Talking about CRPS with boundaries, perspective, and joy

I’m going through one of those periods where I’m just tired of my body hurting.

This is one of those offhand remarks that makes fellow painiacs nod understandingly, offer a kind look or emoji, and move on, but it makes normal (-ish) people with good social skills cringe and stops the conversation in its tracks.

I don’t want to make nice people cringe, and I don’t want to kill the conversation. I was recently reminded how hard it can be to avoid that while answering “how are you/what have you been doing” with any honesty. In fact, I find myself talking about most of the past 20 years in terms of not getting dead.

Line drawing of woman flat on floor, with woozles coming out of her head

Image mine. Creative Commons share-alike attribution license, credit livinganyway.com.

I think that’s a hoot, because it’s so improbable and so much against my initial setup and programming. (I have a truly dreadful hangman’s humor.)

Needless to say, most people think it just sounds grim.

My setup and programming

I’m the offspring of a diplomat and a working artist, well-traveled and extremely well-educated, Seven Sisters undergrad… until I went off-road and became something totally bourgeois and practical (a registered nurse) and, when my immune system conked out for no apparent reason, went on to become something nouveau and nerdy (a writer documenting high-end programming software.)

It was a sweet setup: good brain, strong body, great start to a useful life, good plan B when plan A failed.

Eventually, this promising start led (via surgical complications, neurological disruption, extensive worker’s comp and SSDI abuses, failures of care and denials of treatment, tediously protracted near-death experiences — a term I’m longing to refine — and years so close to utter destitution I refused to look at dumpsters because I knew I was not far from winding up in 2 or 3 of them simultaneously, like the other invisibly disabled woman of my age, build, and coloring who landed on the streets of Oakland) to my utter destruction as a professional entity.

Lead-grey statue of dark angels swooping down from the sky

That was definitely not in any of the scripts my life was supposed to follow!

My childhood friends now have their own businesses, pocket palaces, successful careers in the arts (most), policy/diplomacy/public service (some), and STEM (a few), and in raising children with little concern for whether they can feed them. I’m deeply relieved and happy for them, while realizing that my own life-path got so completely hijacked I have no idea what I’d be doing if it hadn’t been for this.

I bet I’d be complaining more, but I’d be doing more too. I wouldn’t be hurting this much for decades, if ever, and even then, only if I had terminal cancer.

Image from the Australian RSD syndrome support group, Oz RSD Forum

Terminal cancer can be a 50.
Image from the Australian RSD syndrome support group, Oz RSD Forum

Which brings us to a key point: to discriminate against the disabled is to discriminate against your future self. We’re all getting older; with more lifespan come more proofs of mortality, which include reductions of function, stamina, mobility, and even memory and reasoning.

These, folks, are disabilities, and either they will happen to you or you will be a premature death statistic. There’s no third option.

This is why, when you discriminate against the disabled, you discriminate against your future self — and all those you love.

I wish legislators had the humility to remember that. Perhaps you’ll remind them… Find yours at www.usa.gov.

Where was I? Oh yes.

Pathetic? No.

How do I talk about the last 20 years, especially the last 15, with a person who hasn’t spent an appreciable part of life dancing with Death and occasionally taking the lead?

Old-timey line drawing of a skeleton with fiddle and snake dancing absurdly with a woman trying to look away.

She looks more embarrassed than anything. Makes sense to me.. From openclipart.org.

How can I convey how incredibly marvelous it is to have a minimum of 2 functional hours — consecutive hours! That’s thrilling! — nearly every single day? And yet, I used to work 10 or 12 hours at at time for preference because I loved immersing myself in the work.

In comparison to that, isn’t 2 hours pathetic? Especially because I did very demanding work, and 2 hours of noodling around in the yard or walking around downtown really doesn’t compare.

It makes me realize how long it’s been since I even thought about the razor-wire-bound memories of “how I used to be” and “what I used to do.”

I compare only as far back to 2008-2012, the pit of the pit, the nadir of my existence.

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

Bosch knew.

Compared to that, I’m fantastic! Being fantastic is a great thought!

