Changing the glass, resetting limits

I have to resurrect a set of rules I thought I’d gotten past:
 
– No internet before noon.
– No more than 2 hours daily for all internet activity: email, FaceBook, Twitter, research, posting and illustrating blogs.
– This includes surfing on the phone.
 
I will be moving upstairs to a brighter apartment that’s arranged better for two. J still plans to move in come September, so I’m grabbing the opportunity while it’s there.
 
For the past several months I’ve been learning to notice and deal constructively with signals from body and brain. Part of the reality of this is, there’s a ton of backlog to sort out.
 
This is significant, partly due to CRPS and partly to the nature of last year, which was an ongoing festival of upheaval:
 
– Got SSDI.
– Had to save life of same friend twice in three months.
– Sold my boat/home.
– Moved 3 times.
– Travelled for 6 months at a stretch.
– Started an important romantic relationship.
– Had 2 serious threats hanging over my own life.
 
It’s not good for the ANS, all this excitement.  I’m not personally opposed to eventfulness, it’s just really hard on my regulatory systems. Given similar situations, I’d probably have to do similar things, but it’s time to chill the h#11 out now.
 
I’m moving and it makes my lizard brain howl — if lizards can howl.
 
I’m moving upstairs,  not far at all. And it’ll be safer — you can’t even find it from the road. It’ll be brighter and quieter. The paint scheme is far more cheery and pleasant.
 
But I’m moving, and at some level, that’s an absolute… That is, an absolute brain-fogging mess of suppressed fight-or-flight response and irrational despair. It’s seriously altering how well and how long I can think… changing the water level in my current glass, so to speak.
 
Packing my few things is not a physically imposing task,  but moving at all is a brain-crippling one, apparently.
 
I still have to maintain my care schedule, keep appointments and stay caught up (-ish) on laundry and groceries, none of which is optional.
 
When my adrenals are under stress, my brain gets quickly exhausted, especially in the morning. According to my old acupuncturist, that’s a classic diagnostic indicator. Cognition is linked to adrenal function, he says.
 
The thing to do is go with it, and not make decisions or try to parse communications until the whole system has had a chance to wake up and get moving. Thoroughly.
 
So, out of respect for my brain’s needs, I’ll be spending my mornings playing with the kitten and catching up on my bookshelves, instead of being online.
 
Oh gee, isn’t that tough 🙂
 
And when I’ve moved in and gotten the new place under control, with no intention of moving again until I’ve got a “forever home” to go to, I’ll find out just how resilient this brain really is and see what parameters make sense then.
 
Until then, the online world will go on with, at most, 2 hours a day of attention from me — for research, social networking, web page managing,  and posting & illustrating blogs.
 
We’ll manage just fine.
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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.

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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.”

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Unexpected adventures with the rent

Yesterday I did 10 minutes on the treadmill. Today, I walked almost a full mile of this hill in 18 minutes and 16 seconds — no shuffling, no stopping, lots of striding, not much slowing down. Woo hoo!

I’d better start scouting trails and footpaths around here. I’m going to need more options soon.

As I calm my breathing in preparation for my autogenic exercise (more on that later), I have to admit that I had some angst to work off, and that probably had something to do with the pace I kept up.

Last night, I realized I’d lost my ATM card. I have one bank, one card, and one checkbook. … Er… had…

The card was gone.

The checkbook was empty.
I’m fresh out of cash.
And rent is due.
Suuuuuuuuuucks.

Welcome to My Brain on CRPS!

To be completely apt, these should be thoroughly scrambled.

I went to the landlady’s bank to see if we could do a wire transfer.
Turns out they’re closed on Wednesday.

I called a different branch and asked if they could.
No, not without an account of my own.

I asked if I could open an account with a wire transfer.
After 20 minutes on hold, it turned out that I could only open an account with cash or a check.

Rather than repeating myself, I said, “You realize that does me no good.”

I called my bank (a local savings bank) in Massachusetts. They were pleased to tell me that someone had called in my missing card and it had been cancelled promptly. 2 weeks to get another one.

They couldn’t do a wire transfer because they’re rather old-school, and I hadn’t gone into a branch and filed the appropriate form in person.

