CRPS, or Complex Regional Pain Syndrome (Type 1), is a change in the nervous system that's usually triggered by a very painful episode. The bad kinds affect the brain, nerves, muscles, skin, metabolism, circulation, and fight-or-flight response. Lucky me; that's what I've got. ... But life is still inherently good (or I don't know when to quit; either way) and, good or not, life still goes on.

Wednesday, September 18, 2013

I've moved the blog to its own URL,, and put it on a wordpress backend, so the full URL is what you see in the title:

All the posts are there, and all your wise and lovely comments. And I hope it doesn't get hijacked, like this site did.

Saturday, June 8, 2013

Recipe: Even Brain Food Shakes evolve

As my digestion has gotten more frail, I've had more and more trouble with my Brain Food shake.
I went to a powder, because organic kale was hard to find and unwieldy,  and the nonorganic kind smells like a chemist's armpit. And was still unwieldy.
But those shakes still hit my stomach like a cannonball.
J listened to me complain for the second day in a row and said, "Don't eat fruits and vegetables together. Of course it's impossible to digest."
I stared at him a moment. "I used to know that," I said with chagrin.
That was over a month ago and I think I've finally figured out how to make the greens taste like something other than pond.
So here are the current incarnations of my Brain Food Shakes, the simplest way to get maximum nutrition with minimal effort:
Morning Shake:
- 1/4 pound Trader Joe's frozen Wild Boreal Blueberries (high anthocyanins, low toxins)
- heaping soupspoon almond butter (good oil, protein, minerals) (TJ's is cheapest)
- Cal-mag supplement (for nerve transmission, teeth and bones; 1 tablespn Lifetime brand, blueberry flavor)
- 1/8 tsp clove powder (massive antioxidants, calms nerve pain, and I love clove)
- ~3 oz apple juice concentrate (malic acid helps clear cellular detritus)
- stevia (stabilizes blood sugar, cuts any lingering bitterness)
Whizz it until the flakes of blueberry skin are more or less uniform and quite small.
I've recently added:
- fat pinch of schizandra berries (massive antioxidants, seems to stabilize neurotransmitter behavior; whole berries take extra time in the blender)
- lecithin (improves digestibility and oil uptake)
Once everything's whizzed down smooth, I add at the last minute:
- 1/2-3/4 cup blueberry kefir (I really like Lifeway brand, blueberry or plain)
The point of blenderizing is to chop open those cells so the nutrition is easy to get to, but with kefir or yogurt, the cells only work if they're intact. So I whizz in kefir just until blended, maybe 2 seconds.
I mix in blackberries and fresh local berries when I can. On the road, I use dried currants, which are an overlooked "antioxidant powerhouse", in modern marketing lingo. They can make the sweetness overwhelming, though.
This afternoon (fruit is more appropriate in the morning, veg in the afternoon) I tried something like this:
Afternoon Shake:
- Vegetable juice (TJ's Garden Patch, but I'm open to suggestions)
- Scoop of green powder (I get distinct results from Garden of Life brand Perfect Food Raw; brain really perks up)
- 1/4-1/2 an avocado (cleans up blood vessels, great oil)
- 2 handfuls chopped kale (most nutritious veg per calorie; thanks to TJ's for taking the work out of prepping organic kale)
- 1 handful sliced cabbage (sulfur for brain, glutathione precursor; also, does something magical to the kale so it tastes smooth and mild)
- salt (reduces ANS/POTS symptoms of dizziness and wonky bp)
- lecithin
- 1-2 individual grains of Epsom salt, a.k.a. magnesium sulfate (sulfur for the brain, magnesium for nerve transmission and electrolyte balance)
- water enough to make it go
Has a wonderfully fresh, pleasingly grownup flavor. A bit of cilantro, onion and lemon, and you could call it gazpacho.
I'm considering a pinch of curry powder, for the antiinflammatory circumin and that wonderful taste. It doesn't need it, but it could add a bit of variety. 
I've often said that it HAS to taste good, or I won't be able to keep doing it. And, since I test regularly (that is, try to do without), I know I have to keep doing it.
And as long as it tastes this good, I'm happy to do so.

Wednesday, June 5, 2013

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.

Sunday, June 2, 2013

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.

Tuesday, May 14, 2013

Half-glassed -- a metaphor for flexibility

We all know the old trope: half full, or half empty?

I worked at Borland, which means, I worked with highly capable engineers who were accustomed to doing things right. I once got a very friendly, but very earnest, lecture about the half-glass phenomenon: the point is not whether the glass is half-full or half-empty.

The problem is, the glass was not designed for that amount of water. You either have to fill the glass,
... or use a vessel that's designed to hold that quantity.

The whole half-glass thing drives them crazy. It's not a matter of attitude, it's just bad design!

I love engineers. There's something adorable about the way they storm the gates of Accuracy, convinced it's the same as Truth.
At first glance, that attitude looks silly at times. On deeper thought, they're usually right.