Being at maybe 10% of my youthful vigor is actually amazing, because during that time, I went from being so close to dead it took 25 to 30 minutes to drag myself, fist over fist, all 6 feet from my bed to the other end of the settee, to feed the cat in the morning. I think that level of function (or nonfunction) is a percentage of my youthful vigor that’s several digits to the right of the decimal. It felt like a negative number, that’s all I can say for sure.

There’s nothing I can do about the past, only the future. That’s not pathetic, it’s just life.

Actually, I feel that way about most of this chronic-illness gig. It’s not pathetic, it’s just life.

The power of “use it or lose it” as a tool under your control

The trick to living with chronic illness is twofold:

  •  Figure out what it takes to manage your illness without letting it take up all your focus. It does not belong in center stage, or not often anyway. Life belongs in center stage. Figure out how to make it so.
  •  Figure out how to have a routine, some sort of rational approach to every day. It’s all too easy to lie back and let the world go by. Speaking as an old nurse, I know the immovable truth of the old adage, “use it or lose it.” Having a routine stabilizes the body’s coping mechanisms; knowing what to expect soothes the central nervous system and simplifies healing. So, make a routine; decide what happens next. Make yourself do things, alternating activity and rest. Use your body, use your mind, rest, then use different aspects of your body, different aspects of your mind, rest, and so on.

These two strategies allow me to make more room, more time, and have more attention, for joy.

Joy is not a luxury; it’s essential to proper function.

The gut, brain, immunity, everything, are worse off when there is no room for joy. Whether I can appreciate my partner, the sunshine, a lolcat, whatever, I grab each opportunity for a shot of delight. I call those bursts of joy “brain juice”, because they boost useful neurotransmitter patterns and, cumulatively, reduce my pain and improve my function.

Bit by bit, even as age creeps up and new issues arise, I find myself better and better able to make use of what I still have. In fact, over the last year, with safety and sanity finally framing my existence, I’ve regained an amazing amount of function. I’m so pleased! (Oo! More brain juice!)

I still don’t know how to explain this to a normally healthy person without sounding like something from another realm of existence.

Different is probably fine

Perhaps I am from another realm of existence.

I’m certainly from another realm of experience; longstanding profound illness is special like that.

Perhaps I simply need to get over this idea that, just because I’m back home or just because I’m talking to someone who knew me when I was an arrogant young jerk and saw beyond that to someone worth liking, I should fit in with them.

Perhaps I should have more faith in myself to be interesting and likeable enough to shine through even the CRPS. I clearly shone through the old arrogance and jerkiness, somehow.

I’m far less confident, eloquent (in person), and humorous — at least, less intentionally humorous — than I was in my 20s or 30s, but I’m a whole lot more confident, eloquent, and (occasionally intentionally) humorous than I was a few years ago.

So, I need to remember to keep my focus relevant, and not think too far back.

Emotional boundaries: My pain shouldn’t be your pain

There’s a trick to disclosing without wounding, even when what you’re disclosing is tremendously difficult. Good boundaries are key.

You may have noticed… people tend to pull away from pain. It’s an ancient reaction that happens in the most primitive parts of our central nervous systems. That means, when we’re too raw about our pain, others may pull away from us because that primitive response combines with their emotions around pain, and our pain makes them hurt emotionally.

I remember how I used to open with the idea that my pain is my pain and others don’t need to imagine it or take it on.

Sysiphus looking miserable as he pushes a rock up hill... with poor body mechanics.

We each have our own load. I’ll keep mine; it’s my job.

This approach of “it’s not your pain, so let it go” frees many people up to re-engage from a rational distance which works for both of us. It’s important to give others the distance they need, because then they don’t feel a need to pull back further to protect themselves, and can stay in contact. They don’t feel driven to pull away from all that pain.

Each of us, well or ill, has to carry our own load, and really isn’t equipped to take on others’ loads as well. I try to remember that and respect the loads of others. It usually works out well.

Come to think of it, it’s essential to relationship maintenance.