But — and this is why I stay with them — they didn’t end the conversation there.

After exploring several possibilities, which turned up as dead ends, I thought of Cougar, one of my angels (a word with specific meaning.) He bears a passing resemblance to a slimmer and semi-shaven Jerry Garcia..

A recent photo by yours truly.

But, more importantly, he takes my mail. Why?

In case you hadn’t noticed, I move around a lot. (I’m looking for a place that has an affordable cost of living, good soil, first-rate medical care, and no extra pollution or radiation, and one day I’ll find it.) I’m here in California for awhile for medical care, BUT, no matter where the rest of me goes, my mailing address remains the same.

The benefits are tremendous:

  • Not only is my steel-sieve brain spared the affliction of changing my address every time I move,
  • Not only are my ridiculous paws spared the trouble of wrestling with envelopes and handling papercuts (a task which cougar claws are apparently well-adapted for),
  • But my memory and cognition issues get a real break from having to deal with pieces of effing paper. I have developed a mental block around dealing with pieces of effing paper, so I get them into softcopy as soon as possible.

Or, rather, most of the time, Cougar does… Because he doesn’t just take in my mail, he scans it in and sends me softcopy of anything I ask him to open. This means I have COMPLETE RECORDS of everything I need to keep track of.

He’s the Magnificent Mail Mage, and I’m grateful. Take that, Pain-Brain!

He’s my current Cash Carrier, now. The management staff at my lovely little bank have agreed to work with him as my designated agent, and will provide him with the cash I request — which he will then send to me via Western Union, so I can take care of business here. And with it, I’ll pay rent, open a bank account locally, and try not to let this happen ever, ever again.

Meanwhile, it’s time to get my heart rate down from the clouds and that strangely full feeling out of my tissues. Easier said…

While the excitement is over for the moment, I have a vivid memory of the stress-tracking line on the biofeedback machine, and how bloody hard and bloody long it takes to get the level to drop after it goes up over something as small as one giggle.

This was no giggle. In fact, it was several hours of no giggle. None. A totally giggle-free period.

I found it stressful.

The walk helped. And I hope — when I find some good forest trails to explore — to spot some wildlife.

Meanwhile, I’m off the hook for laundry and shopping. It all has to wait until tomorrow. Bonus!

Everyone should have a little cougarosity in their lives…

 

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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
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Frustration at the wall

I’ve had my nose shoved up against a wall for two and a half weeks now. It’s very frustrating but it’s the nature of this disease that, at times, I’m going to get stopped in my tracks, and I may not always understand why.

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…

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Waiting

I’m sitting in the lab’s waiting room, recovering from the most recent vampire attack.

It’s always a bit of a circus. As I said to the lab tech, “I used to be a trauma nurse. What would be the fun of being an easy stick?”

This time, I had the joyful opportunity of having the first lab tech assess my veins and go find a better vampire without even poking me first. His hands were actually shaking by the time he left.

All I could do was laugh to myself. I used to have hosepipes for veins. They were still leathery, full of valves, and inclined to roll, but with a sharp needle and good technique, you could nail ’em with your eyes closed.

Now it takes 5 minutes with the warm pack (hot water in a blue glove) and the sharpest needler in the house. She got it in one.

In thematically related news… I’ve been essentially incommunicado since I moved into the new cabin. Internet is supposed to come tomorrow and AT&T has knocked $50 off my bill for not providing service yet and having terrible communication with me (losing notes, calling back the wrong week, trying to send me on wild goose chases) when they do get through.

Every effort to do anything other than nest — carefully, gently, and in small controlled increments of effort — seems to take 10 times the effort it should. Not two or three times. 10 times.

All I can do is laugh to myself… and, when necessary (such as when someone’s looming over me with a sharp instrument and a purposeful expression), sitting firmly on my perpetually hair-triggered fight-or-flight response.

As I said to the same skillful lab tech, “I have good doctors, and I’m finally getting lab tests, PT and good care.”

This is why I protect my mental faculties so vigilantly. They let me assess the real risk, the real effort, the real impact of the moment, so I can talk the CRPS-triggered responses down out of the sky.

And then wait for my system to recover.

I think I’m ready to go now.

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