Author: Isy

I think I'm getting better.

A bad day

Isy / / CRPS knock-on effects, self-care, what works

I thought being able to live would ease my system. Unfortunately, my hands and feet are freaking out and going suddenly, rapidly downhill on pretty much the same trajectory as a week ago. I’m having the natural feelings that all artists, crafters, musicians and handyfolk have as they contemplate a plate of wieners at the end of each hand and wonder if this is finally it.

Reaction setting in? Perhaps. It occurred to me that even a surge of _positive_ emotion is still a huge shock to a fragile system. What I know for sure is that today has been the worst pain day I can recall. Off the charts.


Lacking a boyfriend, I’m contemplating my next pet: something with rough fur, since cuddling with texture helps my arms’ skin normalize sensation a bit. That could help.

The ground beneath my feet

Isy / / insur-dance, self-care, what works

I said quietly to my lawyer about an hour ago, “I’m not used to being massively relieved or explosively happy. So I’m just going to sit here and think about it for a minute.”

The settlement of my worker’s comp case turned out in a way everyone looks very pleased with.

First, I got something to eat (oxygen first, blood sugar second, everything else third, during big emotional surges — elementary mental hygiene!)

For the past half hour or so, I’ve been just strolling around, practicing feeling not worried about survival. Amazing how it all comes back.

This time, though, I’m well aware of embracing my inner Scot — I’ll tend my money carefully, because I understand its value and power as I never have before.

The crystalline nugget that emerged, as the shock and fog cleared away, was this:

I’ve always been rich. Now, I can afford to survive.

The happy thought that followed was: I can finally afford to have a pet. Maybe a ferret … I could use more work on my reasoning skills anyway.

"Nothing you do is in vain"

Isy / / loved ones, perspective, self-care, what works

My older brother’s sister-in-law has been doing international relief work for almost as long as I’ve known her. She was so helpful and wise, at the time that I was considering it myself, that I didn’t go into the field, though the thought of being so useful to those in such need was overwhelmingly seductive.

I know I don’t have the mental scale that lets you balance what you can’t accomplish with what you can, and decide whether the tradeoff is acceptable. The conditions are so harsh and the scale of work so grim that it imposes limits on care that are unimaginable to those of us who take soap and clean towels for granted; let’s not even think about bandages or IVs. I’d have come off very badly indeed, and that means I couldn’t have done much good.

In our intercontinental conversation on the subject (she’s British), she pulled off a balancing act I have strived to acheive ever since: clearly convinced of my capacities, without any assumption that she knew what they were. When you think about it, that’s very sensible — everybody’s good at something, often several somethings, and there’s nothing that says they have to wear their talents on their sleeves.

I was desperately intrigued by international aid work, but not sure I should pursue it and not even sure how to start; I wanted to know what to do to improve my chances.

She told me, “It doesn’t really matter what you do.” Shifting up from her lovely gentle, understated, soft British manners, I was riveted to my chair as her voice became more resonant, more intense, and I could hear the words marching from the depths of her soul, as she said something like this: “Do what you do; follow your instincts; do the work that comes to you. If [disaster relief] is the right work, the opportunities will open for you when you put yourself in their way, and whatever you’ve done until then will help you get there. If something else is right for you, then whatever you’ve done will help you get there instead.” And then, with a certainty that still makes my bones ring, “Nothing you do is wasted effort. Nothing you do is in vain.”

That was a third of my lifetime ago. Even now, when I have to pull myself through these non-international, unaided situations that are unimaginably grim in a totally different way, I remember her words and how she said them: “Nothing you do is in vain.”

Knowing that no effort is wasted effort, everything becomes much less difficult. Even in such a tiny life as mine has become, this matters hugely. In fact, it totally changes the game.

She was awarded an MBE in this year’s Queen’s Birthday Honors list. Clearly someone agrees that her own work is far from in vain.

Reverse culture shock, transcontinental style

Isy / / humor, loved ones, moving/traveling, perspective

Dear Reader … I’m a Yank. It’s true. I may have sparkly blonde hair, find it easy to talk to strangers, and not assume that anyone who smiles at me has an agenda, but that’s because I’ve been living in Central Coast California for 1/3 of my life.