Taking it on vs. bearing witness

When I was a nurse, I dealt with harrowing human experiences all the time. I could handle it with real care, and go back next day and do it all again, because I was clear that my load was my load and their load was their load, and the most healing and empowering thing to do for another person is to bear witness to their struggle without trying to take over. The one with the struggle is the one best qualified to find their best solutions; having that implicit faith in them, I found, is tremendously powerful.

For those of us in dreadful situations, we don’t get to choose the reaction others have to our struggles. All we can do is try to back-lead, essentially, guiding them tactfully to a more comfortable position.

Allowing well-intended people to bear witness in a safe way is a natural outlet for the sympathy and compassion evoked in decent people. Letting them get sucked into the awfulness doesn’t help anyone.

Put that way, it’s a lot more clear to me. It’s another form of radical presence/radical acceptance, a mental tool which boils down to, “Things may suck right now, but here I am, it is what it is, and this will pass.” Try it — you’ll be amazed how much mental energy it frees up.

The approach for discussing my illness with others may go more like, “It sucked then and it sucks now, but the worst suckage is behind me, it gave me great opportunities for growth and I took ’em. At this point, I’m better at looking ahead than looking behind, and hey, I’ve got interesting projects going…”

So, first I should clarify the needful boundary between my personal load and the rest of the world, and then I can discuss all this with some detachment from the gluey-ness of remembered distress, unbelievable losses, and intransigent pain, and best of all I can point the conversation towards something much more positive.

I’m still not sure exactly how to do that, but I’ll practice.

I’m definitely better at looking ahead!

view forward from deck of sailboat. Mainsail on right, jib on left, Marin headlands and Golden Gate visible between.

Image mine, share-alike attribution (livinganyway.com) license, C.2015 :-)

Well, I don’t know about you, but I feel a lot better about this already. I’m grateful for your company as I figure out my rubric for yet another tricky twist of the Rubik’s cube of life.

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Doctor appointment optimization

Here’s my Doctor Appointment Optimization strategy. This is especially important for new diagnoses, new doctors, and any significant change or comcern you have.

– Between now and your appointment, keep a pad handy and note down anything you want to find out when you see the doc.

– A day or two before the appointment, set up your documentation. Lay those questions out so you have room to write the answers (in printout or on a notepad, whatever works for you.) Also, if it’s relevant or might be helpful, make a current Snapshot to show the doctor. Make copies of whatever science articles or studies you want to share.

– If it’s a first appointment with a new doc, also print out your current Timeline and previous Snapshots so he or she can absorb your info more accurately and easily. Put them where you can be sure they’ll go with you to the appointment. (Consider faxing them ahead of time, with a cover note asking to have them put in your chart. The doc can then review them ahead of your visit. There are benefits either way.)

– Let the doctor lead the appointment, because they find it easier to be forthcoming, but let them know you have a list to check against before leaving. They like that balance as a rule, because they want your need for info taken care of, but need to feel free to do things their way too.

– It’s your appointment. It’s their job to do you, and your case, full justice. Ask, and keep asking, until you feel you understand the answers.

– Write everything down, because the brain flips a switch when you leave the office and it’s amazing what you can forget.

– Get as many relevant printouts as possible before leaving.

– This is key, an enormous time saver in the long run: Go over your notes and handouts once you’re out of the office but before you pull out of the lot. Just take 5-10 minutes to sit down and go over everything, complete unfinished sentences, tie things together, fill in details you didn’t capture right away.

– When you get home, put your stack by your chair, get something to drink/eat, recharge your brain.

– Pick up your stack, pull out your computer or a pad, and put everything you’ve learned and acquired into a plan of action.
What are the most important things you got out of today?
What is the next thing to learn?
What is the next thing to do?
Are your next tasks and appointments on your calendar yet? (If not, do that. The ‘overwhelm’ tends to short circuit common sense. It’s pretty normal, so you might as well plan accordingly.)

– Once your calendar is updated, your to-do list is laid out, and you know the keywords you’ll need for further research, you’ve digested the appointment pretty well. So, get out your Timeline (which of course you have, or, if you’re new to having a chronic condition, you’re about to start) and fill in a new row.

