Controlling my descent

Admittedly, this might be one of those posts that I think is wonderfully uplifting and informative and positive and yadda yadda, and normal people have to call a therapist after reading. If it weren’t for my fellow painiacs, and the otherwise-normal people who love me and want to know how things are going, I’d probably have abandoned this years ago.

I started out blogging for myself, because I was driven to; I’ve mostly written it as a “non-scientist’s guide to living constructively with this” for the benefit of painiacs who don’t have my medical and communication background; and I’ve wound up writing purely for others, because I’m (very sweetly) obliged to. My high school English teacher quoted that freedom is choosing your chains, and the obligations of love, mutual care, and friendship are wonderful chains — if that’s not too much of an oxymoron. (Personally, I find the image a bit eye-watering, but different strokes for different folks. I’ll try to remember to think before I choose a metaphor.)

However, that’s not what I sat down to write.

Not long ago[LINK], I was in a tailspin about how to manage winter in this body, which is inevitably a bit tiresome (oh look! A flash of humor!), and looked like being more so than ever this year.

I found an old, simple, eliptical trainer by the side of the road that had a stride as short as mine now is. Huzzah! Got it home, and have been using it to work my way gently out of this exercise intolerance. I’ve gone up from 3 minutes 38 seconds, to 4 minutes 40 seconds! And that only took a month. (Look, another funny :))

I have to stop just at the point where my blood gets going and it just starts to feel warm and wonderful. That’s right, I have to stop before it gets really good. If I don’t, I wind up in a slow-motion collapse onto the sofa or bed, and have to really work at it to keep the usual disciplines of getting a shower and food and toilet trips. Since that means that appointments and groceries may not happen, it’s kind of a big deal.

I assure you, many people live like this.

For me, it’s the cardiovascular activity I have to be careful of. The annoying peripatetic noodling-around of errands and driving don’t wear on those mechanisms (though driving wears hard on my attention and I can do, at most, 3 stops for errands before my brain and spinal relays pack it in for the day.)

As I was flailing through the fog of the past month or so, my entire pelvic girdle (hips, low back, tailbone, all the joints involved) decided to lose their cool. Quite literally. I’d be putting my magic goop on the icy skin over my hips, which most women have, and my hand would go over two wide ribbons of fire over my sacroiliac joints, with zapping spicules at each disk, and great squanching bolsters of “eff you, kid, you are NOT sitting on us” right on my sit-down bones. Not cool at all. (See what I did there?)

Much physical therapy and massage therapy happened. It took awhile, but finally, some stability began to re-emerge. I asked my PT how to keep from getting off-kilter again, and she said, “It could be anything: stepping too hard off a curb, carrying heavy things off-balance. That new car of yours could be a problem.”

Ah, the car. There is a story about the car. And what a story it is! So much of a story, in fact, that it’s going to have to wait for its own blog post. It might be right up there with “Intestinal Fortitude”[LINK] for sheer WTH??? But, luckily, I wound up with a good solid vehicle that mitigates everything about driving that a vehicle could possibly mitigate. Unfortunately, it’s easily 4 inches higher off the groudn than the last one.

Talk about stepping off a curb too hard.

I also thought about the eliptical trainer, which I hadn’t been using very mindfully. I lurched from one foot to the other, and I know my hips were taking a wrenching, but I was too daffy to notice. I just, strangely, couldn’t improve my time. I wonder why!

I remember a PT 11 years ago, in my first Multi-Disciplinary Functional Restoration Program, who worked with all of us to “control your descent,” meaning, don’t just plonk your foot dodwn and crsh the rest of your weight onto it; lay your foot down, roll on in a controlled fashion, and whoa, suddenly life gets a lot better — until you forget. Real built-in motivation, there.

As sometimes happens, I stood there for a moment, staring past my current PT’s left shoulder, feeling the idea burst upon me and wash through all my current struggles: loss of partner, loss of help, added responsibilities in the house and for a cat, aging in winter with a rotten set of diseases, new injuries, etc, etc, etc,

Control my descent.

Don’t lurch onto the next step and come crashing down on it.

Stay mindful of each more; it pays off immediately.

Well, that has helped enormously!

