My tiny handful of fellow “imps of the possible” are all for it, completely understanding the uncertainties and sidetracks and possible (even probable) different endings in store – and knowing that it’s the reach that’s important, that spreading
I do well with having rather demanding overarching goals. (Trauma nurse at DC General, software geek at Borland? yeah :)…) I have some good mental and creative goals (books on mythology and CRPS neuro-endocrine-immunology, 501c3 called “CRPS: Art and Spirit”, etc.), but my physical goals are reactive rather than proactive.
Right now, it’s all about beating back the assaults on my function; there’s none of that necessary “F.U.!”-sized stuff on my horizon that can help me bring enough focus and determination to vault over such paltry issues as washing my damn hair. (One side of my face laughs wryly as I say that.)
There’s the shorter CRPS walk/roll/run in December, Quench the Fire!, and that’s a good, reasonable goal.
I need a slightly unreasonable goal, or I can’t really focus. Normal goals really do bore me. Sad, possibly warped, but true.
And this reactive mindset is doing me no good at all — look at my last stallout. Awful.
It’s just awful to be reactive in my goals, and especially in the goals for my horribly challenged physical self — my only vehicle of life.
I have to do better.
I need something more — something a bit larger than life to strive for. (Just ask my mother. I’ve been like this since I was at least 2.)
So… I’m considering running next year’s marathon.
+ I have a year to pull myself together. If you could help hook me up with some kind of structure for training, so much the better.
+ Keck staffs the medical tents, which I find automatically reassuring.
+ It’s slightly crazy, but not completely insane. Perfect.
– Mostly pavement. A real problem. (I don’t have to train on pavement, though.)
I think the Ayes have it. What do you think? And, if I’m in town, I’d be delighted to do the 5/10k at the end of this year. Not as a goal, but as a coincidental benefit.
|It’s all about pacing.|
And, of course, I might finish.
(With a little publicity, this could be pretty cool all around. Fat, brittle, middle-aged, chronic CRPSer turns marathoner. — Huh, that gets MY attention! And how cool if I was not the only one….)
Marathoning is a different mindset, but I think it’s learnable. And learning to do a marathon in a paced, calm, controlled, ANS-managed, non-frantic manner… well, that’s one hell of an F.U. to CRPS!
I look forward to hearing what you think about this… I think 🙂 I really do want your advice and would love to be able to check in with you as I go, so please mull it over. I’m seeing my whole team next week, so I’ll get to do plenty of hashing-out. I’ll blog it and talk it over with some of my old guard this weekend, too, so I’ll be better prepared for our conversations.
Dignity is optional. Progress is not. Words I live by.
My new kitten has changed apparent gender twice, and is back to being a boy kitty — not that it matters in any practical way. I was looking for a name as elegant, good-natured and playful as he/she/it, while treating an upper respiratory infection that made that left eye look like a mouse:
|My cat’s mouse|
But then, with returning health and strength, his natural energy and violence reasserted itself. He has exactly two gears:
1. Unconscious (or nearly so)
2. Full-tilt, greedy, grasping, and spikily impulsive (as the scratch-marks around my blinked eyelashes attest)
So I’ve named him Siddhartha, in the hope that something will rub off.
|Siddhi playing hide-n-seek.
(“Siddi” is an Arabic address used towards a respectable gentleman.
Another fine malapropism from the chronically punny.)
All of his front nails are trimmed now…
|In health care, we call this “desensitization”|
As for my own care, I’m up to 2/3 of my reiki time and 2/3 of my basic qi gong routine, and hope to get some t’ai chi in today as well. This is tremendous progress.
Vegetables are once again a chief component of my diet, thanks in no small part to an enormous bag of frozen “Normandy style” blend from Costco and our local dollar store, which sells cheap organic produce out of cardboard boxes.
I actually did laundry yesterday. Today, I hope to take a shower and — gasp — wash my hair!
I realize only a minority of you will find that truly inspiring, but the rest can have a good laugh… and then think for a minute 🙂
For me, life with CRPS is indeed a matter of tiny triumphs and great goals. For the record, I’m still bound and determined to advance the search for a cure, and yes, I’ve gotten slightly more concrete in my ideas about that… More to come in time.
And now, just for the deliciously hokey yodeling at the end…
Here is a recap and explication of the links used in this post:
- Frustration at the wall
- The Buddhist World: Gautama Buddha (external site)
- On desensitization, I linked to my post on Remembering and re-membering.
