Getting the important things settled

It took roughly three weeks to recover from the move. For much of that time, everything was bathed in a whitish sheen, and getting more than one coherent sentence out at a time was a crap shoot. I’m learning to relax through these times, knowing they’ll pass, especially since I had someone to keep the place cleanish and make sure food landed on the table once in awhile. You’d be amazed how much energy it frees up, having help with the demands of daily living.

It took about three and a half weeks to get internet going at all, and even then, it’s slow. My original workstation was so astoundingly awkward I had to sit sideways on the settee in order to type while hooked up to the modem. Short surf sessions, needless to say, with frequent breaks. Awful.

Yesterday, I pulled apart all of the — wow — truly excessively complicated hookups laid in by the prior owner. I reran wires, relocated cord-keepers, moved the faceplate from its hidden location in the cupboard to the wall where it can conceal horribly ratty holes including the one that the cable goes through, moved the huge coil of excess cable (15 feet, at a guess, of which 3 were being used) off the TV and strung it along the wall… to where I can now sit up comfortably in my bed, power and modem hooked up to my laptop, and noodle away in perfect peace. I put the remaining cabling — 2 pieces of extra CAT5 cable, triple-wire connector cable, ethernet cable, and a random small piece of 2-wire connector cable — zipped up in a plastic bag and shoved out of sight.

I’d take a picture, but there’s nothing to see. Just a cupboard, with a splitter at one end and a single white cable secured to the underside of the shelf, until it plunges out of sight to head off to its final destination.

There’s a bit of extra cable looped and secured neatly against the back wall. In electronics and electrics alike, if the wire is just the right length, then it’s too short. Give it a foot (not twelve feet) of slack, neatly stowed.

The key to routing wiring of any kind is: it should be as simple as it can be, and no simpler. I kept chanting that in my mind as I pulled things apart.

With that thought, I didn’t have to keep the whole puzzle in my head. There was an intake end and two output ends, and the shape of everything in the middle would be derived from necessary functions and the available space. Not, for crying out loud, from the needlessly complicated cat’s cradle I’d inherited.

When I got started, J stood by quizzically as I pulled out the hefty coil of cable, pointed out the rat’s nest around the splitter, and displayed other bits of insulated-wire macrame, each time snorting in gleeful derision and saying, “Amateurs!”

Finally, after he dodged the shrapnel from my 3rd dive into the tool drawer, he got that look that says, “time to get out of the danger zone,” and took off to run errands.

I’m not as fast as I used to be, so it took from noon until sunset to get it all done and neatly stowed. J wandered back as I was finishing up, and was more flatteringly impressed than I’d dared to hope — really wowed. He wasn’t sure why I’d gone to all that trouble to clear cupboard space (which was one nice side-effect, in this limited space), but when he saw the cable over by my new workstation, which is about the most comfortable place there is to sit, it made more sense.

He should be able to watch TV at the same time that I’m working online. To us, this is sybaritic paradise. Bring it on.

Tech note: My internet has to be hardwired, because the radiation from being near wifi consistently makes me sick. The nausea, weakness and racing heartbeat are unmistakeable.

I keep the wires off my arms with pillows, so that, even though the wires originate behind me, they don’t come within a foot of me until they’re almost at the laptop. This is about as good as it can be here. After sitting here for most of an hour, I’m fine. Just fine.

Imaginative experience and rebuilding the brain

In 1986, the course of neurologic treatment changed forever when Mark Block, one severely spine-injured young man, chose “imp-possible” over “impossible” and, every day, spent hours imagining how it would be to walk again, imagining his “wires” getting hooked back up again, riding a wave of inner certainty that can only be called a gift.

 

He mentally rehearsed endlessly. Day after day after week after month.

 

And then, months into his care, he told the nurse, “Watch this,” and made his foot twitch. The first nurse dismissed it as a spasm. The second or third nurse got the doctor.

 

The doctor stood over the foot — really close — and said, “Do it again.” Twitch.

 

“Again.” Twitch.

 

“Again.” Kick.

 

One of the great moments in medicine.

 

Upon discharge, he walked out of the hospital.

