Update: using adaptation tools

Isy / May 29, 2022 / adaptation, brain care, critical thinking, CRPS knock-on effects, imp-possible, loved ones, perspective, radical presence/radical acceptance, self-care, tools and techniques, what works

Yesterday, it came naturally to be warmly present for V during a big event where I stood in for her, even at a distance of 3,000 miles or so. Gotta love technology for that!

Today, I think of D and the anticipatory grief is like a warm finger of current, pulling at me without tearing at my core or dragging my mind away. He’s here now, and everyone who cares about him is working on a graceful last chapter to his intense, vivid, improbably well-groomed life. (Yes, he’s quite a character!)

This recovery is not all perfect: after yesterday’s 8-hour social endurance event (a physical and physiological experience piled on top of a very neurologically demanding week) I woke up this morning with a pure dys-autonomic experience I haven’t had in a very long time.

On the very cusp of waking, as I first became physically aware of the real world, my body’s temperature-regulation mechanism dropped off the rails.

I suddenly got intensely cold, that bone-deep cold that makes the smallest touch of air feel like knives. Imagine full-body Reynaud’s, with added concertina wire. It’s amazing how cold my skin suddenly gets to the touch when this happens, after feeling just right at the moment I started to wake.

So, I did what I learned to do 10 years ago, when the dysautonomia really kicked in with this: I pulled my down duvet completely over me and tucked in every gap, wrapping it right around my head, and constructed a little tunnel just big enough to breathe fresh air through. (Fresh air seems to speed up the recovery period.)

Nothing I can do after that but wait for it to pass, as my regulatory thingies come to terms with being awake instead of asleep (one autonomic function) and being able to be at the right temperature (another autonomic function.) I know that it will pass, while my system creeps toward wakefulness.

Big shrug. The Nasty Cold Snap hasn’t been part of my day in a very long time, which is good!

This just goes to show that the physical/physiological impact of these flows of stress and anguish isn’t negated. Expecting that would be unrealistic.

They are manageable. That’s the point.

Doing those “brain first aid” things makes handling the weighty, current reality bearable. That means I’m still capable of several important tasks:

I can bring my tips and tricks to bear against the physical effects of this illness.
I can think my way through ordinary (to me) problems.
I can remember that things pass: the Nasty Cold Snap will pass, as the mental shock passed, as even terror passes when it’s allowed to.
I return fairly quickly to my normal frame of mind — which beats trauma-brain all hollow!

There’s still a bit more physical recovery involved, mostly giving my systems a chance to finish returning to their normal function and easing up on the extra weakness, reactivity, and pain.

But, basically, I’m OK. I’m able to show up for myself and my friends. That’s what it’s all about.

My point (and I do have one) is…

The skills I learned in psychotherapy really work when I use them, and I’m so relieved.

I want to make the point that psychotherapy is not “just like talking to a friend”, because our friends don’t need a graduate degree to be our friends. Psychotherapy is a professional-level, highly customized form of care, even if it feels relaxed (creating an environment where you can relax is one of the skills of a good shrink.)

Nor is it a passive process; the skills and concepts only work if you work them. It’s good to be heard; that said, it’s also good to remember that real healing involves relevant changes. The fun (??) part is, in medicine, we may influence the changes but there’s a significant random element involved in them; in psychotherapy, the client steers the whole process. While being an active, involved patient can improve outcomes in medicine, being an active, involved client does improve outcomes in psychotherapy.

So, there’s the core message behind this 2-part series, part of the ongoing “what works” toolkit. Psychotherapy works, when done properly and used diligently. Just like any other kind of care. It’s not magic. It’s skills.

Adaptation tools in use

Isy / May 26, 2022May 26, 2022 / activity, adaptation, ANS and fight-or-flight, brain care, Covid-19, CRPS knock-on effects, imp-possible, loved ones, mortality, radical presence/radical acceptance, tools and techniques, what works

As some of you know, CRPS & dysautonomia involve constant re-traumatizing of the brain & nervous system. Our brains have flows that can resemble that of people living with domestic violence, because the CRPS itself keeps waling on us physiologically, in the same way people who get abused are waled on physically and emotionally.

This is why psychotherapy is part of the gold standard of treatment for intense chronic pain generally, and CRPS particularly: it takes good, highly specialized training — and ongoing coaching — to keep re-claiming and re-training the brain, so it can climb out of the being-beat-up mode and stay in the this-is-what’s-going-on-right-now mode.

Since I take the view that “whatever it takes, I’ll do it” is the way to work with such an intransigent, mean-spirited illness… I’ve naturally been persistent about holding to the gold standard of treatment, and working hard to implement everything that works for me. (Let it be clear that, just because that’s such a nice pat sentence, it is a hard road and a lot of work. Sisyphus thought pushing the same rock up the same hill was a lot of work? He should try claiming & holding ground against pain-brain.)

I’ve had tremendously capable psychotherapeutic teachers & coaches, and my present providers are over the moon for me. I tell them, “Gee, it’s like this stuff works!”

***

It’s graduation season in this college-rich area, and there are a lot of transitions taking place. I had a glorious week of family visiting and more social time than I’ve had all year. It was lovely and absolutely wonderful… yet, for a dys-y system, it’s still a lot of work. Big emotions, even good ones, trigger big neurotransmitter flows and that takes managing.

Yesterday, I got set straight by a friend I’ll call V, which was terrifying (really don’t want to lose that one) but the relationship will be better for it.

Big emotions kick out dysautonomic systems, so I started up the brain-stabilizing routines. Cool.

Then, I found out that a friend I’ll call D had nearly bled out last week and was currently in the hospital with massively metastatic cancer. He was diagnosed with limited cancer right before the first Covid-19 lock down. You know what happened with hospitals after that.

So, because he couldn’t get any treatment when it was treatable, he’s now faced with pretty horrific options and chose to go for comfort care for a very short life rather than horrendous chemo with a poor outlook anyway. He was an extreme athlete and had a rough life as a wee wiry guy in the city, so pain is no stranger, but at his age, it starts looking stupid to chase more discomfort.

