Fortunately for all of us, the blogger at Elle and the Autognome has done a good job of laying out the basics and providing a starting-point for figuring out how to manage it in individual cases — because we’re all different, and we have to figure out what works in our particular bodies. So, rather than waiting for me to get it together on this topic, I’m going to punt to her.
* For the record, “central nervous system sensitization” is a collective term for the diseases characterized by CNS up-regulation of essential neural signals, notably pain but also a whole garbage-can of signaling misbehavior that goes with that. These diseases include CRPS, fibromyalgia, chronic fatigue, multiple sclerosis, lupus. chronic Lyme, and so on.
“Never give up. Never surrender.”
Leonidas of Sparta, Jael the wife of Heber, Alexander the Great, Queen Boudicca, Mary Magdalen, the Prophet Mohammed, Hildegaard of Bingen, Vlad the Impaler, Queen Isabel of Spain, Geronimo, Copernicus, Marie Curie, Winston Churchill, Aung Suun Kyi, Terry Pratchett, the 14th and Final Dalai Lama…
Rest and retreat, yes.
Pause for thought, please (unlike some of those listed above.)
Knowing when to acquire a sense of proportion, ideally (again, unlike some of those listed above.)
But… don’t give up. Don’t give your rightful self away.
It’s always been easy for me to be determined, but not easy to pick the right things to be determined about.
In my 20’s, I wanted to save the world.
In my 30’s, I was willing to work only on that part of it that wanted my saving.
In most of my 40’s, I was dying — sometimes by inches, sometimes by yards — and couldn’t quite save myself.
I’m 50; what a relief!
Given that trajectory, it’s no wonder that my priorities have shifted a little.
I figure that, as long as I have working pulse and respirations, I’ve got a job to do. (I suspect everyone does, but I could be wrong.) My particular job is to re-possess my physical self, and, given enough slack, help others to re-possess theirs.
Our bodies are not just machines, despite the inherent dis-inheritance proposed by Descartes (considering the body a separate entity from awareness), and the even more extreme model funded and fomented by a slightly misguided Hearst (who fell in love with interventionism, and drove the mechanical-problem-to-be-fixed model of medicine over the shifting-dysfunction-to-right-function model of medicine.)
Bodies are the media we experience life through, the means we have to respond with. Despite the relentlessly shallow concerns over appearance the media saturates our lives with, our fundamental experiences of life are not just seen. Life is an all-body experience.
Bodies are marvelously self-aware organisms on an enduring quest to care for and maintain themselves by communicating as effectively as possible within themselves, and responding as usefully as possible at every level — within the cells, between the cells, from cells to organs and back again — with the marvelously alert circuitry of the nervous system and the dazzlingly subtle chemical dance of the endocrine system drawing the whole show together.
That’s a bit more complex than just meat-sacks wrapped in hide.
I’ve been mulling the twined facts that my body is an amazingly tough, brilliantly adaptable organism, and at the same time, is an organism constantly under sieges both subtle and overwhelming. Yet it never stops trying to find a useful set of responses, it never stops signaling and listening.
It never gives up. It has never surrendered.
I admire that.
Just for grits and shins, here are a few other things that I mutter to myself over and over.
C’mon, you can do it.
Motion is lotion.
Use it or lose it.
Change or die.
That’s quite a set, when I look at it laid out like that.
Not all of them are cheerful. Sorry.
They’re all thoroughly grounded in my reality, though, and they all have had something to do with my getting this far. They are hammers and screwdrivers in my mental toolkit of radical presence, pushing back on neuroplasticity, and not settling for what this disease would leave me.
Naturally, I say these things to myself in tones of firm, loving parental authority, since it’s all about re-re-plasticizing my brain, and those are the tones it responds to.
FTR, I’m sincerely glad it responds at all. When I was in nursing school, they told us adult brains were fixed for life. I doubted that from the start, and events eventually caught up with my skepticism. Brain plasticity FTW!
I take good care of my brain. I work hard at learning more all the time about how to support and foster it in spite of this tedious collage of illnesses. Neurology interests me — always has. Now that it’s so personal an issue, it’s positively compelling. Neurology’s very complex, and hooks into everything — fascinatingly fractal, in the way it repeats the same physiological “phrases” to very different effect in different parts of the body in response to different changes.
I’ve been wrestling with my gut this past year or so. Lately, it looks and feels like someone’s taking a bicycle pump to it and bringing it up a little more every day. When it interferes with your breathing, that’s a lot of bloat!
I’ve found the gastrointestinal (GI) system to be a bit of a trial. It’s very complex, and hooks into everything. There’s no getting away from the endless iterations of its main roles of sensing, transforming, processing, and discarding: at the intracellular level, intercellular level, endocrine level, organ level, and so on.
Some observant part of my brain notes that the same characteristics I find appealing in neurology, are the same ones I find appalling in gastroenterology.
