There’s always an afterwards

When I was a nurse, I could see when death was creeping up on someone. I saw gray fluttering around the person’s edges, especially around the head and upper body. As they recovered, the fluttering grew narrower and disappeared; as they lost ground, it grew wider, sometimes growing too wide to see.

Rear view of sturdy stone angel inside a lovel stone church

When that happened, I made sure I could find the code cart, because we were going to need it.

I worked and fought like hell to shrink that fluttering, to get each person closer to life.

Not every life can be saved. There’s a dislocating moment when, after working with several others to try to revive someone, it sinks in upon all of you – neaerly simultaneously – that it’s a lost cause, and then the doctor calls the code.

Everyone steps back for a moment, same expression on their faces: eyebrows up, eyes on the erstwhile patient, mouth slightly open, every brain running through the scenario and looking for something left undone (never has been, on my teams)… pausing in the shock of rebooting.

When I was coding someone, that person was the most important thing in my world, and all of my training and experience and physical capacity was tightly woven into my determination to get them back. When I had to stop coding them, all of that intense focus, activity, and energy had to come to a screeching halt, be re-assimilated back into my reserve, and clear the way for the next set of tasks. Not a trivial job.

Multiply  that by the number of professionals in the room, and you see why there’s always a breathless pause, even in the most practiced ER.

Then we get back to work, but it’s the work of cleaning up, restocking supplies and meds, prepping the body for the morgue/organ harvesting, and clearing the way for the next incident — a gunshot wound, a bloody nose, a beaten child, a drama queen or king; could be anything.

This explains a lot about ER staff: whatever happens, however we feel about it, we have to clear it away, clean up, restock, and be ready for the most trivial or the most harrowing issues to come in that door next — with little or no warning. Then deal with that, sometimes by brutal means (which you’d understand if you ever saw a chest tube placed or helped set bones for someone who’s been beaten.) Then go home, get food down and go to sleep, and be ready to  come in the next day and do it all over again. Day after day after week after year.

Imagine what that takes.

No wonder they often seem a bit detached, a bit harsh, a bit clueless about the human impact of what they do. They have to come back to that every working day, and try to stay above the madness.

Bosch_painting_of_Hell_(582x800)

The very day I realized I’d forgotten the human impact, was the day I knew I had to change careers. No wonder my immune system was failing. The effort to protect myself was killing me.

My dad’s death was unexpected, and happened overseas. It happened shortly after I knew I’d have to change careers, and shortly before I gave notice and surrendered my RN licensure.

I don’t think I’ll talk about it much, except to pass on the best advice I ever got about survival:

Take every opportunity to be happy, because it makes you stronger for the other times.

Less than a year later, one of my dearest friends died suddenly, back East… After that, I lost someone I loved every month or two, for just over a year… and somewhere in the middle of that, my relationship fell apart.

Hellish, tragic and harrowing as that period of time was, it turned out to be training wheels for being disabled with CRPS and all that comes with that.

It’s no wonder I have some of the symptoms of someone in an abusive relationship. I am; it’s called Life.

me-fingers-2up
And that’s what I say about it.

I’ve seen the grey fluttering around myself more often than I’d care to say. I’ve wrestled with the desperate temptation to end this brutal, chaotic nonsense for myself.

Angels_lossy_notsonice

My own intransigence saves me; no stupid disease gets to win. The very thought is intolerable. Not gonna let it happen.

US Navy: Marines of the embarked 15th Marine Expeditionary Unit practice hand-to-hand combat
I identify with both. They’re working their butts off and there’s no telling who’ll win… but neither one will cry uncle.

I’ve had to tell myself, sometimes every few seconds, “Keep breathing. This will pass. There is an afterwards. Just stay alive long enough to see it. There is an afterwards. Let’s find out what it’ll be like. Keep breathing. This will pass.”

Verbatim.

And, eventually, times like this morning come, which thaw those unspeakable memories on the warm stove of peace…

Gentle air from a misty morning caresses my mouth. Happy morning voices trickle in from the neighbors. My tea tastes just right. The birds are screaming their fool heads off in the greenery. My feline ray  of sunshine can’t stop moving for the sheer glee of being alive.

Ari-squirming

It’s simple, but it’s perfect.

I find myself glancing back at the shadows behind me, giving them a nod.

I was right. There is always an afterwards.

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Is losing our minds to “pain brain” optional?

