and experience with central sensitization. (I use LAc’s with over 20 years’ experience.) Patient needs realistic expectations and a pragmatic list of attainable goals: anxiety control, sleep/wake improvement, temp/sweat stabilization, digestive support, wound healing, whatever your practical concerns are.
Acupuncture is extremely sophisticated. Its methodological groundwork was being laid before my European ancestors even figured out where babies came from. Because of that sophistication, experience counts, because some of what they evaluate is very subtle. Inappropriate acupuncture can make local or central pain worse, so do be mindful and pay attention to the care you’re getting.
Can be GREAT for pain. It’s more “tunable” than many practitioners realize. If you have dysautonomia or suspect any other form of central disruption/transformation/sensitization, be sure to tell them: “Use SHK, and lots of it. CKR can be bad for central nervous system disruption.” Their likely reply is, “But Reiki goes where it’s needed; it can’t hurt.” The response to that is, “Reiki gets attracted by need. However, more than a touch of CKR can be like warming hands by pouring burning fuel on them. SHK is more stabilizing, and that’s what’s effective. CKR is great for a final ‘coat’ afterwards, but not for the main treatment.” (CKR and SHK are different “flavors” or “types” of Reiki energy.) I figured this out with the assistance of other Reiki 2 practitioners and other centrally sensitized volunteers. It’s absolutely consistent, both for in-person and distance work.
Level matters. A Level 1 practitioner normally needs to work on only themselves. If you have Level 1, consider working towards Level 2, as the rewards can be considerable. Level 2, 3, and Master practitioners can send transformative Reiki. Many massage therapists are also Reiki practitioners.
Therapeutic Touch ™
Came out of the nursing profession from a nurse-scientist who got some initial studies funded. Blood tests were so good it was unreal. Usually done by RNs. Usually helpful with pain, digestive problems, mobility, and wound healing.
May be available in-hospital, sometimes through private practice. Sometimes massage therapists get cross-certified in TT.
Be prepared for some rudeness if you tell people you use this. Its principles are founded on quantum physics (something called “signal propagation”) and conventional medicine still depends on Newtonian physics, which is 600 years old; predictable, but limited. Anyway, I strongly recommend getting competent, qualified help in working out what works for you. Hypericum perforatum is widely used for nerve pain, but it can go either way for us. It used to help me significantly but now my body flips it about half the time and it makes the pain dig in, so I no longer use it. Ignatia amara can help calm that emotional storm that comes with too much stimulation, surprise, or pain. It also eases my bursts of panic. I get great results consistently. I use Arnica pills for soft tissue trauma (which, for me, is a body-wide event), and heal in 1/4 the time with about 1/6 the pain of what happens when I don’t! Many have great results from Rescue Remedy ™; for me, it just calms my mood, but for my housemate, it brings her blood pressure down from the sky and cuts her pain. We’re all different.
As with Reiki, some say that “it can’t hurt”, but that isn’t correct for the centrally sensitized. Keeping logs of how you respond to each remedy is an excellent idea. Your diligence can result in a handful of outstanding remedies that help you enormously and very quickly.
These are the precursors to conventional mainstream medicine. Therefore, they’re a double-edged sword. Assume that everything interacts with something in conventional medicine (except possibly chamomile); know your interactions for what you use. Everything has side effects, although, with that said, whole herbs tend to buffer their own bad effects better than purified extracts. Freshness matters; potency varies. This means that, if you’re interested in the potentially vast bouquet of beneficial herbal support available, either start when you’re young and healthy with a great teacher (as I did) or find a very experienced practitioner with experience treating central sensitization.
Expect to do a lot of homework researching brands and regions and preparations, in your own defense. The market is huge and very aggressive. You are your own guinea pig, so keep track of effects, doses, potency (which you’ll have to figure by color, scent, and taste) if you’re wildcrafting or growing your own. Be wise with your herbs, and they can reward you.
Do your due diligence
As the blunt hints in that table suggest, there is no such thing as a free ride or a guaranteed fix — not even any such thing as “It can’t hurt you!”, especially when central sensitization is part of the picture.
