I’m a writer; I think in terms of story. I assumed I’d have some definite third stage of recovery from that breakup, but no, just more process.
Not just the emotional work of disentangling two mingled lives and learning how to be in the same room and hold a practical conversation in civilized tones, and not give in either to the huge love or the awful rage.
There’s the special spoonie stuff, brought to me by CRPS/fibromyalgia/dysautonomia/Hashimoto’s disease. Learning how to get everything done every hour of every day of every week, with little help, no encouragement, no prompting or reminding that I don’t think to set up myself on that increasingly irritating & necessary phone, no underlying love to smooth the steps out or to rest in the soothing of, between efforts. With winter coming on, there is SO much to do. He has come over a couple of times to help with that. How do I say thank you without weeping?
I noticed when we first met, before we were ever lovers, that my pain and brain fog dropped when he was within about 16 feet of me. Once we were partnered, that symptom-suppression held pretty much all the time.
So now, I’m doing all this with an additional physical burden of pain and, dear heavens, so much brain fog.
It’s a process. It’s a two-steps-forward-one-step-back process… and, frankly, those are pretty boring to read about.
So yeah, it sucks. And I don’t get to stop working on it. Spoonies rarely get breaks, and never get vacation time, from being sick.
I got a cat. She’s just over a year old, and came to me not knowing how to eat. (The irony is so thick you could cut it with a knife.) The first couple days, her hip bones kept getting sharper. A mini dog came over and showed her how it’s done. That was the first big bump forward. Her hip bones are marginally less sharp now.
She’s beginning to learn that that “I waaaaant!” feeling means she’s hungry. I don’t know how she lost track of that instinctive message, but she would sidle up to her bowl and then skitter away with a little flash of anxiety.
Drama is emotionally seductive and magnetic, especially to the young. So, that exciting pattern needed interrupting. I took up her food for hours, so there was nothing to sidle up to and skitter away from. At first, I held her bowl down to reassure her, but as she gets more settled and secure, I leave her to it once she gets started, and stay quiet so as not to distract her. I spent the usual cat-lady hours finding food she liked. (She’s definitely my cat: she likes real food, not Friskies.)
She’s quite a beauty — flared cheekbones, cute little nose, huge eyes with heavy liner, a charming overbite. A bit like Geena Davis, but with whiskers instead of dimples.
I’m taking her out with me everywhere. She gets along with everyone, having met eight cats, three dogs, two squirrels, and any number of people, with roughly equal aplomb. She’s turning into a service pet; already, my increasingly sluggish reflexes (which have given me some scares while driving) are slightly less bad. Wand-toys FTW!
Time to get on with wrestling the requirements for another day into a set of hurdles I can probably clear.
This is one of several blog posts I drafted late last year and got distracted from.
This isn’t the duckiest or most amusing one to read, but it’s so important for so many that I’m posting it anyway. (My mother will probably want to give this one a miss.)
This level of fundamental-ness has a certain appeal in the depth of winter.
Fortunately for me, I don’t have too much trouble with existential questions. At a certain point, when everything I thought defined me had been blasted away, and in my mind there was not a single structure left that held a fragment of my old self, and all I saw stretching away to the mental horizon was blasted mud and broken stone and shapeless lumps and rot… I asked myself, “None of ‘me’ is left. Who am I?” And I realized that something was standing there, doing the asking.
That was my answer: I’m what is left after everything has been blasted away. I’m the immanent awareness, unable to be seen or described, simply because only less-permanent things can be seen or described.
As I think about that last sentence, I realize why objects lost their fascination for me. It was weirdly easy to get rid of gorgeous and glorious things I could no longer afford to keep. A couple of them I still miss, like my old bedstead (birdseye maple, passed down from my grandmother), but very few.
Things did get worse for awhile, and only curiosity kept me alive. (I simply had to know how the story went.) It propelled me through the work of surviving when my body had failed.
Angels appeared just before it was too late — several times; my life was a solid group effort — and eventually I fled the area and got my disability check (yes they were related) and could afford to survive. I have some photos that seem ethereal still, I look so nearly gone, smiling back from the edge of the grave, happy I don’t have to take that last step.
As usual, lately, I’ve wandered off-course.
My ability to track a tale (remember I survived the impossible because I had to see how the story went?) is enfeebled. It’s barely tottering along on one of those cumbersome canes with 4 feet, too heavy to lift and too necessary to leave behind.