And the gut has so much STUFF in it…
The liver parked under the ribs at one side, the spleen at the other, holding half your blood at any one time, right across the top of your abdomen;
The endless loops of squirming intestine, stretching and shifting within their blobby webs of mesentery, shoving along several pounds of food residue at any one time along its length;
Lymphatic nodes linked in constellations in the shining webs of mesentery and glistening loops of intestine, ready to respond instantly to allergens or pathogens or anything else in your GI tract that could make your body revolt;
Major vessels, the abdominal aorta and the vena cava, coursing alongside the spine, apparently apart from the mess, but branching out so thoroughly and so minutely into the organs and the mesentery that the smartest rats in science couldn’t make it through that maze;
The tenth cranial nerve, forming an intimate and instant link between your brain and your gut, linking your brain directly to the largest grouping of nerves outside your brain, the nerves that surround and penetrate your organs and your gut, embedded in and supported by that amazing net of connective and fatty tissue, the mesentery;
And let’s not even go into the endocrine system, responding minutely — at the level of individual molecules at times — to the constituents in your food, the way you feel about them, what you need them for right then, what else you’re sensing at the time, and even what time of day or year or month it is… then hooking the info back out through the nervous system, cardiovascular system, lymphatic system, and of course the gastrointestinal system.
I was sitting in my Epsom bath today, mulling this over after the battery in my e-book died. I had done the squishing of my legs and arms with the washcloth, and ran it over my neck and back and sides too, but had a terrible time making myself touch my abdomen. It felt just awful. It also felt like it was somewhat detached from me, like it was floating a couple of inches off my back and spine, simply hovering, slightly displaced, in front of the rest of my physical self. Touching it was deeply upsetting in some way, triggering a wordless revulsion.
This is not an unusual experience for CRPSers. We often feel as if the affected parts of our bodies are almost separate from us, or like they belong to someone else, and touching them is — even apart from the allodynia — a crankiness-inducing, unpleasant experience. It’s a perceptual trick the brain plays, probably part of its general effort to manage more ghastliness than it’s really set up to deal with.
One reason I do the Epsom baths (and the stretching, and the activity, and the relaxation meditations, and the aikido/tai chi/qigong, etc.) is to stay on good terms with my body. That whole self-alienation thing is just too wrong, to me — my life is always best when I’m in my skin, so to speak, whether or not my circumstances suck.
Also, to be fair, my body has done nothing wrong; it just got some of the shortest darn straws out there, and it’s doing its mighty best to manage that. It doesn’t deserve my loathing at all. So, I work to keep on good terms with it.
This is probably one reason why I’m still often functional, frequently productive, and can still walk a mile without sitting down to rest on a good day — even after 15 years with this disease on little or no medication (here’s why no CNS depressants like narcotics, here’s why minimal other meds.)
Anyway, there I was in the bath, watching my belly inflate and almost float away, even though I was Epsom bathing (which usually calms my systems down), and realizing I was finding it unbearable to touch the darn thing, even though it was practically in front of me.
I thought, “Neurology is not that hard for me. Why is gastroenterology so impenetrable? Why am I making so little headway on figuring out this stomach stuff, and dealing with so many setbacks? Why do I get these little tailspins of terror about it? What’s going on in… the second largest collection of nerves outside my brain?” I said, as the lightbulb over my head turned on.
I thought, “I’ve been having a lot of trouble with gastroenterology. But I can usually do neurology.”
And the word for the neurology of the gut, ladies and gentlemen, is neurogastroenterology. (Break it down: neuro meaning nerves, gastro meaning stomach, entero meaning inestines, ology meaning study of. Now you have it.)
I’m pretty sure I can do that. I can sure take a stab at it.
First lesson: review the vagus, a.k.a. Cranial Nerve X. It’s a doozy.
I’d been in a really bitter, increasing pain jag for days, and though a dose of Norco and dramamine gave me one good night Wednesday night, the pain started ramping up again once the meds wore off on Thursday morning.
That was bad. Very bad.
The Norco usually breaks the cycle. I definitely did not want my body thinking it was normal and appropriate to keep cranking up the pain.
I worked in the yard Thursday late morning (John keeping me from overdoing on any one thing, because I couldn’t track well enough to notice), because I just had to move through the pain to keep it from making me lock up.
Then I took a disco nap, dressed up minimally, and went to see Boz Scaggs at the Calvin Theatre in Northampton, which we’ve been looking forward to for a month.
Side note… I haven’t been inside the Calvin for 30 years, and it looks it around the gingerbreading, but apart from the art-nouveau panels it was in great shape.
The opening artist was a solo acoustic set by Jeff LeBlanc, who has had some success but not that much; an unfair position to be in, because he has the creamiest tenor I’ve ever heard in the rock/folk-rock realm, a pleasing and rather classy onstage personality, and a delightful way of framing and playing his material. He has matured just since recording this:
I mean, John Mayer can just shut up and move over. Beautiful.
The Boz show was outstanding.
He used to go in for pyrotechnics and flash, I’m told, but this show was just pure, perfect musicianship. His 7-member band fattened up the sound in the smoothest, tightest way — every note perfect, every beat perfect, and the band grinning and digging into the show like they were as happy as we were.