Given all the side effects of our meds, the mistakes by highly qualified physicians, and the errors in surgery, not to mention the rank company of practitioners like Scott Reuben who get rich by urinating in the well of science, these characteristics of not being harmless don’t distinguish “alternative” methods from “conventional” medicine at all, from the patient’s point of view. It’s all risk, and nobody bears it as much as we do.
The obvious corollary is that there are highly qualified practitioners of these therapies too. There’s no substitute for good training and lots of experience, so look for those who’ve studied their disciplines long and hard, and remain enthusiastic about their field. These are the ones who can provide the best help and guidance.
Another handy fact is that there is a lot more information available on these therapies, at a much greater level of detail, to the determined pain patient. We don’t need medical school access or memberships costing thousands we don’t have, to access articles and reports (not to mention extensive fluff and pretty pictures) about physiotherapy, massage, TT, acupuncture, and any herb you care to name. Good resources for checking interactions with medication and devices are there with a little digging. The vocabulary and style is far more approachable. A bit of common sense and occasionally a friendly nudge from a cohort can help us screen out most of the rubbish.
After that, it’s back to trial and re-trial and lots of notes, the reality of patient-hood, which is based on empiricism out of necessity: WHATEVER WORKS FOR YOU IS WHAT MATTERS, NOT WHAT ANYONE BELIEVES “SHOULD” WORK.
As with medicine and surgery, the final sanity check and the final decision is up to you, the patient. It’s always up to you.
May our brains and spinal cords become more stable, less reactive, and ever closer to normal!
Guess what? Everything’s up in the air, except me. But don’t worry, it’ll work out.
And that, folks, is how you know I’m back in the saddle. I’m not naturally a nervous person, but the years of system and systematic abuse on top of the fried central nervous system left me very nervous indeed. Every uncertainty was like a set of razor-wire boleadoras, ready to spin out and knock me over and tear me up.
Ghastly image, but very apt, as some of you know from your own experiences!
Of course, this slice of recovery is just well begun, not done. I’m simply able to reflect on possible futures without melting down reflexively. I’ll still have bad moments, bad days… and they will pass.
After all, there’s always an afterwards.
So, I’m 51 today, and I can honestly say I didn’t expect to see this day. You’d think my 50th would have been more reflective, but no, this one is.
I realized I’ve been blogging for 8 years, maybe 9. The first year and a half were justly lost in a Google flail, in the early part of the Pit Years. They were online journals, not blogs; the point of blogging is not to rip my skin off for reader amusement or “inspiration porn”, but to trace one path through the thickets we all have to travel, and trade ideas that help others find their own paths, or at least make them more bearable. (Tip of the hat to the friend of my youth who had the integrity to tell me she didn’t want to read my diary.) I’m more grateful for my readers, in all your kindness and struggles and brilliance and care, than words can ever say.
51 is starting with a bang, or rather continuing the same bangishness that has characterized this year so far.
I’ve found out I don’t currently have gall bladder disease, detectable spleen or pancreatic disease, or any form of cancer growing in my gut, just some “mild” gastritis. This leaves the question of what’s causing the rather extensive GI issues open for further inquiry. I’m going to see if I have mycotoxicity, which is looking very probable indeed, going on reactions and the fact that even the weirdest symptoms on that list are mine; going to find out if my body is able to respond well to a massage intensive (twice weekly for some months) or not; going to finish the final house repairs (as soon as the weather warms up long enough to let us not only recover from the cold but then get past the setting-up); and going to find out where we’ll go next, when the lovely house we’re living in sells. (My credit will age out of the worst black mark next year, so getting a house loan is simply a matter of time, with ongoing diligence. Not to mention knowing where to land.)
I’ve been reflecting on J’s unique mix of gentleness, brusqueness, flexibility, and intransigence, and realized how much he helps me in nearly every phase of his personality. (To misquote a capable yenta I knew, the holes in his head fit the bumps in mine, and vice versa.) I wondered how much further I could have come if he’d been there when I first got sick, or before I got sick. What great work I could have done.