Some of the meditations from my pain psychologist are visualizations. They’re made for a mass audience, not for people with chronic illness generally or CRPS specifically, so a certain amount of tolerance with the language is required. (At one point, the narrator says, after a pregnant pause, “Looking good.” Oh for heaven’s sake.)

Fortunately, she’s dropped pearls of wisdom about what’s important in these exercises, so I’m (naturally) mulling over a new set of scripts which attain those ends a wee bit more gracefully. (Of course, the files will be freely available to download.)

The key point is, it’s important to imagine what it feels/looks/smells/sounds like to be really well, really functional, really active, really smart again. Here’s the lowdown:

  • It’s not just a set of images, it’s a multisensory experience that I imagine as clearly as a good memory.
  • It’s important to do so vividly and frequently.
  • It’s important to think of imaginative experience as a good working hypothesis, rather than a hopeless quest or pointless daydreaming.

That’s key. Making it seem real, and not dismissing it afterwards. Over and over again.

That’s how the brain is persuaded — molecule by molecule, link by link, cell by cell — to give up its current structure, which pins so much of the neuro-anatomical, neuro-chemical and neuro-endocrine dysfunction in place.

Then, in many cases — and with suitable support from nutrition, psychological care and physical activity — it’s possible to reverse-engineer a healthier, more functional neuro-setup.

It takes time. It takes dogged persistence. It takes a vivid imagination — which can be developed, if it’s not already there. (Like getting to Carnegie Hall: practice, practice, practice.) Last but not least, it takes a smidgen of luck.

The imaginative experiences, if all goes well, help your neurological structure leap the chasm between what it is and what it should be. It’s an enormous leap of faith to get started, let alone keep going for as long as it takes to rewire such an astoundingly complex structure.

Of course, inner resistance and outer events are liable to leap out and knock us off track, because that’s what they do… and we have to find ways to pick ourselves up and dust ourselves off and get back on track as soon as possible.

It’s a huge job, inside and out — all that leaping.

Trapeze_artists_1890

But it’s not impossible.

I’ve been mulling experiences that I can imagine failing to do with my current body, but remember doing with my healthy one.  I think I’ll write them out (word-painting at its most precise) and build really great imaginative experiences to come back to, again and again.

Running; sailing; riding; studying; traveling; writing complex books; lecturing on neurology, pain, and healing — you know that’s what I’m thinking about.

What would your imaginative experiences be? What would you leap the chasm for? What could you immerse yourself in, week after week, month after month, maybe year after year, for the chance of pulling yourself up to it?

It’s an interesting question, isn’t it? I have a feeling my list will change with time. As I sit with these imaginative experiences, I’ll see which ones really keep on giving, and which ones were better in theory than practice — and, of course, I’ll find the one I haven’t thought of yet, which will turn out to be key.

At the moment, the hard part is coming back to reality afterwards. That can really suck. But there are ways to deal with that — instant distraction, for instance — and the more I think it over, the more I think it’s worth it.

Relentless

My pain psychologist is very insistent that 90% of my day has to be predictable. This allows my nervous system to heal and re-stabilize to the extent that it can.

I cannot even fathom that. 90% of my day? Do any of you have those kind of days, ever?

matchgrins-horsenwoman_decamps-pauline_4blog
Pauline Decamps? I’d love to credit this fantastic shot. Correction invited.

She’s been right about everything else so far, so I’m working on it.

Trying to bring stability to any single part of my life brings the inherent instability of life into high relief.

  • Every commute to the doctor’s office is a crapshoot. There’s no knowing just how long it will take, if there’s parking on the other end, whether anything unpleasantly LA will happen along the freeways on the way.
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  • Every trip out of the house, with all the neighborhood dogs and the roads being under construction here, puts the rest of the day on hold until further notice. Especially when my judgment is in the hopper because of pain, dysautonomia, or not being able to eat enough to prevent hypoglycemia.
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  • Every day is a mine field of discovering things I’ve forgotten and have to find a way to deal with, trying to clean up the past while coping with the present and preparing for the future.

poison_skull

It’s heartbreaking trying to keep up with this, but I can’t stop. This disease never quits. It never gives a break. I must try to keep up.

