Breathing

Sooner or later, it all comes back to breathing.

Without adequate breath, obviously, nothing else matters. As a sometime ER nurse and continuing asthmatic, I'm more than usually aware of that fact.

I mean something beyond that, though. Something more pervasive.

Breathing, like walking, is one of those things that I keep coming back to as an interesting study -- one that's so fundamental that I forget, in between times, exactly how deeply it changes everything else in life.

I first began meditating in my very early teens, after basic instruction from my mother:

1. Think of a simple, unemotional mental image, like a burning candle flame, and breathe.
2. As thoughts come and go, let them go (sometimes, especially at first, I had to chase them off) then...
3. Bring your attention back to the image and the breath.

The image didn't do me much good – I think fire is a little too emotional for me – but simply being at home to my breath, and letting the haywire-ness of the day drift off into the mist... with my odd and beguiling little cat softly nestled against my leg under the covers... did me all the good in the world. Especially at 13.

The language of breath is interesting. Breath, spirit, life, and insight often share the same word or sounds in languages around the world. For instance, in English, "inspiration" means both a breath, and a sudden idea; the root word means spirit. There is no divide between these ideas.

(Life, breath, spirit, ideas... how can these be separated? How can a life worth living, let alone a bearable life, let alone a pulse, exist without all of them?)

As I said, I've been breathing intentionally for decades. In my 20's, I taught my ER and ICU patients a particular form of breathing which, I'd noticed, cut their pain response, lowered their blood pressure, and improved the level of oxygen in their blood -- no matter what they came in with.

In 3 breaths the difference was noticeable, and if I could persuade them to take 10, we were halfway home.

It goes like this:

1. Breathe in through your nose.

2. Draw the breath all the way down into your lower abdomen.

3. Let it out through gently pursed lips, like softly blowing out a birthday candle.

4. Repeat.

The abdominal breathing improves lung expansion. The slight backpressure on the exhalation nudges extra oxygen into the system (the importance of oxygen can't be overstated, especially in emergencies) and sends a gentle message to the blood-pressure sensors in the neck, telling them to lower pressure.

This kind of breathing activates the "calm down" part of the central nervous system, that is, the parasympathetic branch of the autonomic nervous system.

The extra oxygen helps clear some of the oxidative damage away.

It feels wonderful.

And it always works.

(Clinical note: for people with COPD, I did 2-3 breaths, and checked in. As with most adults with a chronic disease, they could generally be trusted to sense their limits and stop. Youngsters soon learn, though very few youngsters have COPD.)

Recently, I've learned a slightly different technique from the same psychologist I mentioned in my last post...

1. Notice my breathing. That's all. Let everything calm down for a bit.

2. Draw the breath into my abdomen.

3. Gradually increase the size of those abdominal breaths.

4. Let the midchest join in, getting still more air in. Exhale from the top down.

5. Eventually, let air into my abdomen, then midchest, then upper chest -- inhaling from the bottom up. My lungs are pretty fully expanded in the inhale now, and I still exhale from the top down.

6. I tell myself: My arms are heavy and warm. Soon, they are.

7. I tell myself: My legs are heavy and warm. Soon, they are.

8. I tell myself: My lower abdomen is warm and relaxed. The whole bowl of my pelvis becomes a sea of lovely calm. (I had no idea how much standing tension was stored there, at the bottom of the spine and where all the exits are -- though it makes sense, when I think about it...)

9. Then I stop contriving my breathing, and let it just flow.

After about 15 minutes, well, life is good. Really good. Talk about activating the parasympathetic nervous system.

I've forgotten what else I was going to say. I want to be that peaceful and warm right now.

Oh yeah. The point is this:

Breathing well makes everything better.

It shouldn't be that simple, but it is.

Excuse me. My limbs need to be heavy and warm... In a good way.

The wall, redux -- with demons on the side

Sooner or later, deep and chronic illness (like, oh, let's take an example at random, CRPS) will bring you face-to-face with your worst demons. It's only a question of when, and precisely how.

When I came to adulthood, I realized that I felt a powerful need to earn my right to take up space and breathe the air. You'd think I'd be a cringing slave with that underlying attitude, but I wasn't. I felt I deserved good pay, reasonable work/life conditions, and common courtesy, because that was fair; I just didn't deserve to live.

Once I could no longer work, but had to fight like mad to live, this was a bit stressful. Like many, I almost didn't make it. But then, as the very deepest trough began fading into memory, I noticed that something remarkable had happened.

Rewind about 10 years… I was a nurse for eight years, which put me in a critical relationship to others at critical points in their lives. I might have dealt with 10 patients in an hour, but, in the moment that I was dealing with each person, that was the most important person in my life. I may have coded hundreds of people, but every life I fought for, I fought for with all I had.