Then I remembered, oh yeah, my ego was very much in the way — as that egotistical sentence pretty well indicates (what about your partner’s work, eh, Isy?) We would have loathed each other on sight, as both of us were cocky little jerks back then. It took losing everything that I thought defined “me” and “my life” to realize what really matters in a person — and in life.
I learned that love isn’t my driving force, it’s the anodyne that makes living bearable; curiosity is the characteristic that drove me out of the grave. I never would have guessed at the pure slingshot force of it.
So, though I don’t think I’ll see another 51 years, I can see that I might be wrong about that too. I’ll start heading that way now. I’ve got good company, outstanding friends (some of whom I’m related to), and interesting things to do. Onward.
May the future be worth the trouble of getting to it!
I used to run between 3 and 12 miles, 3 to 5 times per week. Not so much because I wanted to be One Of Those Running Addicts, charging along with a ghastly snarl carved into their faces while insisting they were having a marvelous time. Initially, because I had to dump the stress from my nursing job without killing anyone, because there wasn’t enough Haagen Dasz in the world to smooth the edges of HIV care in 1991 or of working the only public ER in Washington, DC. Later, simply because it was fun, after the first few weeks of adjusting to the initial effort. When I had had to give up nursing due to illness, recovered my lung function eventually, then was burying someone I loved every other month while I learned to handle programming software enough to write about it, I needed a bit of fun.
Well, that was depressing! I sometimes forget that having an eventful life can correspond to having a catalog of horrors in the rearview mirror. It’s not all horrors, really, and my natural bent towards finding beauty in everyday life became well developed, as I dove into the beauties (or the work) of the moment as a coping skill, and then eventually because it’s so rewarding.
At that time my usual trail was up hill and down dale through a redwood preserve — to misquote William Allingham, “Up the airy redwoods, down the mucky glen.” Great for the calves.
More to the point, getting out before work meant I could watch the sun touch the treetops high above, slowly stroking glowing gold down over their dusky purple and blue-green, each luminous inch bringing the birds roosting at that level to life, shrieking their fool heads off like this was the first time ever and they just couldn’t believe it!
THAT was definitely fun.
Speaking of fun: I’ve been reading thriller/adventure stories by an author who’s also an old pal. Like most thrillers and adventures, the characters are annoyingly fit. Unlike most thrillers and adventures, the characters have actual personalities (not just a set of quirks laid over a monotonously steely outlook), with the touch of weirdness I see in the people I’m drawn to, if I look closely enough. I certainly see it in myself.
These days, I have trouble identifying with fit, but I identify with weird just fine.
Suddenly, I couldn’t stand it any more. I got up, put on my sturdiest foundation garment, added a couple layers over that (it’s still chilly and soggy here) and went for a walk. My old, solid stride came back, the one that propelled my blonde fluffy self safely through the Tenderloin in SF and the drug commons of DC, with no more remark than, “Marines? Special Forces? How much do you bench press?” (The last was unusual, and actually made me pause to try and remember.)
I noted which clothes I went to put on, and moved them toward the door so it’ll be quicker to get dressed next time.
I forgot to stretch out afterwards, and getting up from this chair a minute ago was a useful reminder of the absolutely essential need to do so. Stiffening up happens!
I overdid a few days ago and it took 2 days to recover, so I know I have some exercise intolerance. I’m being careful (within the limits of my personality.) So far so good, and if I haven’t crashed and burned by this evening, I’ll know I chose the correct level of activity, and can increase first my distance, and then my intensity, by increments of no more than 10% at a time.
The tiny incrementation is frustrating for a former muscle-head, but I’m old enough (at last!) to know that little strokes really do fell great oaks, that the future will come anyway and I might as well be better for it, and the way to make that happen is to work at my margins and gradually, gently, persistently, open them out.
I don’t dream of marathons, but nor do I count them out. I don’t count them at all. I walk (briskly and sturdily) the dirt roads through my forests, and that’s enough for now, while leaving me plenty of room to grow into.