Here in California, when you tell an acquaintance that they’re particularly clever or sweet, they grin pinkly and do a little riff on, “aw shucks, stop it again, quit it some more,” and like you the better for it. In New England, they’re liable to lift their chins — apparently avoiding a slobbery little dog — and take it as their due … while wondering what your agenda is, and bracing to resist it.

I know this because, after living in each place for a few years and watching the expressions and asking why, I found myself doing these exact same things. (I’m not immune, but I try to be aware.)

I’m also planning to go between the mid-Atlantic seaboard and the Northeast, which I’ve done before, and that has a charming set of subtle cultural potholes of its own.

For instance, if you call a stranger “ma’am” or “sir” in Alexandria, they figure you have nice manners and relax a little.

If you do that in New York, they raise their chins (ever so slightly) and figure you’ve taken a lower peg than themselves in the pecking order; then they’re either magnanimous or obstructive, but usually magnanimous.

If you do that in Massachusetts, they look around in a flustered manner and can’t quite figure out if you’re making fun of them or are putting them on a pedestal they aren’t sure they should occupy. … Which is in interesting contrast to the reaction to compliments.

Mind you, those who know me well have it figured out: compliments are taken pleasantly and “ma’am/sir” lightens the mood. So I’m not worried.

But I am glad that California has the cultural weight that it does, because — as I learned long ago — saying in an explanatory tone, “I’m from California,” smooths out any number of cultural faux pas. And there are sooo many pas to faux up.

How moving

Isy / / moving/traveling, perspective, self-care, what works

I’m working on clearing out all the needless stuff from my boat. This includes unfinished projects, equipment for work I can no longer do, things I’ve kept only because they’re too cute to get rid of, and so on. It’s been sufficiently, um, absorbing that I have neglected the blogs, but I’m playing catch-up online as I take an hour or two this morning to step back and breathe.

One realization that has helped me tremendously is the insight that NOTHING IS WASTED. I realized this when I held up a shirt that I had worn for a sweaty project: it was too smelly to use as a rag, but I couldn’t bring myself to wash it (laundry costs), and I realized it ought to go in the bin.

In a century or three, it will make very nice dirt for something to grow in. And isn’t it possible, I found myself thinking, that holding relentlessly to individual human scales of usefulness and time is a little … well, ethnocentric isn’t even the word. Speciecentric? … We are, after all, part of a greater reality which none of us will see the end of.

This expands on an idea I had long ago: that I don’t have to hold everything inside my skin. I was meditating to escape pain one day, and it followed me in, the jerk. So I took the idea that I’m just one drop in the ocean of humanity, and as my sense of awareness grew and expanded, the pain did not — it dissipated, being spread so wide over the whole world, and went away.

It was waiting for me when I got back, of course, but for one thing there was less of it; for another, the break did me a lot of good.

So I’m working on expanding my awareness. It makes it easier to detach from Things — objects whose main purpose is to take up space, use up mental energy, and carry some emotional trigger that, in fact, I probably don’t need. Life is quite emotional enough without the needless triggers, thanks.

Words, words, and words, with a poetry chaser

Isy / / humor, perspective, poetry, satire, tasty words

I have logical and philosophical objections to certain words used to describe me or what I do. I don’t expect anyone to change the way they speak, but feel free to entertain yourself by mulling two ideas and reading one egregious rhyme (think Lewis Carroll meets either Timothy Leary or Tom Lehrer, I’m not sure which.)

Word 1: Disabled

Hah! I am extremely able, thank yeeew. With both hands behind my back and my head held under water, I am still able. I’m able to add 2 and 2, for instance, or quote that wonderful bit from Twelfth Night that starts, “I’d build me a willow cabin at your gate, and wait upon my soul within the house …” Mind you, if you’re holding me underwater, it would be hard to check that, but I can still do it, I assure you.

I am handicapped. Like a runty little horse that has to have 30 pounds of lead stuffed into its saddle before it gets into the race. Like a golfer who’s being scored by a drunk with a broken calculator. I have exactly the same tasks to accomplish as anyone else in the race or on the course, but I have some added burdens that make it rather harder to succeed.

Word 2: Recovery

Why should I want to re-cover? Of all the covers that have been ripped off, I can’t say I think all that many need to go back on. I love all this fresh air. I love the lack of artifice. I love the inward freedom of having so much stuffing removed.

