Living anyway

I was holding off on blogging consistently until my brain was more consistently reliable — until I had enough improvement in my mental faculties. Reason intervened, and it got through the concrete that, longstanding CRPS being what it is, that could be a very long wait. Those of you looking for solid whacks of brilliance or coherence or good judgment, consider yourselves warned. This is real life, and, whatever is left of it, it’s time to live it anyway.
Snowy lawn, apple tree, row of pines behind apple tree, snowy road visible between trees, silvery cloudy sky above trees.
And, with that said, 2015 is left in the dust.

Waiting for perfection is obviously absurd. Anything with a pulse is still imperfect. Waiting for “enough improvement” is the mental sucker-punch that hides in perfection’s shadow. It cajoles me by not being perfect, but … define “enough improvement.” — See what I mean? Mental sucker-punch!

My tea, like me, is a work in progress at the moment. I sit here letting it steep, with my patches of exposed skin singing “zippity do dah!” every time something touches them, the silver and white day rising gently through my window, my insides solidly blocking the thought of food or pills for the foreseeable future (we’ll have to negotiate that later), J coming over to hug me against his side and give a pleased giggle that we’re reallly here and really together and we made it this far, and I find a perfect moment in it.

Living anyway. That’s the point. Well done, Isy.

Happy New Year.
May your hardships be balanced by your blessings.
May your love drown your pain.
For the many of us who live unbearable lives, may you have all the courage and wit and calm to bear it and find your moments of freedom.
Whatever you’ve got to live with, live anyway, and find the peace and joy there is even in the event horizon.
My heart is with you.

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To fail myself is to fail others, and doesn’t that suck!

My desk setup is nonexistent and much of it still buried in unpacking. I wish I’d been writing some of the wonderful blog ideas that have passed through, but I didn’t. Rather than trying to reconstruct them from addled hindsight, I’ll just go on as if I had a whole nest of posts to plop this one into, and go on from here.

As my desk situation indicates, I still feel perched, rather than settled. I’m going to have to find a rental in the spring and then start looking for a miraculously good deal on a house to buy after that, so it’s hard to unpack all the way.

Moreover, California is still extending opportunistic tendrils into our wallets, task lists, and attention.

And then there are the periodic health crises: a bit of allergy exposure here, a bit of partner’s chest pain there, a sprained wrist from me overdoing, a sprained back from him overdoing… you know. Stuff.

Oh, and the holidays, with a trip and gifties to prepare, mostly for people I haven’t seen for over a decade… no pressure.

These aren’t excuses, they’re reasons. I don’t really believe in excuses; it’s largely an irrelevant concept. It’s for an injured party to decide if I’m excused, not me, so “offering an excuse” just doesn’t make sense. I have reasons, but so does everyone.

Here’s the thing I feel a need to mention my reasons for:

I’ve let my self-disciplines go. T’ai chi, qigong, meditation, reiki, relaxation exercises, stretching, even listening to chamber music — I think about them, but I don’t do them. I still have my morning routine, or at least half of it… if that… OK, yeah, my self-disciplines are pretty much out the window.

Like medication, meditation only works if you use it.

After weeks, actually months, of coping and managing with (and concealing, because that’s what chronically ill people do) my rising instability and neural chaos, I’ve finally started skidding off the cliff.

As for the effect… I’m trying to come up with a good image.

Imagine a patch of sea. I’m in a well-rigged little sailboat, noodling along in a fair wind.
view forward from deck of sailboat. Mainsail on right, jib on left, Marin headlands and Golden Gate visible between.
The oil of willpower is constantly sprinkled on the water’s surface, keeping it smooth and flat, easy to sail along on.

Underneath, the weedy patches pluck at the propeller and keel, the barnacles grow restive and start plucking back, the creatures swimming underneath get bigger and more voracious, and then they get big enough to break the surface now and then.

More oil! Keep sailing!

Those surface-breaking tiddlers get chased off by the real mondo beasts. The boat is getting sprayed by the monsters breeching.

Everything’s fine, I’m too busy to pay attention, la la la la la I’m not listening!

Also, the wind is acting up. The boom is starting to swing across at head-height.

Just a little farther now! More oil! /BOOM/ It’s OK, I’m fine, just a flesh wound!

Unbeknownst to me (since I’ve got the radio turned off, because I’m not listening), there was a string of earthquakes.

Since Banda Aceh and the meltdown at Fukijima, we’ve all learned about how earhquakes make waves. The shock of the quake trundles happily along the ocean floor until the ocean floor rises towards the shore. Then it sucks the landward water into itself and brings it all back as a tsunami.
water_tsunamiformation
If you’re afloat and listening, you move out to deep water, sail over the bump without losing stability, and you’re fine. If not… cue exciting sound track and hire George Clooney for the (possibly race- and gender-inappropriate) lead in another disaster movie.

There was a wave and I wasn’t in deep water. I didn’t handle it well; I was dysregulated and chaotic for days. Days. I was so dysregulated and chaotic I didn’t even see that that’s what I was, until it was pointed out to me — by the person who’d just gotten butt-kicked by an earthquake. That is not a fair burden to put on someone who’s already having trouble.

I have a personal meme about being good to friends. This is important for us spoonies (as chronically ill people sometimes call themselves.) My disease treats me like crap, but that isn’t a license for me to treat others like crap.

People who are protected from the true impact of this illness need to not get it at close range, or they run away (understandably) feeling as if they just got burned.

People who have this illness can understand a lot more, but are able to do much less.

I have to communicate appropriately. That’s my job in each relationship.

Basically, humans are emotionally fragile creatures and — whether I want to be judgmental about it or not — I can either respect that, keep the worst of my crap to myself, and have good relationships; or I can expect them to be as tough as me and to do so on my schedule, neglecting that they have to be as tough as themselves on their own schedule, and wind up isolated. Because I’m human too, I’m emotionally fragile enough that being isolated sucks.

I absolutely dropped my backlog of frustration and pain and rage on someone who was about the last to ever deserve it. That’s quite a breach of trust.

I stopped taking care of myself. As a result, I fkdup and hurt someone else. Now I have to own up (did that), figure it out (working on it), and do what needs to be done (re-integrate my practices) to prevent it ever happening again (and find a way to cue myself before I get bad: the missing piece.)

At that point, I’m allowed to make amends. It’s another tweak of my logic that I can’t make amends until I’m sure I won’t make the same mistake.

Being a spoonie is hard work. Part of that work is these time-intensive disciplines that seem like “oh how nice, you’re so cool, I wish I could do that” — but, as it turns out, are really not optional if I want to function.
Allie Brosch cartoon,
Why I need to do my disciplines: to stay out of this pit with Allie.