Because of wacky human stuff, we hadn’t spoken in quite awhile. I’m glad we couldn’t see each other during the call because I know I was crying from the first sentence he spoke, and I suspect he was too. He’s a live wire & a cheery sprite by nature, and he made me laugh before I made him laugh, so I’m happy to say he won that round. We sorted out some heavy material and he said very nice things that were good to hear.

After that conversation, my usual brain-care toolkit was useless.

The first thing I do is, “don’t rehearse, replay, or dwell on it.” This is because that’s how trauma-tracks get laid in.

The more it replays in the mind, the deeper the distress gets planted. So, whatever it takes to prevent another topic of PTSD from getting laid in, is what I do.

I do come back and evaluate the experience for lessons a little later, but first… got to let the flaring, blaring intensity wash off before it stains, so to speak!

When the anguish of 2 perilous-feeling conversations, atop a beleaguered and recently worn brain, keeps roaring back, my usual low-key books/ shows/ audio/ doodling distractions aren’t enough.

I sat back and reached for a thought I’d had recently. There’s nothing more stabilizing for those who can do it than… what was it again?

Activity. Bilateral activity.

In my case, taking a walk.

So, with my phone reading me an audio book at the same time (clever, right?), I pulled on appropriate garments and got my wobbling butt out the door, one foot after another.

Blaring replays started up often, but I’ve had practice with this technique, and I reminded myself that *now* I walk, breathe, and follow along with a silly story; processing events comes later, *not now.*

The blaring replays got quieter by the end of the walk, and by the time I was 2 blocks from home, I could just about bear to be in my skin again.

The combination of bilateral activity (walking, wheeling, and most forms of warming activity qualify) and the distraction of a plot to follow combined to get me through the first stage of harrowing. Yay!

I followed up on a task I’d committed to for V and meditated briefly on how to follow through on family notification for D, a task that couldn’t go further last night.

The first task wasn’t executed perfectly, but I saw the error almost immediately and rectified it.

The second task, the one for D, has yet to be tried: there’s no good way to tell someone their estranged, love-hate sibling is dying, but of course it must be done and it’s not my job to try to be perfect in an impossible situation, it’s my job to be an honest, kind, and diligent friend to both of them.

So, today, once my pills are down (i.e. in a couple of hours) I’m going to the Y for non-weight-bearing exercise (because there’s only so much walking my hips and legs will tolerate) and then do something involving lots of colors (either drawing or crochet) afterwards, while listening to another story… and waiting for D’s sibling to call, so I can relay the dreadful info.

Update:
D’s sibling called, took the news with love and tears, and we conferenced in D for an agonizingly beautiful conversation. Older Sibling being lovingly overbearing and Younger Sibling trying to keep one foot in what’s really do-able, with me occasionally calling time or translating across the gaps, felt very normal to me, even though it’s not my family.

Some things are just human.

So I’ll keep breathing. And drinking lots of water. And taking extra vitamins, because this kind of stuff sucks them right outta me. (Truth to tell, you’ve only heard half of it. It’s been quite a heckin’ week.)

I can see the point of fiddling as your own city burns. Wait, I mean, Nero was a hot mess and a dreadful person to have in charge, if the legends are true.

The point I’m striving (awkwardly) to make is that arty activity calms and settles the mind, so that even devastation is less all-consuming.

I think today is a colored pencils day, or possibly even crayons. Crochet takes more thought, and I don’t want to hold myself responsible for that yet. Besides, my arm tendons are acting up, so crochet isn’t wise.

Update, Part 2:
I think I’ll take some crayons to the gym. Is that allowed? XD

Feelings pass. It’s what they do.

New normals emerge, and we learn to live with what was once unthinkable.

Adaptation is a big job sometimes, but, well, here we go again.

First aid kit – homeopathic side

Isy / October 7, 2021October 7, 2021 / basics, brain care, CRPS knock-on effects, meds/drugs, neurotransmitters, nutrition, radical presence/radical acceptance, self-care, supplements, what works

I’d like to eschew certain arguments altogether. This is not about dissing or justifying one approach over others. Every one of us has to figure out what works for our own individual selves. Anybody who feels they have the right or duty to argue otherwise, please read the last 3 paragraphs first. Thank you!

My homeopathic first aid kit

I used to keep just Arnica montana and Symphytum officinale around. As an old trauma nurse & athletic over-doer, dealing with sprains, bruises, and occasional bone bruises & minor fractures was the main point, and these two remedies are outstanding.

Then Zicam became over-the-counter shortly after Oscillococcinum hit the market during flu season, followed a year or two later by the blend Cold Calm, and winters got a lot less snurgee. So that was another win. It was interesting to finally care whether a virus came on fast or slow, because until then, it didn’t matter, because I was in for 10 to 14 days of aching yukiness either way. (Generally speaking, if it hits fast, it’s flu; if it comes on over a day or three, it’s a cold.)

It was good to be young! And healthier! XD

The current cabinet

Now I’ve got a lot more to deal with, including lower and fewer possibilities for meds, herbs, and food. Homeopathics are taking up more of my “treatment options” space as other things fall away and conventional therapeutics have less to do for me.

Here’s my current lineup:

Pain

Body pain: Arnica, 6c or 30c, or both starting with 30c and going down.

Bone pain*: still evolving this solution. Currently isolating effects of Symphytum o.(absolutely brilliant for previous fractures and bone aches in early CRPS) vs. Bryonia (commonly used for my type of bone pain) vs. Calcarea flourica (helped with aching bones 15 years ago, on occasions when Symphytum wasn’t helpful.)

Muscle cramps and spasms: Magnesium phosphorica, known as Mag phos by its many fans, 6c for pre-spasm tension or sudden onset, 30c for deeper or more persistent cramping.

Labeled as a remedy for menstrual cramps, I have found it to be outstanding for my skeletal muscles and intestinal muscles as well — as long as:

My serum magnesium is ok (I supplement with chelated magnesium twice a week, since my body plows through this electrolyte at a consistent rate);
My other electrolytes are ok, including calcium, and my vitamin D is high enough to regulate the calcium properly;
My hydration is adequate. If I can’t experience thirst normally, I blink and feel for discomfort in my eyelids, or pinch up the skin on the back of my hand and give it 1/10 of a second to return to flat. (I need to stay in the upper level of hydration for the sale of my brain & spine — as well as my kidneys, which work hard to deal with my meds.)