64% of CRPSers experience significant cognitive decline. Speaking as a member of that majority, I think that sucks. Most people with chronic pain find that they experience the following:

– Confusion: it’s harder to keep track of things like we used to.

– Forgetfulness: forget the car keys? We’re capable of forgetting the car. It’s more than a touch of early onset Oldtimer’s.

– Distractability: I got up in the middle of a sentence when my meditation exercise was playing. I forgot what I was doing netween one syllable and the next and I could NOT make myself lie down again.

– Locked focus: once I do get into something, it can be impossible to tear myself away, even if I need to move or stretch or calm a racing heart. It’s *weird.*

– Memory: Forgetting the car? Sometimes I forget my birthplace. There are random, shifting holes in my long-term memory that I can’t do anything about, except waffle and flannel until the subject changes. Learning anything new that isn’t related to CRPS or writing (which my brain seems to have anchored with industrial grade mooring chains, so far) is pretty much doomed.

– Intense, driving feelings: catch me on a bad pain day and discover a new word for female dog, and it’s not because I want to be like that, but my internal brakes are off and everything feels like the emotional equivalent of flashing neon.

– Oversimplifying/black-and-white thinking: this was one of the first issues we addressed in my functional restoration class all those years ago. Without constant checking, chronic pain makes everything MUCH more intense, and maintaining middle gears is a constant job.

– Poor sleep. Trouble waking up. No duh.

 

Now, just for grins, let’s look at the list of symptoms for AD/HD:

– Difficulty tracking complex ideas/confusion

– Forgetfulness.

– Distractability.

– Locked focus.

– Memory issues.

– Intense, driving feelings.

– Oversimplifying/black-and-white thinking.

– Poor sleep. Trouble waking up. Hel-lo!

 

Is it just me, or is there a wee bit of overlap here?

 

Classically, ADD (or ADHD, or AD(optionalH)D) is not considered an aquired disease. However, I noticed that the parts of the brain that ARE distorted in ADD are some of the same parts of the brain that GET distorted in CRPS — and perhaps in other types of chronic pain.

 

We aren’t making these symptons up. We struggle mightily to keep our symptoms under some kind of control, but the worse this particular family of symptoms gets, the closer it gets to impossible to keep it under control.

 

Fortunately, ADD (et alia) has been treated successfully for years. The meds used overlap with meds used for neuropathic pain, depression and dysautonomia (because it’s all about regulated nerve signaling); the techniques overlap with the techniques for handling CRPS, dysautonomia and chronic pain (see my last two posts); and the therapy follow-up ties into the fact that ongoing counselling is part of the gold standard of treatment for CRPS, and darn well should be for chronic pain.

 

This is solvable. Let’s get our brains back, because life is too short for this to be allowed to continue.

 

When I get my scientific studies lined up, I’ll rewrite this for my bioscience blog. Feel free to take it to your doctor.

 

We can do this.

 

Meanwhile, borrow a couple of books like “you mean I’m not lazy, stupid or crazy?” and “delivered from distraction”, and see if it doesn’t take a load off your mind to recognize that there IS a way forward.

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Relentless

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

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

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

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

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

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

poison_skull

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

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

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

George_Goodwin_Kilburne_Writing_a_letter_home_1875

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

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

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

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

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

Marathon update:

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

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

old_school_surgeon

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

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It’s a different world in here

TRIGGER WARNING: Body image. With a twist.

I feel like I’ve been inflated. If I get any larger, I may collapse in on myself and form a neutron star — possibly even a black hole.

"Portrait of the Quasar as a Young Black Hole" from NASA's Hubble telescope
Charming, eh? And round.

My pain psychologist isn’t worried. She thinks there’s nothing wrong with “a little comfort weight”, especially as I’ve been making such progress in her area.  Of course, she has a slender elfin figure herself.

This isn’t the usual rant about weight and health, or the girly American whining about fat. This is about living from the inside out, and what happens when my physical vehicle takes up a whole lane.

Nursing has a diagnosis called, “Body Image Disturbance.” Take a look at that phrase for a minute. It’s very telling.

Body
Our physical interface with the world; the medium we use to communicate with others; the first sensory impression we get of our surroundings; the complex organism that gets us from one place to another; the thing that gives others their first sense of who or what we are.

Image
Our mental framework, or paradigm; the belief or understanding we have about our presence or effect in the world; the way others tend to think of us; the way we think they think of us.

Disturbance
Something awry — probably disturbingly so. Not good.