I grind to a halt in my post, forgetting what I started this for, but this time, I’m letting you in on the secret. This blog is not retired, and being incapacitated has not excused me before, as a flick back would show. Or even when I was blowing bubbles.
I’m approaching this winter with the determination that it will be different than the last, which was an endurance exercise — one that went on for 9 months, as Spring never sprung and my Summer was clouded by meningitis.
So far, I’m getting more physiotherapy, more outings, and even have a weekly pain group I meet with. The higher level of activity is key; because exercise is so important for healing and supporting the brain, I have to find ways to stay active, despite the obvious drawbacks for someone with roaring sensory and cardiovascular issues to leaving the house during a New England winter.
I’m pleased with that. Yay, me!
Now for the other part.
Too much exercise is poisonous, because I have a solid case of exercise intolerance. I can safely walk less than a mile, which really irritates me. It takes that long just to warm up!
Also, drawing and sketching is back to being hard work. For awhile there, sketches flew out from under my pencil like they’d been crowded in there too long. Now, it’s stick figures with bad hair. I draw anyway now and then, because it’s better to keep trying than to give up altogether.
I don’t want to exercise too little or draw badly, but I do it anyway. Why? Because there’s always an afterwards, and I still have to work on influencing an “afterwards” I want.
Meanwhile, as my ability to juggle logistics is holding ground, my ability to juggle language is slipping.
After I was a nurse, I was a writer. Before I was a nurse, I was a writer. I started calling myself a writer before the age of 10, and started rescuing and healing animals shortly after.
I’m crashing into the stupefying question: “What am I, if I’m not a writer?” I feel like nothing without that. I feel like an intrusive blob of snot on the face of the earth, out of purpose and out of place and not very pleasant to have around.
My immanent awareness looks on as my sense of self weeps helplessly. It is what it is. I am what I am… whatever that is. That will always be true, even as everything else changes.
Meanwhile, though my strength and endurance are rather better than I’d hoped, my blood pressure and pulse are less stable. One more set of variables (or issues) to chase down, one more group of tests to orchestrate, one more set of diagnostic efforts to get through, one more possible adjustment to my regime to figure out, integrate, and absorb.
By the way, that lower abdominal pain has no treatable cause. Nothing to be done but roll it into the bundle of issues (or variables) to manage and work around. Every. Freaking. Day.
This is what it’s like for me to head into winter.
A cousin and I promised each other that we’d live forever until the day we die. That agreement still stands, but gee whiz, could this be a little less tiresomely complex??
Update: And here I am, 2 months later, writing again. Still waiting for drawing to come back, though.
Digesting my food is hard work now, again. Always something.
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.
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’ve been absent from the blogosphere, I’ve been pushing the rock of life further uphill. I’m cautiously optimisitc about getting it to the top and watching at least this particular tedious weight roll off in a new direction, eventually.
Being safe, having survival assured, and being surrounded by loving and trustworthy people was the biggest part of it. For the tools that I can control, it was just what your grandma probably advocated: eating good food, drinking good water, and getting fresh air with a bit more exercise than I really wanted to go for.
With neuro disease, our bodies need more nutrition than our diets can possibly provide (especially when our guts don’t want any), but our supplements go down a lot better and get absorbed much more usefully if we eat well. I used lots of wild blueberries (dense little packets of brain-repairing anthocyanin antioxidants, yum!), a variety of hard cheeses (2-year-old cheddar, 15 month manchego, and 1 yr English goat cheddar, in my case) for the brain-boosting natural phenylalanine, and fresh leafy veg as close to every single day as the two of us could manage, because they are so good for everything.
We have artesian well water. It. Is. Outstanding.
Air & Activity:
I asked J to nudge me into getting some exercise every day, if I didn’t get onto it myself. That’s easy for him, because he too likes to get out and get into the open air. On bad days, I hold his arm and go anyway. On really bad days, I go slowly. But I get out, walk on the burning coals under my feet, and keep walking out until my feet stop spasming, then walk back. Sometimes that’s over a mile, but the thing is, I find that if I walk long enough, with enough breaks and the right footwear, I can knock back the pain and spasms — not to mention the frame of mind that tends to go with them — well enough to brighten up the whole day.
So.. I can think! Amazingly often!
I wrote a BUDGET last week!!!
It wasn’t entirely in the right direction, but I figured out how to stay (just barely) in the black. BRAINWORK FTW!
So, with that incredibly awkward seque, here’s the hot issue.