Note of caution: Muscle spasms are not necessarily a simple fix. Start with the simple thing and work out what your underlying tendencies are: dehydration is usually easy to sort out, and you’ll know if it helps within a day; magnesium/calcium/electrolyte levels need a simple blood test to discover; once you’ve got good info to work from, you’ll know if your next step is supplementation, medication, homeopathy, or a call to your doctor.

So, please, start with getting good objective info so you know what your particular system is likely to need when your muscles cramp. There is definitely such a thing as too much dietary magnesium, so throwing magnesium chelates at spasms can make things considerably worse if that’s not the underlying problem!

G.I.

Colic & abdominal cramps: Mag phos for the win! See above.

Constipation: As I’ve recently been reminded… first, call your pharmacist, and ask about your med side effects. Sigh, so easy to do, so hard to remember to do.

Homeopathically, Sepia and Alumina took turns being helpful, but didn’t complete the turnaround I needed.

In the end, getting off a key med, while also minimizing histamine release in my gut, while also supporting digestion with a prescribed suite of digestive enzymes and some Chinese herbs, while also eating tapioca with nothing in it but a bit of coconut sugar nearly every darned day for 6 weeks… turned that intransigent problem right around. Plus, Mag phos for the abdominal cramps.

This is a 5-star example of a multi-front approach: med revision, diet revision, toxicity reduction, and a combination of supportive measures: prescription, dietary, herbal, and homeopathic.

Life, at this end, isn’t simple. Simple solutions often aren’t enough. That’s why I value the “multi-factor” approach: nothing works that well in isolation, so I often wind up getting everything possible to head in the desired direction.

Brain

“Heated” brain feeling & stormy sensory sensitivity: still best with herbal concentrated lemon balm, which is effective & reasonable. Good homeopathic fallbacks (for me) are Silicea or Kali phosphorica, depending on accompanying feeling of irritability (Silicea) or dullness (Kali phos.).

*Bone pain treatment note: The bone pain started up as Savella cleared my system. My bowels got back into gear over the same span of time. This week, I trialled a small dose (12.5 mg twice daily) of Savella to see what it did; in 2 days, the bone pain decreased by ~80% — and my bowels shut down at the same time, leaving me with the poor sleep, delayed recovery, body pain, and joint pain that comes with the inflammatory bloom that produces.

I might give it one more shot, but honestly, there was no other change involved and I hate torturing myself.

I’ve learned what it’s like to survive without a working gut, and it’s too hard. The knock-on effects of pain, fog, and allergic activity is brutal.

So, my current personal project is to figure out another way to manage bone pain. It’s just awful, but a stalled gut is still worse.

Diet and nutrition has brought me a very long way forward, but at the moment, there’s not much more it can do. I’ve had a squeaky clean diet for years, but now it’s so carefully tuned it could probably hit high C. This may change, and if I have to do something else, I’ll figure it out when the time comes.

Pharmaceuticals have come a long, long way, especially these amazing mixed-SNRI neurotransmitter supporters. However, between my genetic tweaks affecting med assimilation and the natural effects of biochemistry, there isn’t an obvious way forward here, now that Savella has washed out for me.

Herbs are so built into my life that it’s a specific mental effort to think what else I could try here. Given that herbs A. Require frequent dosing and B. Do have side effects and I’m exhausted with side effects right now, that currently there’s nothing herbal I know of that I’m willing to try.

Homeopathics have a history of being more predictable, consistent, reliable, and safer for me than herbs and pharmaceuticals (though I owe my life to pharmaceuticals and am not dissing them, just facing another tough reality). There are several possibilities to explore, so that’s where the next step leads me.

Onward!

Last 3 paragraphs

My own approach is absolutely comprehensive — pharmaceutical, nutritional, dietetic, physical, psychological, mental, herbal, artistic, behavioral, and energetic techniques all play a part, and there’s peer-reviewed science behind over 90% of what I do. Every single intervention gets tested on me — and assessed for benefit and drawbacks — before being incorporated, and gets retested at least yearly.

I’m a diligent empiricist; as I’m responsible for exactly 1 clinical case, that is the most rational approach. Empirical science is the only method of scientific inquiry which consistently considers the individual case.

Sarcastic Sister adds:

Anyone who sincerely & totally refutes the value of homeopathic remedies is welcome to borrow my body for a week or two & see what works for themselves; I’d be happy to borrow theirs while they figure it out.

Active presence

Isy / October 1, 2020October 1, 2020 / activity, basics, CRPS knock-on effects, imp-possible, mortality, nutrition, perspective, radical presence/radical acceptance, what works

I love the term “radical presence” because it feels radical to jump the barrier of overwhelming emotion to land face-to-face with the moment and be able to look straight at it regardless. However, in practical terms it’s the opposite of radical — it’s conservative in the classic sense, because it puts us back into the realm of what’s demonstrably real and solid.

Therefore, conservative presence is the same as radical presence.

What a wonderful object lesson in putting political branding aside.

However, for the sake of clarity, I think I’ll start calling it “active presence”, as it usually takes an act of will.

When I was working as a nurse, an important part of the job was teaching people what they needed to know in order to go on better: dress the wounds, improve activity, improve nutrition, manage impaired systems (immunity, pain, respiratory), take care of relevant organs (heart, liver, pancreas, kidneys, gut, brain) and so on.

I’m sorry to say I was too idealistic at first and found myself being scoldy. The word “should” showed up a lot; worse still, “shouldn’t.” Argh! Words I’d love to take back!

I finally learned the key principle of teaching & training around life skills, especially primal ones like eating/drinking/moving: people have to start from where they are, not from where anyone, including them, thinks they should (ugh) be. The ideal is not relevant, only the real.

The first step, therefore, is to find out what that reality is, no matter how egregious. Their best hope of improvement is almost always in small, manageable steps, starting right from their current reality.

This led me to my first understanding of active presence: change has to start from this eating habit, this activity level, this degree of self management. No others exist yet! Trying to pretend they do only builds castles in the air.

However, I’ve seen patients of mine go, for example, from couch potatoes with snack-stocked shops and triple-bypass heart attacks to organic-grocery-owning half-marathon runners in a couple of years, by starting with tiny stepwise improvements: cardiac rehab class, to slow walks, and on up from there.