Bonus: I finally understand what musical stage lighting is supposed to do. I’ve seen a few shows and, apart from the spotlight, the shifting colors and intensities just seemed to be either distracting or hokey. The lighting actually worked this time, and I only noticed because there was one single slightly missed cue, and then I noticed how flawlessly it had been guiding my attention and floating with the music until then. I could see everyone, but each musician was distinct, and the soloists glowed. Every moment was beautiful. Who knew?
I was absolutely jamming. Every song was just a whisker better than the last (perfect) song, and everyone was having a fabulous time. I was lost in it, elated. I was rocking in that ecstatic state that a great performance can put you in… and suddenly, I swear I felt my brain move: my left front inferior pareital portion and my right lower temporal lobe and some bits elsewhere gave a squirm, a shift, and then clunked into a more comfortable position.
Then I realized I was in no pain. No pain! I mean, NO FREAKING PAIN AT ALL!
I’ve got to look those parts up and see what they relate to. I may be overthinking it, of course.
Fast forward past a couple post-show hours of “wow” and a happy thunk into the pillows; waking up to a beautiful dawn and feeling, in the words of Tony the Tiger, grrrRRRRREAT.
Still have allodynia, where a breeze feels a bit like a hot iron sliding over my skin. Still feeling a bit fragile, like my body might tear at the seams if I try too hard. Still not pushing it (which means I gotta get off this keyboard.) But my baseline pain is back down, well below the event horizon of functionality, and I can sit and stand and move and there is NO FIRE. NOR FIRE AT ALL.
Those coals banked in my feet and hands and knees and every single bone of my spine and so on and so forth are just gone.
This is a good day, folks.
Next on the agenda, after finding our own home and getting the outstanding business nailed down: Music lessons. I don’t know in what, but all those scientific studies about the different ways the brain benefits from hearing and playing good music are suddenly making a boatload of very personal sense. Victory! Thank you, Boz & co. 🙂
It’s been a crazy winter, even for New England. Those of you with pain syndromes know what that means: changeful weather means unstable pain neurology which means more pain and less brain.
I’m so much more stable here in other ways that I found it frustrating to be soooooo daffy. I wanted to tuck that daffiness back behind the dam I can usually hide it behind, and use the creative and practical components of my mind to drive what I show in public.
I revised my supplements a few times, and finally found a routine that does seem to stabilize things a bit better, although it’s kind of hard to tell (it’s like inspecting a crystal with the lens inside, or possibly the other way around.) I’ve stopped fiddling, and will let the test of time tell me how this regime really does.
Also, we’ve had 2 or 3 strains of flu (so far) dancing through the household. The second one was nice, because the really awful part lasted about 5 days and it had an incubation period of about 6-7, and we got it one by one; as soon as 1 person got really sick there were 2 people to take care of him or her. In one case, this meant miso and ginger soup; in another, raw garlic in mashed potatoes; in a third, goldenseal and vitamin C; in all cases, loads of homemade chicken soup and buckets of fluids.
I’m not sick of homemade chicken soup, as every pot is different, but I am *so over* herbal tea, broth, diluted juice… everything. I had a big mug of plain hot water yesterday because at least I’m not sick of it.
I find that viruses affect my brain. They have for as long as I can remember. One of the first signs of viral illness, for me, is getting cranky and forgetful all of a sudden. With all these brain issues I have now, it just turns the volume of pain, reactivity, and goofiness up to 11.
Into this brew of brainlessness, add one more element of confusion: my most expensive brain prescription, Savella, looks exactly like my cheap antihistamine, generic Zyrtec; I take them both twice daily.
You can see this coming, can’t you…
I found out a week ago that I’ve been double-dosing on Savella and underdosing on Zyrtec. (No wonder my asthma has been acting up.) That, more than the virus and sinus activity, would explain the intense dizzy spells, disembodied feelings, uncharacteristic irritability, and eerie emotional detachment from my nearest and dearest. (No medication is harmless. Now you know what an overdose of SNRI does to me.) It was a relief to know what really caused all that, but it still sucked to go through it.
So, thanks to the daffy-dam getting burst by those bugs, I blew my brain out of the water (and also blew about $150!) AND set myself and my housemates up for a few weeks of needless unpleasantness. I’m still recovering, but well enough to think coherently about it, so that’s a huge improvement.
To my morning pre-pill routine of apple (malic acid) and sunflower butter (digestible folate, minerals and anti-inflammatory oil), I now have ~1/2 cup of defrosted Boreal blueberries (intense brain food with anthocyanins and antioxidants for recovery) topped with grated aged cheddar (intense brain food with dopamine precursors and saturated fats for those nerves) during and after pills. My pills go down better, and bit by bit the fog seems to be clearing.
Now that I might be able to think my way past a soggy Kleenex, it’s time to get that “activity” thing going again… if I can remember how. There is absolutely no substitute for activity, because it balances the autonomic system, improves neurochemical stores and their behavior, and can even reduce pain, with *no negative side effects* — as long as you don’t get hurt or over-do.
I had a dream last night of dealing with broken gym equipment, and of absolutely longing for good t’ai chi instruction. Until I find it, I’ll work with what I’ve got: my class notes and a couple DVDs from my old Academy. It’ll get me started, and then we shall see.