I don’t need recovering. Appropriate padding, yes; portable cushions, yes please, by all means. But upholstery is just one big refuge for dust mites and dander, metaphorical and otherwise.

I aim to heal. Healing from any profound physical or mental insult (and CRPS is certainly both!) does not mean going back to what or who or how I was before, it means finding a new way forward. There is no way back, and if there were, I have no reason (given how things played out) to think that returning there would be good for my health!

No, it’s forward for me: man the lifeboats, or woman them of course, but I’ll head for new horizons rather than try to wade back through the hideous swamp I sometimes think I’m climbing out of.

The Rhyme: “Re-cover and Heel — an overstretched metaphor”

Before you read further, let it be clearly understood that I love dogs, I have always loved dogs, and I’m old enough to use the word “bitch” in its traditional sense of female dog. In this case, an upholstered one…

The brocade bitch took a turn for the worse
and bit off the toe of a shoe.
The shoe kicked back with a bitter laugh
And said, “That the worst you can do?”

Upholstery torn, the bitch barked out,
“You’re badly in need of a nurse!”
The shoe stomped off and hollered back,
“You’ll soon be in need of a hearse!”

So the bitch went home to patch things up
While the shoe sought places new.
She’s jacquard now, otherwise fine;
He’s Prada, Gucci, and Diesel too.

Isy / / Uncategorized

I have logical and philosophical objections to certain words used to describe me or what I do. I don’t expect anyone to change the way they speak, but I do sweetly invite you to be aware of the way you think about these things that, I hope, affect your own life as little as possible.

Disabled.

Hah! I am extremely able. With both hands behind my back and my head held under water, I am still able. I am able to add 2 and 2, for instance, or quote that wonderful bit from Twelfth Night that starts, “I’d build me a willow cabin at your gate, and wait upon my soul within the house …” Mind you, if you’re holding me underwater, it would be hard to check that, but I can do it, I assure you.

I am _handicapped_. Like a runty little horse that has to have 10 pounds of lead stuffed into its saddle before it gets into that race. Like a golfer who’s in a game judged by a dyslexic with a nonfunctional calculator. I have exactly the same tasks to accomplish as anyone else in the race or on the course, but I have some additional burdens that make it quite a bit harder to succeed.

Recovery.

Why should I want to recover? Of all the covers that have been ripped off, I can’t say I think all that many need to go back on. I love all this fresh air. I love the lack of artifice. I love the inward freedom of having so much stuffing removed. I don’t need recovering. Appropriate padding, yes; portable cushions, by all means. But upholstery is just one big refuge for metaphorical dust mites and dander.

I aim to _heal._ Healing from any profound physical or mental insult (and CRPS is certainly both!) does not mean going back to what or who or how I was before, it means finding a new way forward. There is no way back, and if there were, I have no reason (given how things played out) to think that returning there would be good for my health! No, it’s forward for me: man the lifeboats, or woman them of course, but I’ll head for new horizons rather than wade back through the hideous swamp I sometimes think I’m climbing out of.

Isy / / Uncategorized

I have logical and philosophical objections to certain words used to describe me or what I do. I don’t expect anyone to change the way they speak, but I do sweetly invite you to be aware of the way you think about these things that, I hope, affect your own life as little as possible.

Disabled.

Hah! I am extremely able. With both hands behind my back and my head held under water, I am still able. I am able to add 2 and 2, for instance, or quote that wonderful bit from Twelfth Night that starts, “I’d build me a willow cabin at your gate, and wait upon my soul within the house …” Mind you, if you’re holding me underwater, it would be hard to check that, but I can do it, I assure you.

I am _handicapped_. Like a runty little horse that has to have 10 pounds of lead stuffed into its saddle before it gets into that race. Like a golfer who’s in a game judged by a dyslexic with a nonfunctional calculator. I have exactly the same tasks to accomplish as anyone else in the race or on the course, but I have some additional burdens that make it quite a bit harder to succeed.

Recovery.

Why should I want to recover? Of all the covers that have been ripped off, I can’t say I think all that many need to go back on. I love all this fresh air. I love the lack of artifice. I love the inward freedom of having so much stuffing removed. I don’t need recovering. Appropriate padding, yes; portable cushions, by all means. But upholstery is just one big refuge for metaphorical dust mites and dander.