There were no caveats or conditions: if you were my patient, you had my absolute attention every moment I was with you.

I think this healer outranks me, but you can see
how focused he is on his patient. It's like that.

I found that it's impossible for me to work hard for someone's survival, and not come to care about them – no matter who or what they are.

Fast forward to where we started, after the deepest trough, around early 2010… I had spent several years increasingly incapacitated, used up all my money, all my favors, all my savings, and lost a lot of friends – some of them to the Grim Reaper.

I won't go into the brutal and abusive bureaucracy of California EDD or Oakland Social Security offices, because if you haven't been through it, you wouldn't believe me. That bad. Worse, even.

I woke up one spring day, with a strange sense of dawning inside. It took an hour or two to wake up, and to realize that I'd been fighting so hard, for so long, for my own survival, that I had become important to myself.

I no longer felt I needed to earn the right to live.

Ever since that time, I've never had a serious case of any kind of block – writer's block, self-care block, learning block, anything – that lasted more than a couple days, unless it was explicitly disease-related.

Then, with this move to a strange area, with no connections, near a city I almost loathe... To get real care, for the first time in years, from seven highly skilled and capable professionals…

I hit a wall. Not just a block, but a huge, massive, precision-crafted, towering, deeply bedded, gateless wall.

Since writing "Frustration at the wall", I've been faking it in the hope of making it. That's a lot of weeks to keep running up against the same damn wall!

I finally started talking about it – I'm a writer; I'm a woman; I process by words; let's move on – and began to get unscrambled. Then I had the deeply disconcerting pleasure of having my brain picked apart, cleaned with a dental pick, and neatly reassembled by the deliciously incisive Dr. Faye Weinstein. 

I can't help thinking that the following is going to strike a few chords with some of my lovely readers...

I am, as she said with characteristic precision, "a helpful, compulsively self-reliant minimizer." Really, why should I trust these people, who wield the power of Gods over what happens to me?

There's a deep part of me that says "blow that, let's go hide instead" and off I go, hiding behind advising on Facebook and diving into books and catching up on others' crises; my condition is not that bad, so my care is not really that important, and it's not like these people care more for me than their own crap anyway, so I'm on my own really.

My distraction activity is all very worthy, so I needn't justify it. But, well, so much for the many new things I need to do to put together my own health...

Unconscious reactivity could be the death of me yet.

I said this illness would raise all your demons, even the ones you've hammered a stake through the hearts of. It turns out that the squat and fetid cranks who propped up my old conviction that I "don't deserve to live" are still there, farting wetly and hawking loogies.

With apologies to Heironymous Bosch.

The demons of our earliest perils can shape our responses to major change forever. The trick is to see them for what they are, face them honestly, and put them back where they belong: in the past.

(Easier said… I think a booger just landed in my hair. At least, I hope it was a booger.)

To add to that, with years of excruciating work behind me and more ahead, my old motto of "change or die" doesn't carry the same weight: Yes, part of me wants to lie down and die. The frantic, aching, endless weariness is beyond description.

But change is more interesting. A lot more interesting. And I only get to do this life once.

Conscious curiosity could be the birth of me yet. With luck.

With a better sense of what I'm doing, I'm preparing to turn and, with tactful and gentle persistence, come to terms with those monsters.

I might as well. I'm going to be here awhile.

Speaking of which…

Marathon training update

After one day to recover from the trip south, I was able to pull off my .8 mile route up and down this hill, and recover enough a few hours later to unpack the car (that's a lot of steps!) and get some things done. Today was a lot of appointments, which involved walking at least a mile on city surfaces.

On Thursday or Friday, I hope to increase my hill walking to 1.1 or 1.2 miles. We shall see. No more overdoing.

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 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.

Letter to my PT - how about a marathon?

Dear [PT],

Something crystalized in my mind, after reading the preface to a friend's book. (On Kindle here.)

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.

Positives:

+ 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.

Negatives:

- Mostly pavement. A real problem. (I don't have to train on pavement, though.)

- Potentially difficult, risky and expensive. ...Just like life.

- Ummm...

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.

I realize we've only just met, and this might strike you as brash or ill-considered. I'm not saying it isn't, but it's very much in character and, with a little bit of faith from those backing me, could be just the mental kick to help with quite a few intermediate hurdles.

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....)

I used to be a middle-distance runner, going 4 miles up and down a canyon or 6-10 over surface streets, 2-5 days a week. I kept getting back to it, pre-injury; I enjoyed it, and looked for places to live where it was safe to run.

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.

Many thanks,

Isabel

--
Writing on science, adaptation, surviving, and running...
* Health and Life with CRPS-1: http://livinganyway.blogspot.com/
* Cauterizing the Bleeding Edge of medicine and science: http://biowizardry.blogspot.com