BTW, do you notice how people excuse themselves by saying, “I wish I could do that”? I listen for these words coming out of my own mouth. It’s a sure flag that I’m throwing the baby out with the bathwater. Oh, a little extra effort up front to save a whole lot of trouble later on? H’mmm…

We all screw up at times. The consequences for spoonies can be life-threatening, if the wrong relationship gets ruined. Handling these issues is part of “living anyway” in the face of profound disease. It’s harder to figure out and harder to repair the damage, because of the nature of central nervous system diseases. So, dear reader, I’ll try to stay on the right side of the line between washing dirty laundry and discussing a common issue here.

We often tell each other, “You can’t take care of others if you don’t take care of yourself.” That’s a tough one for caregiver personalities; we’d much rather take care of others than ourselves. However, it was through failing to take care of myself that I actively hurt another. That is a whole different octave of problem. I guess I’d better learn this lesson.

This is a lot of thinking for a breached boat. I can do it, though. I must. I’m still a long way from harbor.
boatsSBMarina_night

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First, keep breathing

I say that a lot.

The first thing our bodies do when we get a burst of pain or other shock is, clench. Hard to breathe effectively when clenched and, oddly, it’s hard to do anything else — except let the anxiety-mad sympathetic nervous system run riot.

For normal people, the exercise I’m about to describe is a calming exercise, but for the chronically ill and chronically hurting, it’s more like an elementary coping exercise.

That feeling of being frozen? It’s shock. It’s normal to go there, but don’t dwell in it.

Ways to help yourself through it are largely little physical shifts that send a message back up to your brain that it’s time to process now.

Notice where your shoulders are. Just notice. Notice how your neck feels. No judgment or “I should”s, just notice. Notice how you’re sitting or standing. Notice how your hips are rotated in relation to your posture. Just observe these things.

Now exhale all the way. Not to the point of straining or coughing, just comfortably emptied out. Let your lungs spring open naturally and — this is key — open your teeth as you inhale.

Now, when you breathe out, purse your lips softly, as if puffing out a match. That does two things: keeps your jaw unlocked and nudges a little extra oxygen into your lungs.

When you breathe in, after that first open-mouth inhale, breathe in through your nostrils if you can. If you can’t, put your tongue tip on the roof of your mouth and breathe around your tongue. Either way, it opens the back of your throat slightly so you can…

Imagine the breath sliding down your spine and into the bowl of your pelvis. This helps your body do an end-run around the clenched-torso breathing we get into when we freeze. Just let the good air wash into your spine and slosh into the bowl of your pelvis.

Then let it out through gently pursed lips, and in through opened throat, then down, and back out, and so on.

Do ten cycles. It’ll be a different and better world after. Notice how your shoulders and neck soften, and your hips unwind. Colors are a little brighter. Feelings are closer, but less overwhelming.

You can do this. I have faith in you. You are life warriors and we handle it. It’s our gift to be this strong and still be this alive.

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Oh look! I’ve adapted!

I used to be punctual, meaning, 3-10 minutes early. I used to be relentlessly diligent. I used to be cast-iron reliable. (I worked hard to acquire those skills, after drifting through my first couple of decades with my energy and attention set to “simmer.”)

These were so much a part of my identity that, after a memorable lunch with 12 engineers and one writer (me), they passed me the bill to calculate. I didn’t know whether to laugh or cry, but I scolded them and passed it back. CRPS had already set in and numbers tended to cartwheel in front of my eyes, but I didn’t tell them that.

My care providers know they have to call me to confirm the day before an appointment, because even with the calendar in my phone and on the wall, and now with a weekly dry-erase scheduler on the fridge, I need the added sensory input to make sure the other 3 are correct and, above all, to give my brain one more hook to the info.

Reliable, remember? I’ve still got a lot of identity tied up in being reliable, and it takes a LOT more work, but it’s important enough to me to do, and ask for a little practical assistance with.

Today, I looked at the clock when I woke up and thought, “Hour and a half to appointment time. OK.”

As I set up my tea, I thought, “I’ll let J sleep. He’d only have half an hour to get ready and I don’t want to spoil his morning.”

As I washed and dressed, I thought, “Excellent, time to read a little while I have my tea, fruit and morning pillage.” Can’t just call them pills. Definitely pillage. I hope to lay waste to CRPS as it tries to lay waste to me, so that could go either way.

En route to my appointment, I found a whopping case of vehicular atherosclerosis — a traffic jam, in a country stretch of highway. Very odd. The clock read 9:50, and I realized I was going to be late gor my appointment.

Diligently, I picked up my phone and made an illegal call to notify Dr. Resneck that I’d be late.

She said, in slightly worried tones, “But… your appointment isn’t until 11.”

Not missing a beat, I said, “Excellent! I’ll pull over and read for an hour. That’ll be nice!”

In response to the still-shocky silence, I added, “Well, an hour early is better than an hour late, isn’t it! See you soon!” And hung up.

I realized that my brain had simply done an ER-worthy triage — is anyone hurt? Anything made worse? No? Fine! — and moved straight on to a good Plan B. I’m reading Jodi Taylor, and St Mary’s is about to be incinerated and I’m dying to know what happens. And yes, I’ve read it before, though not for awhile.

If I were a clinician caring for me, I’d note this incident down and give a worried little sigh. It’s not good, just not very good.

But I have learned, in this brutal school of my life with this ratfink stinker of a disease, that I CAN’T WORRY ABOUT THESE THINGS. From the standpoint of the person doing this, I am really pleased with my handling of it.

Anyone hurt? Anything worse because of my mistake? No? Fine! Now let’s advance some other agenda I’ve got! Because as long as the first two questions come up negative, IT’S OKAY. I am not a failure, oddly enough. I’m just not. I get a free hour, and that’s pure bonus!

Off to read my book. Enjoy the rest of your day, and remember that blessings can come in heavy disguise.

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TV, inappropriate sensory stimulation, and when enough is enough

TV flickers at a rate guaranteed to put the higher cognitive functions to sleep. LINK It is literally, and specifically, hypnotic. Anyone surprised?

Some people like that, although I don’t. Some people need that, at least in some measure.

Every waking hour when you’re at home? There’s a problem there, even when you don’t share a house with someone with longstanding CRPS.

I learned to hear the words behind the words when I was an ER nurse. I had to be able to know the truth from the lies to the self, the lies to others, and the lies to the universe. I had to know when people didn’t care if they were lying or not.

Our brains can split the channels of verbal communication, so that the literal meaning of the words goes into our brains via one logical branch, the subtext and connotations of those words go into another, the emotional load the person is trying to convey goes into a branch that analyzes conscious manipulation, and the emotional load the speaker feels about what they’re saying — or if they’re even paying attention to it — goes in via a subtler branch. I learned to parse it quite specifically.

Some people thought I was reading their minds. I was just hearing their speech.

Now you know why, much as I loathe and despise the modern Democratic party, my outraged contempt for the modern GOP (and all its wacky little offshoots) is even greater. The sound of all those relentless, delusional lies is unbearable to me.