There are no guarantees (it’s easy to joke about people with great life habits getting hit by a bus) but hydration, nutrition, fresh air, and exercise tend to pay off tremendously– usually after a clunky adjustment period, as body and mind lurch through the initial changes.

Of course, the time that new habits take is going to pass anyway. Would you rather be reaping rewards at the end of it, or find yourself back in the rut that put you into medical care?

I’ve said exactly that to many people, with honest attention. This isn’t a trick question, nor is it an occasion for smarm. It’s a key question we all have to ask ourselves periodically throughout our lives, in one way or another. Everyone has the right to contemplate and answer that question honestly, even if the real reaponse is, “I like my habits/my rut, I see the trajectory, I know where it will take me, and I accept that probable outcome with open eyes.” I’ve had people say that, in tones varying from sweet concern for my feelings to roaring defiance. It’s all okay; it’s their call. I’d ask if they’re interested in cushioning their fall or minimizing damage to others, tailor suggestions accordingly, and then call their physician to adjust expectations and ask about/offer any ideas for mitigation over improvement. (It was never a total surprise to their doctors.)

As a patient, I have made — and continue making — complex changes in order to stay as well and functional as possible. I’m persistent like that. To me, being incapacitated is intolerable. I’d rather have better options.

“When you’re alive, anything is possible. It’s being dead that seriously limits your options.”
– Jodi Taylor

Active presence puts me on ground firm enough to step off from, and actually get somewhere. I’ve been living with a strong inward nudge to simplify, focus, and hurry up, because I don’t have much time left. It may be fallacious (I hope so), my subconscious working to override my “completion anxiety” about larger works. Given the accuracy rate of these deep, strong inward messages up to now, I’d be a complete idiot to ignore it. So, I’m simplifying, focusing, putting my ego (which is where this anxiety resides) off to one side, and buckling down on building the structure of my legacy in my head. I’ll discuss that more when there’s some output.

Dying is horrible. I don’t want to do that, ever. I’ve started to, a couple of times, and I’ve seen far too many loved ones go, especially those with these diseases. No words, no words for it… That said: Being out of this relentless, grinding circus of delicately-balanced tolerability, with horrific and likely further life-limiting consequences for certain mistakes? Really looking forward to being done with it! There will come a time — at some point, for me as for anyone — which will suck, and shortly after that, I’m absolutely certain there’ll be an end to this (extremely well-managed) biological terror and the unimaginably cruel pain that drives it.

I have this stubborn inner nudge that it’s not far off for me personally. That’s definitely NOT my choice, it’s the circumstance I find myself in. Without having wanted or chosen it, I somehow find acknowledging it to be hugely freeing!

That is intensely weird, I know. Also uncomfortable and maybe bitter and sad.

But that’s what is true for me, right here and right now.

From here, and only from this point in my often tortuous reality, can I move on.

I accept that.

Here I am.

Time for the next little step. Who knows where it’ll take me in the long run?

Let’s find out.

Focus

Isy / September 27, 2020 / adaptation, brainiac, CRPS knock-on effects, home-hunt, imp-possible, loved ones, meds/drugs, neurogastroenterology, neurotransmitters, perspective, radical presence/radical acceptance, tools and techniques

There’s a lot going on.

My own health took a hard dive late last year and the damage continues to evolve…

…On top of an increasingly human-hostile political system and increasingly deadly climate.

Fun times.

So, yeah, sitting here on a big pile of crap. But that’s not the problem.

What really bugs me is this relentless, quiet, basso-profundo voice murmuring in the back of my brain, “Hurry up. You don’t have much time. You, personally, don’t have time to waste. Pick your focus. Nothing else matters. Get to work. You don’t have much time.”

I used to have a lot of projects running at once…

I didn’t tell anyone, but I secretly hoped I’d be able to run again. I used to run 4 miles up & down a canyon in the redwoods before work most days. It was glorious. Before that, on the other coast, I ran 5 to 10 miles along the banks of the river in Alexandria, Virginia, because it felt good and kept my head clear for work on the HIV ward. I ran from one place to another because it was faster than walking.
Yeah. Well. Between dysautonomia screwing up my circulatory responses and adrenal glands, the tissue fragility of mast cell dysfunction vs. undiagnosed EDS offering to rip holes in my tissues again, and the recurring exercise intolerance, I can let that one go. I enjoyed it at the time, look back on it fondly, and intend to be grateful for that much.
I was going to start a business with a line of absolutely stellar pain creams I came up with. Seriously good stuff! It’s at least as good as the medical marijuana salve I used to make from top-shelf medical-grade bud — but totally legal everywhere! I was looking forward to getting that out to my fellow painees, doing some good and making some money. (Comment if you’re interested. I could be persuaded to sell my stock-on-hand.)
Instead, I’m willing my recipes and equipment to a friend who knows people. She can get it out, and make more when that’s gone. Meanwhile, I’ve got a few hundred bucks locked up in the only exception to my “2 piles” rule for money: 1 pile (my paycheck) for monthly expenses, and 1 pile (an insurance account from the Worker’s Comp branch of the higgledy-piggledy US system) for treatment and survival. That 3rd pile, which belongs to the business and only to the business, is gathering dust. It might help her get started.
As regular readers know, I once hoped to make my own safe home to age, work, rest, and die in.
The downside to owning a home is clearer than ever, and to a limited budget and limited body, it’s a disaster waiting to happen. That dream is dead, staked, burned, and the ashes are buried at the crossroads.
I love fixing sh-tuff. The dopamine wave is delicious. However… too many piles of sh-tuff waiting to be fixed, plus associated tools and supplies.
I’ve donated, bartered, and tossed away more than I even knew I had to spare. So far, I don’t really miss it.

Months ago, I gave up all my arts & crafts except writing and drawing. (And making masks.) I came up with some chirpy sounding reason, but it was about clearing my agenda and narrowing my focus.

There’s something intense about that voice. I look back and realize I’ve been responding to it since before this GI crisis evolved. Thinning out my pursuits. Thinning out my belongings. Thinning out my life.

Narrowing my focus long before I could hear the words this clearly.

For awhile, I thought it was a symptom of wonky chemistry, as I’ve had to do that medication square-dance that people who need neurotransmitter stabilizers have to do now and then. Chemistry is pretty good in here now, and that voice is clearer than ever.