It’s elegant and genteel, two words I never cherished but now find strangely redeeming, to pause and collect both legs before exiting a vehicle, and stepping down gently.

Believe it or not, I don’t have to do everything NONOWNOWNOWNOW. That was a tough nut to crack, but I did it with the hammer of “control my descent.”

I’ve gotten cushions I recommended to a friend with a tailbone injury [LINK?] for myself, and everything I sit in is loads better; I can rest.

As for plopping into chairs, that has gone the way of hopping out of my car; still happens once in awhile, but instantly regretted. I control my descent.

The ice and snow are doing interesting things in the driveway, and it will get dealt with, but since my amazing vehicle doesn’t mind, I have the time to prioritize and deal with it when I can do so properly. (I might get a plow attached… that could pay for itself in a couple of years, given my usual fortune/skill at shopping for bargains and finding friendly neighbors who’ll do things cheaply.) I can control the descent of that resolution.

It’s nice not to be crashing from fire drill to inferno. I’m coming back to myself — the practical, quirky-clever, loving little dingbat that still lives on under all the messes I’ve staggered through over the years.

I like the dry, mechanical nature of the image of “controlling my descent.” It gets quite emotional enough in here, I don’t need to rock the boat any more by trying too hard to push the perkiness; it’s healthier for me to just calm the upheaval. I can’t stop life throwing me up in the air sometimes. However, I can usually do something to control my descent.

Time check: must go, in a controlled and pleasantly mindful ashion, to my next appointment. I will try to remember to insert those links and maybe add some pictures afterwards. Feel free to nudge me… because I know I’m forgetful, and I can ask my friends for help  🙂

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Service animal in training

So, here she is: my little fuzzbutt of curiosity, in a mellow moment.

Photo: Laurie B., who’s also an excellent dj.

I told my pain specialist about her, as follows:

She is turning into a service pet already: when I hurt myself, she comes and brushes against it, providing a good sensory input to help me push back against the wa-wa of pain. When I’m upset, she stops what she’s doing and comes over to comfort me, so I don’t go so hard into my body’s “autonomic fuss”: color and vital sign shifts, sudden weakness, persistent nausea, emotional instability and pain, etc. She licks softly on the most numb or paraesthetic bits: my toes and wrists. She’s extremely well-behaved in public, handles being in the carrier pretty well, and is adapting to being on leash.

We’re working on the concept of when it’s time to sleep. Those of you with cats, I heard that sardonic laugh. However, I’m feeling relieved and pleased once again that my training techniques are paying off.

I do two things, which I haven’t read about much:

1. I think about what I’m saying. House pets read emotional and mental states extremely well. Probably because of this, I find that speaking to my fuzzy-butts in plain English, and halting my internal chatter to notice and mean what I say when I speak to them, is extremely effective. “It’s like they understand every word.”

2. Wow. Can’t remember what I was going to say for the second thing. That’s embarrassing. It’s like I have pain brain or something. Just like!

So, anyway…

Last night, she was bouncing off the walls at bedtime. Sigh.

I put on the classical CD I play to let her know it’s time to settle down — twice. (Mstislav Rostropovich and Ytchak Perlman playing something deliciously calming.) Usually, that knocks her right out. Better than Valium. Not that time, though. Did I give her extra vitamins?

As she pinged around my legs, I scooped her up and explained sincerely that it’s time for sleep. She paused briefly, all furry and cuddlesome, then went “nah, but thanks” and squirmed off.

I gave up and trundled off, flared limbs throbbing, head lolling with weariness on my sore neck.

I climbed under the covers, arranged my pillows, read my “bedtime silly” book for 5 minutes, and realized I needed some autogenic-training meditation (those are the ones that include, “your limbs feel heavy and warm”) to get my feet and lower legs to warm up enough.

I ignored the squacking and mooping noises (she has quite a vocabulary) from the next room. My limbs were finally getting warm.

Then Miss Thing popped up, literally, and let me know we were going to sleep now if it killed her. O…kaaaayyy…..

She made deep biscuits, pressing hard but still not using claws, first on my right shoulder, then on my right forearm, then on my left shoulder.

Then she turned around once, slapped her head down against my pillow, and conked out, her purr fading into sleep almost as soon as it started.

OMG the cute. Much brain juice. So impressed, too.