My mostly lovely partner, J, has TV again for the first time in a couple of years. Like the Scot that he isn’t, he wants to get the most out of his monthly investment — or that’s his excuse. In any case, he has perfected the most effortless way to get me out of the house: keep the TV on.

Every.
Waking.
Hour.

There are only so many times you can argue about the same thing before you realize you’re utterly screwed, and the most important person in your life is just going to torture you until something breaks.

No wonder I can’t get any work done. It’s too darn cold to be outside for long, so I have no choice but to have my brain beaten into a pulp day after day.

I can’t get the message through to him about what it does to me. He thinks I’m being dramatic or controlling, “because that’s how women are.” (Yeah. I know. Living with someone with CRPS is hard, and he uses the “woman” excuse to think about something besides the fact that this is such a hellacious disease. Moving right along…)

It’s not how *I* am. I’m a weird woman, I readily admit it, but I am not interested in interfering in someone else’s self-medication, as long as it does no harm to others.

That’s a major freaking caveat.

My ears have been ringing for days now. Early hearing loss runs in my father’s family, and the absolutely relentless natter of evasions, irresponsibility, bad acting and recreational conflict are doing significant damage to my hearing mechanisms, not to mention what’s left of my capacity for reason.

And J wonders why I’m getting more unhappy and short-tempered.

Dad protected his hearing and commented on his symptoms and how he treated them. He swore off music and TV for days when his ears started ringing. Moreover, as heads of the family, he and my mother limited TV time to two hours a day.

Lucky cuss.

When J and I leave this area, he thinks we’re going to live in a trailer or something as we wander around the country. While 90% of that is a fine idea (as long as I’m strong enough), we are definitely going to have to solve the TV problem. Personally, I’m preparing to “accidentally” drop something heavy on all the TVs in the vicinity, and apologetically give him a small laptop set that doesn’t even have speakers, just a headphone jack.

I think I could just about live with that.

P.S. It’s worth noting that, every time I write a post about J, I read it to him before posting. I don’t sneak around behind his back at all.

His comment halfway through: “Okay, I’m prepared to split this 50:50.”
His comment at the end: “Okay, I’m just off to go kill myself.”

I think it might have finally penetrated.

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Winter Recipe #1 – Cyano-berry brain booster, with special maple syrup notes

I view a recipe strictly as a starting point.

To some, recipes are instructions to be followed. That’s probably very wise.

To me, they’re a series of friendly suggestions, and every ingredient (except baking powder) has the unspoken caveat, “adjust, substitute, or mess with, to taste.”

The recipes I post are decidedly Isyan recipes. Even if I haven’t made them yet, I’ve made many similar things over the years, so I know they’re in the right ballpark. If you’d like to use them, please do — and realize that every ingredient here carries the implied caveat, “adjust, substitute, or mess with, to taste.”

With good ingredients, you can’t go too far wrong.
antioxidant_foods
When it comes to canning and preserving, I do what I do, but I suggest you follow the instructions you can read at any credible site on the subject. The USDA guide is here.

Cyano-berry Brain Booster

The point of this is to provide a stonking great dose of those anthocyanins and antioxidants which have consistently demonstrated that they help my memory and thinking. This is not desserty at all. I think it makes a great breakfast.

Ingredients:

  • 2.5-3 oz dried organic schizandra berries.
  • 1 Qt/Liter organic concord grape juice.
  • 1 small finger (~1-1.25 inch [~3cm] long piece) fresh ginger, or equivalent powder, to aid digestibility.
  • 2 Tablesp (rounded palmful) ground clove.
  • 1 Tablesp (scant palmful) ground cinnamon.
  • 3 Pounds/1.4 kg wild Boreal blueberries, wild (farmed) blueberries, organic currants, organic bilberries, or the most nutritionally dense, fresh or frozen dark-blue berry you can get your hands on.
  • 3/4-1 C (6-8 fl. oz., or 180ml-240 ml) non-osmosed maple syrup (see note below.)
  • 1/4 C (60 ml, or slightly overflowing palmful) ground chia seed.

Preparation:

Put the schizandra berries into the grape juice. Write the date on the bottle, along with the date 3 weeks on, and stick it in the fridge for 3 weeks. The rest of this waits until the schizandra berries are thoroughly steeped.

When you’re ready to make it all up within the next half day, then blend the berry/juice brewage until the schizandra seeds no longer sound like grit hitting the blades, but like very fine sand. Give it at least one minute. (I wear ear protection for that part, or leave the room.)

Grate the ginger fine.

Grind the chia seed in a spice or coffee grinder.

Rest if needed, then aim to finish the tasks below in one session.

Making and canning:

Put 6 quart bottles and new lids into a deep, lidded pan. Once they have boiled for the recommended length of time, you can turn off the heat and leave them there, good and hot and covered.

Combine the ingredients you’ve already prepared in a large pan. Add the spices and maple syrup. Mix everything well, so the spices are thoroughly incorporated. Add the maple syrup and blueberries. When it starts to simmer, turn the heat down to keep it simmering and stir the chia in, mixing well. I leave it loosely covered and let it cook for 5-10 min. I want to preserve the anthocyanins and the volatile spices, after all, not boil them to distortion and death.

Set the jars and lids up so it’s easy to transfer stuff from the pan. When you fill the jars, leave headroom — don’t fill into the neck. Try to keep anything off the lips of the jars.

Use your favorite clean absorbent material to wipe any dribbles or slurps off the lip of each jar. Each lip should be absolutely perfectly clean, with nothing to interfere with the seal you’re about to create.

Lid, band, and tighten each jar. Return them to the pan they boil in. Boil according to your canning instructions.

I actually boil them for about 5 minutes — this is just clean fruit, with preservative spices. I’ve had no problems, except for one batch that didn’t get the final boil because the fuel ran out. It got a bit fizzy after awhile, and wound up giving me half a quart of the best sparkling spiced-blueberry wine ever, plus half a quart of inedible spiced-blueberry sludge. Overall, a happy accident 🙂

Equipment notes:

I wash everything well, with hot water and soap, before I even boil it. They always put seizing of some sort on new bottles and pans. I can’t stand the taste, and I can’t say it’s likely to be good for me.

Ingredient notes:

Clove is a shockingly strong antioxidant and it helps reduce nerve pain. Having said that, it also has a very strong flavor. If you’re not extremely fond of it, that’s the first ingredient you’ll want to adjust. However, I love it, and I can eat this stuff day after day.

Schizandra berries are called, in Chinese, “Five-flavor berries.” They incorporate the flavors of sweet, sour, bitter, salty/savory, and the fifth flavor we don’t have a word for in English, but if you mix fresh-dug peat with barley malt and plum paste, you’re probably close. I happen to like them, but I’m notoriously odd — and internationalized. There’s no question that they’re amazingly good for the brain. Try them and see. I prefer them to goji berries by a long way, and a lot of people can choke gojis down.