A dear friend is embroiled in one of those ghastly legal tangles where the vultures are rigged to win. I’m the key defense witness. This comes up later.
This whole winter, I’ve been basking — simply basking! — in the sheer delight of being safe, sheltered, warm, loved, and with as little chaos as anyone with a recent move, a complex illness, and widely scattered relationships can get. Occasionally, I’ve wondered if I’m allowed to be in such a situation, and strained my ears for the sound of the other shoe dropping… Then I do a reality check, tune in with my lovely partner and my lovely housemate/hostess, and it appears that no, it’s okay, things are right, and this is what’s right now.
My nod to the fairly relentless self-management that got me through the past decade has been an occasional effort at meditiation, a minute or three of qi gong, a few moves of t’ai chi now and then, or the occasional mood-check.
In short, diddly-squat.
In December, I lost it with a dear friend.[LINK] I did more mood-checks for awhile, a bit more meditation, maybe ten whole minutes of t’ai chi every other day for a couple weeks.
I was heartbroken at the mess I’d contributed to, but couldn’t dig up the motivation to really “do the Do”, to restart my hard-won disciplines.
Dear heavens, it was soooooo good to rest, just relax for a change, enjoy the sensation of not looking over my shoulder and not being constantly *forced* to calm sometimes-legitimate terror or possibly-reasonable panic.
It was winter. I was safe. I let my disciplines sleep.
Meanwhile, the brakes on my car[LINK] were acting up, or rather, occasionally failing to. $2,000 later, that was supposed to be fixed.
Gradually, I noticed that J was telling me, more and more often, to lower my voice: “I’m right here!” Huh. I didn’t think I was talking that loudly…
As I relaxed, other humans became more interesting and I started striking up conversations with strangers, as I used to do. They didn’t respond as well as they used to. Odd…
On social media, I found myself being snippy where I used to be sweetly witty or wryly amusing to make the same point. I backed off of my online time, because if I can’t manage myself well, I’d better not interact with anybody else who might be feeling frail. “Do no further harm” has been wired into me from way back. It’s the most basic courtesy.
I took the car back for a second brake job a few weeks ago, only $150 this time, and that seems to have taken care of the problem. So my cynicism about car dealerships remains unimpaired, thank you.
Meanwhile, there were some tellingly unpleasant procedures[LINK] which illuminated a fact I’m still failing to accept: CRPS has moved into my viscera — it has leaped out of the musculoskeletal bounds and gotten right into my core. I used to say my case was “all-body”, but that was because of the gastroparesis and subtle endocrine weirdness, which I figured was simply faulty autonomic signaling. It has definitely become much more.
I could feel every line of my intestines and the springy squashiness of my organs as the ultrasound tech noodled around on my abdomen, and the less said about the gynecological exam the better. It’s real. It’s a bed of coals in there. This finally sank right through my skull over the past few days.
Damn damn damn damn damn damn damn damn damn damn damn damn damn damn damn. With extra damn.
So, now we’re up to this week.
I spoke with the lawyer involved with the vulture case mentioned above. I went off on a tear about the duplicity and injustice involved. He finally broke through by howling my name in exactly the tone my mother used when I was getting out of hand. Once I was quiet (and abashed), he said very sweetly, “If you’re going to go on like that, you might as well hit your friend over the head with a two by four.”
Two things happened. I realized that my self-regulation was much worse than I had ever imagined; and I spent the day in a state of total exhaustion and emotional fragility, the classic signs of a massive adrenal-dump.
SIMPLY GETTING WOUND UP IS BAD FOR ME. The mere state of emotional excitement is poison to my system.
I used to know that.
I used to know when the emotional excitement was coming, and could head it off.
Nope. Caught me completely by surprise.
So, I’ve been processing all this for a few days to a few weeks now. I’m coming to some conclusions, and have a few remaining questions.
I’m pretty sure the spread into my viscera had a lot to do with the merry-go-round of the past few years.
The spread in my brain may be related, in fact it must be; however, I’m pretty sure that re-incorporating my habits of self-care and diligence can get back quite a lot of the gentle precision, sweet tact, and pleasant diplomacy I was once capable of.
So, in keeping with this revelation, I’m going to acknowledge that I’ve completed my alotted time for being on the computer and get up to go do some morning activity. Then I’ll put my feet up for a bit and lunch on brain-supporting food. After a digestion break of an hour or two, I’ll do something physical in the afternoon, including 20 minutes of t’ai chi or qi gong. After that, an hour of work, which today will consist of loading my classical collection onto my tablet. This evening, I’ll spend an hour listening to classical music, then meditate, then apply my lotions for pain and muscle spasms before bed.
There are no bloody shortcuts. None. It’s just work, and it doesn’t stop.
I’m still supremely glad to be safe and warm and loved. I just have to wrap my thick head around the fact that it doesn’t mean I’m off the hook for taking care of myself.
I’m an old ER nurse so please, trust me when I say that nobody gets a guarantee with this life. Nobody really knows what’s next, and indeed, everything CAN change in an instant. Even for the healthiest. (This is why the legislation torturing the elderly and disabled makes me livid. People who favor that legislation are poisoning their own future. Everyone who lives long enough will become disabled.)