It’s a topic that is all too pressing a reality for people who’ve had their butts handed to them by a disability that affected their ability to work, and then destroyed their means of making a living:
That’s right, ladies and gentlebeings, I am tackling the third toughest issue (right after 1. survival and 2. getting responsible doctors): 3. working through the PTSD, ADD, anxiety, brain fog, and intermittent dyscalculia which this brain disease and its financial consequences have caused, in order to get my credit rating back in the black.
I have barely been able to look at a spreadsheet for years, due to the numbers dancing around like a hallucination. Dada via Josephine Baker. Just unmanageable. But I can look at one almost every day now, and it’s amazing how easy it can be to push those numbers around intentionally!
I’m glad to be able to take this up. More on it later, with numbers to call and strategies to take for rational results.
I’d been in a really bitter, increasing pain jag for days, and though a dose of Norco and dramamine gave me one good night Wednesday night, the pain started ramping up again once the meds wore off on Thursday morning.
That was bad. Very bad.
The Norco usually breaks the cycle. I definitely did not want my body thinking it was normal and appropriate to keep cranking up the pain.
I worked in the yard Thursday late morning (John keeping me from overdoing on any one thing, because I couldn’t track well enough to notice), because I just had to move through the pain to keep it from making me lock up.
Then I took a disco nap, dressed up minimally, and went to see Boz Scaggs at the Calvin Theatre in Northampton, which we’ve been looking forward to for a month.
Side note… I haven’t been inside the Calvin for 30 years, and it looks it around the gingerbreading, but apart from the art-nouveau panels it was in great shape.
The opening artist was a solo acoustic set by Jeff LeBlanc, who has had some success but not that much; an unfair position to be in, because he has the creamiest tenor I’ve ever heard in the rock/folk-rock realm, a pleasing and rather classy onstage personality, and a delightful way of framing and playing his material. He has matured just since recording this:
I mean, John Mayer can just shut up and move over. Beautiful.
The Boz show was outstanding.
He used to go in for pyrotechnics and flash, I’m told, but this show was just pure, perfect musicianship. His 7-member band fattened up the sound in the smoothest, tightest way — every note perfect, every beat perfect, and the band grinning and digging into the show like they were as happy as we were.
Bonus: I finally understand what musical stage lighting is supposed to do. I’ve seen a few shows and, apart from the spotlight, the shifting colors and intensities just seemed to be either distracting or hokey. The lighting actually worked this time, and I only noticed because there was one single slightly missed cue, and then I noticed how flawlessly it had been guiding my attention and floating with the music until then. I could see everyone, but each musician was distinct, and the soloists glowed. Every moment was beautiful. Who knew?
I was absolutely jamming. Every song was just a whisker better than the last (perfect) song, and everyone was having a fabulous time. I was lost in it, elated. I was rocking in that ecstatic state that a great performance can put you in… and suddenly, I swear I felt my brain move: my left front inferior pareital portion and my right lower temporal lobe and some bits elsewhere gave a squirm, a shift, and then clunked into a more comfortable position.
Then I realized I was in no pain. No pain! I mean, NO FREAKING PAIN AT ALL!
I’ve got to look those parts up and see what they relate to. I may be overthinking it, of course.
Fast forward past a couple post-show hours of “wow” and a happy thunk into the pillows; waking up to a beautiful dawn and feeling, in the words of Tony the Tiger, grrrRRRRREAT.
Still have allodynia, where a breeze feels a bit like a hot iron sliding over my skin. Still feeling a bit fragile, like my body might tear at the seams if I try too hard. Still not pushing it (which means I gotta get off this keyboard.) But my baseline pain is back down, well below the event horizon of functionality, and I can sit and stand and move and there is NO FIRE. NOR FIRE AT ALL.
Those coals banked in my feet and hands and knees and every single bone of my spine and so on and so forth are just gone.
This is a good day, folks.
Next on the agenda, after finding our own home and getting the outstanding business nailed down: Music lessons. I don’t know in what, but all those scientific studies about the different ways the brain benefits from hearing and playing good music are suddenly making a boatload of very personal sense. Victory! Thank you, Boz & co. 🙂
A dear friend is embroiled in one of those ghastly legal tangles where the vultures are rigged to win. I’m the key defense witness. This comes up later.
This whole winter, I’ve been basking — simply basking! — in the sheer delight of being safe, sheltered, warm, loved, and with as little chaos as anyone with a recent move, a complex illness, and widely scattered relationships can get. Occasionally, I’ve wondered if I’m allowed to be in such a situation, and strained my ears for the sound of the other shoe dropping… Then I do a reality check, tune in with my lovely partner and my lovely housemate/hostess, and it appears that no, it’s okay, things are right, and this is what’s right now.