The point of the pre-departure review is twofold:
1. It gives your brain exposure to the info outside the office, after that switch flicks in your brain, but before the info in all its rich detail gets dumped from your short-term memory.
2. With that second exposure helping secure the wealth of detail, it signals your brain to start working on creating networks between the new info and older info. This not only helps put your own situation in perspective and improves your base of knowledge, but it sets off a cascade of subconscious activity of a very helpful kind, destressing the situation and helping you get on top of your condition.

If this looks a lot like great study skills, there’s a reason 🙂 Chronic conditions require study so you can make better decisions on the basis of better understanding. This is definitely, fully, 5-star, hayull-yes, one of those things where the upfront additional effort (which honestly is pretty trivial) pays off a million times over downstream… in easier life changes, less trouble over choices, fewer complications, more time to spend on having your real life.

Speaking from way too much experience, it’s worth it!

May all your appointments go well and all your doctors be excellent.

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My gut has a mind of its own

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.

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The third toughest job

While I’ve been absent from the blogosphere, I’ve been pushing the rock of life further uphill. I’m cautiously optimisitc about getting it to the top and watching at least this particular tedious weight roll off in a new direction, eventually.

Being safe, having survival assured, and being surrounded by loving and trustworthy people was the biggest part of it. For the tools that I can control, it was just what your grandma probably advocated: eating good food, drinking good water, and getting fresh air with a bit more exercise than I really wanted to go for.

Food:
With neuro disease, our bodies need more nutrition than our diets can possibly provide (especially when our guts don’t want any), but our supplements go down a lot better and get absorbed much more usefully if we eat well. I used lots of wild blueberries (dense little packets of brain-repairing anthocyanin antioxidants, yum!), a variety of hard cheeses (2-year-old cheddar, 15 month manchego, and 1 yr English goat cheddar, in my case) for the brain-boosting natural phenylalanine, and fresh leafy veg as close to every single day as the two of us could manage, because they are so good for everything.

Water:
We have artesian well water. It. Is. Outstanding.

Air & Activity:
I asked J to nudge me into getting some exercise every day, if I didn’t get onto it myself. That’s easy for him, because he too likes to get out and get into the open air. On bad days, I hold his arm and go anyway. On really bad days, I go slowly. But I get out, walk on the burning coals under my feet, and keep walking out until my feet stop spasming, then walk back. Sometimes that’s over a mile, but the thing is, I find that if I walk long enough, with enough breaks and the right footwear, I can knock back the pain and spasms — not to mention the frame of mind that tends to go with them — well enough to brighten up the whole day.

So.. I can think! Amazingly often!

I wrote a BUDGET last week!!!

It wasn’t entirely in the right direction, but I figured out how to stay (just barely) in the black. BRAINWORK FTW!

So, with that incredibly awkward seque, here’s the hot issue.

It’s a topic that is all too pressing a reality for people who’ve had their butts handed to them by a disability that affected their ability to work, and then destroyed their means of making a living:

Credit repair.

That’s right, ladies and gentlebeings, I am tackling the third toughest issue (right after 1. survival and 2. getting responsible doctors): 3. working through the PTSD, ADD, anxiety, brain fog, and intermittent dyscalculia which this brain disease and its financial consequences have caused, in order to get my credit rating back in the black.

I have barely been able to look at a spreadsheet for years, due to the numbers dancing around like a hallucination. Dada via Josephine Baker. Just unmanageable. But I can look at one almost every day now, and it’s amazing how easy it can be to push those numbers around intentionally!

I’m glad to be able to take this up. More on it later, with numbers to call and strategies to take for rational results.

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Music lit me up and doused the fire

Okay, this is weird… good weird, though.

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. 🙂

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Battle for the Brain

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.

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A word on oils and fats, collectively called lipids

A healthy person needs a lot less than a painie; women need a slightly higher proportion than men. Recommendations are based on healthy men. Think that over for a minute, painie women…

More and more science is discovering the link between longstanding pain disease and demyelination, that is, the protective layer of fat around certain nerves. Without that protective layer, the nerves can’t work right and rapidly get very sick and sore.

A healthy person can maintain myelination on a normal diet. That’s great for them. It’s why we call them normal.