While I was mulling the constancy of nausea and yuckiness, looking for a reason more useful than “it’s winter”, I realized I had relentless cascades of post-nasal drip.
The stomach isn’t too fond of relentless cascades of post-nasal drip, because the glucoprotein complex generically called “mucus”, which we usually call “snot”, is not that easy to digest. It’s not really meant to be digested; it’s meant to do its job (picking up and trapping obnoxious particles or germs or what-have-you) and then get blown out. It’s not supposed to roll into the tummy in a never-ending stream.
I was reading up on GI issues (as one does) and stumbled across a piece which said something like, “Stay away from nuts and seeds entirely. The oil is rancid by the time it gets to you and that rancidity is poison to the systems of people who have leaky guts and sensitized systems. You can usually tell because the immune reaction affects your sinuses and causes lots of extra mucus.” If you’re curious, this article was about the GAPS diet and explained the whats and whys.
I threw my hands up in exasperation and disgust. I relied on nut and seed butters to start my day, because they cut the morning pain down to a quite bearable level and gave me a bit of protein that didn’t bring my stomach up in revolt. My mornings are tough enough and this info just pissed me off.
The next morning, I woke up noticing that I didn’t have post-nasal drip. Nice. Then I started on my morning breakfast of apple (malic acid helps the pain ease off too) and sunflower or almond butter (I forget which.)
Two bites…. then a relentless cascade of post-nasal drip.
My first thoughts were mostly expletives. Totally unprintable in a family-friendly blog.
I went off the rails a bit. I’ve been dealing with this disease complex for nigh on 15 years now and I have evolved a pretty limited (and not cheap) diet to manage it. Rather than thinking, “Oh great, a good clue as to what I can do to improve things!” I mentally roared, “WHAT THE BLEEDING HECK CAN I EAT ANYWAY????”
– Genetically-determined mild allergy to white beans. That means soy, chick peas (which wipes out hummus and much Indian food), most multi-bean soups and salads.
– Roaring neurologic gluten response, which in my case spills over into related molecules. This means: no wheat, barley, triticale, rye, oats — in fact, most grains; nor fresh milk, soft cheese, dairy ice cream; and eggs only in strict moderation.
– Hashimoto’s disease means my body is chewing up my thyroid. This means definitely no soy, but also, no broccoli, chard, kale, bok choy, cauliflower — no cabbage/brassicas of any kind — and that’s an awful lot of vegetables not to have as an option, including most winter veg. And yet, I need lots of vegetables and happen to like all of those. Even in small amounts, brassicas can squash thyroid response. It’s very sad.
– Candida/c.diff overgrowth, which means no sugars (not even unrefined honey or maple syrup, not even low-glycemic stuff like agave [which makes me cramp] or maltose), no rice, minimal fruit, no juice, no root starch (too high in sugars) or white starch of any kind (if I’m doing this diligently) which wipes out the potato family and remaining grains except amaranth (I can’t digest quinoa at all, so it’s not even an option.) Then there are the limitations that are less obvious, which means, no tea or coffee, no vinegar or cultured food (if I followed that parameter, I’d be unable to digest anything and my guts would be even worse), no artificial anything because they tend to be grown on yeast or malt slurries (which is fine because packaged foods tend to happen to other people, not me.)
– The constant immune-y fuss means I should probably be more diligent about the inflammatory culprits: tomatos, eggplant, potatos, peppers, the whole belladonna group. I LOVE those things. Also, no canned foods, because the trace amounts of preservative stuff are so neurotoxic that molecules matter to my body, and homemade canned stuff can still grow trace amounts of the fungusy-yeasty stuff that boots me back into candida territory.
– Now, no nuts or seeds. At all. Possibly no cooking oil. I was diligent about getting the freshest and checking best-by dates and inspecting the packaging, for the candida reason. Not enough any more. No nuts or seeds at all.
I think i’m down to squashes, lettuce, and incredibly expensive pastured/wild flesh foods. Oh, and grassfed (Kerrygold) butter. I can put that on the squash, I guess.