The sheer activity of Espom salt
Pushing back on neuroplasticity
- Where you can buy Lee Holden’s excellent beginner routine, which gets more interesting, more useful and more inwardly complex the more I do it: Qi Gong Flow (external site; his work highly recommended)
- An excellent blog post on the relationship between tiny triumphs and great goals: New year, new thinking from Elle and the Auto Gnome (external site, very highly recommended)
I have had less energy than I do now, but I have never had less motivation. Me? Unable to start something? This is so out of character that it’s a bit like seeing Mother Teresa bite a kitten — unfathomable.
Speaking of eating, I’ve been craving sugar so intensely I have truly felt like I’d lose my mind if I didn’t eat sweets. I haven’t had serious sugar cravings for almost a decade. That was one problem I never ever thought I’d be dealing with again. That’s finally lightening up, thank goodness — and thanks to some mental judo and nutritional first-aid. I can’t take on any more weight or the pain in my feet will become unbearable, and my hips are already giving me hell.
I have great blog ideas, but getting them into words isn’t happening. No… words… come… together. This is so strange I don’t even need to elaborate. This is the first thing I’ve been able to write in weeks and it’s not a blog, it’s a tirade. Excuse me while I scream.
My muscles across my shoulders and upper back are so tightly knotted I can’t do my exercises or qi gong or even more than a stroke or two of tai chi without that weird warping sensation when the muscles pull my moves awry — and then the nerves pull back and howl. Some activity would be better than none, but low as that bar is, I just can’t make it over.
I got a break from my muscles last night when I loaded up on Flexeril (if you follow this blog, you know it’s almost unheard-of for me to hit the CNS-affecting meds) but the lethargy, brain fog and stupidity this caused, for 18 hours afterwards, is hideously limiting in itself.
After trying to do my most basic stretches just now, I took another dose. I will NOT let this twisty locked-up posture become the new normal.
And somehow, nevertheless, I will function tomorrow enough to get my pills and get my gear and get my food for the day and get my sorry ass over to OT and PT and hope something can break through this maddeningly comprehensive barricade.
Needless to say, this is not my usual pleasant, mindful, lemons-into-lemonade sort of post.
This is me grabbing the damn lemons and throwing them right back, hoping to hear a few screams as they connect.
In the fullness of time, I expect I’ll be able to find a trigger, or a clue, as to what exactly started this and how to avoid it in future. I can’t see it from here, and maybe this is the start of what I dread most: The Slide, the final descent into irresistible helplessness and incompetence.
But I think not. I’m too damn angry to give it that much room.
Let’s see what happens next. My money’s on the chunky blonde with the harsh mouth and crappy attitude.
… And the new kitten…
from the first refusal to cut pain signals off…
to the growth of the brain cortex area that monitors that body part, so it can handle more pain signals and provide less space for normal body areas…
to the deeper remapping and rewiring that alters cognition, disrupts memory formation, screws up autonomic signalling, knocks endocrine and digestive function out of whack…
and so forth.
It’s important to stay on top of the brain, so to speak.
Having said that, it’s not completely reciprocal, nor is it ever under perfect control — unlike a good trapeze act.
- neurons hook up, and a connection (or association) is made;
- if the connection gets used (or the association is allowed to stand), more neurons hook up to make it stronger;
- once enough neurons have hooked up, the connection becomes like a good road;
- and the thing about good roads is, they get used, even if they’re used for something odd.
- Make sure the roads in your brain are useful to you.
- Do that by pruning the connections you don’t want.
- Prune those connections by letting the associations die.
- Let a connection die by deciding to think about, or do, something else, whenever it comes up.
Consistently. Persistently. Relentlessly.
- And keep making that decision every time it comes up.
It works by a negative, which is not how we are taught to do things: turn away from the response, shut out the perception, ignore the link. That’s how you prune an unhealthy connection.
It takes time, but it works. The time will pass anyway, so your brain might as well be better off at the end of it…
|Only constructive connections, please.|
|Egrets make great distraction, especially in funny socks.|
Yesterday, I got a little more white grape juice and pedialyte than I thought he’d need, just in case we needed to jump-start someone ele’s treatment. Looks like it was just about enough, though.
Over last night, L and I hammered 3 doses each of oscillococcinum, which we usually find very effective in warding off the flu. I’m used to respiratory flus. We shall see.
Today, L wiped all the knobs and surfaces with alcohol and washed all the towels and linens in hot water. Growing up, she had two rounds of rheumatic fever and her mother had adult polio, and the entire family got chicken pox at the same time; she knows what to do “when there’s sickness in the house,” to use her timeless phrase.
I stood back and made encouraging noises, and wished — for the very first time, every time — that I was able to be just a bit more use.