I thought I was stubborn. I thought I was adaptable. I thought I could be relentless. I have to say, this condition puts me in the shade.

This is one of those articles I wrote to help myself find the nugget of gold. I’m still looking…

George_Goodwin_Kilburne_Writing_a_letter_home_1875

I’m in a very small glass today, but that doesn’t change the scope of work — just what I admit I can do.

This relentlessness, this bitter intransigence, is part of any chronic disease. We find ways to cope, or we don’t make it.

  • I deal with the dietary restrictions by focusing on the wonderful things I can eat;
    antioxidant_foods
  • I deal with weakness by learning to ask for help;
    .
  • I deal with the pain by focusing on what gives me joy;
    Crab_Nebula-crop
  • I deal with bouts of forgetfulness and confusion by automating as much as possible and using external aids like a whiteboard, checklists, post-its and the apps in my smartphone;
    200px-Check_mark.svg
  • I deal with the heart, lung, and endocrine issues by finding new ways to do things, and rehearsing constant self-control in every single freaking aspect of life.

It just wears on me sometimes. It’s a lot to expect of myself day after day after day after DAY.

Perhaps the nugget of gold is simply taking credit for my imperfect, ongoing attempts to manage an impossible body of work: staying alive and on the right side of the ledger, and trying to make it bearable. It takes some doing, and yet I’m here now. The future terrifies me, but so it goes.

Marathon update:

A bloody pair of athlete’s feet, with ringworm that’s trying to consume my right foot, both fungi profoundly resistant to treatment… Have been joined by an ingrown toenail which looks like a grandchild of The Blob… Which itself is hosting cellulitis.

So I’m off my feet for the most part, wearing slippers when I must walk. I have to knock the cellulitis back by Friday, so the ingrown (which is an outgrowth) toenail (though it’s really the flesh) can be cut away, and part of my nailbed stripped. All those loverly nerve endings…

old_school_surgeon

It’s going to be a rough weekend. Perhaps I should just have it all cut off, ha very ha. Too bad that makes things worse in CRPS.

Marathon update

For weeks, I could hardly move outside without injury. It was maddening. I completely ran out of arnica pills, my best tool for keeping soft-tissue injuries from turning into flares or spreads of CRPS.

At the same time, I couldn’t make myself do the meditation exercises I’d been assigned, where I’m supposed to let some strange man tell me what to relax. Getting anything but my appointments done has been nearly impossible.

Today, I walked half a mile, half of it uphill, and most of that at around 15 degrees’ slope — really. And so far, I’m just fine. It seems  a bit miraculous, after the past few weeks.

For the past few days, I’ve also been wrestling with my dead… and at the risk of appearing to complain, I’d probably better explain that.

I’ve been interested in re-remapping my brain to a more useful cartography (so to speak) for years; that’s what holds the most promise of moving CRPS aside and leaving more room for life.

Sheer gall, determination and bloody-mindedness can only get me so far. Pretty damn far, but I think I’ve hit the limit. I need to move beyond, because frankly, life is barely worth it and I won’t stand for that.

To gain enough mastery over my brain that I can really push it into a different shape means getting my conscious mind and subconscious mind to play well together. Sooner or later, THAT means coming to terms with a few things I’ve shoved under the floorboards. Then I can put them in their proper place, and make a reliable path around them. It’s no good trying to build new paths in a brain that’s booby-trapped.

It’s impossible to discuss these losses and bereavements and horrors without sounding pathetic or whiny, so I won’t. Tell you what, though, I’ve stopped editing them out, when they’re relevant.

Something’s come loose. It’s true. It does seem to be working.

I’ve finally gotten myself scheduled into my meditation exercises, PT, and cleaning up… and I’ve walked half a mile today, much of it really steep… and I seem to be fine.

Every marathoner knows… you really run it from the inside.

Need more than "Dysphoria"

There’s an impressive clinical word for “feeling yucky” — it’s “dysphoria.” It’s literally the opposite of “euphoria.”
One of these people is Dysphoric and one is Euphoric. Guess… 🙂

The trouble is, there are so very many ways to feel yucky, or dysphoric, especially with a disease like CRPS, but only one word to describe it all. Our experience of life no longer maps to that of a normal person, but language can’t describe what we experience. However elegant it sounds, “dysphoria” is inadequate.