To be frank, I haven’t been very diligent about eliminating the root veg and I’ve had some broccoli and cauli lately, because it’s freaking winter and I’ve needed to eat something that’s available.
Since reading about the nuts/seeds thing, I totally fell off the rails. No gluten, because I’d rather die than go through all that again, but I’ve gone to town on sweets, rice, vinegar, ice cream, root veg, brassicas, belladonnas — everything but nuts and seeds.
Paying the price for it, too… as one does.
Two nights ago, I made myself a new bedtime meditation recording, designed to rebuild my own mental core. I’ve just about had it with trying to cope with the world (if you have one eye on US politics, you’ll understand that well enough, especially if you have friends and family who are losing care due to political brangling, losing property due to corporate gamesmanship, or losing their liberty due to being not-White); add to that some family crises of illness and a bereavement in the extended family, and… yeah.) I’ve reached March feeling absolutely shredded inside.
And then…. NUTS!
Lately and increasingly, my brain was really resisting the relaxation response training — which is very odd for me — and I was having nightmares and waking up 5 times a night. I thought that, if I backed off the calming exercises and instead re-integrated my core self, that would make more sense than trying to pretend everything’s all right for half an hour. I have no idea what that looks like for other people, but I have a pretty good idea what it looks like for me. So, I made a recording with a series of mental/imaginative exercises that boil down to my individualized psychological structural support.
The chaos and rage are abating, which is just as well, because I have a follow-up appointment with my pain specialist tomorrow. I’m calming myself down with this article before turning my fragile attention to encapsulating the physical fallout and revelations of this winter in a coherent patient update.
I get to tell him that I’m seeing the GI specialist later this week, and that I have tested marginally positive in a screening test for mold toxicity, so more blood tests are coming from my allergist. That would actually explain a lot, but I’m not sure where he stands on the subject. Mold toxicity, as a driver of illness, is one of those things where the physician’s belief-state has more bearing on care than the coherent, consistent, verifiable facts of the patient’s disease-state — in that respect, it’s like chronic fatigue, neurogenic pain, and most immune disorders. Familiar territory to many of us.
A few days ago, I apologized to J for being such a piece of work lately. I told him I’ve been ill and in more pain than usual. He said, with the kindest intentions, “Well, it’s hard to act right when you’re sick. You have to feel good.”
I said, “I never get to feel good. It’s just different levels of –” (waved my arm expressively.) “I usually do a pretty good job of managing myself anyway.” He agreed, bless him.
That first phrase, “I never get to feel good,” has been preying on my mind. But then, it’s winter. This will pass, and I’ll find it easier to put my focus where it belongs — on what I CAN do, CAN eat, CAN feel, that’s not so — (wave my arm expressively.)
Until then, I’ll keep breathing, keep making my appointments, keep tending my relationships as well as possible, keep up on my documentation, keep on keeping on. As one does.
Fortunately for all of us, the blogger at Elle and the Autognome has done a good job of laying out the basics and providing a starting-point for figuring out how to manage it in individual cases — because we’re all different, and we have to figure out what works in our particular bodies. So, rather than waiting for me to get it together on this topic, I’m going to punt to her.
* For the record, “central nervous system sensitization” is a collective term for the diseases characterized by CNS up-regulation of essential neural signals, notably pain but also a whole garbage-can of signaling misbehavior that goes with that. These diseases include CRPS, fibromyalgia, chronic fatigue, multiple sclerosis, lupus. chronic Lyme, and so on.
“Never give up. Never surrender.”
Leonidas of Sparta, Jael the wife of Heber, Alexander the Great, Queen Boudicca, Mary Magdalen, the Prophet Mohammed, Hildegaard of Bingen, Vlad the Impaler, Queen Isabel of Spain, Geronimo, Copernicus, Marie Curie, Winston Churchill, Aung Suun Kyi, Terry Pratchett, the 14th and Final Dalai Lama…
Rest and retreat, yes.
Pause for thought, please (unlike some of those listed above.)
Knowing when to acquire a sense of proportion, ideally (again, unlike some of those listed above.)