So, here’s what there is to work with:
* I’ve done a lot of writing and training.
* The biological-sciences part of my brain has kept its doors jammed open, despite all the other closures.
* I’m an honest enough historian to know how too many people have been shut out of the process of using their health care systems, due to gender, race, class, and lousy sociohistorical times.
* Me and my friends have developed some powerful tools for being seen and being believed.
* Also, we’re pretty delightful cartoonists. (Hey, it’s a great teaching tool!)

It might be time for all of this to come together. My mission, should I choose to accept it, is to “drive” turning all this into a body of work that can continue teaching, training, and translating between chronically & profoundly ill patients and the rest of the world, long after I’m gone.

I have only 2 jobs now: stay as well as possible for as long as possible, and craft that legacy.

It’s frightening to contemplate pushing everything else off my plate, but the experience of the past year has shown me, over and over, the peace and release that happens after.

I don’t have to find the perfect home, although I’d sure be grateful if it landed on me and sucked me right in. (I can’t pack myself up to move one more time.) I have to make this one work better, and get on with the rest of my life. I honestly don’t think I’ve got a lot of time.

But then, I’m not sure that’s the point. Maybe I just can’t focus on more than 2 jobs anymore.

Chaos theory

Isy / September 19, 2020September 19, 2020 / adaptation, critical thinking, CRPS knock-on effects, imp-possible, martial & internal arts, mortality, perspective, radical presence/radical acceptance, tools and techniques

As regular readers know, I’ve had an eventful life. The past 20 years, particularly, have been a circus of bizarre improbabilities, oxymoronic paradoxes, and irreconcilable conundrums. My life reads like a dystopian comedy, if your sense of humor is sufficiently twisted.

This is why I’ve got the category “imp-possible” going in this blog. It looks merely cute, but it has a lot of layers. Imps could be little devils, or little fairies, or little children. They emphasize the power of the small. It feels like the only power left. “Imp” also suggests the power of the unexpected.

As the current American president’s so-called “tax cut” comes home, the US Disability Income management agency, Social Security, has decided to trim costs in anticipation of their lost income: they’re cutting my pay, on the grounds that the Worker’s Compensation element of US health care paid me off for being hurt. Separately, they handed over a bunch of health insurance money so Medicare wouldn’t have to pay for my work-related treatment.

Social Security confused the two, and then added zeros to the left of the decimal, divided it by 12, multiplied that by the square root of Guatemala (I’m making this up, just like they did), slapped a bonus on it, and decided I make OVER $5,000 PER MONTH and they’re going to count 80% of that and dock my pay by ~$160 per month…

I’m allowed to make over $5,000/month? Where? How? Sign me up! But wait… huh?? You think I actually have $5,000/month???

Yeah, I’m confused too. (The payout was good, but not that good: I got a sturdy, 10-yr-old car and a year’s worth of rent in a clean, dry cottage out of it.)

That $160 is what allows me to keep my pain-cream-making gear & off-season clothes in storage *and* pay for my writing course at the 50% discount I negotiated with the teacher (I’m doing that course instead of buying books & music for a few months.) I’m not sure any of that counts as extra these days.

They said this would be (future conditional tense) reflected in my pay as of December 2019 (whaaaaat???)…

Either they’re as confused as the rest of us, they’re in even harder denial about which year this is, or they’re setting up to make the pay cut retroactive in case they decide that that’s in their best interests. Also, Social Security being who they are and the current US administration being who they are, this feels like the first move against our lifeline, not the only move.

… I’m sitting here speechless again. Happens every time I think about it.

This is on top of the brutal horrors of approaching winter (relentless agony, burning brain, incapacitating fog), no bathtub (CRPS’s disruptive surface effects creep up my legs and over my back and make my shoulders, hips, and right arm into bloated purple sausages wrapped in electrified barbed wire, with no way to push back), encroaching mold (which multiplies everything, including mast-cell hyperreactivity/disabling allergies, heart dysrhythmias, gut problems, and it adds respiratory diseases to the mix), and gastroparesis so bad that every other day I have to do a big ol’ — you don’t want to know. Trust me. Even I can’t make it funny.

My psychotherapist is savvy, sweet, and has that merciless faith in her client that the best of them wield like surgeon’s tools (yes, this is relevant, hang on through the curve)… I fell apart completely in our virtual visit and whispered in stricken tones, “I don’t know if I’ll make it this time.”

After acknowledging the depth and legitimacy of my feelings and recognizing my prior successes against staggering odds (she does know her job!) she encouraged me to see the breadth of creative possibility embedded behind, “I don’t know.”

I blinked, because that sounded pretty darned merciless, even for a top-flight psychotherapist. (Keep in mind that surgeon’s tools include, not just scalpels and silk, but electric saws and the sprung barbs known, deceptively, as towel clips.) She wouldn’t give up, though.

I agreed to accept that as a working hypothesis.

On reflection, that thought began to feel more like pre-2019 Isy, before my heart got ripped out and stomped on a little too hard by a few too many, and my system fell apart so badly in the storm of it. It began to feel more like the Isy who, 13 years ago at the start of the Hell Years, looked around at the absolute rubble & blasted mess of everything I thought defined my life, and realized someone was still there doing the looking, so there was still an “I” and I wasn’t done yet. It felt more like the Isy who made the term “imp-possible” a regular category. I didn’t know where that would lead me, but…

I didn’t know how to finish that sentence yet.

This morning, while listening to an audiobook that’s a romantic comedy about overthinky nerds (still relevant; hang on through one more curve), I used the toilet successfully for the first time in months, without having to resort to the apparatus hanging nearby for the thing I’ve had to do that I won’t tell you about. (It involves soap & warm water, nothing too ghastly.)

I use audiobooks to keep my brain from overheating. It gives me just enough to focus on that I don’t drive my thoughts off a cliff, and it’s not so intrusive or demanding that I can’t do ordinary tasks at the same time.

This one had gotten to a part where the author discusses basic chaos theory: chaotic systems (and I defy any biologist to come up with a more chaotic system than a dysautonomic human body with longstanding central pain syndromes) … where was I? Right. Chaotic systems tend to get more and more chaotic until a sort of tipping-point is reached and they reorganize at a higher level of criticality.