That’s about to change. Here are some words I’m adding to the lexicon, a short selection of the most common and most describable (because some are indescribable) of the dysphoric states I move in and out of…

Dysphoria Sunnysidedown
The particular kind of yucky I feel when I get up before I’m ready. It takes about an hour, usually, to avoid D-Sunnysidedown.

Otherwise, I get tremulous, nauseous, my heart races (but quietly), and I’m aware of a particular kind of fragile ghastliness in a minor key. If I really get up too fast, I fall over — muscles quit. This adds up to Dysphoria Sunnysidedown.



Flip ’em!

Dysphoria Darkofnoon
This is a natural consequence of D-Sunnysidedown and usually happens later the same day, but occasionally happens by itself. Darkofnoon involves feeling peculiarly ragged (as if my adrenals had been in overdrive for hours, which is accurate if I arose too fast), forgetful, physically weak, slightly shaky, and of course nauseous. Sometimes dizzy spells.

There’s a more solid kind of ghastliness, more in a dominant chord. Dysphoria Darkofnoon usually happens when the day is brightest, between 11 am and 3 or 4 pm.

Lying down periodically helps me get through the day, but I’m not likely to be quite right until a good night’s sleep and a proper start to the next morning.


Dysphoria Hate2Bme
Stunning levels of distraction, with a dense pale-grey cloud wound around and through my mind and perceptions, dissolving what it doesn’t hide.

It insulates me from such trivial issues as major appointments, where I put the keys, and the state of traffic lights. I can tell where my body is in space, but not how it feels. Likely to injure myself, risking further spread.

It would be tolerable if there weren’t any consequences or anyone leaning nervously away while looking at me with worried pity. When I’m experiencing Dysphoria Hate2Bme, the humiliation and underlying fear are the most dysphoric elements, though there is something intrisically unpleasant and destructive-feeling about the dense grey cloud.

Dysphoria Mitoshriek
This happens when I’ve overtaxed my body, though sometimes it happens by itself. I think of it as the mitochondria in my muscle and nerve cells all setting up a synchronized shriek of anguish as they fall over in a dead faint. (I don’t know how they scream while fainting, but they seem to manage it.)

It feels like my soft tissue threatens to dissolve when I try to get up or do anything. There’s a sort of wholesale, pitiable unpleasantness in mind, body and soul with the least physical effort.

My muscles react with a sort of “You’re kidding, right?” when I try to use them, and if I push through in order to get something done, it’s done by pure determination and then I’m out of commission for a couple of days. I pay hard for pushing back against Dysphoria Mitoshriek.

For all I know, my mitochondria have nothing to do with it, but mito self-care seems to help: tons of antioxidants, lots of vegetables, and as much horizontality as I can stand. I can tell when it’s time to start moving — about 3/4 of a day after I start really wanting to.

One thing that is no worry at all: I don’t ever have to worry about being too lazy.


Your faithful writer at 2 yrs old. I refused help; I was going to
cross that dry riverbed all by myself, come Hell or high water.
Photo: JLD Tifft, used by kind permission 🙂

Bodies and minds, like engines, were made to go, and I’m most at home when I’m going in mine.

After the intense inward training of living as usefully and zestfully as possible despite CRPS, can you imagine what it would be like to have all this determination and energy unleashed on the world if I were finally well again, and could focus on, remember, and do things on a vaguely regular basis?

Can’t wait to find out.

So this is peaceful ol’ me…

…saluting all that keeps me from that.

Speaking of which…

Marathon training note

I’m stable with walking 1.5 miles at a time, and recover fast enough to do more later that day. Will aim for 1.8 later this week, after recovering from this trip.

Despite spasms and cramps etc., I made it all the way home in 1 day yesterday, instead of splitting the drive into 2 days as I usually must. This amazes me. My eyes didn’t cross and my mind didn’t splay into a messy 10-pointed star, both of which usually happen after 4-5 hours of driving with hourly breaks. So, there are some key neurological pieces that are definitely doing better.

Yay cerebral blood flow! Yay exercise!