Maple syrup is not what you might think these days. Traditionally, sap is collected from sugar maples during the first real warm spell in early Spring.
maple_syrup_tap
It’s then simmered down to syrup consistency, and the scent of it can drift for a mile downwind…

Most modern producers use reverse-osmosis filtration to reduce the volume of the maple sap, sucking the minerals and much of the flavor out of it, then boil the remainder just enough to say they did. The filters themselves are considered so toxic that they have to be sent to the landfill; all those wonderful minerals that get caked up on it are considered to be no longer fit for human consumption, and must not be used for anything that might possibly wind up in the food chain, according to a representative from one famous and otherwise delightful sugarhouse.

In the end, with reverse osmosis filtration, you get expensive brown sugar syrup, without the kick or the minerals of maple syrup. It all tastes much the same — like good brown sugar made into syrup. Traditional maple syrup, on the other hand, has “terroir”, just like wine. Its flavor varies from place to place, depending on the soil, water, bedrock, and microclimate. The Shelburne/Heath terroir has a refined floral foretaste that has to be tasted to be believed. Right over the ridge, in Ashland, the syrup has a deep earthy note like really great whisky. How awesome is that, eh?

The natural/organic syrup producers I wrote to are fine with the highly artificial process of reverse osmosis, as it saves fuel, which reduces their carbon footprint. Standard practice in that group seems to be to osmose the sap until it’s about a third or half the volume (“two passes”) and boil it down the rest of the way. They “feel” (this tells me that they didn’t get out the test tubes and check the nutritional changes) that they “retain the best of the flavor and nutrition of the syrup.” They really don’t — I can always tell when it’s been osmosed, and a few years ago I went taste-testing hundreds of miles through prime sugaring regions to be sure. I dropped a lot of money on tiny little sampler bottles just to make sure I was not imagining things.

The real test is this: the maple syrups I got from standard supermarkets, Trader Joe’s, and Costco made me hurt. The maple syrups I get from my producers who boil it all the way down does not make me hurt. So, as far as I’m concerned, reverse osmosis either puts something in that hurts me, or takes something out that stops the hurt — but, in either case, osmotic filtration hurts me, and I’m not going to pay money for that.

I use maple syrup in order to have a nutritious, painless and digestible sweetener, so I want the stuff that still has that nutrition and digestibility. It’s a bit pricier than the osmosed stuff, but a pain-free gallon lasts nearly a year in my tea and occasional grain-free pancakes, so it’s money well spent.

Buyer beware. Call and ask the producer if they use reverse-osmosis filtration, or if they boil the raw sap all the way down. I don’t recommend discussing it, just asking… New Englanders are not easily persuaded. They’re generally realistic and decent, though, so if the producer you call uses reverse osmosis, ask if they know someone who doesn’t. If they know someone, they’ll tell you. They might even get you their number.

I got my last good, fully-boiled-down batch from a friend of a friend: Jerry Smith at Deer Ridge Farm, 4057 Hinesburg Rd, Guilford, Vermont, (802) 254-3540.

View Larger Map
He’s on country time, so be ready to call and remind him to post your package if you don’t see it in a week.

Most of the fully-boiled producers do NOT seem to be part of industry groups (e.g., the Massachusetts Maple Producers Association, where I wasted a lot of time contacting members only to find that all those who bothered to return my messages used reverse osmosis.) They’re just farmers who happen to have sugar maples and some equipment, to keep themselves from getting bored during “mud month.” You have to be there to find them — or have good connections, like me 🙂 If any of you New Englanders or Canadians have other fully-boiled-down producers to recommend, please do — the more, the merrier, and it’s good to have fallbacks in a weather-sensitive and seasonal industry.

Note on posting: Priority Mail Flat Rate boxes are the cheapest way to ship heavy things like quarts or gallons of syrup in the U.S. If you need to use international mail, better figure out your best strategy for that ahead of time, since that isn’t in a rural U.S. farmer’s normal frame of reference. A quart of syrup weighs around 3lbs 2 oz (1.45 kg). A gallon weighs around 12 pounds (5.45 kg). These are not exact, as weight varies slightly from batch to batch. It is, after all, a handmade product.

Carriers who ship outside the U.S. include the United States Postal Service, DHL, Fedex and UPS.

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Autogenic training — calming the CNS in the nicest possible way

I have to fling this file up onto my site and write the supporting material later. I’m trying to do a lot on very little steam, so forgive my slapdash approach. There will be a readme to go with this next time. Believe it or not, there’s a reason for every single line 🙂

Anyway, this is the (probably) final draft of the first autogenic training script I’m writing for my charity, CRPS: Art & Spirit. It will be read in and turned into an mp3 in the fullness of time, which will also be available under the same Creative Commons license, so please do share.

Meantime, if I say it myself, just reading this is soothing to that frazzled ol’ autonomic system 🙂

Now, let’s see if I can load the whole pdf here… direct link to brain-soothing script

Indirect link to script:
autogenictraining-no1-ver1.2 — Click the link, then click the link again.

NOTE
I’m sorry to say there were some ghastly cut and paste errors in the version originally posted. I posted the corrected version on December 2nd, 2014. This one will flow a lot more smoothly.

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Treating CRPS enough to have a life

Someone asked a question on social media that led to my doing a brain-dump on the basic format of current treatment for CRPS. This will take on a more formal form, but right now, for quick reference, here it is.

Like many others, this person has narcotics as a primary form of pain control. Increasing the dose increases function, but past a certain point, is that a good idea?

And, more importantly, the biggest question was, what does it really take to be able to have a life again?

 

Common-sense note on narcotics

Firstly, it is GREAT to have something that works. I know plenty about narcotics from a physiological and neurological and even a gastrointestinal standpoint, so I know the arguments for and against — but, when all is said and done, it’s great to have the option and it’s great to have something that works for you.

Keep what works! Unless and until you really can replace it with something better. (Clinicians, in their overbearing way, can be pretty cold about this.)

In the end, if you need to increase the dose, then increase the dose, but given how our bodies adapt and the disease shifts over time, it might be good to keep higher narcotic doses in your back pocket for breakthrough pain and flares, and see about the other meds that treat nerve pain specifically, support (in some cases) your neurology so you can function better and be more stable, and leave some slack in your body’s narcotics “budget” for other times.

Doctors should be able to support the idea that you should be able to have a life, and happy to help you figure it out. Good pain specialists have this as a specific goal which they try to help us reach as much as possible for as long as possible.

Read tamingthebeast.ca or elsewhere on this blog for loads of tips on nutrition, homeopathics, herbs, and other at-home strategies. This is just about the stuff your doc can do for you.