What the heck does that actually mean, anyway?? What do they mean by a higher level of criticality?

Partly, it means that a lower level of energy is required to maintain that state of chaos, even though it’s still a higher level of chaos.

And that (I thought, as I looked up at the equipment I was going without at last) meant that I could do more coping with less effort.

Once you’ve prioritized your needs hard enough and developed your adaptations effectively enough, it gets a whole lot harder to throw you off your game.

I can work with that.

The next level of chaos is here. I have no idea how it’ll unfold. That said, I’ve already reorganized at a higher level of criticality.

I’ll meet it somehow. I don’t know how. I’m still here doing the looking, so I’m not done yet.

In honor & memory of Ruth Bader Ginsberg.

No wonder I can’t get up! Rad realities

Isy / January 20, 2020 / adaptation, CRPS knock-on effects, imp-possible, moving/traveling, neurogastroenterology, radiation, radical presence/radical acceptance, self-care

After the ghastly fiascos of last year, imagine my overwhelming relief to finally — FINALLY! — find a clean, safe place to live, in one of my favorite towns in the world.

The past weeks of unbudging exhaustion — starting from roughly the time everyone in the building got back from their holiday vacations — I put down to my body going into a “deep recovery” mode after the astonishing stresses it survived. I knew neighbors had wifi, as most adults do in this country, and noticed I felt better in the sunny side of my bedroom — behind an enormous brick wall, as the bedroom is an addition built onto a century-old, balloon-built brick building — so I’ve been spending a lot of time sitting there, letting all that earthing happen between me and the wifi signals.

Today, more or less out of the blue, two or three neurons fizzed together and I realized there was something differently-familiar to this feeling of having had all the air let out of my tires and my batteries totally drained. There was a knot of yuk behind my xyphoid — right about where the vagal nerve comes through the diaphragm and shakes hands with the stomach on its way past — which has rarely gone away.

Following these clues — my neighbors getting back, the bitter exhaustion, the yuk behind my xyphoid — I pulled out my elderly-but-spry laptop and asked it about the wifi signals it can see.

Here is what it sees in the living room:

Here is what it sees in the bedroom, behind the double layer of brick wall with a door in the middle:

That one bar of difference is definitely palpable, to me. Also, I know that one of my near neighbors has turned off their wifi right now (bless them!) because there’s sometimes another network on this list which has all 5 bars when it shows at all; it chases me right out of the living room because I can feel it like an incoming missile to my gut.

This exercise simply goes to prove my longtime suspicion that, indeed, wifi is the Un-Healer for me. I can’t get off the couch for long, simply because I’m being soaked in it all the time.

Give me a moment to get myself together, please. This is tough.

Detail of a Bosch painting. Whiskery demon holding and reaching for a misereable man. — Bosch knew.

It could be worse. I could be unsafe, breathing mold, AND being soaked in wifi.

Solutions

First, a key term:

Faraday cages are structures that use particle absorption, grounding, or deflection to create a radiation-free space inside. I’d expect to incorporate all three elements, for a more durable and predictable kind of protection.

Grounding

There are some low-tech, lower-cost things to try that can have the effect of minimizing my exposure to wifi signals:
– Grounded skin, that is, a grounding mat I keep my skin connected to, to carry away the signal before my body takes it up much. I haven’t had terrific results from these yet, but I may have gotten a bogus mat before. I’ll experiment with wire and foil before investing in anything better.

– Rad sinks (already in place), a mass of metal dense enough to act as its own ground — in my case, big heavy old-fashioned steel filing cabinets. I should really paint them thickly in matte black to get the best results (preventing signal-bounce), but it’s hard to think of a less useful work-setting for a colorist like me. I’ll keep thinking about it, though, because I’m pretty sure it could help.

After that, it gets a bit more iffy vs. more expensive.

Shielding

Make a Faraday-shielded pod I can pick up and move around, and sit in when I’m doing anything for long. Given the inexpensiveness and availability of pop-up structures, black felt yardage, and that shiny mylar stuff, I could cobble that together, probably with a zipped door and a couple of battery-powered computer fans. But dayum, would that be claustrophobic, gloomy, noisy, and a space-hogging eyesore! Also, it would render most furniture effectively unavailable for shielding time.

I’ve tried rad-blocking clothing. This poor challenged body needs a good few feet between my skin and shielding, or the feedback gets incredibly painful. Can you imagine that thing that microphones do with feedback, happening to your spine & everything connected to it? Yeah, that’d be cute by comparison to the experience of me wearing rad-blocking clothing for 5 minutes. So, rad-blocking clothing is not an option for me.

– Creating a shielded-fabric blockade around my bed, looking rather like a mosquito net but costing the equivalent in silver netting, which it often is. Silver is an excellent conductor. If properly grounded (always a consideration for a Faraday cage you want to use for more than an hour!) this can, at least, create a low-rad place to sleep that still has air flow — and room for the cat. It’s not the total radiation seal that a proper Faraday cage should be, but it’s a compromise that works well for many people. I can certainly tell if it needs to be better sealed for my purposes; boy howdy, is that clear to me now!

Shielding & grounding my whole space

Then there’s the costly, smelly-toxic, protracted option of having a minimum of 2 good coats of rad-blocking paint (at ~$200/quart, I’m guessing a total of 5 or 6 gallons for these high ceilings, plus the ghastly oil-based primer required), securely wired into the building ground at appropriate points by an electrician ($1k), with adequate layers of 3M UV-filter film ($?) cut to fit every single window ($hundreds for labor, because I can’t do that), the sashes of which will also have to be painted or filmed over… And do something to cover the gorgeous old maplewood floors to block rad bounce from the basement. That, given my abiding love and admiration of maple in every form, would be absolutely criminal.

So, that’s not going to happen.

Or, of course, there’s the prospect of moving again, to which my internal response is way out of the decibel range that blogs can carry. I have JUST gotten my hotwired system to stop leaping awake every hour or two, convinced I have to pack and move again. I really need not to move for a good while.

This is a great place in so many ways, and I really like being here right now. I aim to make it work.

I project that my solution, whatever it is, will be a compromise, like this home — so much going for it, but still missing crucial elements. I’ll have to come up with something that will protect me enough to heal while I’m here, since that’s the point.