The point is this: it ain’t over until it’s over. If you’re still breathing, you still have a life, you still have choices. If you’re still alive, you have some influence over the next moment, and the one after that, and the one after that. Only you can decide where to put your focus, for each breath of this life that is left to you.
Being aware in the midst of the hell is what capable spoonies do, and we find a bit of heaven in it whenever we can. Yes this sucks like nothing we could have imagined, and I have a crazy imagination; but I still KNOW that there is a lot more to my life than this pain, this weakness, this utter destruction of everything I thought made up my life.
Turns out that was all peripherals. When the structures of my life were utterly destroyed, I looked around at the blasted rubble that was all that remained of my old ideas of my work, my abilities, and myself. I wondered who I was.
And I realized I was the point of awareness that was doing the asking. I also realized that, without those assumptions holding me down, and despite the agony and unbearable loss, somehow I was free, I could be more simply and purely myself.
So now I’m on groups for this brutal disease, wanting to give comfort, but knowing the only really true thing I can say is, there is comfort to be had, but it’s up to us to make room for it in our lives, to push right past the pain and fog and grief to look for the rest of what this world still has to offer.
There is excitement and peace and ease and delight in this life, but we have to find ways to make room for it, to find time to notice it, even in the ongoing roar of this pain. Over time and with practice, we get better and better at the peace and the joy and the loving connections, and .. it’s not that the pain is any less, because the rocketing nausea these past few days tells me otherwise, but it doesn’t matter as much, because more important things have taken its place in the core of our lives.
Easier said than done, but it’s basically a matter of practice. It doesn’t come naturally, and nor should it, because anyone who responds to getting a leg ripped off with, “Oh, what a lovely flower!” is probably not going to survive to raise offspring.
Being frantic in the face of horrible pain is a good survival mechanism — as long as the pain subsides when it should. For those of us who live with that kind of pain, we have to learn to re-program that core survival response (!!!) and be more mindful about how we deal with life.
Find excuses to celebrate. Finished the dishes? Celebrate! Heard from a good friend? Celebrate! Is it Tuesday? Good enough reason — celebrate! It sounds trivial, but it works. It makes your brain stronger, bit by bit. Each success prepares you for more.
In the Years from Hell, when I didn’t think I’d live out the year for a number of years, I was utterly wrung out with misery, and I refused to accept constant grimness. It was intolerable, literally intolerable; if I left my thoughts to dwell in it, I’d have had to finish myself off.
I turned my attention to whatever was not misery, and sucked the juice from it.
I noticed every sparkle of light on the water, every flicker of color in the tiny wildflowers in the grass, the way trees spread and shake their branches, the caress of the air on a fine morning, the particular blend of colors in every sunrise or sunset I was up for, the way the sky and sea reflected each other in every weather.
I got to learn the habits of the birds, from the imposing night herons to the unearthly blue herons, rare goldfinches, raucous terns, fat geese, chatty ravens, and the everlasting seagulls. I noticed the weird little shrimp living in the greenery below the waterline on the docks. When I could, I got up on shore at sunrise around the equinoxes to see the incredible light-show as the San Francisco windows were lit up by the first liquid rays of the sun, a dappled bank of golden glory marching up the hill across the Bay.
I was like a seagull for joy, pouncing on every bit of it indiscriminately. Time enough for the grey grims when there was nothing else to find. I leaped on every chance to find some beauty, some moment to get lost in.
Sometimes I was disappointed: sometimes the weather soured; sometimes a friend wasn’t answering the phone; sometimes a dash of color was a piece of garbage, not a flower. (I still pick up random garbage when I’m out.)
Working to find bits of joy was probably the most important tool in getting me through, because I could use it every day and it didn’t depend on anyone else to work. Fortunately, things did eventually change, and I was there to rise with that tide.
I trained myself well. To this day, I find myself stopping and staring when I see sunlight or moonlight shining on water.
It’s the most beautiful thing in the world to me. It saved my life day after day for years, so that probably makes sense, eh?
Be greedy; work at finding beauty and joy. It’s good for you. If nothing else, it pierces the veil of pain and frustration and it reminds you that there is a larger world, one worth getting to. Your old reality may be gone, but there are aspects of the new reality worth cherishing. I hope you all find the beauties that make you stop everything, just so you can get lost in them and soak up the joy.
In CRPS and dysautonomia, several parts of the brain get under- or over-enthusiastic (or both, unpredictably.) It’s easy to oversimplify, but even more confusing; each part of the brain has many jobs, so I can’t say that the anterolateral cortex does one thing and the cingulate cortex another.
I can boil it down by the effects that these remappings have, though. That’s relatively simple!
So, in me, this is what happens as a result of these scrambled brain bits.
1. Obviously, pain signals don’t know when to pack it in. That’s obvious. They just keep going and going and going and going and…
2. Coordination gets impaired. I used to be freakishly well coordinated, so I don’t normally get much sympathy, but this is a bit unfair.