My nod to the fairly relentless self-management that got me through the past decade has been an occasional effort at meditiation, a minute or three of qi gong, a few moves of t’ai chi now and then, or the occasional mood-check.
In short, diddly-squat.
In December, I lost it with a dear friend.[LINK] I did more mood-checks for awhile, a bit more meditation, maybe ten whole minutes of t’ai chi every other day for a couple weeks.
I was heartbroken at the mess I’d contributed to, but couldn’t dig up the motivation to really “do the Do”, to restart my hard-won disciplines.
Dear heavens, it was soooooo good to rest, just relax for a change, enjoy the sensation of not looking over my shoulder and not being constantly *forced* to calm sometimes-legitimate terror or possibly-reasonable panic.
It was winter. I was safe. I let my disciplines sleep.
Meanwhile, the brakes on my car[LINK] were acting up, or rather, occasionally failing to. $2,000 later, that was supposed to be fixed.
Gradually, I noticed that J was telling me, more and more often, to lower my voice: “I’m right here!” Huh. I didn’t think I was talking that loudly…
As I relaxed, other humans became more interesting and I started striking up conversations with strangers, as I used to do. They didn’t respond as well as they used to. Odd…
On social media, I found myself being snippy where I used to be sweetly witty or wryly amusing to make the same point. I backed off of my online time, because if I can’t manage myself well, I’d better not interact with anybody else who might be feeling frail. “Do no further harm” has been wired into me from way back. It’s the most basic courtesy.
I took the car back for a second brake job a few weeks ago, only $150 this time, and that seems to have taken care of the problem. So my cynicism about car dealerships remains unimpaired, thank you.
Meanwhile, there were some tellingly unpleasant procedures[LINK] which illuminated a fact I’m still failing to accept: CRPS has moved into my viscera — it has leaped out of the musculoskeletal bounds and gotten right into my core. I used to say my case was “all-body”, but that was because of the gastroparesis and subtle endocrine weirdness, which I figured was simply faulty autonomic signaling. It has definitely become much more.
I could feel every line of my intestines and the springy squashiness of my organs as the ultrasound tech noodled around on my abdomen, and the less said about the gynecological exam the better. It’s real. It’s a bed of coals in there. This finally sank right through my skull over the past few days.
Damn damn damn damn damn damn damn damn damn damn damn damn damn damn damn. With extra damn.
So, now we’re up to this week.
I spoke with the lawyer involved with the vulture case mentioned above. I went off on a tear about the duplicity and injustice involved. He finally broke through by howling my name in exactly the tone my mother used when I was getting out of hand. Once I was quiet (and abashed), he said very sweetly, “If you’re going to go on like that, you might as well hit your friend over the head with a two by four.”
Two things happened. I realized that my self-regulation was much worse than I had ever imagined; and I spent the day in a state of total exhaustion and emotional fragility, the classic signs of a massive adrenal-dump.
SIMPLY GETTING WOUND UP IS BAD FOR ME. The mere state of emotional excitement is poison to my system.
I used to know that.
I used to know when the emotional excitement was coming, and could head it off.
Nope. Caught me completely by surprise.
So, I’ve been processing all this for a few days to a few weeks now. I’m coming to some conclusions, and have a few remaining questions.
I’m pretty sure the spread into my viscera had a lot to do with the merry-go-round of the past few years.
The spread in my brain may be related, in fact it must be; however, I’m pretty sure that re-incorporating my habits of self-care and diligence can get back quite a lot of the gentle precision, sweet tact, and pleasant diplomacy I was once capable of.
So, in keeping with this revelation, I’m going to acknowledge that I’ve completed my alotted time for being on the computer and get up to go do some morning activity. Then I’ll put my feet up for a bit and lunch on brain-supporting food. After a digestion break of an hour or two, I’ll do something physical in the afternoon, including 20 minutes of t’ai chi or qi gong. After that, an hour of work, which today will consist of loading my classical collection onto my tablet. This evening, I’ll spend an hour listening to classical music, then meditate, then apply my lotions for pain and muscle spasms before bed.
There are no bloody shortcuts. None. It’s just work, and it doesn’t stop.
I’m still supremely glad to be safe and warm and loved. I just have to wrap my thick head around the fact that it doesn’t mean I’m off the hook for taking care of myself.