I mentally break these into 6 categories, 3 of oral meds and 3 of other, more interventional stuff:

MEDS

  • Neurochemical support: Mostly antidepressant-category meds, from tricyclics to SSRIs to SNRIs. SNRIs have the significant bonus of potentially stabilizing a faulty ANS.
  • Transmission shifters: Mostly anti-seizure meds, Lyrica and Neurontin. Ketamine certainly shifts nerve signal transmission, and the protocols for giving it are getting better and more specific. Technically it’s an NMDA receptor antagonist, but it affects opiate and MAO receptors too.
  • Calcium “wranglers”: Calcium channel blockers, bisphosphonates.

Basic principles of medication

  • Remember, all meds have side effects. There is no free ride; sorry!
  • Most of our meds can affect judgment, memory, and perception. Ask a relative, housemate or friend to check your brainpower and personality, to see if there are effects you’re not aware of.
  • Avoid polypharmacy, or too many meds, because it’s a great way to create a neurochemical mess. I stop at 3 different ongoing meds, since I can’t tell what’s causing problems if I take more. I also have 3 as-needed meds, which I rarely use, unless the side-effects of the pain/nausea/wheezing are worse than the side-effects of the meds.
  • Last but not least, med is spelled M.E.D. which means Minimum Effective Dose. Both adjectives are equally important. It must be effective, or why are you taking it? It must be the smallest dose that really works well, because otherwise you’re dealing with the same issues mentioned in the previous points, and they get a lot worse with overmedication.

Keep in communication with your doctors about your meds. If they’re savvy, they’ll work with you to optimize your medication profile for best functioning with fewest problems.

INTERVENTIONS

  • Injections and implants: spinal root blocks, prolotherapy, spinal cord stimulators, botox injections, spinal baclofen infusions, implanted drug dispensers.
  • Zaps and rads: TENS (electric counter-stim blocks the nerve pain), TCM (electro-magnetically stimulates and remaps certain parts of our brain that support the disease), Calmare (a more complex electrical technology that retrains the pain signal so it eventually doesn’t restart.)
  • Retraining, rebraining: Multi-Disciplinary Functional Restoration/Rehab is the gold standard for treatment. Most of these programs, but not all, require participants to be narcotic-free. The puritanism I can do without, frankly, but the whole-person approach, and the enormous mental toolkit you come away with, is absolutely life-changing.PT, OT, counseling, and learning about relevant subjects from pain mechanisms to nutritional effects on pain and function to communicating effectively with those around you so everyone can do more with less effort, is simply tremendous. It used to be a shoo-in for US citizens because it got people back to work so effectively, but in the industry overall it’s more profitable to keep us sick, so now it’s harder (but still possible) to get that paid for.You have to have determination and some mental flexibility to get admitted into a program, because it’s hard work, but if you find a program that agrees with you, then it could be the single biggest change in your life.

Every time something goes under your skin, your body has a shocky/inflammatory response. It may not be noticeable, but if it is, be ready to manage it.

If you get an invasive procedure, like implants or injections, then use one of the vitamin C protocols to help ward off flares and exacerbations: 500 mg 2 to 3 times daily, for 1 to 2 weeks before the procedure and 2 to 3 months afterwards.

Now what?

Talk over these different options with your doctor, if you haven’t already — increasing your current meds, using supplemental med support, trying technologies and interventions, risks and benefits.

Also, sadly, it’s important to discuss the realities of funding and insurance coverage, so that you can develop contingency plans to follow in case your hoped-for option doesn’t get approved right away.

Always leave yourself a way forward — that’s a good strategy 🙂

There is a lot that can be done, and most of us cobble together a few different things that work a bit so that, together, they add up to enough to let us … have a life 🙂

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Acute pain, chronic brain, and naming this ratfink disease

Complex Regional Pain Syndrome is the latest in a long line of names for this disease. Some of the older names have been recast to cover aspects of it, or versions of it, or special cases, and of course there are overpaid people who argue about it intensely. I’m going to go out on a limb and list a few sometime-names, sorta-names, and related-names to go on with:

  • Complex Regional Pain Syndrome
    Until recently, there were two subtypes: Type 1 had no visible nerve damage, Type 2 did. However, with chronic CRPS, there is extensive and pervasive nerve damage, and it makes no difference in treatment after the acute stage, so this subtyping is widely considered irrelevant.
  • Sudeck’s atrophy
    No longer used; atrophy of bone and muscle is really symptomatic, and not always present.
  • Causalgia
    No longer used, except as an old name for CRPS type 2.
  • Reflex Sympathetic Dystrophy
    Used by old-timers and sometimes for CRPS type 1, although CRPS-1 is not necessarily maintained by the sympathetic nervous system.
  • Algodystrophy
    More often used in Europe; also, neuroalgodystrophy. Problematic because it implies that this is the result of autosuggestion. I know I could not have made this up in a million years; moreover, extensive analyses of the literature show that there is simply no truth to that.
  • Neurodystrophy
    More often used in Europe. It’s a perfectly good name, but not the one that the IISP paid a bunch of specialists to come up with)
  • Reflex neurovascular dystrophy
    RND; no longer used, because it only addresses vascular changes, not neurology or systemic issues.
  • Shoulder-hand syndrome
    No longer used, except to refer to upper-body chronic neuropathic pain while dodging a CRPS diagnosis.
  • Peripheral trophoneurosis
    Good one, eh? No longer used, both because it may spread out of the periphery, and it’s not about neurosis. See “algodystrophy” above.

For more on comparative naming and different nations’ approaches over the years, check out the RSD Canada site.

A certain amount of acute CRPS does clear up (or go into remission) before it’s even diagnosed. Since it can take years to get diagnosed, there’s not a good way of figuring out what those numbers might be. Even after diagnosis, acute CRPS can go into full remission and never show up again, before it becomes the ground-in form of trouble I call chronic CRPS.

In its chronic form, CRPS is a disease of dysregulation — of everything being thrown off balance. Our efforts to push back against any given part of that are quite likely to throw our systems off balance in some other way.

The body doesn’t balance simply, like a seesaw; it dances in 4-D homeostasis, which I’ve explained here. It’s a bit more like this:
Trapeze_artists_trimmed
Now imagine pushing one of those trapeze bars the wrong way.

Adjustments need to be carefully incremental in order not to distort the system further, but often need to be done quickly because the situation is so horrible to be in.

It’s a conundrum.
Sketch of brain, with bits falling off and popping out, and a bandaid over the worst
Personally, I’d like to have different names for acute and chronic CRPS. Here’s why:

Acute CRPS is all about the pain, with swelling and dystonia and circulatory high-jinks playing second fiddle. With acute CRPS, good results are consistently found with vitamin C (500 mg twice or three times daily is the usual dose range) and also with activity plus pain control, both quite aggressive.

Apart from that, therapies vary widely as to what will work with whom, but chances of remission in the first few months are very good, and in the first few years are still comparatively good.