With the autonomic nausea I’ve been fighting off and on for weeks now, it’s hard to say if I’m actually getting flu-y or if the autonomia is kicking up. As I finished picking up the kitchen, though, my insides let me know that they are considering the value of reverse gear. Nothing substantial, just a warning…
|That’s the autonomic transmission, on the right…|
Intestinal flu wreaks havoc on the autonomic system:
- Turns the GI system inside out, which boosts inflammation, disturbs blood sugar, and wastes fluids;
- Whacks out the electrolytes, which alters nerve transmission and pretty much every other cellular process, generally spiking a pain flare and roasting the higher cognitive functions;
- Dries out the body, which puts what’s left of the fluid-dependent brain and CNS in the toilet — along with everything you’ve eaten for the last day.
A healthy body has metabolic margins to absorb this with considerably more grace. It’s still bad, mind you — really rotten, in fact. Pre-injury, tummy flus always made me wish I was dead.
In a body with dysautonomia and CRPS, it’s a ghastly festival of burning, of mindless agony, and a sheer dreadfulness to existence that words can’t touch.
So I’m considering a quick Epsom salt bath to preload my system with that lovely electrolyte, I’m getting up a blog post with these wonderfully dinner-appropriate details (hah!), and hoping that L — who, as she has often said, did have her flu shot this year — will be well enough tomorrow to run to the store for more pedialyte and white grape juice.
Everything comes to an end, even the flu. The awareness that there is always an “afterwards” is always with me now. It’s a good thing to keep in mind, because the reflex is to get lost in the now, when it’s overwhelming. But there is always an afterwards.
I’m not worried, I’m not anticipating, I’m not buying into the nerves. My mind always runs contingency plans, but that’s natural for me. (If I can’t come up with a plan B and a plan C, check for a pulse.)
So it’s time to catch up on a few things, push extra fluids, coach my body into the tub and back out again, and take things as they come. The low energy just means I have more time to watch DVDs; the wonky tum just means I don’t have to think as often about what to eat.
But seriously… take every opportunity to be happy; it makes you stronger. 🙂
I’m working on a series of 3 novellas, a triptych:
1. Kronos in season: The growing-up of a primal god.
2. Hell — the bright side: The original story of Persephone, the original career woman.
3. Pain, a comedy: the intimate family drama that came down to us as the story of Chiron, the wounded healer — and possibly the first recorded case of CRPS.
(Warning: slapstick and hangman’s humor, sometimes simultaneously.)
I’ve been bogged down on number 2 for the best part of a year. In other words, I’ve been stuck in Hell… heheh.
|“That Heironymous Bosch. What a weirdo.” – Good Omens|
When asked what I write, I usually talk about CRPS and turning medical science into plain English. When asked what my favorite thing to write about is, I have to say, it’s mythology.
“Wait — mythology? … Why??”
Because myths are about the greater parts in ourselves. Those of us in unbearable situations (like the Newtown teachers or Mother Theresa or, indeed, anyone with a terrible illness) have to be superhuman at times. Sometimes most of the time.
Myths remind us of our innate capacity to reach beyond our limits and own the moment, hideousness and all, so that we can lift ourselves beyond all reason and find a way to make things better.
We have modern myths, like James Bond, Star Trek, the X-Men and Harry Potter. While they have their limits as myths, they still meet the inward need to see that part of ourselves that can bear the unbearable, survive the murderous, and emerge victorious from a no-win situation.
I should have died at least 5 times in the past 10 years. But here I am, very much against the odds, still thinking (sort of) and writing. Rediscovering mythology played a part in that.
And, more than ever, I find it incredibly easy to tell those enormous stories as if I were talking about real people in real time — because, in my own mind at least, I am. When I write about gods and demons, I’m writing of things I know, although under different names.
You should meet my friends with CRPS — and some of their parents. These people embody powers of creativity, diligence, determination, resourcefulness, strength and brilliance that make the great gods of prehistory look like punks, and leave modern adjectives beggared. Telling myths is easy-pie after talking to them!
If we should stick to writing what we know, then I’ve been to Hell and back so often they’ve installed a revolving door for me. I’ve wept on the knees of Hera. Sedna is my sister. I’ve heard Taliesin’s lament. Coyote has my home address, and comes over (too often) for tea… I have my suspicions about what he puts in his cup — and mine.
I won’t discuss the demons, except to say that they, too, can usually be healed. But it’s always by the thing you wouldn’t think of.
“O..kay.” Checks my head for tinfoil hat. “But what does mythology have to do with CRPS?”