Do we need to address the usual social issues? Yes, skinny people get treated better, all across the board; fat people are far more likely to get abused and overlooked, and not just for sex — for everything. Lots of people have made lots of money writing lots of books about that, so read them if you’re confused.

Let’s move on.

I’m in a different sensory and physical world from what I’m used to, and it’s a really strange one. The experience of physical life from this different shape is, yes, disturbing.

My feet are pressing so hard against the ground that my shoes fit differently.  When I carry something, it pushes my weight over the tolerable limit and threatens to bring the CRPS in my feet back to life — and I had just about gotten rid of the pain symptoms there. The circulatory symptoms are another matter — zombie-foot is a regular event.

My cat floats above me by quite a few inches, when he should be lying more or less on my abdominal muscles plus a blanket of padding.  It’s weird to have to reach so far up from my spine to pet him — my shoulder rotates much further in my cuff than I’d expect. I’m getting better at feeling my joints, and this is not exactly a positive feedback loop.

My upper arms keep catching against my sides. This is rather disorienting, since I’m improving my sense of my body in space and usually, when my arm catches on something, it means I need to increase the space between me and foreign object. There’s no foreign object. It’s just more of me. Weird.

I had a sway in my lower  back which I managed to straighten out awhile ago. Better spinal posture means less pain overall. So now I have a substantial, unstable weight hanging in front of my spine, which means I have to work my abdominal muscles really hard to pull it closer to my center of gravity so I can just stay in balance.

My abs are killing me. If I don’t use them, my lower back hurts me worse, so those abs are constantly on duty.

I give them a break and relax them when I sit down — and it’s like being on top of a balloon that inflates, as my stomach takes over the lower horizon.

balloons-innflating

I poke it curiously, wondering how far down I have to go to find the original outline. I give up at the second knuckle. Too discouraging.

When I sit in my car, my right hip brushes against the driver’s armrest.  First thought: I’m over too far to the right; my hip shouldn’t be near that. Wrong. I’m dead center. It’s my hip that has travelled far.

But there is an up-side. When I fold my hands together, I have a perfect armrest. Soooo comfortable. It’s like it was made for me!

And the stares I used to get — or rather, that my endocrine-disrupted DDD cups used to get? Gone. No wolf-whistles or dribble on the sidewalk from creepy slimebuckets who seem to think I should be delighted at their lack of self-command. Nobody’s goosed me or grabbed a feel in ages!

It’s very peaceful. Makes it a lot easier to feel at home in my own skin, not to be bracing for the next random invasion of privacy.

I’m no longer constantly holding a sharp elbow at the ready, to fend off some suddenly-clumsy dude who goggles briefly, with a word-balloon appearing above his head that says “are those real?”, then says “oops” and bumps into my pneumatic (and sensitive) form as if by mistake. I got so freakin’ tired of that!

Perhaps a leather vest with spikes all around…

myvest_front_med

This, incidentally, is why so many women feel  comforted wearing a burka. It makes the wearer more sexually invisible and insulates her from much of this random predatory crap.

My fleshly burka. Take that, right-wing-nuts — of any religion. You don’t even WANT to control this.

And, in a huge relief to my CRPS-riddled body, nobody wants to slam into it now, either. Yesssss!

I’ve got to get that vest. I can’t, and don’t want to, keep the fleshly burka, but I have to find a way to manage the body-slams. Never again.

As for food… Here’s what I’ve learned for the current incarnation of CRPS endocrine/digestive ballyhoo:

– No grains of any kind. No lentils or beans.
– No dairy, except small amounts of hard cheese — the protein sufficiently altered that I can handle it in small doses.
– No sugar at all, but more unrefined stevia.
– I’ll have to get kefir “grains” and make my own water-kefir. I have some ideas for that.

I still have most of the world of nontoxic produce, nuts, and meat from healthy animals to sit down to. There are worse things… It isn’t cheap, but I’m learning where to shop. And it sure tastes good.

P.S. You want what?? Measurements, weight, photographs? They miss the point. I’m not looking at me, I’m looking from me.

I’m not comparing myself to anyone or anything. This is simply the view from inside. Hope it’s worth a laugh or two 🙂

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Marathon update

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

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

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

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

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

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

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

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

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

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

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

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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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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.

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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.

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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!

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Overdoing…the first time

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

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

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

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

Saturday was a dead loss.

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

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

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

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

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

My kitten just typed $. I have no idea…

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

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