On average, it takes 2-5 days to adjust to a change in the weather. This is part of the fun and excitement of CRPS, dysautonomia, fibromyalgia, and all those lovely dysregulating diseases of pain and neurological shenanigans.
New Englanders like to say, “If you don’t like the weather, just wait a minute.” Clouds and sunshine chase each other swirlingly across the sky like teenagers at a party. Precipitation, in one form or another, is bound to happen at least twice a week.
However, up until recently, there was a pattern in the seeming chaos. October hosted the last of the 50-degree weather, December saw the first few inches of snow that really stuck, January and part of February were bloody cold, March was named Mud Month for good reason.
Bar the occasional storm front, when the barometer plunges like necklines at a Red Carpet party, I could live with that. Once it’s fall, it’s fall; once it’s winter, it stays winter, until it gets muddy, and eventually the glorious summer blesses us all and reminds us why we put up with the rest.
Over the winter holiday season, the naked (???) earth finally got dusted with snow. That quickly turned to sleet and then it froze (!!!). There were a couple of warm spells which didn’t melt the packed ice, just packed it further… we spent alternate days staggering over frozen rucks and through soggy mud, to try to maintain the dirt driveway.
Sunday, it was pushing 50 (like me), and raining cats and dogs; the ice finally melted — except for a few sneaky patches that merely absorbed the color of the sand so they could lurk, invisible, and slap down the unwary walker. Then it went down to well below freezing, and I got slapped down on a sneaky patch of ice because I forgot to wear friction doohickies on my boots. Last night, guess what? It snowed! We got almost 2 inches and we might get more.
I’m begging the weather gods to let it stay.
In the last few weeks, temperatures have seesawed between 20 degrees Fahrenheit above normal to 10 degrees below normal for this time of year (when it’s supposed to be simply bloody cold and frequently snowy.) Sometimes, we see that difference happen in one day.
So, if it takes 2-5 days to adjust to a weather change, and the weather is changing every day or three, what is a poor body supposed to do? Mine is whining. It’s just curling up in the chair and whimpering gently and steadily. It’s working so hard at handling the weather changes that showers and shampoos are something that happen to other people; there is no way this blood pressure and neurological system can take that much direct stimulus. A few swipes with a washcloth, a scarf or hat over the unwashed hair — it will have to do.
I still have to snap the leash on and drag this body outside at least once a day, but it’s duty, not fun. I’m sure I’m better for it afterwards — but I still climb straight back into the squishy chair, and let my body whimper for a bit.
The meteorologists on TV refer often to “the El Niño” effect, which makes me laugh. I’m pushing 50, remember? I’ve been through a lot of El Niño years, on both coasts. This isn’t El Niño. This is a huge bloody shift in the climate, and I don’t know how long it’ll last or where it will leave us.
I just hope it finds some consistency from day to day. As long as I have a few days to adjust, I’ll be fine. All I want is time to do something besides listen to my cells whimper!
I tell you from personal experience, it takes time and study and a lot of experimenting, but many have done it and I did for years.
I found that nutrition, activity/rest, and mental hygiene were the Magic Triumvirate.
Nutrition has a huge effect on what happens in our cells.
Activity re-regulates the whole CNS, while our bodies require rest and pacing to let the activity happen.
Mental hygeine encompasses meditation (sitting, yoga, tai chi, qi gong, relaxation exercises), cognitive behavioral tools (such as noticing tense postures and re-grounding and releasing them, playing chamber music or soft rock or soft jazz to calm the brain down, using lenses and mirrors to remap the brain’s crazy ideas about our bodies, biofeedback), and the art of distraction (absorbing books/shows, phone calls with friends, coloring abstract designs, doing something you enjoy, doing something productive for the neurotransmitter-boosting pat on the back you give yourself for doing it)…. all very important and useful stuff.
Learning to plug all this into daily life is a monumental task and it takes time to learn what YOU need to do, but the time will pass anyway and crps is still a full-time gig anyway, so you might as well be healthier and bether informed.
If you don’t mind one strenuous suggestion: before you take out anything, be sure you’ve plugged in something else that already helps. So, for instance, I got healthy fats (for neuroprotection) on board before I cut additives and phosphoric acid out of my diet. Those substances are neurologically addictive (“have a cola and a smile!”) and I knew from seeing people deprived of preservatives and sodas suddenly, that there’d be an unhappy withdrawal period. Once I had the coconut oil for cooking veggies, the grass-fed butter, and the olive oil & avocados going, I hardly noticed the change and didn’t even want colas or packaged food after a few weeks.
