Your normal is my catatonic

On top of my careful eating and constant self-policing... I've cut my online time to the bone, to conserve neurotransmitters and wear and tear on my telomeres.

 

I'm moving to a sunnier flat, to improve vitamin D uptake and exposure to beneficial UV bands.

 

I've gotten a cat, to lower my bp and help stabilize my diurnal cycle. (They get stirred up and worried when you stay up past your bedtime. It's the cutest form of nagging ever.)

 

I'm doing my autogenic exercises as often as I can bear to, to bring my baseline level of overdrive down and begin to approach "normal".

 

For better or worse, I'm getting more closely in touch with what a "normal" state of relaxation really feels like -- and realizing how far from "normal" it is for me.

 

If I am as close to "normally" relaxed (or "normally" tense -- its the same thing) as I can get, I'm nonfunctional.

 

All I can do is lie there, bathed in the peaceful antitoxins of adequate tissue perfusion and a still mind. Getting up requires dropping that calm, because there just isn't enough energy there.

 

I'm far, far too tired to function as a normal person. My very cells are tired -- I can feel it when I let down this chemical structure of overdrive and tension. Their very organelles are tired. The vacuoles, I bet, are tired.

 

Why? I mean, weariness is all very well,  but isn't this a little ridiculous?

 

Ridiculous it may be, but not irrational or inappropriate. Here's why, as far as I've thought it through.

 

- For one thing, pain is exhausting. An hour of pain is as wearying as an hour of running, but without the cardiovascular benefit or endorphins. Quite the opposite. And it never really stops.

 

- Moving the body with degraded muscles is hard work.

 

- Making decisions and doing the business of life (rent, bills, laundry, shopping) with a brain that flickers on and off... requires a lot of repeated trips and extra effort -- also tiring.

 

- Remember that list of JCAHO-rated crises I mentioned on my last post? That was a sample from the latest in a series of years, each of which was about as harrowingly difficult, in different ways. Truly, I had no idea that so many ghastly things, most far too protracted for Hollywood to use in even their most grueling work, could grind through one measly life.

 

So maybe I should give my weariness some credit. Maybe I should stop bitching about how I just can't get things done. Now that I'm trying to ratchet my ANS responses down from the stratosphere, maybe I shouldn't wonder that it's becoming hellishly difficult to get off the couch most of the time.

Maybe I should stop obsessing on my characteristic need to be productive.

 

Maybe it's finally time to stop ignoring the fact that I'm really damn TIRED, and put my attention on getting more rest.

 

That might be the most productive thing I could do.

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 your wings impossibly wide will take you much further, and possibly in wholly different directions, than you've ever been before.

This current gimp/former middle-distance runner read about a marathon and that's what put the fire back in my belly. I'm supposed to have a fire in my belly; I was born that way. My mother, bless her sweet cotton socks, has come to see me clearly enough that she cheered me on without a second thought.

I'm not wedded to the idea of a marathon next March, but I am absolutely devoted to finding a goal about that large.

Why?

Because it works for me.

Why?? Well, I'll explain...

I took an excellent management course at UC Berkeley in which we learned about a dozen different ways to slice the personality cake. I know my Myers-Briggs, still shake my head at the fear-based pissiness of the Enneagram, and could eventually bring to mind roughly 10 other forms of alphanumeric soup which social scientists have evolved to try to describe humanity.

Prepare to be shocked...

It turns out that I'm a very odd duck.

Here's why:
- Linear planning (logical, methodical, with predictable stages and moderate goals) will net me mediocre results at best! To make any real progress, I have to make seemingly serendipitous leaps, which make internal sense to me but tend to scare the pants off most.
People like this are a single-digit percentile of the population, but we do exist in measurable numbers.

- I'm an introvert in a world of extroverts.
Only 20% of humans are basically introverts.

- My intuition really is that good.
Social scientists will only smile nervously when asked for figures about that, but the teacher was elated when this showed up consistently on my evaluations.

Thanks to CRPS, I live in a situation which would defeat normal people. Because of the way death statistics are collected, there's no saying how many people with chronic CRPS affecting multiple limbs, associated with dysautonomia and other comorbidities, survive as long as I have, but the numbers can't be that good. We are, by definition, exceptional.

- Therefore, I have to do better than average, so linear planning is not my success path.

- I don't have the energy to be a public figure, because that much attention would suck me dry.

- I can't always explain why something has to happen or why I really need to do what I choose to do, but after 47 years – 10 of them skirting hell – I'm pretty clear that, when the inner voice speaks, the only rational thing to do is to listen.