Did you notice — she zeroed in on the key spots that triggered my condition. She went straight to them. I have to spend hundreds of words explaining these points to humans; she just dialled straight in.

She is definitely my Service Cat.

Just need to help her get calmer in the world outside, and be old enough to develop a little more poise in the face of the unexpected, because always behaving well in public is a key part of Service Animal requirements — and that amazing little fur-girl will be all set.

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This is not a triptych

I’m a writer; I think in terms of story. I assumed I’d have some definite third stage of recovery from that breakup, but no, just more process.

Not just the emotional work of disentangling two mingled lives and learning how to be in the same room and hold a practical conversation in civilized tones, and not give in either to the huge love or the awful rage.

There’s the special spoonie stuff, brought to me by CRPS/fibromyalgia/dysautonomia/Hashimoto’s disease. Learning how to get everything done every hour of every day of every week, with little help, no encouragement, no prompting or reminding that I don’t think to set up myself on that increasingly irritating & necessary phone, no underlying love to smooth the steps out or to rest in the soothing of, between efforts. With winter coming on, there is SO much to do. He has come over a couple of times to help with that. How do I say thank you without weeping?

I noticed when we first met, before we were ever lovers, that my pain and brain fog dropped when he was within about 16 feet of me. Once we were partnered, that symptom-suppression held pretty much all the time.

So now, I’m doing all this with an additional physical burden of pain and, dear heavens, so much brain fog.

It’s a process. It’s a two-steps-forward-one-step-back process… and, frankly, those are pretty boring to read about.

So yeah, it sucks. And I don’t get to stop working on it. Spoonies rarely get breaks, and never get vacation time, from being sick.

Onward.

I got a cat. She’s just over a year old, and came to me not knowing how to eat. (The irony is so thick you could cut it with a knife.) The first couple days, her hip bones kept getting sharper. A mini dog came over and showed her how it’s done. That was the first big bump forward. Her hip bones are marginally less sharp now.
She’s beginning to learn that that “I waaaaant!” feeling means she’s hungry. I don’t know how she lost track of that instinctive message, but she would sidle up to her bowl and then skitter away with a little flash of anxiety.

Drama is emotionally seductive and magnetic, especially to the young. So, that exciting pattern needed interrupting. I took up her food for hours, so there was nothing to sidle up to and skitter away from. At first, I held her bowl down to reassure her, but as she gets more settled and secure, I leave her to it once she gets started, and stay quiet so as not to distract her. I spent the usual cat-lady hours finding food she liked. (She’s definitely my cat: she likes real food, not Friskies.)

She’s quite a beauty — flared cheekbones, cute little nose, huge eyes with heavy liner, a charming overbite. A bit like Geena Davis, but with whiskers instead of dimples.

I’m taking her out with me everywhere. She gets along with everyone, having met eight cats, three dogs, two squirrels, and any number of people, with roughly equal aplomb. She’s turning into a service pet; already, my increasingly sluggish reflexes (which have given me some scares while driving) are slightly less bad. Wand-toys FTW!

Time to get on with wrestling the requirements for another day into a set of hurdles I can probably clear.

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A week on, slightly shocky but keeping calm

Those of you who’ve been, been with, or treated addicts won’t be surprised to know that J’s story changed 3 times in a week, but I didn’t fall for it. He has not tried to come back, did not go to the deadly place, and is taking care of himself rather better than might be expected.

The fact that he’s not imminently in danger is a huge relief, actually. I can handle breakups — I just can’t handle mortality.

I looked back at my previous post and got a huge laugh out of the fact that I opened with one sentence regarding a life-shattering event and went straight into the nerdiest possible fugue about meds, care, and therapies that are affected by it. I’m not sure of the distinction between nerd, dork, and geek, but I’m pretty sure I’m all three, and that’s okay with me. The doc I sent that letter to is the brainiest of those, whichever that may be.

The feelings washing through me are as varied as you might expect. There are some ways I feel freed up — I finally got to rearrange the living room furniture, and it’s a vast improvement. Nobody to get all tense and cranky about moving his sofa location. I look back no the ways I’d just stopped making room for myself because it was easier than arguing. The last year and a half was a downward trend, the last year pretty bumpy, the last few months really rough, and the last few weeks we were together were frankly awful.