Again from experience, I suggest a combination of liver cleansing food (parsley, milk thistle, avocado hearts, dandelion, cilantro) and phosphorus-rich food (lecithin especially, mixed nuts) to calm the shift off of medications.
The liver uses phosphorus to process meds, in a process called (not surprisingly) phosphorylation. Providing plenty of raw material for phosphorylation really smoothes out medication issues for me. Lecithin has a mild, slightly buttery taste, the granules are easy to clean up after, and it makes fats (neuroprotection, remember) a lot easier on my sulky digestion.
Also tons of water, seltzer, whatever fluids you can get in. Most modern human central nervous systems are chronically dehydrated, which makes crap build up and that increases inflammatory response and pain. The bathroom breaks are time well spent: I need to get up and move a little anyway.
I blog some of my stuff here at livinganyway.com. I also recommend www.tamingthebeast.ca since she manages mast cell disease (massive drug allergies) on top of crps.
I use lemon balm (Melissa officinalis) extract for flares, and it is great for nerve inflammation. It’s been used for shingles and cold sores for millenia.
Clove oil — well diluted! — is outstanding for nerve pain.
Emu oil is good for almost every kind of pain, and absorbs amazingly. I use it by the drop, it’s so effective, and I add a bit of clove oil for good measure.
I’d add st johns wort oil as well, if I had any, because it does something remarkable to neurotransmission that smoothes out the pain.
I take neurotransmitter precursors twice daily, and they’ve been found to suppress pain signals at the spinal nerve root: 5-HTP and D,L Phenylalanine.
I also take st johns wort. I used to use it instead of neurotransmitter meds like SSRIs, SNRIs, tricyclics, etc, but now I take it alongside and I find I get better results with fewer side effects.
Epsom salt baths help with flares, pain, dysautonomia, all kinds of yuckiness. I have to be up to a bath, but when I am, it’s wonderful.
I stick to whole foods with almost no grains, healthy fats and oils, quality meat and eggs daily but not hugely, starch from root veg and stalks. I have to hit the roadside stands, membership stores, and offbrand markets, because this stuff costs rather a lot in the supermarket, but this is a great area for organic and whole food.
I did without meds for years and I’m glad I did. For someone who’s had this disease, with several complications, for 15 years, I’m in phenomenally good shape. Now I take a wee bit of an SSRI and an SNRI, and antihistamines to manage my own mast cell histrionics, and with everything together, my pain is roughly 90% managed, sensory sensitivity is down to a functional level, stamina allows me to be up for most of the day, and my dysautonomia probably 50% managed. Sadly, still not enough for a job or much of a social life, but, fortunately, I did finally get disability income and many of my friends are able to come to me 🙂
Now that I’m writing more, I find (again) that I don’t always know if I’m writing a blog post or journal entry until after the fact. (When I’m in practice, I always know ahead of time.) Naturally, the blog posts go here, and the journal entries don’t, so this is only visible at my end. However, I’m getting more journaling done, and that’s definitely good for my brain!
My partner J is learning to pace himself. He’s bit older than I am, is a bit hyperactive, and has had outrageously good health all his life. The onset of, um, late middle age is coming as a rather shocking surprise to someone whose body seemed to hold its position from 25 to 55 … and then it only took a decade or so for him to have some peace and wisdom around the fact that it’s time to act with more peace and wisdom.
Of course, in his case, he first had to find a place where acting with peace and wisdom was a survival path, rather than an invitation to younger predators.
I used to think that it didn’t much matter where I lived, that people were people and that things would work out much the same nonetheless. Boy, have I ever changed my mind about that. Some places are nice to visit, but I wouldn’t want to live there.
Back here in the North Beast, the cold snap has us both moving slowly. We’re about 2/3 done with sanding the driveway, and will take a couple days to rest until the next push on that task. It’s good to sit here in the living room all cozy and peaceful, because he’s now comfortable with doing things in episodes.
Pacing is a tough thing to learn, but it’s nice once you get it. It’s easier on those around you, too. Who knew? I never thought of that before, until I was one of those hanging around a person who paced himself successfully.
We are warm, safe, housed, fed, loved, and cherished. For all the years that none of that was true for either of us, well, we never knew this was up ahead. We had to stay alive long enough to get to this point. It wasn’t easy. I’m glad we did.