First steps

I think the first thing to do is shield the bed. Like I said, not perfect, but it should improve my overnight recovery-time. The means to do that is readily available and I already know the better makers and materials-technology. I could probably get that up in a week.

After that, I’m thinking portable pod, big enough for a chair inside with a little writing desk. Might rig up a window or viewing port, using something reflective but not too dark.

Any engineers want to come play with these ideas and problem-solve here? 🙂

A 3-point reality check in the armpit of winter

Isy / January 6, 2020January 6, 2020 / ANS and fight-or-flight, brain care, CRPS knock-on effects, imp-possible, mortality, moving/traveling, radical presence/radical acceptance, self-care, tools and techniques

I’ve got a sweet, safe little spot all to myself now. I can’t talk about it much but the gratitude and relief is STUPENDOUS. It took over a month to begin to come home to the fact that I get to come home now.

Last week, I didn’t spend much time upright. Months of overdrafts on my body’s account were called in: colossal spoon-deficit.

If I’d had the energy to feel much, I would have been alarmed. I just couldn’t. I couldn’t anything: think, choose, feel, read, watch, be.

Just drifted through the hours, mostly lying down, listening to audiobooks I’d read (or had read to me; thanks, Mom!) at least a dozen times before. Drifting in and out of the stories. Falling asleep early, waking late. Weird, spacey surges of energy got the kitchen cleaned a couple of times, and enough whole food cooked (can’t afford premade) to keep me fed for another 2 or 3 days.

The laundry pile and state of the floors don’t bear thinking about. I’ve started cleaning the floor, one square yard at a time, and so far that’s one square yard. Yay!

Last week, I was incredibly seduced by the idea of giving up the considerable ongoing effort of living. Oh, the peace, the comfort, the over-ness…

Eventually, I made an agreement with myself to simply wait until summer. That’s all. Anything else I did would be pure bonus. Even knowing I’ve got dreadfully important things to do, I had to be ready to put them aside to get this internal agreement to work.

Reasons

Of course, part of this is the wacky human version of hibernation, an unsatisfying slowdown without the restfulness or calm feelings that make it pleasant.

Cold dark winters are brutal. I never stop thinking about 2 things: deep warm baths and warm places to go in the winter. There’s no tub here and I’m not doing any more packing for awhile, though.

Compounded by longtime central pain, dysautonomia now with heart effects, bereavement, and recent protracted survival-stress, it’s really no darned wonder that letting this ride stop appealed to me!

I made promises which I take seriously, and there’s no question of my hurting myself. That’s just not going to happen.

I only wanted so badly to stop pushing back all the time, stop doing the relentless self-disciplines around every life activity — eating, sleeping, moving around, taking care of self and pet and home, making it to all those appointments, staying on top of my tasks, tracking the endless cyclogram* of signs & symptoms & exposures & feelings & barometric changes & solar weather & functional levels… you get the picture.

What chores await

I want the business from my failed homing efforts cleaned up and moved on as soon as possible, so I can stop paying rent on a useless space. Going back to it is a desperately nauseating thought. The place nearly killed me, I realize in retrospect.

At least one of my friends realized that at the time. Sigh.

Line drawing of woman flat on floor, with woozles coming out of her head — Image mine. Creative Commons share-alike attribution license, credit livinganyway.com.

I’m used to pushing past feelings, of course — “CRPS R US!” — but this stage of illness makes an issue out of being too dizzy or vomity to drive safely. (The vomiting is really intense and leaves me no control of my arms and legs… or anything, actually.)

I toy with the idea of a tree falling on the thing hard enough to trigger an insurance writeoff… happy thought! Well, actually, I’m not fussy; anything that totals it and doesn’t harm anyone would be fine with me.

Dreaming is free. Meanwhile, I’m working on healing as hard as I can. This is one of several weighty and important things to manage, and I know a few of you know how much that’s like trying to run with no legs.

But I’m getting better

This morning, I could actually taste the raw sugar in my tea. That’s kind of amazing. I didn’t realize I’d simply stopped being able to taste sweetness. It’s these little things that give me some rational hope.

This first day that I’ve been well enough to get out, I loaded up on blue fruit and low-FODMAP carbs.

Hubris, meet Reality-check

I’m sitting down to give these palpitations a chance to calm down before heading home. If I’m up to it, I’ll get some digestible protein; if not, I’ll go home and get back to horizontal.

Something about that statement seemed odd. H’mmm…

I know what to do when a statement seems odd: do a simple 3-step reality check!

Isy’s 3-step reality check**:
1. Review what I just said.
2. Take a moment to notice the totality of how my body feels, right now.
3. Think back over past 24 hours and look for other symptoms.

That took 5 seconds for the first 2 steps and another 6 for the third. It gets very efficient with practice.

I said to myself, “Self… Palpitations and breathlessness now, and seeing spots last night & this morning? You’re going home to lie the heck down, pal! No argument!” (The spots relate to blood flow, in my case, so heart symptoms have been acting up in a non-chest way.)

Can’t argue with that.

…Well, I could, but it’d be wilfully stupid and I disapprove of wilful stupidity — not just in politicians, but also in myself. So I’d better get stable enough to drive and then go home and lie down.

1 hr later…
I did.

Footnotes
*A cyclogram is a way of charting multiple changing elements in a single system, using a circular graph. It can be useful for seeing overlaps, backtracks, correlations, and other patterns among the different elements. Whether it’s better than an oblong line-graph is a matter of taste, but I find the sense of spinning-ness very apt here!

**Step 1 keeps me on track. I had two professions where everything depended on my getting things right, but I’m not perfect (despite best efforts!) so I got into the habit, very early on, of mental review and double-checking myself.
Step 2 is nearly magical in its effect. I stole it from the stress- and uncontrolled-pain-management skillset. It’s key to getting on top of any mind-clouding moment. Try it out, it’s magnificent!
Noticing the body response is a tremendously powerful step to getting back in charge. Once we can notice the physical self in an overcharged state, we can learn to steer it to a better physical state — breathe better, stand or sit better, lift the neck, release the shoulders — and wow! Suddenly it’s not about being so overwhelmed, it’s about a single moment (in a whole life) which we’re managing and moving more gracefully through. Great tool. Gets better and better with practice.
Step 3 I add for health issues, because chronic conditions need more context so we can figure out what’s going on. I started doing that for patients 30 years ago, so there’s a special rolodex in my brain for recent symptoms. When that rolodex went missing during the Hell Years, I noted symptoms & signs in my journal, which lived by my berth on the boat, always in reach. Over time (time which was passing anyway) that ability gradually got rebuilt.
Tracking matters. It really matters.