That, I don’t miss.

What I miss is that where he was, was home. I’m homeless in one sense, because he’s homeless in the literal sense. (He sure enjoys the camping, though.) I rarely had to scold him for anything because he could hear me yelling at him in my head; he’d give me the same pissy look my cat used to give me when he was scolded, and make the adjustment I wished he’d make, with no more than 5 soft words exchanged. He literally read my freaking mind.

I don’t know what he’ll do when the weather changes. Not my circus now. He’s facing the consequences of his own decisions, and one is that he has fewer, and at this point less attractive, options.

I found a person who knows how to get me signed up for things like help with the dishes and laundry and vacuuming, rides to my medical appointments, and other logisstical needs. The shuddering absence of J has left me with arms so overused and attention so wrung out that I had trouble driving safely home today. I actually missed a turn on a road I’ve taken uncountable times. Not reassuring, that. Fortunately, it was easy to correct.

As I explained to my passenger: I can pay attention to the road and obstacles around me, and I can control the vehcile I’m driving, and do both confidently; the rest, like where to turn, is a bit iffy.

The physical consequences crash on, no matter how calm I can keep my mind most of the time. The tearing, strengthless feelings in my hand tendons is pretty scary. My ashtma is acting up, a consstant background pull. I guess I’d better raise my antihistamine dosage, and make an appointment with my rheumatologist to look into that.

The emotions ebb and flow: bouts of anger, so seductive but I refuse to cling to them … I let them roll through and roll away; irritation; lovely memories; wry humor; noticing things he’d like; gaping wounds of loss; grief; the endless wordless cry of a mature heart that’s broken, like a descant that never stops. I let them roll through. I’m an old hand at loss. The trick is not to hide from them, and not to cling to them. Look at them, one by one or five by five as they come, and see them for what they are. Then let them go. Not easy, but so worth it.

Task focused is good. I have things on my schedule and things I have to do. I pay attention to the next task. It really helps. It’s okay to stay out of emotional space, something I didn’t used to know. It’s absolutely okay not to go prodding that open wound. I can work around it.

I was cooking up a frozen Indian dinner on the stove, anything further being beyond me and microwave dinners being disgusting to me (except rice-pasta mac and cheese, for some reason.) I sat there, stirring it gently, and taking a step back to look at the whole picture.

Aspects of my life are better. There’s no arguing, for one thing. I’m seeing my friends more.

Aspects of my life are harder. I have more creative impulses but less ability to do anything with them. The logistics of getting through the week are awful.

On the whole, my life is definitely worse without J in it. His jobs can be done by others, but the whole blooming warmth and joy and peace that he brought with him, until he gave into the “stinkin’ thinkin'” of addictive-mind, is gone, except in memory.

Having said that — having looked squarely at that — I let it go.

I remember the time I decided to give up on repeating my mistakes. It was at my first nursing job, on the HIV unit. I realized, imperfect person in a tough high-stakes job that I was, that I was probably going to make mistakes. I made an agreement with myself not to repeat them, but to pay attention and learn, and when I screwed up, to figure out how to avoid doing that particular thing again.

I waited too long for him to do what he needed to do to get better. He’s not going to do that unless and until he decides, and — here’s the not repeating mistakes part — he has no place here unless and until he has well begun that arduous journey.

Whether he takes it or not is not up to me.

Not my circus any more.

Time to have that dinner and watch a silly movie.

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All. That. Love.

Straight into Coping Mode.

From letter to my doctor

Dear Dr. S,

Big stress here: my partner and caretaker went off the rails and has broken up with me. (I’m staying with a friend while he packs and leaves.)

My best response to stress is to work. Being unable to focus mentally, that was outdoor work: small scale yard work. Thursday, an amount of labor that would normally be marginally too much but recoverable, resulted in me vomitting and becoming prostrate for 2 hours and set back in my physical capacity, through the present. Fortunately I did get to that afternoon’s neurological PT appointment.

I also had a showstopping muscle spasm in my left neck/shoulder. I thought the yard work would work that out, but it probably contributed to my collapse.