After that, the whole situation changes.

With chronic CRPS, you realize that you have to find a way to live around the pain because so many other things are going wrong, life itself has to take center stage at some point, and pain has to take its turn in the wings.

Once the brain plasticity has gotten going, it’s no longer just a pain disease, but a disease of dysregulation, as the signals change and the body’s responses to the signals change and the brain’s ability to even recognize appropriate responses to temperature, circulation demands, sensation, perception, and so forth, all slide downhill.
Bosch_painting_of_Hell_(582x800)
In acute CRPS, having the word “pain” in the name is absolutely appropriate, because that must be addressed to let the brain reboot and get back to normal.

In chronic CRPS, pain often remains a huge part of it, but the central brain-changes are what creates and sustains the disease state. Pain is, clinically speaking, a ghastly distraction.

It’s a key symptom, a good guide (since muscle weakness, sweat and circulatory changes all tend to track to it at least some of the time), but it is not the driving force of the disease. The brain changes are.
poison_skull
Pain is terribly seductive to researchers, because people who don’t have chronic CRPS think they “get it” about pain (hah!) and, since that’s easier to relate to than the word “complex,” let alone the hopelessly misunderstood terms “regional” and “syndrome”, what they focus on is the pain.

The real problem is the brain, not the pain.

In my private internal world of reason and order, chronic CRPS is actually known as Complex Neuro-plastic Dysregulation, CND.

My eyes make words out of letter groups, usually just by adding a vowel. What comes to mind for me is, if you don’t win at CR[a]PS, you get C[a]ND.
craps-tshirt-front
Makes all kinds of sense to me 🙂

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Threads on the loom: bereavement and CRPS

When I was 4, we moved to New Jersey from Turkey, as my parents thought their kids should get a feel for their native land. Our new backfence neighbors were a large and lovely family from Virginia, so I learned to spell “dog” both with and without a “w” by the time I was six.

The youngest daughter got me going on poetry. We read A. A. Milne and Louis Untermeyer in between dips in the kiddie pool. Her Mom, Mrs P, gave me drawing lessons when I was about 9.

My Mom was very maternal in her genuine enthusiasm for all my art. (I found that frustrating, because I knew it could be better and had no idea how to make it so.)

Mrs P did not have that problem with me… Her key edicts make reasonable rules for living: For one thing, I should not draw the whole scene until I was capable enough (don’t let things overwhelm you.) I had to pick the parts that were most important or that caught my eye, keep it simple, and do it right – or else there’d be erasing, and, if you erase too much, the surface gets harder to work on. (Isn’t that the truth.)

She was also good for the reality check. She quickly eliminated my grade-school habit of drawing red apples and brown trees, but made me look at a real apple and draw that; hold my colored pencils up to the tree and see which colors really matched.

See what’s really there, not what I expect or what I’ve been told things should look like.

The biggest note of approval I ever got from her was, “not bad.” By the time I was 6 weeks in, I was able to collect a “not bad” or two almost every lesson, which pleased me no end.

CRPS took away the link between brain and hand that let me make art, but one thing really stuck with me …

Why settle for good or even great, when you could aim for making it absolutely right?

“Good” and “great” are about others’ opinions, but “absolutely right” is something ageless that stands on its own.

Later that year, our parents sat us down to have a family meeting. Dad had been offered a job in Cairo, Egypt. He wanted to know what we thought about moving to Egypt in a few months. Mom and Dad discussed pros (long list) and cons (short list.) Older Brother asked about schooling (very good) and the social scene (unknown, but probably interesting.) Younger Brother piped up with characteristic curiosity and adaptability.

It seemed like a done deal, but I was wrong. Dad looked at me and said, “What do you think, Isy?” I must have looked surprised. He said, “You have a good sense of people. I don’t want to finalize this decision until I hear what you think it’ll do to us, either way.”

Should I be nice? My first instinct was to be nice, to stick up for the shabby underdog (in this case, New Jersey), to do what I thought was expected of me … but it stuck in my craw. Perhaps Mrs P’s lessons on seeing things as they really are had sunk in.
I said, quite honestly, that New Jersey was not being good for any of us (except maybe Younger Brother) and that Egypt would be new and interesting. We all liked new and interesting. So, as far as I could see, it was hard to see a downside to going, and hard to see an upside to staying.

So we went. And I got an early lesson in the value of calling it like I see it.

Our vacations were dreamlike, because we were close to some of the most striking sights in the world:

  • El Alamein and the remains of fallen soldiers from 5 continents;
  • The Red Sea, when it was still the most outstandingly varied and brilliant source of sea life on Earth (it’s still good in spots, as that video shows);
  • The southwest coast of Turkey when Bodrum (formerly known as Halicarnassus) was still a fishing town and their medieval castle the tallest building in it;
  • And, of course, the remains of roughly 8,000 years of Egyptian history from before the Old Kingdom, down through all those Rameses, Greek absorption, Roman annexation, Medieval flowering and Mameluk co-optation, the French and British tradeoffs, modernization as the royal family fell and the secular dictatorship accepted Nazi help to fend off the British return, the flowering of art and writing as the world wars faded and the newly mobile masses could collect like runoff from the tortured continent to the north. The Ancient history is only the beginning…

During the day, I learned about path-finding, history, and sea life, and in the evenings my mother read to us from local literature such as the Odyssey, the Iliad, My Family and Other Animals, even A Connecticut Yankee in King Arthur’s Court (the sharpest satire on jingoism and culture shock ever written.)

My parents had a gift for making the most of teachable moments.

The move turned out to be an excellent choice for all of us: Older Brother became a track star on the international circuit, I found a crop of kindred spirits, Younger Brother’s precocious historicity kept growing, Mom became a successful working photographer (and, as it happened, a role model of working womanhood for every intelligent female friend I had), and Dad got paid to help people – then towns – then governments get better and better at handling their money and improving their chances for a sustainable future.

The day I drafted this is the 38th anniversary of that move.

Dad was great at practical stuff. He genuinely liked humans, despite being such a historian. He often said that people are like table wine. Each one is a blend of different strains: good and bad, clever and foolish, creative and not, good with money and profligate, nice and otherwise… and each person’s blend is a little bit different. If you can accept each of them as the blend they are, and not try to change them – into a different blend, or even into beer, for instance – then you could really come to appreciate the variety that this world has to offer.

People are what they are. Accepting that makes for better connections.

The first time he taught me to drive was when we were on vacation in France, which was cheaper to get to than the US. We had rented a historical farmhouse that was about to become a gîte (at which point the price would go up), so we got all the benefits – a fireplace Younger Brother could stand up in, window sills two feet thick to sit on, a lush yard going down to a creek at the bottom with a moat up one side of the yard, a line of stately chestnut trees, twittering birds, fresh eggs and raw milk from the neighbor – for considerably less than we should have paid.