I had 38 years of knowing exactly where my body was in space, of being able to move without triple-checking myself, from the time I first learned to walk. Or, rather, the time I first learned to climb out of my crib. … Several months before I was steady enough on my feet to toddle, I’d do a layback (a climbing maneuver where you grab one edge of a gap with your hands and then walk your feet up the opposing surface) to get up the side of my crib…
…then rappel down the rails and crawl down the hall to my parent’s room to let them know that it was almost dawn and I was ready to play.
I also learned to jimmy the rails so they came down altogether, but that took a little longer. More engineering and upper-body strength involved, you know. (I got a bed well before I was two. They figured it was safer.)
I’m not used to living in a world where my body isn’t exactly where I think it is. I probably take more damage than someone who’s been this poorly coordinated all their lives, because there’s this huge layer of bewilderment and surprise. Not to mention lack of preparedness.
I don’t compensate for it unconsciously — I have to be very conscious about being careful bending over, walking not running down stairs, always wearing de-skids when I go outside in the snow. This requires a bit more bandwidth than just doing things as you normally would.
3. The third and most annoying thing is, my brain just LOVES to go to anxiety.
Anxiety is a bit of a circus. It pushes up my blood pressure and makes my heart beat fast, which is worrisome in itself. It makes my vision go whitish, like everything is covered in fog. All this makes it rather hard to think, to reason out whether I really have cause to be anxious.
Then my stomach starts nudging the back of my throat, which is never pleasant. I keep ginger near all the time, because Tums just make it worse and I can’t stand Rolaids or any of the others.
Then my waste systems get into a tizzy and I feel like I have to go wether I do or not. If I don’t need to go now, then I will in half an hour, because (as I’m sure you remember from anatomy class!) the adrenals sit right on the kidneys and when your adrenaline goes up, so does your kidney activity.
So, on an eventually related subject, I recently got worked up for endocrine and allergy issues. The tests are still rolling in. A couple of blood tests were funky, so I need to get screened for gynecological cancer, and I need to get checked for pancreatitis — which, with my squeaky-clean life, would be decidely, wildly, completely idiopathic — if it isn’t cancer.
Naturally, part of my brain is throwing up images of a midsection riddled with malignancies. I’ve seen a few of those, so it’s not a big stretch.
That’s it, I’m doomed.
Stomach… wait, the stomach goes with the pancreatitis.
What notion of reality am I in now? The cancer one or the anxiety one? Because I can ignore the anxiety one — OMG I might have metastatic cancer! Everything’s turning white! My heart’s going too fast! AAAUUUGHHHH —
And this is where my head starts spinning around and the pea soup comes out at projectile velocity.
Not really. It just feels like being in a horror movie sometimes.
I’m lucky. I have a sense of humor. I just think about horror tropes when this circus starts, and I snort and calm down a little bit.
I have to jump on that first lowering of tension or it spins right back up. This is the dysautonomic brain at work — getting right back to panic is the easiest thing for it to do.
If mentally reaching out for my anxiety dials and trying to turn them down doesn’t help, then the very next thing to do is yawn.
It’s an incredible tool — no bad side effects, many uses. Plus, you can do it in company.
Let me explain.
Yawning starts with pulling air into the deepest part of my lungs. I can imagine it going all the way down my spine and filling the bowl of my pelvis. My ribs reach out and stretch nicely. This deep breathing is the first key.
The second key is that my jaws open up wide, releasing that clenched set of muscles there. It’s impossible to grit teeth while yawning.
I may find myself in a yawning cycle — yawn after yawn, for a good five minutes. I figure I need it. All that oxygen, all that jaw-releasing… hard to beat.
Now that my torso, shoulders, neck, and jaws are unclenched, now that I have enough oxygen circulating to let color come back into the world … now I can begin to cope.
The first thing I do, before getting up, is check my breathing. I’ve gone back to breathing from my belly, drawing air down to where it needs to go. Good.
The next thing I check is my head and neck. My jaw muscles feel softer and my neck is flexible; I give it a stretch or two each way to check. This is good.
This is a functional situation now.
Okay, I’ve done all I can. I’ve pulled myself out of the anxiety tailspin. I’ve made the next round of appointments.
As I keep telling others, don’t borrow trouble; all I can do is get on with my life while I wait for those appointments and their results. I’ll take it from there.
It doesn’t help matters that I’m worried about friends and acquaintances who are facing verified life-threatening situations. The background anxiety makes my own triggers harder to handle. But I’ve done all I can there, too. I have to accept my limits and hope for the best for them.
It’s hard to see good people being treated like disposable objects. There’s something very wrong with that.
As a historian, I know that human societies go through these cycles where the empires get bigger, the oligarchs get out of hand, and then a lot of people die as the system falls over and much is lost, and then eventually a set of new systems arise from the rubble. Eventually some of them flourish, a few emerge as empires, and the whole cycle goes around again.
I hate being in a falling-over period of history. There is so much we could be doing that does not involve ripping people and nations apart to see how much money can be made from the minions before everyone dies.
Sadly, I don’t get to make that decision. I’m not an oligarch.
I’m used to it. I grew up in places where electric outages were common. We’d just get on with our homework or reading or tending rescued kittens’ eyes or arranging little army men or what-have-you.