We have a lot more demand on our myelination. We are playing a different numbers game than normal people. Normal diet is not necessarily right for us. A low-fat diet does not necessarily support myelin enough for those whose nerves are as heavily besieged as ours are.

We benefit, more than most, from staying away from poisonous fats, like hydrogenated fats and conventionally-farmed flesh foods and farmed fish. They can really push the poisons into our sensitive systems.

We need, much more than most, to get cleansing and healing oils and fats of all kinds:
– from omega-3s in fresh vegetable oils (avocados, olives, sunflowers, nuts, seeds) and wild fish (salmon, sardines, cod, menhaden fish),
– to the medium-chain fatty acids in cocoa butter and coconut, both of which are wonderful to cook with (vegetables sauteed in refined coconut oil are outstanding),
– to the naturally saturated, artery-*cleaning* fats in 100% pastured dairy (cheap source: Kerrygold butter!) and other flesh foods raised according to their genotype (scratching poultry, rooting pigs, pastured herd animals, etc.)

*Fats and oils are necessary, in the presence of ongoing nerve damage.* They provide mechanical, physiological, and anti-inflammatory support to the beleaguered nerves. Lack of adequate lipid intake can worsen the nervous system’s situation, which has knock-on effects on the metabolism, cardiac system, digestion, endocrine signalling, and so forth. The nervous system drives every system in the body; without adequate support, it can’t do a good job. Very simple.

When I first got knocked down by CRPS, I couldn’t lose the sluggish-digestion-related extra weight or improve my functional level, until I raised my intake of healthy lipids to about 2.5-3 times what the recommendations said. Once I was getting enough of these neuro-protective and anti-inflammatory ingredients, my metabolism went up, my pain and clothing-size went down, and everything got significantly better.

The temptation then is to overdo, which still helps reduce pain at the time. Half a tablespoon of grassfed butter is better than a pain pill for me. Unfortunately, it was a high-pain winter, and I used it several times a day. That created a much bigger body than I can manage, and that puts more strain on my joints and bones. I’m working on that right now. I definitely overdid the pain-reducing foods through all the activity around moving and travelling my first 6 months here. I’m about 20 pounds down, but it won’t really show for another 20.

We like to eat serendipitously — it’s natural, and harks back to when we ate whatever was around: apples, berries, tubers, mastodons, and so on. Unfortunately for me (as it is for many spoonies), I have to be very thoughtful about what I eat. As my brain gets clearer, it becomes easier.

It’s too bad, because I’d love to be thoughtless and festive about food once in awhile, but I’ll have to be content with being thoughtful and festive instead. It works better.

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What does it take to seize a difficult life in both hands?

This disease, like time and life, dips and dances but tends to go in one direction. As long as it doesn’t outrun my ability to adapt and amuse, I can put up with that. After all, we’re all born with a one-way ticket, and sooner or later we have to get off the ride. Not all of us get a chance to prepare for our exit, or even get much warning as to what it will be like.

In my first nursing job, on an HIV unit in the very early 90’s, I had a Mexican soap opera star as a patient. He was lovely, in every way.

Head shots of Penelope Cruz and William Levy

If you can, picture a cross between these two. That was this guy. And really sweet, too.

This was his first hospitalization with the disease and he hadn’t found his particular polestar, the thought/idea/perspective that would keep him determined and alive for however long he had. He was a lot of work emotionally, needing much encouragement to keep trying new treatments (and they were very new back then) and to keep eating even when he didn’t feel like it and so forth. He had been in for a long time — over a week.

One day, while I was setting out some medications for a complex patient who needed his meds punctually, and didn’t have time or attention to spare, the soap star came mooching up to my med cart in his hospital gowns (one in front, one in back) and huge, lustrous eyes.

With what attention I had to spare, I thought, “go away, come back later” as hard as I could. Didn’t work that time.

He said, as he’d said before, in the same miserable tone as always, “I’m going to die.”

Sysiphus looking miserable as he pushes a rock up hill... with poor body mechanics.

“It’s a big weight.”