The rental car looked like it came straight out of a matchbox, but it was a real, rattly little French Renault. Dad sat in the passenger seat and directed me to the driver’s seat. He told me about the brake, the gas and clutch, the gear shift, the friction point, and how it all came together. I got the friction point coordinated and tested it a few times.

Then he said, “Okay, here we go.” I checked the friction point again and then stopped. He said, “No, I want you to go. Go ahead and drive across the yard.”

Oh, okay then. I can do this.

I grabbed the wheel tightly, engaged the gear, and eased past the friction point.

The car snorted briefly, pawed the ground, took the bit firmly between its teeth, and off it went. Or so it seemed to me.

The car charged off the gravel, kicking it up behind. It careened over the lush yard, carrying us past (fortunately) the huge stone house. It rocked and bounced off of molehills, scoring crazy tracks through the soft green earth.

I noticed my Dad was yelling, but he never yelled, so that was confusing. I didn’t understand a word of it, anyway.

Completely out of its metallic mind, the car charged past the trees, heading straight for the neatly-dug moat.

I was helpless to stop it. My own involvement had escaped my awareness completely. I simply hung onto the steering wheel for dear life, eyes wider than ever, completely absent to the fact that MY FOOT WAS ON THE GAS.

All at once, Dad finally got his full-grown leg around the gear shift and kicked my foot off the gas pedal and stamped on the brake in one astoundingly swift move.

The car sputtered, died, rocked to a standstill.

Its front wheels were on the lip of the moat. Below us, three feet of water and unimaginable depths of sticky mud glittered silently.

Little clods of earth trickled out from under the front tires and dropped in, stirring tiny clouds as each one descended through the water and into the mud.

All was quiet. Even the birds were too shocked to peep.

I sat there, frozen, hands locked on the wheel. I was alive. And dry. It was shocking.

I didn’t dare to move.

I heard Dad take a breath, and then take another. I felt, even with my head still turned away, two completely different speeches considered, then thrown away before he even made a sound.

I turned to see what he’d finally settle on, and whether it would finally involve a pair of hands wrapped around my throat – something I’d never seen him do yet, but you never knew, especially after a performance like that.

A pair of blue lasers drilled me to my seat.

Very quietly, very clearly, very firmly, he said, pronouncing each word distinctly:

“When what you’re doing doesn’t work… Try. Something. Different.”

Words to live by.

It was years until I was anywhere as green as Bordeaux. I lived along the Mohawk Trail in my 20’s. My excellent friend Paul was the hub of a wide circle of friends who, even if we couldn’t always stand each other individually, felt strangely as if we were still part of the same tribe: Paul’s tribe – or, as we called it at the time (such was his gift for invisible influence) The Tribe.

Paul was a master of appreciating people just as they were – even if that was not necessarily what the person in question wanted to be. He was the first to say, in assured tones,

“You’ll figure it out, Bella.”

He wasn’t kidding, either. He had complete faith in me, in spite of the evidence. I don’t know why. It sure helped, though.
My Dad died in early February 1999 while swimming in Egypt. I still remember the way the word “No” echoed off the walls of my little room at 4:08 am, when I got the call. The second flight on my 3-legged trip back East was overbooked, and I was going to get bumped.

I went up to the desk with my untucked button-down shirt, uncombed hair, and my own pair of blue lasers. Very quietly, very clearly, very firmly, I said, pronouncing each word distinctly, “My father is dead. I’m going back to bury him. I will be. On. That. Plane.”

And I was.

On January 23rd the following year, Paul decided to sleep late, and never woke up. On the plane to his funeral, I wrote to the father of one of my oldest friends from Egypt days, who had end-stage cancer. It started something like this:

“I’m on my way to a dear friend’s memorial, and I’m keenly aware that life is short and time is passing. Even though I don’t know you well, because you were my friend’s father rather than my friend directly, you matter to me. I want to let you know how important you’ve been throughout my life.” And then I told him about the ways his life had intersected mine over the years, brightening it along the way.

It was the last letter he received in this life.

Deathiversaries.

That’s my word for those days that sneak up on the calendar, dropping shards of stabbing tears out of a clear blue sky, breaking my knees for a moment as the agony of the unfillable absence hits me anew.

Now, not to strain the violins further, but the period that encompassed the deaths of my father, Paul, and my friend’s father also encompassed several other bereavements, a crippling stroke of my grandmother’s, the heartbreaking failure of my almost-marriage, the end of my nursing career due to illness, being too sickly-weak to make it to the mailbox and back for months, starting a new tech career from nothing but raw talent and pure luck, and moving.

And I really hate moving.

That was all in 18 months. I was a different person at the end of it. I’m sorry to say that it was someone who could face the devastation of CRPS with a lot more poise, but it still sucks.

Last Monday, January 20th, my old neighbor and teacher Mrs P died in her sleep. I haven’t seen her in 38 years (minus a week) but something as sharp and bright as faceted crystal slid out of my world.

My kitten Ari was a comfort to me, flinging himself firmly onto my body, as if to shove his strength and warmth into me.

He was enormous in every way: 10 pounds at 10 months and all of it lanky muscle, enormous love, enormous cheer, enormous charm, enormous athleticism, enormous independence, enormous courage, enormous confidence, enormous sense of humor … he was enormously unusual, even for a cat. He was an enormous invitation to life, just by the way he lived it.

Four nights after that, Ari disappeared. The following morning he was found on the road, dead and cold. Our Lovely Neighbors got us through, from finding his body to explaining to J to telling me. (I’m weaker now. It’s the buckling knees I remember.)
Partner J dug a perfect meter-deep grave, bedded it 6” deep in sprigs of fresh California bay while I blew sage smoke in, and I carried my kitten down to his final spot in the sun, at the bend in the path where he played with our dog and the Lovely Neighbors’ numerous cats.

I took the loss hard.

I’m an old hand at grieving. I can walk through the stages and the process in my sleep, although my body handles it worse all the time.

  1. The initial devastation and shock.
  2. The tasks:
    1. communicating the news,
    2. planning the funerary rites,
    3. preparing the final rest,
    4. performing the rites one needs to lay the deceased, as well as life with the deceased, to rest,
    5. cleaning up their things,
    6. comforting each other,
    7. getting something to eat,
    8. reminding everyone to be extra careful and remember to drink lots of water, which we tend to forget nevertheless.
  3. The reactions:
    • Noticing the way sunshine lands on my skin and birds sing in the trees but it seems to come from a world that’s not quite the one I’m in.
    • The way I have casual surges of wishful thinking: wouldn’t a bullet in the brain be nice about now? This isn’t suicidality (I promise), it’s my mind’s way of signaling that it’s overwhelmed by horrible feelings that it can’t do anything about, and it’s tired and doesn’t know what to do.
    • Re-learn the daily habits that this person (of however many feet) used to be involved in. That’s so dislocating. I don’t need to eyeball a certain corner of the bed before moving my feet now. I’m not even awake when I do that. It’s so horribly weird to wake up by realizing I don’t have to look.