If it was after dark, a parent would call out calmly, “Everyone ok?” and we’d bring our projects to the living room, saving candles by having one well-illuminated space instead of five poorly-lit ones. It was cozy. Quieter than usual. Arguments rarely started when the electricity was out. It was too pleasant to spoil.
My housemates have different experiences entirely.
I live with two adults with wicked ADD. They NEED the TV. The tech-savvy one NEEDS internet. Sleep is out of reach if they can’t numb out their brains first.
I was soaking up the peace, purring inwardly with the candle glow and the outstanding peace.
No hums, no clicks, no TV, no wifi, no human-made radiation bouncing off my spinal cord and twizzling my brain with little egg-whisks.
I loved it.
Meanwhile, my two darling family members were going quietly insane.
They tried going to sleep to take refuge in unconsciousness until their lives became bearable again.
I could hear the ends of their nerves curling and uncurling, even through the closed doors.
They’d bounce up again in ten or fifteen minutes, one upstairs and one downstairs, and I’d hear them dashing quietly around in their unnaturally quiet spaces.
I sat in the squishiest chair in the living room, curled up like a clean kitten, soaking up the peace.
I’m usually more empathetic. If I could have thought of something to help, I’d have been glad to do it. Perhaps we’ll think of something next time.
At the heartless core of my practical brain, though, I found the thought that they get the evenings that make them comfortable almost all the time — only two evenings out of the past five months haven’t been fully electrified.
I only had one evening so far this winter that was great for me. I was going to make the most of it.
I stretched out in my super comfy spot and purred.
After breaking my own heart just before the holidays, and then lots of traveling and the sheer delight of swimming in the ocean of love I felt with my kin (lucky me!), and then coming back in once piece, and then a bumpy recovery period… my dopamine was pooped.
How do I know that? Simple. I lost touch with the usually easy-flowing sense of love for my nearest and dearest. I was not quite as interested in grabbing good moments to have some fun; I was drawn to sitting around, disaffected and lethargic. My mind was a bit fuzzy. It was pretty much impossible to control my impulses to buy things I didn’t need, but felt a need for right at the moment.
Dopamine (among other things) is used to make decisions, control impulses, get interested in things, be motivated, and feel the pull of love or other desires.
I experimented years ago with precursors to neurotransmitters, because I was having a hard time convincing doctors that addressing the neurochemical impact of the disease might lessen the neurological effects of the disease.
I know, crazy stuff. Such a weirdo.
I’m taking an SNRI which mostly does a good job, but I’ve been doing this long enough that I don’t want to crank up the meds as my first line of action. Meds are problematic, especially for me, so I keep them as a second or third line option, starting with less toxic options first.
I’ve learned that the meds need something to work on. Selective reuptake inhibitors basically affect the molecules that already exist; they can’t make new molecules of serotonin, or norepinephrine, or whatever; they can only push the ones that already exist to work harder.
I like to make sure my reuptake inhibitors have something to work on, rather than just squeezing the last of the juice out of what few molecules are there. I still trust my body to make the neurotransmitters if they have the raw materials, so I listen to my cravings and supplement accordingly, giving them the raw materials to make more neurotransmitters.
Craving starch and fat and sugar is a good indicator that I need more serotonin, so I add 5-HTP to give myself a solid, measured dose of serotonin precursor. Craving sugar and having protein quench the urge, is usually a good hint that I need more dopamine, so I take some nice clean d,l phenylalanine.
(Your mileage may vary, of course, but it turned out there was good, straightforward science behind these two simple self-checks.)
These are only two out of dozens of neurotransmitters, but they interrelate and often morph into each other sooner or later. So far, I’ve had good results with focusing on these two as the lynchpins of my neurochemical management.
Here’s a metaphor that parallels the relationship between neurotransmitter meds and neurotransmitter precursors. You can crank up the volume all you want, but if there’s nothing in the CD/MP3 player, most of what you’ll get is just noise. Precursors are the music media. Meds can be the volume control.
I stopped taking d,l phenylalanine a couple months ago because I was doing great and really wanted to reduce the number of capsules I have to choke down. For awhile, I thought things were fine, but I’m not sure they actually were… I made some very silly decisions.
Phenylalanine, found in processed (smoked or dried) meats and well-aged cheese, as well as in certain artificially-sweetened drinks, is a key precursor for the dopamine/norepinephrine set of neurotransmitters. It has been found to suppress pain at the spinal root, too. It’s used by some vets to help advanced arthritic pain in dogs.
My early experiments, when my neuro situation was getting bad, showed that 4 packets a day of that phenylalanine-rich artificial sweetener helped my mood and my pain noticeably. This persuaded my (slightly bemused) doctor to try me on SNRIs. Once I got onto the right SNRI, I’m happy to say I could get off the crazy chemical-sweetener version of the molecule. Suddenly the artificial sweetener stopped tasting good!
Anyway, to make a long story short (“Too late!”), I keep d,l phenylalanine on hand in case I need it for pain or brain. I started taking it a few days ago, in the morning, and I’m finally starting — starting! — to feel more human again. I started at a low-moderate dose, and gave it a few days to work its way in before reassessing.