But… don’t give up. Don’t give your rightful self away.
It’s always been easy for me to be determined, but not easy to pick the right things to be determined about.
In my 20’s, I wanted to save the world.
In my 30’s, I was willing to work only on that part of it that wanted my saving.
In most of my 40’s, I was dying — sometimes by inches, sometimes by yards — and couldn’t quite save myself.
I’m 50; what a relief!
Given that trajectory, it’s no wonder that my priorities have shifted a little.
I figure that, as long as I have working pulse and respirations, I’ve got a job to do. (I suspect everyone does, but I could be wrong.) My particular job is to re-possess my physical self, and, given enough slack, help others to re-possess theirs.
Our bodies are not just machines, despite the inherent dis-inheritance proposed by Descartes (considering the body a separate entity from awareness), and the even more extreme model funded and fomented by a slightly misguided Hearst (who fell in love with interventionism, and drove the mechanical-problem-to-be-fixed model of medicine over the shifting-dysfunction-to-right-function model of medicine.)
Bodies are the media we experience life through, the means we have to respond with. Despite the relentlessly shallow concerns over appearance the media saturates our lives with, our fundamental experiences of life are not just seen. Life is an all-body experience.
Bodies are marvelously self-aware organisms on an enduring quest to care for and maintain themselves by communicating as effectively as possible within themselves, and responding as usefully as possible at every level — within the cells, between the cells, from cells to organs and back again — with the marvelously alert circuitry of the nervous system and the dazzlingly subtle chemical dance of the endocrine system drawing the whole show together.
That’s a bit more complex than just meat-sacks wrapped in hide.
I’ve been mulling the twined facts that my body is an amazingly tough, brilliantly adaptable organism, and at the same time, is an organism constantly under sieges both subtle and overwhelming. Yet it never stops trying to find a useful set of responses, it never stops signaling and listening.
It never gives up. It has never surrendered.
I admire that.
Just for grits and shins, here are a few other things that I mutter to myself over and over.
C’mon, you can do it.
Motion is lotion.
Use it or lose it.
Change or die.
That’s quite a set, when I look at it laid out like that.
Not all of them are cheerful. Sorry.
They’re all thoroughly grounded in my reality, though, and they all have had something to do with my getting this far. They are hammers and screwdrivers in my mental toolkit of radical presence, pushing back on neuroplasticity, and not settling for what this disease would leave me.
Naturally, I say these things to myself in tones of firm, loving parental authority, since it’s all about re-re-plasticizing my brain, and those are the tones it responds to.
FTR, I’m sincerely glad it responds at all. When I was in nursing school, they told us adult brains were fixed for life. I doubted that from the start, and events eventually caught up with my skepticism. Brain plasticity FTW!
Add to that a disease nobody understands without years of serious effort; unbelievable pain; weird deficits (sound volume? Vibration? Time in the shower? Crowds and excitement? How weird is it that that stuff can make us so much sicker, eh?); forgetfulness; loss of perceptions that tell us about social cues; distorted sense of touch; and above all the improbable wobbles, waxing-and-waning, and variations in every dimension… and we could have a recipe for disaster — and occasionally do.
I’ve lost a job, some hard-earned professional respect from my peers, an excellent friend in the making, and several medium-close friends whose presence I still miss, due purely to the effects of the disease.
Kinda sucks, eh?
And I’m definitely one of the lucky ones!
Over the years, I’ve developed a handful of personal guidelines. Key to every one of them is this: I’d rather be effective than right.
What does that have to do with taking care of relationships? (Yeah, kind of a trick question. I can hear many of you shout, “Everything, duh!”)
Life is not fair, this kind of illness is not fair, and there is nothing in this world that can make it fair. Being sick like this is just fundamentally wrong, a vile distortion of life and of fairness — but that doesn’t mean I no longer have a life or that I lose my own sense of fairness.
That, folks, is where the real power of “living anyway” comes in — of doing the imp-possible with character and flair. Life is not fair, but I can still be generous (when it’s reasonable), and to heck with the unfairness anyway. This disease is vile, but I can still be pleasant (most of the time), and to heck with the vileness anyway. Imp-possible WIN!