It gives us back the unstoppable inner part of ourselves that can defeat it in the end.
|And that’s good medicine.|
I took that week to reflect, which was appropriate. It had been, for me, a year of great inward shifts, starting from the inevitable, flattening despair of the massive practical and intangible losses this disease brings, to a new awareness of possibilities that I had discovered, fought for, or created out of whole cloth. It was probably the year that this blogging voice really took shape.
This year is quite a bit different. I’ve been technically homeless for most of it, catching up with friends I hadn’t seen in far too long, and looking for a rational way and reasonable place to set up my post-poverty life. (Oh well.)
Despite my plans, I haven’t had much time for reflection these past few weeks. Physical survival in the form of an income and affordable home were taken care of… but then the survival issue became much more personal, and at the same time, even further beyond my control as my nervous system took off without me.
Despite all that work, all that expense, all that hope of 2012… Nothing is assured. There is more to manage, but less I feel I can hang onto.
Admittedly, this isn’t my cheeriest post ever. Be assured that my determination remains unmoved.
Our calendar is only loosely tied to anything but mental habit — and centuries of political pressure.
But it does us humans good to have a chance to pause and reflect, think about how we define ourselves, how we adapt, how we react, how we think, notice what we’re grateful for, what we cherish and want to keep.
As for me, that’s now too obvious to bear speaking of.
It’s more than enough to keep me going!
Whatever we call this day, it’s one more in the middle of an adventure beyond imagining...
Adventures tend to be damned uncomfortable things, as Bilbo Baggins was not the first to assert; but they make good material. As a writer, I get something out of that. If it’s a form of insanity, at least it’s an adaptive one.
Come with me on the journey. I always appreciate the company.
Links to blog entries:
Bashing the hull and ripping at the rigging —
Can’t tell: is water pouring over outside
Or pouring in inside?
So much it’s hard to say.
Will something come loose?
What sail could hold against this?
What rudder keep on?
Doesn’t matter…. It doesn’t matter. These are the ones I have.
The soul breathes regardless.
I remember that the answers come in the silence.
Step outside the storm, though it goes on without me
Feeling it, but outside, on the hull, not inside, not in me.
This vessel holds.
So I pause, heart whole or heart breaking,
and hold the silence
until I need to speak; and
if I speak from the silence,
then can answers come.
I lived on a sailboat for years, and J is a camper from way back, so we think it’s about right. I can hear some of you gasping and a few saying, in slightly strained tones, “Well, if you’re sure…”
It’ll do for now.
We paid too much for its years, but about enough for its general condition. It’s clean and tight and, with a few electrical personality issues not surprising in something 30 years old, is in very good shape inside. That is, the cushions, cupboards, furnace and water-heater are excellent!
The trick is finding a place to put it.
We look weird on housing apps.
This is new territory for us.
My nursing and writing/software resumes were irresistible, or so I assume, since I hardly had to look for jobs; they’d just as often come looking for me. J’s carpentry work is second to none, as his rate of re-hire attests. Too bad so much of it was in Mendo, where people change their phones like normal people change their underwear.
Work aside, I’m highly mobile (always have been, except when disease really slaps me down) and J is moving out of a region of the country which, in my view, is a total pit. Among other things, anybody who looks Native American (as J does) looks like a punching bag to the local thugs, uniformed and otherwise.
And, since we’re both now a little daffy, it’s not like we have the routines nailed down. As J says, “We put our two screwy brains together, and we’ve got one pretty good one.”
Still, I’ve always paid my rent on time, even in the worst of times; and J has survived 62 years as a neatly made, brown, feisty dude of less than average height. Persistence is key, in housing as in chronic disease. He is certain something will come soon. Meanwhile, we keep doing the rounds.
No sooner had I entered and saved the above then, on J’s advice, I called the manager of the mobile home park we wanted to buy a home in, just to ask if he might have anything…
He had one RV spot left.
It’s huge, has already been dug over and gardened in, backs onto a creek, has good neighbors and a manager who likes us, and it’s in budget (just). He took to us so much, he’s trusting us to move in Wednesday and do paperwork when I’m back the following Monday.
On our previous visit, I gave him a jug of real old-fashioned maple syrup from his old home and mine in rural New England. That might have made us more memorable.
|Img from this intriguing article: http://www.ishs.org/news/?p=1588|
My well-honed reflex is to wait for the other shoe to come flying out of the dark and whack me upside the head.
My determination is to be profoundly grateful, a good citizen, and maybe re-learn how to relax…
Meanwhile, I’m off to see my new doctor in LA…
I’m leaving tomorrow on a 2-day trek down. I’ll stop for a visit with relatives, giving J free rein on getting us plugged in, set up and organized. He’s going to enjoy that!