It might be smart to take today off and stick to PT exercises and tai chi. No more bloody relapses. But boy, I sure am heartened!

Marathoning, murder, and masses

Who the hell would bomb a marathon? The shock and fury make my eyes hot and narrow.

Second thought: what a way to go – accomplishment, adrenaline, euphoria, and a quick blast.

Yesterday, ironically, I realized I was fully recovered from overdoing. That only took 11 days… I took careful walks around the park while recovering, so as not to lose much ground.

Leading myself along, and minding my posture.
Today I roughly doubled my walking distance and I’m back up to ~18 min. On a flat.

I’m grateful.

I grew up in Egypt, a Middle Eastern country. We were there in the relatively tranquil days of the late 1970s: Sadat was secure in power, a secularist who stood no nonsense and could be bought – excuse me, persuaded – into a peace treaty that ended several thousand years of war. (For the meantime.)

Islam was a thoughtful, neighborly religion. Guests were treated like the loveliest royalty. A blonde 13-year-old girl with a forward figure could (at least, did) walk the streets in daylight fearing nothing more than vile remarks and, in a crowd, a vile grope.

That was the key to life in a tourist country: avoid the crowds.
 
When terrorist attacks happened, and they were rare then, they happened in crowds. My family was constitutionally adventurous and put off by mob thinking, quite apart from the (really tiny) chance of bombs, so we just did what came naturally and took off on our own.
 
We saw crowds the way a sailor sees sandbars: a lot of work, and not much fun to get stuck with.

Moreover, I’ve always been an introvert in the Myers-Briggs sense, meaning that I recharge in solitude and that I find society in large doses simply exhausting.

Now, with CRPS, this distaste for crowds has become a deep aversion. The physical dynamic of being in crowds is unbearable: when people bump me unexpectedly, it’s horrific; the noise overwhelms my sensory brain, which, let’s face it, is overworked already; and, of course, my hotwired autonomic nervous system is ready with the fight or flight response… with nowhere to go that isn’t in the crowd.

Breathe. Breathe. Breathe.

I was reading Angela N. Hunt’s book about living while training for a first marathon, and her description of the starting crowd was appalling. For me, it would be like being inside a tiny electric fence, cattle jostling around against the outside, bashing and zapping me mindlessly and endlessly.

Not do-able. Not even think-able.

But that’s just a problem, and problems are meant to be solved.

There are several possible solutions: invoke the ADA and start in my own class behind the crowd; rustle up about five good buddies — preferably large, sturdy types — to run around me for the first half, and be a better fence until the crowd thins enough;

run a different marathon course over open country, with only a handful of others; or abandon the whole thing.

I can hear some strenuous votes for the last option. In the wake of the Boston marathon bombing, I’ll ignore them. Completely.

I will go on. If distance is not an insuperable barrier, then neither is willful fear. I’m a woman, weakened, disabled, and rather poor; I have enough to be afraid of. I don’t let it stop me. Why should this? I’ll wear the names of the dead, if it helps. I won’t let it stop me.

I will go on. I’ll find a way to avoid the crowds, in some creative and tasteful fashion.

I will go on.

“Watch me go.”

Overdoing…the first time

My walking time in PT went from 5 min. to 10 min. when we decided to start training for the marathon. My walking at home took the 10 min. up to nearly 20 min., a third of that uphill.

That was nearly a mile. In a burst of what I thought was genius, on Friday I decided to walk down to town (0.8 miles), run a couple of errands, sit down on a sunny bench if need be, and walk back (0.8 miles, all gently but steadily uphill.)

Then, I thought bouyantly, I’d throw necessaries in the car and take off for my two week vacation.

Well, I got as far as making it back to the house. I knew, as I started back from town, that this had been a bad idea, and that there were three outstanding questions: would I have to find a place to sit down en route, exactly how hard would it hit me, and how long would it take to recover.

Saturday was a dead loss.

Sunday, I packed in small loads, resting for an hour or two between each trip to the car. No kidding: an hour or two. By Sunday around 4pm I was beginning to recoup a little. I left at 5.

I had forgotten what a mitochondrial shriek-fest felt like. An almost devastating feeling that my flesh turns to rot when I try to get up. I don’t recommend it.