So, here is my list of personal guidelines for tending the relationships that matter:
1. Nobody shall be worse off for helping me.
Corollary: Be truly grateful, without groveling, when they do.
Reminder: This trumps short-term survival. If I let someone be worse off for helping me, things get very bad very quickly. Don’t go there, ever again.
2. My problems are my own.
Corollary: Help is precious.
Reminder: Treat those who give it accordingly.
3. No, normal people don’t understand.
Corollary: Nor should they!
Reminder: Bless those who try; they are gold.
4. It’s hard to reach out and stay in touch. Do it anyway.
Corollary: The payoff is worth many times the effort, over time.
Reminder: I feel better after hanging up than I did when I was dialing, ~90% of the time.
5. People say more than they can do, not less.
Corollary 1: Don’t believe them when they sound generous.
Corollary 2: Believe them when they state their limits.
Reminder: Be grateful for the more painful information, and courteous about the generous lies. This has led to more subsequent real help (mostly from the curmudgeons) than anything other than #1.
6. I could be wrong.
Corollary: I might not be.
Reminder: Is that what matters?
7. Every New Year, think over two things for the coming year, because these are the only resolutions that matter: i. What do I need to work on to take better care of myself? ii. What do I need to work on to take better care of my relationships?
Corollary: It’s okay to make the same resolution as many times as necessary.
Reminder: Celebrate having made another year!
I’m not kidding. I really do all that. It’s a constant practice, of course. I have to constantly check and recheck and remind myself of each thing on the list, especially if I’ve been slipping. The point of a practice, of course, is that it’s a work in progress — like life.
It takes a lot of humility to abide by these guidelines, and, believe me, humility doesn’t come naturally — I’m genetically wired for its opposite. (You should meet my folks: gifted, glorious, hilarious, adorable, and unselfconsciously smug, every one of them!)
Having said that, the value of what comes from the humility sure is worth the effort, even though it’s overwhelmingly difficult at times.
I intended to go into these guidelines in more detail (explanations, expansions, maybe a few links to science articles to back up an assertion or three), but I find I’m running out of steam and don’t want to leave this theme — again. I’ve got several drafts with a similar title, and couldn’t hammer any of them into shape for a post.
The brutal challenges we have with maintaining relationships really need to be addressed (however brief this is, it’s still something), so you might as well dig into this and comment on what you think about this, what guidelines you’ve come up with for yourself, why you think these might be valuable or not. I love it when you share your thoughts and experiences here.
There are two things I wanted to discuss, which I’ll just drop here and leave for further comments and conversation.
Taking responsibility is not the same as taking blame. This is a very powerful idea. (It’s okay to say, “I’m taking responsibility. I’m not interested in blame.” This shifts focus for everyone involved.) This is particularly important in relation to #1, 4, and 6.
Everybody has their limits. My relationships only work and grow when I respect others’ limits, whether or not they can respect mine. (I can’t do anything about them, but I can do something about me. Moreover, when I give them this slack, people tend to move through their mess and become more considerate in time.) Particularly relevant for #1, 2, 3, and 5.
There’s always an afterwards. I developed these guidelines in light of what tended to leave the most useful “afterwards”, because I intend to be around and continuing to beat the odds for a long time.
I take good care of my brain. I work hard at learning more all the time about how to support and foster it in spite of this tedious collage of illnesses. Neurology interests me — always has. Now that it’s so personal an issue, it’s positively compelling. Neurology’s very complex, and hooks into everything — fascinatingly fractal, in the way it repeats the same physiological “phrases” to very different effect in different parts of the body in response to different changes.
I’ve been wrestling with my gut this past year or so. Lately, it looks and feels like someone’s taking a bicycle pump to it and bringing it up a little more every day. When it interferes with your breathing, that’s a lot of bloat!