I aim to _heal._ Healing from any profound physical or mental insult (and CRPS is certainly both!) does not mean going back to what or who or how I was before, it means finding a new way forward. There is no way back, and if there were, I have no reason (given how things played out) to think that returning there would be good for my health! No, it’s forward for me: man the lifeboats, or woman them of course, but I’ll head for new horizons rather than wade back through the hideous swamp I sometimes think I’m climbing out of.

Radiant

Isy / / radiation, self-care, what works

We got the first rain since the reactors melted down in Japan. Weather systems being what they are — global, persistent, and efficient vectors — I took that rather seriously: scrubbed the deck to reduce absorption capacity, reconstructed the cockpit cover to keep the rain off, shoved fuel and spare cushions into the hard storage area, cleaned up belowdecks so I could stand being indoors for a couple days. Also stocked up on miso and tasty seaweed treats, to protect my thyroid — damn, they’re good.

In the absence of a Geiger counter… One of the really fun things about radiation is that — like fiberglass dust — we have no good way of assessing our exposure until it’s much too late to change it. As a nurse and as a DIY boat-owner, I figure it’s reasonable to protect myself as best I can, then hope for the best.

Tech note on seaweed/thyroid remark: the natural iodine in seaweed and miso loads up your thyroid gland’s iodine receptors. This leaves no room for radioactive iodine — carried in rainwater, for instance — to glom onto you. It’s exactly the same mechanism as the benign iodine in radiation pills. The dosage is more precise with the pills, but the taste of the seaweed treats is rather better.

Out of the foggy night: Overmedication and abandonment issues

Isy / / brainiac, CRPS knock-on effects, neurotransmitters, realpolitik, tasty words

I was overmedicated on mixed psychoactives (in plain English, my doctors had me on too many pills for CRPS) and, at the beginning of February, I ditched most of them. The following weeks were pretty hideous in an interesting way, as my brain’s natural chemistry struggled with the messy extrication and departure of the pharmaceuticals.

It feels like washing my dirty laundry to say this, but I suspect I’m being too finicky: LOTS of people get overmedicated by well-meaning medicos who don’t talk to each other.

The pills I stopped were SSRIs and SNRIs. (I can’t remember which was which.) The upside to this class of medication is that it specifically relieves nerve pain, in addition to helping lift depression. (I wrote an article, buried in my archives, about the tiny handful of neurotransmitters, and how each one has many jobs. Serotonin, for instance, helps digest protein in the gut; dopamine mediates decisions. I’ll dig it out and post it on the Biowizardry blog.)

When you have CRPS and you’re overmedicated on neurotransmitter Reuptake Inhibitors (of whatever flavor), your brain is in the toilet and there’s no way to tell which mental blurch is due to drugs and which one is CRPS. I couldn’t always tell how well I was thinking, though I kept trying anyway. Perceiving how I felt underneath it all was like trying to determine the shape of a bomb while it’s still in the box. I was usually clear about what I remembered and what I wasn’t sure about… but just try getting anyone to believe you when they already know that your brain is not firing on all four cylinders.

There’s a lot of grey area in the grey matter, when you’re overmedicated and have CRPS.

I’m not sure how much more crap there is to clear out, but I know I’m a lot clearer about what’s going on right now. I look back on the past two years with some dismay, as I try to rebuild the relationships I dented, and (most painfully) try to understand why those who should have known better had simply abandoned me to that foggy night.

[photo credit http://www.flickr.com/photos/jfraissi/2165047274/]

But anyway.

I am remarkably clear, now, about what I remember and what is nothing but a sudden hole in my mind. I’m clear about whether I can think right now or not. I’m able to feel the brain crank up and crank down, so I can communicate to others, “I can do this!” or “Gotta stop now!” And, for the first time in years, I can get something done on some sort of schedule. Not a consistent or reliable schedule, not to any sort of clock, but just to know that I CAN do something is quite a step. I’ll take it and be thankful!

I still have CRPS. My medication is still problematic. I still have sudden, random, Swiss-cheese-like holes in my memory and cognition. BUT — and it’s a big but! — there is no grey area in my grey matter any more. I know if I know, and I know if I don’t know.

And that’s information I intend to use.