Then the misnamed “stages” of grief, which are really nodes, which can be visited in any order.

  • The anguish, where life without that person has to be faced.
  • The anger, like, why couldn’t that little cuss cross under the bridge as usual, instead of testing one more damned limit and crossing over?
  • The bargaining, although I stopped bargaining years ago. I don’t seem to do that now. Too many unanswered prayers wept and bled into silence.
  • The sweet memories that stab like a ray of sun in my eyes, bringing tears that gradually wane over time, until those memories bring mostly sunshine.
  • Finding a new pattern beginning to emerge in my life, one that encompasses that absence without filling it, but making it less of an obstacle over time. They call that “acceptance”, but I think that’s a bit of a misnomer. I’d call it adapting.

I’ve only realized how very deep and interconnected life is by losing parts of mine. In that 18-month period of multiple losses, I found myself mulling the image of a complex weave on a loom, where each person and each influence in my life was a thread.

Some threads were solid and stable, some were wildly colorful, some thick with burrs, some wove in and out of the pattern, some were knotty and strange, some were pure gold.

When a major thread, or a lot of threads of any size, were ripped off the loom, then the fabric was distorted and there was a visible gap in it for a long time. I could weave on, but that band of the fabric was weaker – sometimes for years, sometimes for a lifetime. It takes a very long time to rebuild from the loss of enough warp threads.

It takes time to work new threads into the weave of life, and longer still to see which ones work in the overall pattern, and which ones fall out on their own – or need to be pulled out, for the damage they do to the rest.

Some people and influences are part of the warp, as they’re meant to stay in the weave for its length and are made to be strong. Career, close family, good friends, matters of identity – these are all warp threads which usually shape and color our lives all along its length. Each one has its own color and texture and breadth, which varies from person to person, and each contributes a depth of color and texture to the weaving that nothing else can provide.

In life, unlike fabric, the warp threads are highly individual.

When one of those gets ripped out, the whole weave … well … warps.

Some people and influences are weft threads, and are easier to change out. Doctors are usually weft threads, although the need for medical care is a warp thread for some of us. Jobs are weft, while careers are usually warp.

I lost a number of warp threads in that 18-month period. Between the end of January and the second week of February, the closest bereavements hit, year after year. The weave of my life has warped, over and over, in the armpit of winter.

I shift my stance from relying unthinkingly on having a lot of strength inside and out, to being mindful and precise about where to put my diminishing attention and energy.

I’ve learned to be more and more aware of good times, genuine love, beautiful days, radiant people, perfect moments, delicious food …

When I look back, I have far fewer regrets when I really noticed good things at the time.

I didn’t expect to have that kitten in the first place.
Even in this season of bereavement, I didn’t expect to lose him so soon.

But when he was here, keeping me permanently in a mild state of befuddlement because he was so much larger than life but still so very young, I sure noticed.

One day, that should be a comfort.

Meanwhile, as CRPS continues to change the game on me, I’m trying to learn to handle bereavement-amidst-deathiversaries with this new and different body-system.

My autonomic system is normally in a state that maps most closely to that of someone who’s being continually beaten with a live cattle prod, but years of practice have taught me when to ignore it and how to manage the results somewhat.

It gets better and worse from time to time. Stress, uncertainty, poor diet, missed meds, solar flares (believe it or not), and injuries, all crank up the volume on my oscillating central nervous system.

Bereavement is stressful, unpredictable, and contributes to poor diet, missed meds, and injuries. (Possibly solar flares for all I know.) Deathiversaries are a hardwired physical memory of bereavements. Having both at once is like being hit from both sides at once. Double oscillations that don’t cancel each other out, but feed into each other and magnify their effects.

All right… What’s an oscillating nervous system like?

Right now, the skin on my face is so raw that my partner’s nice springy beard feels sharper than a cheese-grater. My left lower leg wants to turn into a lump of Dacron, impenetrable and basically useless. My wrists and forearms, well, the less said the better, but I have to hold my mug with both hands to avoid wearing what’s in it. I went outside in soft shoes today (I usually wear hiking shoes) and the friendly little stones in the yard slowed me down considerably, as each one wanted to get way too personal with my foot-bones.

That’s the physical side of CRPS.

Because of the brain changes that make that stuff happen, there’s a parallel process that happens on the emotional side. Imagine the same degree of relentless rawness and unquenchable pain inside the heart and mind, and you’ll have some idea what it’s like.

I’ll give you a minute, if you like.

I don’t mean to whine, it’s just a fact of life with this disease. It takes a lot of managing, because my mental state wants to default to, well… how distressing and upsetting it is to be beaten continually with a live cattle prod.

How do you deal with an oscillating nervous system?

When your world is being purged, it’s important to replenish and nourish. This means extra antioxidants, extra meditation/biofeedback, extra hugs, and – if possible – someone else to clean the house and help with laundry and cooking.

One must eat, clean, and cope, and if it takes help, then I ask for help.

Herbal lemon balm extract helps cut the flared nerve pain. Chamomile and lavender tea, maybe with tulsi, helps me get to sleep. Some people do well with vervain or ashwaganda.

Homeopathics like ignatia amara and hypericum ease other parts of my nervous system responses. Also, I use an essential oil blend from Young Living called Valor, to reduce the hotwired panic reflex and hyper-alertness.

In case it isn’t obvious …

I don’t care what academics say, I only care what works for me. Empiricism is the only form of science that matters in the individual case.

I keep busy in order to keep my mind from exploding over the surfeit of losses and memories of losses, while CRPS takes the brakes off of all the feelings – physical and emotional alike.

This leaves me to manage the resulting inward chaos with whatever poise I can fake, because I know that a certain part of it is grief but a certain part of it is simply brain damage.

Either way, it will ease up in time.

So I keep busy, take my supplements, comfort the dog (whose heartsick look would make a stone weep), try not to draw attention to my partner’s look of not knowing what hit him, and wait …

Mostly, I wait for the balm of time, because it doesn’t change the loss, but it helps me learn to live with it.

Also, it moves the deathiversaries into my rearview mirror for another year. Until then, I’ll hold the love and leave the pain as much as I can.

Lastly, I wait for the fierce oscillations of my nervous system, humming and shaking like a five-foot-high tuning fork, to decrease and diminish and eventually …
quiet down …
to … a …
stop.

There is always an afterwards. Survival is simply a matter of getting to it.

Managing CRPS under this kind of duress is not magic, it’s persistence.

I keep breathing and let the awful moments pass. I’m old enough, both as a person and a CRPSer, to know that there are better ones ahead.

All I have to do is get there.

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