I’ve found the gastrointestinal (GI) system to be a bit of a trial. It’s very complex, and hooks into everything. There’s no getting away from the endless iterations of its main roles of sensing, transforming, processing, and discarding: at the intracellular level, intercellular level, endocrine level, organ level, and so on.
Some observant part of my brain notes that the same characteristics I find appealing in neurology, are the same ones I find appalling in gastroenterology.
And the gut has so much STUFF in it…
The liver parked under the ribs at one side, the spleen at the other, holding half your blood at any one time, right across the top of your abdomen;
The endless loops of squirming intestine, stretching and shifting within their blobby webs of mesentery, shoving along several pounds of food residue at any one time along its length;
Lymphatic nodes linked in constellations in the shining webs of mesentery and glistening loops of intestine, ready to respond instantly to allergens or pathogens or anything else in your GI tract that could make your body revolt;
Major vessels, the abdominal aorta and the vena cava, coursing alongside the spine, apparently apart from the mess, but branching out so thoroughly and so minutely into the organs and the mesentery that the smartest rats in science couldn’t make it through that maze;
The tenth cranial nerve, forming an intimate and instant link between your brain and your gut, linking your brain directly to the largest grouping of nerves outside your brain, the nerves that surround and penetrate your organs and your gut, embedded in and supported by that amazing net of connective and fatty tissue, the mesentery;
And let’s not even go into the endocrine system, responding minutely — at the level of individual molecules at times — to the constituents in your food, the way you feel about them, what you need them for right then, what else you’re sensing at the time, and even what time of day or year or month it is… then hooking the info back out through the nervous system, cardiovascular system, lymphatic system, and of course the gastrointestinal system.
I was sitting in my Epsom bath today, mulling this over after the battery in my e-book died. I had done the squishing of my legs and arms with the washcloth, and ran it over my neck and back and sides too, but had a terrible time making myself touch my abdomen. It felt just awful. It also felt like it was somewhat detached from me, like it was floating a couple of inches off my back and spine, simply hovering, slightly displaced, in front of the rest of my physical self. Touching it was deeply upsetting in some way, triggering a wordless revulsion.
This is not an unusual experience for CRPSers. We often feel as if the affected parts of our bodies are almost separate from us, or like they belong to someone else, and touching them is — even apart from the allodynia — a crankiness-inducing, unpleasant experience. It’s a perceptual trick the brain plays, probably part of its general effort to manage more ghastliness than it’s really set up to deal with.
One reason I do the Epsom baths (and the stretching, and the activity, and the relaxation meditations, and the aikido/tai chi/qigong, etc.) is to stay on good terms with my body. That whole self-alienation thing is just too wrong, to me — my life is always best when I’m in my skin, so to speak, whether or not my circumstances suck.
Also, to be fair, my body has done nothing wrong; it just got some of the shortest darn straws out there, and it’s doing its mighty best to manage that. It doesn’t deserve my loathing at all. So, I work to keep on good terms with it.
This is probably one reason why I’m still often functional, frequently productive, and can still walk a mile without sitting down to rest on a good day — even after 15 years with this disease on little or no medication (here’s why no CNS depressants like narcotics, here’s why minimal other meds.)
Anyway, there I was in the bath, watching my belly inflate and almost float away, even though I was Epsom bathing (which usually calms my systems down), and realizing I was finding it unbearable to touch the darn thing, even though it was practically in front of me.
I thought, “Neurology is not that hard for me. Why is gastroenterology so impenetrable? Why am I making so little headway on figuring out this stomach stuff, and dealing with so many setbacks? Why do I get these little tailspins of terror about it? What’s going on in… the second largest collection of nerves outside my brain?” I said, as the lightbulb over my head turned on.
I thought, “I’ve been having a lot of trouble with gastroenterology. But I can usually do neurology.”
And the word for the neurology of the gut, ladies and gentlemen, is neurogastroenterology. (Break it down: neuro meaning nerves, gastro meaning stomach, entero meaning inestines, ology meaning study of. Now you have it.)
I’m pretty sure I can do that. I can sure take a stab at it.
First lesson: review the vagus, a.k.a. Cranial Nerve X. It’s a doozy.