Up until this occasion, I’d stop what I was doing and gave him a full minute of attention and cheer him up a bit.

I didn’t have a minute right then. I had maybe two seconds. “Everyone’s going to die,” I said, barely pausing in my dosing and calculations.

girl on a flat beach kicking a ball high

“Maybe it’s only this big.”

Long silence next to me. I kept doing my job. (Keep in mind that nurses are paid to dish meds, not counsel and encourage struggling patients. That’s all that the staffing patterns allow.)

Then, in that delicious accent, a voice like the rising sun announced, “You’re right! Everyone’s going to die!”
Stone angel with hands clasped in prayer, standing on a pillar, sun like a glorious halo
I heard him drift back to his room, muttering in wonderment, “Everyone’s going to die… it’s not just me,” and I smiled to myself. I wasn’t usually rude to patients, but it sounded like it was exactly what he needed.

My other patient got his meds on time. So did the rest. At dinner that evening, my soap star sat up and devoured every bite, beaming and bouyant as we had never seen him. I began to see what all of Mexico had fallen in love with. He was discharged next day, full of fight and life again.

Somehow, that brutal realization — that everyone dies, that being doomed to death isn’t special — was what he needed to break the spell of misery that his diagnosis had put him under. He had staggered in a broken boy, and he walked out a free man.
Man_walking_EMuybridge
I don’t understand it either, but it sure worked for him.

Perhaps I do understand, at least a little. My experience with that revelation goes a bit further back, though.

I had a book of rhymes when I was little. Most were delightful,  but there was an old one about a sick little girl that contained the lines,

“Doctor, doctor, must I die?”
“Yes you must, and so must I.”

old engraving of a doll-like child lying down, a grim-looking woman in robes looking down unfeelingly on it, a child skeleton hanging from a pole. So hokey and grim it's funny.

Makes you feel all warm and fuzzy, eh?

I went through a jagged 6 months when I got to grips with the meaning of that (plus, I thought it was a rotten thing to say to a sick little girl.) My mother got tired of assuring me I had never been nearly sick enough to worry about it and, on further questioning, assuring me that she and Dad wouldn’t pop off for a long time yet, and I’d be an adult and able to handle it.

Later, I vaguely remember looking around at a sunlit day, seeing my brothers and friends playing in the sun, the leaves of my favorite tree fluttering in the breeze, and knowing everyone would die one day…
Old Chinese painting of 4 children, in voluminous clothes, kicking a ball around.

…but not yet.

Now, we were all alive and together.

Better grab it! Yes!

A smile pushed up through my whole body, and I went out to play.
glee
I think that’s when I first began to understand the difference between being a spectator of life and being a part of it. That realization was rooted in knowing that it’ll end one day, and I didn’t want to miss out on whatever it had to offer in the meantime.

Perhaps that’s what my remark to my patient did for him; but, being older, he could process it in 6 seconds, rather than 6 months. Everyone dies; but right now, I’m alive!

Cats are masters of pa:ng :)

for lifelong celebrations!

I could be wrong, but I think my insistence on being a part of life is a big piece of my adaptability, not only to this wretched bouquet of stinker diseases, but to everything.

What do you think? I’m curious if there’s a link between knowing death and survival, between a lust for life and adaptability. I’m not talking about Norman Cousins’s ideas of exceptionalism, but of an ordinary, grubby-handed greed to be in this thing called life, warts and all. What does it take to reach that?

This might be the question that shapes our future ideas about adaptation and resiliency.

I’d be fascinated to hear from others on this.

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Fixing the brakes

Interesting week here.

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.

Diddly-squat doubleplusgood.

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.

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Make room for joy, especially when it isn’t easy

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.

"Lovely flower, ladies!"

“Lovely flower, ladies!”


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.
me-fingers-2up
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.
clouds_water_calmBay_web
Maina at sunset, with masts sticking up and reflecting down, both water and sky streaked with yellow, orange, gold, and purple clouds
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.
St._Johns-wort_(Hypericum_tetrapetalum)_(6316227601)
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.
full moon clearing clouds over illuminated Bay Bridge, all reflected in the black 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.
glee

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