Mitochondria are the wonderful little hitchhikers that house our bodies’ energy factories, in return for a warm place to live. They are most thickly concentrated in nerve cells and muscle cells. I knew all along that rebuilding my mitochondria was going to be perhaps the most essential part of training, but after my stellar success on the Hill, I thought I had more to draw on than that.

A delightful piece of training advice I got years ago was, “You can do all the cardiovascular you want.” Perhaps that was true at the time, although I noticed I did better when training four days per week than five or six. Perhaps I should’ve remembered that last week.

I think I should’ve rested for a day after my Hill expedition, for one thing. More importantly, I should’ve had a backup plan on my “adventure”, so I wasn’t stuck with the hike back. And I probably shouldn’t have done this around the excitement of going to see my sweetie.

My kitten just typed $. I have no idea…

Perhaps he’s telling me that overdoing doesn’t pay.

Putting together the team

I saw  my counselor this morning and told her I was thinking of running the marathon. She waited for me to go on, then said, “Wait, you’re not laughing. You’re serious!”

I waved a hand generously and said, “Take a moment to have your reaction…”

It was priceless.

After talking it over a bit, she began to get behind it, rather  breathlessly but with real glee.

I saw my PT just now, for our first conversation since his rather cryptic reply to my email. He doubled my treadmill time (up to 10 minutes from 5), and said without preamble, in his cooly unflappable way, “That marathon idea of yours? It’s going to be slow, it’s going to be hard work, but I think we can do it. It’s a good goal.”

I nearly burst with relief and delight.

He set a 5-mile limit on my exercise over the coming 2 weeks of my vacation, then checked and said, “You’re  going to come back and say, ‘He-e-ey, I did 15!”

Finally… a PT I don’t have to train.

Last, I saw my rheumatologist, who laughed in a pleased fashion and said, “I’m glad you’ve got a good PT for this. That makes my job a lot easier.” Didn’t turn a hair.

I’m seeing my primary care doc and my pain doc on Thursday.  As for data (I am a geek; gotta have data!) I have current baseline levels for all basic chemistries, immune globulins, and a complete blood count, plus vitamin C and D. I have cortisol reports from when I was in adrenal exhaustion.

I’d like a baseline cortisol test now, and talk over what other stress/adaptation/compensation markers we could be tracking and how often.

I might have to shop around to different labs to keep in budget, if insurance can’t be persuaded to cover the lab-based data collection, or if I can’t get it covered some other way.

I’m dead serious about not hurting myself. I’m also dead serious about going for this. In any case,  we might as well collect data, so if nothing else, we’ll have one damn good case study to publish.

See you on the trails.

Marathon — second thoughts

I’ve gotten some interesting responses to my marathon proposal, some of them very worried, bless their excellent, loving hearts. I feel I owe some explanation.

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

Making progress

Yesterday was my first workout: walking 0.8 miles around the block. I live on the side of a pretty steep hill, so that’s not completely trivial.

On the steepest part, I wanted to stop, but my old athletic training kicked in: do anything *but* stop, because it’s worth it to get the hill behind you. So I moved forward less than one foot-length at a time, giving the sick feeling in my chest enough ease to pass. (At least I know it’s not a heart attack. One of the wonders of chronic CRPS is, your physical experience of life has changed so much that words don’t exist to explain it. But I know for sure it wasn’t a heart attack.)

Today was my second: the same distance, but noticeably better – on the steepest part, I could maintain something close to a walk, and I never got that sick feeling in my chest.

Wonderful progress!

Today was also my first lesson in biofeedback. I thought I was hot stuff, because I can knock 10 to 12 points off my blood pressure at will. Today, though, we measured galvanic skin response. It’s much more subtle, and a lot harder to finesse. I got compelling evidence that the physiologic back pressure of this disease is pretty much as bad as I’ve ever said it was. I won’t go into that, because it’s depressing.

I’ve been thinking about a blog entry on breathing, the simplest and most profound of our daily actions. I have to absorb today’s lessons first… I really see why I haven’t been able to put it together yet, even though it’s been on my mind for weeks. Breathing, like living, is so fundamentally simple that I have to think it through very carefully before I try to put it to words.