I understand that many people shy away from these precursor supplements because medical conservatives don’t trust their patients to pay attention and notice what makes things better or what makes things worse. That’s often reasonable… when I was working as a nurse, 90% of my patients probably couldn’t tell if their feet were on fire without looking first. Most people are really dissociated from our bodies.
Moreover, pain patients have every reason to be! When you spend most of your time in some degree of agony, it takes nerve, practice, and stubbornness to check in on yourself and make note of what you find, in order to screen out or screen in things that might be harming and helping. I have to say, I have found it well worth the effort, overall.
Also, surprisingly, it makes the pain less oppressive to look it straight in the eye once in awhile and say, “I see you. I see exactly what, and where, you are. You don’t fool me. You are not my life. You are not my body or brain. You’re just something that gets in the way, and I can usually work around you to some degree.”
Now, here is the “caveat” part.
It is possible to over-crank your meds by cranking up the precursors; it is possible to generate too much serotonin or too much dopamine by taking too much in the way of purified precursors, and your meds will keep squeezing the most out of that excess. So yes, you need to be careful and pay attention if you’re going to try this. Don’t jump in blindly. Take some time to study up.
This is where your own research and self-awareness becomes pivotal. What will that look like? How will you handle it?
My first experience of serotonin syndrome came from an iatrogenic overdose of an SSRI. That was bad. But hey, I sure know what it feels like now! I back off on the precursor or med when I feel the slightest drift that way.
Personally, I normally cut back on the meds first, because they contribute more to the fogginess and confusion that makes life so sucky sometimes. This is how I handle it, because I am comfortable doing things like filing or nipping a bit off my pills to cut the dose down, and I know my body well enough to notice the effects.
Using these supplements appropriately — with all this awareness and empirical experiments on myself and so forth — has reduced the side effects from my meds while giving me much better pain control and a much pleasanter quality of life. That’s a huge benefit. Huge. Definitely worth the effort.
If you’re interested in doing this… be sure to research the possibilities; understand what the sources, benefits, and drawbacks can be; and learn to track your symptoms. When you feel comfortable trusting your mind to your knowledge and record-keeping skills, then experiment carefully to see what works for you.
I’m not going to patronize my readers by telling them not to take responsibility for their bodies and their knowledge base, but I’ll gladly remind you — as I’ve recently reminded myself — to keep paying attention. Whatever mistakes you make are as much yours to deal with, as your successes are yours to celebrate. I wish you all success.
Naturally, it’s a good idea to start small and work up until you notice an effect. These things rarely work instantly, so give it a few days in your system until you bump the dose up.
Just as with meds, go with M.E.D.: Minimum Effective Dose.
If you don’t know your body pretty well, it can be hard to figure out what deficiency or excess you’re dealing with. Most online definitions of these syndromes or toxicities discuss the extreme and life-threatening levels of toxicity, which are not helpful to those of us who are working out our supplementation and medication levels.
When I had serotonin syndrome, I simply didn’t care if I had anything to eat or if my laundry — or my body — got washed. Nothing mattered. The peace was outstanding, but the situation was not compatible with long-term survival. I didn’t have tachycardia, myoclonus, or tremors, and I only noticed my reactions were twitchy when my doctor did the knee-hammer thing.
This non-disastrous level of reaction matters, because this is where we have the chance to tune our levels and make our lives better instead of worse.
I took years to get to know my body’s reactions, knowing the time would pass anyway and I might as well be wiser for it. So I learned to be mindful and careful, pay attention to myself and my body’s signals, and do my homework on the foods and nutritional supplements I wanted to try. Everything has to make sense to me before I try it.
I don’t much care if a bunch of overpaid idiots agree. I care what works for me.
Currently, I’m on 500 mg a day and am noticing an improvement, although it’s a rather slow one. I now have a theory that my body can cache something in the chain between phenylalanine and dopamine, and the important thing to do is not to let that cache get too depleted. Once I’m back up to par, I may not need it all the time, but I need it often enough to keep my “backstock” up to par. Progress!
I’m going to go from once daily to twice daily on this phenylalanine, and once I get back to a tolerable baseline, go back down to once daily and stick to that at least through the winter. Then I’ll reassess, yet again, as I normally do every 6 months or so, and consider going down to every other day or so.
One thing you’ll discover in your research is why I use the d,l form of phenylalanine. Go on, check it out 🙂
Re-assessing meds and supplements a couple of times a year is just part of life now. Things change and I want to keep up! I can usually find an intelligent pharmacist to talk things over with, and those decades of tracking what happens to my body and mind serve me well when it’s time to fiddle my supplements, so I can take as little as possible for the best effect.
It would be all too easy to take dozens of supplements, because this set of diseases wears so hard on the body’s systems, from the intracellular organelles to the organs themselves — not to mention the nerves and circulation connecting it all. But that has its own pitfalls, in addition to the staggering expense. I stick to what works for me, and try to stay current on the theory of other things so I can give meaningful suggestions when people ask. Other people’s bodies are different from mine, and what works for one may be no good to another; we all have to be our own, not mad scientists, but sane ones… an interesting challenge at the best of times.
Wishing you the best of the new year. I hope it’s good to you.