I was thinking about the engineering approach to the half-glass issue, while my subconscious was still bathed in reflections on Rosalie.

I realized that the engineering approach is exactly what those of us with crippling disease have to do: our glasses, our outward lives, were designed to hold a lot more than we've got right now.

We either have to build up what we have to put into it, or we need to use a smaller glass. A significant disparity between what our lives can hold, and what they do hold, is depressing. They need to match up better.

Rosalie alternated, and I think all of us with chronic disease (and determination) do that as well. Sometimes we can build ourselves up, and expand what we can put into that glass; sometimes we adjust our expectations and commitments, making the glass smaller so that the contents fit.

I like this image, because it reminds me that I can do either thing. When pushing against my limits doesn't work, when I really can't get another drop of water into that glass, I can pull back my expectations and switch to a smaller glass.

By now, I have mental cupboards full of wildly mismatched drinkware – a glass for every occasion, for every level of function so far.
The one on the right is for when my hands don't work.
"My cup runneth over" takes on a new meaning now, doesn't it? When it does, I'll reach for a bigger glass.

Rosalie's gold

I met Rosalie about 15 years ago, when she put me up for my dad's second wedding. I fell in love with her on sight, when she threw open the door and bathed me and my brothers in such warmth and delight that even awkward, dorky I felt completely welcome in her life.

I stayed in the little den next to her bedroom, overlooking the pool. Her house was built in the 50s, when her neighborhood was inexpensive and remote. It has an endless view across the whole valley of Los Angeles.

She was a spring chicken, only 83 years old. She had already had two back surgeries to fuse vertebrae, and scooted around – with characteristic energy – in the distinctive crow-backed shuffle of post-fixation chronic back pain.

About five years later, my CRPS journey started. Rosalie was my first model of how to handle increasing pain and disability with a degree of grace and poise. Whenever I came to visit my stepmom or her mother, I'd see if Rosalie's and my schedules would allow a visit. In all those years, I don't think she failed to raise a smile more than once or twice, despite some brutal trials.

She had several more surgeries, implanted devices, physical therapy, and she swam laps in her pool whenever she could possibly manage it, inviting whoever came over to swim with her to have a glass of wine and tonic water (or gin instead of wine, for my stepmom) afterwards.

She kept love in focus: for her offspring and her dear friends, she had a seemingly bottomless well of love and regard, regardless of the vicissitudes of life and relationships.

She was always herself: whatever her opinion, and whether or not you agreed with it, she would let you know. No energy and no words were wasted on making things seem nicer than they were. You never had to wonder what her agenda was. And she managed that without ever being pissy or the least bit mean. Conservation of energy, including emotional energy, is a big issue for pain conditions, because pain is so exhausting; she didn't waste a drop.

Yet she was famous for the radiancy of her outlook, not to mention of her smile. As soon as she had answered the question, "How are you?" with customary honesty, she visibly put that aside, turned her bright eyes on her visitors, and got them talking about more interesting things. She kept her focus where it belonged: on the rest of life.

As I said at her memorial service yesterday, she always looked for the nuggets of gold, whatever else was going on. She always looked for a way forward, whatever held her back.

If you've read this blog for any length of time, you know that I hardly ever write about anything until I've found the nugget of gold. You know that I always look for a way forward, whatever holds me back.

I can find this in myself, in large part because Rosalie gave me a living, breathing, occasionally querulous but never unfair, always loving, always real example of how to do it. I need those living models. I can learn only so much in theory.

This is real life. And sooner or later, it ends. I'm slightly bowled over by this intensely personal realization that the true radiance of a life can outlast the grave. Rosalie's radiance is with me still, reflected off these nuggets of gold.

Sunday, May 5, 2013

Moving is hard anyway

Intermittently, this page is getting redirected (the Back button usually takes you back to this blog) and Google is becoming more and more problematic. It's like their old adage of "Don't be evil" is fading into the mists of time, along with Borland C++ and proper punctuation.

I'll be switching my active blogs to new URLs, but don't worry, I intend to redirect this link myself (take that, hackers!) to the new link.

It'll be good.

In the meantime, I'm in geek hell. If I could remember more from my software-career days, I'd be in much better shape, but I have to relearn a bunch of basic stuff with a CRPS-riddled brain.

Yeah. It's a ball.

So there's some blood, sweat, tears, and probably no further posts until this is sorted out, but then (I hope) things will be even better and easier and cleaner than before. 

Those of you much-cherished people who've subscribed via email, I'd love to be able to port your subscriptions myself, but we might have to do that the old-fashioned way. There will definitely be a way to sign up again on the new page.

Wish me luck, patience, insight, and adequate brains...

Tuesday, April 30, 2013


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.

Tuesday, April 23, 2013

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.

Sunday, April 21, 2013

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!