All right, time to bring this back to earth, back to the here and now...

I've been trying for years to get my body and brain back. Quite apart from the merry-go-round of care providers and pharmaceuticals, and the endless work and study to find one single conventional or alternative treatment that makes the least bit of difference and adding it to the pile... I've been doing a lot of low-tech stuff too.

Using other languages helps build sturdiness and resilience into my brain. Traveling keeps me from becoming too attached to a routine, so that I can stay flexible and resilient in my habits. I've seen too many of my compatriots become prisoners of their habits, because the stress of making a change is more than their systems can accommodate. If I were like that, I couldn't have made the massive dietary and lifestyle changes that have allowed me to continue to think, write, move, work, live...

- Stasis is not an option.
- Movement is mandatory.
- Everything I do is calculated for its net benefit.

I've been trying, in methodical, predictable, linear ways, to improve my situation. And, as my Dad once said, after my very first driving lesson that nearly ended in disaster, "If what you're doing doesn't work, try something different."

I've gone, if not to the ends of the earth, at least to the ends of the state, in search of good care.

After wading through the quagmire of paperwork associated with this case, I caught up with all the people who anchor me, covering the entire country twice -- once, an hour at a time, in a car.

And that's the secret. I figured out how to drive long-distance by saying, "Dammit, I'm going across, and  I'm taking my f%^(*#g car with me." I worked out the main things I'd need beforehand, got them in place, and figured out the rest as I went.

I still can't drive more than an hour at a time, but guess what? I can get back into the car after I've done some self-care stuff. And then drive another hour! Stitch enough of those together, and yes, it IS possible to get all the way across this continent. It just takes longer. That's life...

It occurs to me that I've been working so hard on my brain and digestion and mitochondria, that I've given the rest of my body the shaft. No wonder I'm large and lumpy -- which makes my feet more sensitive and my joints weaker. It's also not good for my brain, as I remembered today. Nothing beats good cardiovascular health for flushing the garbage out of the brain and bringing sustenance in.

Inactivity runs against my lifelong experience. It makes me furious with myself for overlooking it for so long. I've always been at my best when I've been very active. I loved hiking, running, weightlifting, climbing trees or rocks, snorkeling, riding whatever moved faster than I did -- anything, at the risk of purple prose, that meant moving with vigor and attention through this gorgeous world. (I wasn't that fast, only fast enough to please myself. I just loved doing it.)

Excellent health came with lots of activity. I couldn't reach one without the other.

And here I've been nursing myself by tiny stages, dropping at each burst of weariness,  afraid to do otherwise because of the horrible experience of adrenal exhaustion and the months that I hovered on the brink of extinction because of it.

My clever PT and my wise psychologist and my lovely counselor and my wonderful physicians are showing me how to assess my real physical state with ever closer detail, ever more precision. For instance, did you know there's a different feeling between a muscle that's tired because it was pleasantly worked, and a muscle that's tired because the mitochondria are gasping? It's true. It's a different feeling, and now I know what that difference is.

And I've only just begun this course of treatment.

I am SO looking forward, not only to being tuned in to this body, but to enjoying the experience again.

Months, years of care focused on just moving along in logical increments have left me too fat, weak and sore to tolerate the continuance of this state. Two days of a goal that's beyond the moon, and I'm already measurably stronger.

I think my intuition really is that good!

The only thing that has given me pause on the marathon idea is, the cortisol rise. (That's a key adrenal hormone and one that takes a beating with CRPS, so it's of special interest to me.) Of course, these studies were small, one needs more cortisol when running (it's the "gear-up" hormone) and these cortisol levels were taken on people who were healthy to start. There's simply no assuming that my cortisol will behave the same way. Too little is known about this disease.

I bet dollars to donuts, though, that running a lot more than I do now will stabilize that cortisol like nothing else ever has.

Personally, I'm not inclined to give the marathon a final thumbs-up or thumbs-down before I've gotten quite a few miles under my running shoes, and quite a few galvanic responses and other tests into my binder. I'm still collecting data. And probably cortisol levels.

It's important not to go off half-cocked. Right?

Until further notice, I'll keep the March marathon as a "working hypothesis", and collect data as I work to "prove" it. Whether I prove that hypothesis or not, I'll most definitely prove something more interesting than what I've got now.

And, if the past couple of days are anything to go by, I'll certainly get a whale of a lot further along in restoring my body to my soul.

Who knows? One of these days, I might just cross that finish line.
 

The only failure is not to try.

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.