Physical care:
– PT course has been extended.
– Massage weekly instead of every other week, maybe more, per opinion of LMT when I see her.
– Hot tub spa time. My sense of heat perception is blunted, so will do this with friends for safety.

Savella:
– Optimum dose of Savella stabilizes my GI activity with no or trivial additional nausea. Due to that n/v, I felt it best to back off on Savella, despite the increased instability in life & my neurologic behavior.
– Went from 50+12.5 to 50mg Savella BID, as of Thursday evening.
– Nausea has reduced and ability to eat is returning, not yet to normal but gradually getting closer. Able to keep blood glucose functionally adequate. I attribute >90% of this to stress, while not exacerbating n/v with increased sensitivity to Savella GI side effects.

Zoloft & psychiatry:
– In the lead-up to my ex’s meltdown, I’d increased Zoloft (in consultation with my mental health provider and prescribing PMD) from 50+12.5 mg to 50+25 mg. That remains the same.
– I’m in the queue to see a medication psychiatrist in a couple of months.

Spasms:
– Mg chelate up from PRN to 500 mg BID from Thursday until this morning; however, prodromal twitches starting again, so will continue it BID for now, retest every few days, and keep Carafate on hand if gastritis starts up again.
– Avoiding CNS depressants d/t affect fragility: no antispasmodic p.o.

Pain:
– I’d recently experimented with curcuminoid supplementation, and found that 300 mg of the 95% extract BID (which is 1.3-2x the recommended dose) plus at least 2gm of unextracted turmeric, provides best cost/benefit tradeoff.
– I find that, with the lower Savella, being an hour late with this raises pain levels distinctly, as there’s less pain control on board. So it’s now part of the routine.

CNS care:
– Working hard on emotional regulation, reiki (which really helps me with stabilization), and maintaining activity at a sustainable but persistent level.
– Less diligent about my sleep/wake schedule, which would be an exercise in frustration.
– More diligent about everything else (pill punctuality, mindfulness & “radical presence” practices, taking care of relationships, pacing & activity, diet, toxic exposures.)

All things pass. There will be a New Normal one day.

Over the next few weeks, I’ll figure out how to get my continuing physical & logistical support needs met.

If you don’t mind, I’ll add this letter of mine to my livinganyway.com blog. It’s where I discuss how to handle (excuse my French:) the shittiness of life events atop the shittiness of central-pain conditions.

Hope your summer’s going well.

All the best,
Isabel

Reality bites

So here’s what is really going on…

Notes from paradise

3 days on, I’m realizing that one of the few certainties I once had was that J and I would be together, and if I wound up single it’d be because he died before I did. He loved me so much. SO. MUCH. He bragged about me to his boss as little as 2 weeks before he broke with me. He really wanted a life with me, and affirmed it over and over again, over the years.

He saw my weakness and strength, brilliance and idiocy, beauty and horror, and loved me wholly, just the same. He saw when I needed more help and when, instead, I needed motivation to work harder; quietly, seamlessly, without any fuss, he adjusted his actions and my environment accordingly.

When we were together, we had everything we needed. It was so much fun and so pleasant to be in each other’s company that the world around us sparkled and everyone we met lit up. We were “the elves of [Our] Road,” spreading joy and taking care of things wherever we went.

Our relationship was rather tempestuous from the outside: two strong characters are always going to have some intensity together, and an addict in amateur recovery with a spoonie in pain adds more than a little spice to the mix. Ten percent of it was pretty hard. The lion’s share of the other 90% was delightful. Because we’re both introverts, 90% was also pretty private.

He loved me very nearly as thoroughly as I loved him.

All that love…

Mental breakdown

And now,
After watching everything around his old home turf burn to the ground, raising the level of poison and desperation in an already toxic and desperate area to unfathomable levels…
After sinking into a surly isolation unthinkable until now…
After having to wait 2-1/2 weeks between signing up for couples counseling and actually getting it, which might be the kicker…

He has taken to the idea that he’s homesick and “I have to go back every 5 years”, having left only 3 years ago and visited this past June; and that I, of all people, “amazing” and “brilliant” me, am worth using but not worth being with.

All that love!