Angel wings & tactical things

Isy / November 19, 2019January 6, 2020 / ANS and fight-or-flight, basics, brain care, brain plasticity, bugging out, CRPS knock-on effects, home-hunt, mortality, nutrition, perspective, radical presence/radical acceptance, recipes, reiki/meditation, self-care, tools and techniques, what works

This morning, I woke up feeling like a butcher knife was lodged in my heart, the memory of barking and snarling voices ringing in my ears. No surprise there; it’s to be expected.

My first coherent thought was, “This needs to be better.” I think that about a lot of things, but this one is mine to deal with.

I pulled one of my tools out of my mental toolkit, and flicked my eyes from ceiling to floor, ceiling to floor. (I’m a side-sleeper.) When I felt an urge to close my eyes, I did. When I opened them again, the butcher knife had shrunk to the size of a stiletto, maybe a medium-sized knitting-needle.

This magic technique is one way of using “bilateral stimulation.” Bilateral stimulation is a way of using neuro-anatomy to manage neuro-chemistry, using your brain signals to heal your mind. There’s loads of material on it in the field of trauma psychology.

Basically, the way our brain processes “sidedness” (the fact that we have a left, a right, a front, and a back) is even deeper than the way it processes strong, primitive emotions, like fight-or-flight-or-freeze. Those emotions tend to disrupt the brain’s normal processing of memory, thought, and decision-making, which can be useful when mastodons are stomping over your village — what you need to do is move faster than you’ve ever done in your life, and not camp on their migratory route in the future.

Most decisions we have to make are not on that order. Even when we live with a brain that keeps wanting to go there, it’s still rarely useful. So, it’s wise to have a few tools that can keep it in check when it’s working “after hours”, so to speak.

One way to do that, which works for most ordinary stressors, is meditation. It gives me practice in creating a still space inside, where I can survey my surroundings, assess things, and choose the best way forward, from this non-triggered space. The “success” of individual meditation sessions is irrelevant to this skill, because it comes naturally as a result of persistently going back to meditation and working on it over and over. Like with many things regarding central nervous system care, persistence is key.

When my skills are toppled over by what goes on around me (cf. my last post! A perfect example of losing it and coming back again), these other tools come out of my “bag of tricks.”

Glancing from one side to another is easy, portable, and requires only some vision and muscular control of your eyes. Pick a spot about 45-60 degrees ahead of you on your left, and a corresponding spot on your right. Flick your glance from one to the other, and back again, not too fast, not too slow. The right speed varies from person to person and time to time. Feel out the point where your system naturally drops to a median, attentive level. It doesn’t feel dramatic or unnatural; I experience it as a sort of a natural pause, as if it’s waiting calmly for something reasonable. Getting someone properly trained in EMDR to teach you what this feels like is really helpful, but you might be able to find it yourself.

There’s a bit more to it: real EMDR training starts with finding, and programming into that deep layer, a “safe place” to go to in your mind; establishing a certain connection with what some call “your wise self”, so you can re-assess your situation and re-evaluate your responses without the triggering; and learning what happens to you, in particular, during the process, so you can self-treat with fewer problems and more success.

Other techniques of bilateral stimulation include the “butterfly hug.” Cross your arms so your hands rest on your opposite collarbones, and tap one side, then the other side. This feels very comforting. It’s not my go-to, because the nerves going through my elbows don’t like bending up that much.

Thigh tapping is widely taught in disaster- and war-related trauma recovery. It can be done sitting, standing, or lying down. Simply tap your legs, first one side, then the other, with the hand on that side. Left hand left leg, Right hhand right leg, back adn forth. The signal demands attention from the brain, which pulls itelf off of panic duty and gets back to processing information and sorting memories in a healthier way.

My physical therapist recently taught me the cross-body crawl. I can do this standing, sitting, or lying down on my back. Reach over with one hand and bring up the opposite knee, then switch sides, back and forth.

This does several things: it provides bilateral stimulation, which calms the panicky system down. It tones the core muscles, especially done while walking! It reminds the brain where the limbs are, which is kind of a huge deal with CRPS, which tends to muddle our brain’s map of our bodies. The cross-body crawl tops my current list of things I wish I wouldn’t do in public, because people look at me funny, but I’m going to do it anyway, because it’s so helpful to me.

I’m also able to focus on nutrition, physically the biggest player in the healing game. I made a green soup last night — Not Chik’n brand bouillon with all the green things I could find in the store that weren’t cabbage relatives (because they push down on my thyroid), and yesterday that was parsley, leeks, mature spinach, celery, and dandelion greens, plus carrots to smooth it all out. I cooked the rather harsh-smelling leeks in butter until the smell sweetened, then dumped everything but the spinach in and simmered for awhile, letting the minerals leach out into the broth. Then I cooked the spinach on top more briefly (so it wouldn’t get bitter) and threw it all in the blender.

As my friend said, “It’s like a chlorophyll bath.”

Meanwhile, as long as I persist in my meditative practice, the work on finding a home charges ahead. It’s a lasting puzzle to the linear part of my mind why an hour spent on meditation makes the other 3-4 functional hours I can squeeze out of the day ten times more effective. I’m gaspingly glad that it does, because it’s a heck of a job to find a safe place for this body.

This cascade of events has carved into my very bones the understanding that it’s meditation that will save me in the end. It’s the axis of my mundi, strange as that may seem to those who’ve witnessed any of my eventful life.

I feel the wings of angels stirring my hair now, and I can’t worry, only take the leap and trust that I’ll fly, rather than fall.

Protected: A departure & a public apology

Isy / November 12, 2019November 20, 2019 / ANS and fight-or-flight, basics, bugging out, CRPS knock-on effects, loved ones, martial & internal arts, perspective, radical presence/radical acceptance, reiki/meditation, self-care