Dual diagnosis

This is exactly what untreated mental illness coupled with untreated alcoholism looks like:

  • Love is irrelevant.
  • Joy loses meaning.
  • The diseased story he tells himself is FAR more important than the real world in all its richness and possibility.
  • His own power to shape his life seems fantastical to him — absurd.
  • His power to devastate and destroy seems to give some weird, uncharacteristic satisfaction. I call this “emotional cannibalism.”
  • He acts like mindless prey stuck in the claws of his illness, not like a living human being with good options.

Worst of all, love is simply irrelevant.

All. That. Love.

Irrelevant.

All that joy?

Unthinkable.

All that subtlety of observation and care?

Dead, decapitated, done.

Looking for reasons in unreason

We humans try to figure out what’s going on, to look for reasons, patterns, something to make sense of things. Unfortunately, mental illness — by definition — creates irrational states of being, and addiction is inherently not sensible.

My Magic Healer-Man is even more surprising in his departure than he was in thundering into my life, throwing some of his healing into my hands as he took so much of my healing into his. After all, if we can’t save ourselves, we might be able to save each other — as many of the seriously ill and disabled are well aware.

It was an amazing partnership, in many ways.

All.

That.

Love.

Making choices

In the end, though, we have to take charge of our own healing, even when we’re short on the dopamine necessary to make choices with. When we’re miserable, we have to decide whether misery or healing will drive us.

I tend to do whatever it takes to get better. I could be (much) more diligent, especially when things are going well.

By and large, though, misery is unacceptable to me. Life is too short. (Until recently, that was one place where J and I thought exactly alike.)

But then, I’m not a man. Testosterone is neurotoxic, strictly speaking — a fact that’s hard to find in the literature, and then only when cloaked in caveats and euphemisms. A lifetime of it doesn’t seem to be a great set-up for dealing with the changes in the last quarter of life. … Yet, many do manage it with wisdom and skill.

Look! That was me trying to find a reason, even a demonstrably daft one! Or is it an excuse? Didn’t work, anyway.

We choose what to be influenced by, out of the options and resources available to us. He had great options and outstanding resources here.

I think what I’m struggling most with is the fact that, abruptly, he chose chaos, violence (I know where he’s going), and desperation over love, work, and healing. I do not understand that.

Over and over, my broken heart cries out,

ALL!

THAT!

LOVE!

Some things, there are no answers for. They can only be endured.

I’ll make adjustments, time will pass, and one day I’ll wake up to a New Normal, in which there will be some measure of joy. Hard to imagine, but that’s the way things work.

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Bearing witness — what it is, what it isn’t

I’m a history nerd. I love the stuff.

This is the anniversary of the sinking of the Titanic. I had the dizzying experience of being part of an online re-enactment. (I know, it sounds crazy, but it worked!)

People got so caught up in the re-enactment that there was real heartache over the screams of the doomed and the bitter anguish over lives we couldn’t save, and watching the lights go out one by one. The idea of “bearing witness” was tossed around, but without form, as it often is. I thought it needed clarifying.

Therefore, I wrote the following, in the aftermath. I didn’t trivialize the pain, because who knows what horrors others will face in their lives afterwards. (I can’t even imagine what I’ve been through so far, let alone guess what’s next, and I’m pretty sure I was there.) So, I treated the heartache as perfectly valid — chances are, sooner or later it will be, and we can all use a little clarity at those times.

What I wrote resonated so strongly with so many different people that I thought I should put it here, too. (All these posts are printable, shareable, and linkable, so don’t be shy about sharing.) Hope it helps.

A word to those new to mortality in action…

I was a nurse, starting in HIV care 27 years ago, then Emergency/Casualty, then home care. Then I lost 9 loved ones in 18 months. Then I developed a subtly brutal disease that destroys the body from the inside out, for which the treatments are occasionally fatal.

I have watched a lot of people die.
(pausing for breath, and for the color to come back into the world)
[Okay, moving on.]

There are two ways to cope. One is to shut down and depersonalize, which is increasingly common. As a temporary measure, it’s fine — gives you time to get it together. The humane thing to do, though, is move on from there.

Another is to look closely at where your skin ends and another’s begins, and let them have their experience while you notice that it sucks for them — and you keep breathing.

This is what is meant by bearing witness.

Separating Self from Other allows us to be present while another faces the worst moments of their life.

Knowing that it’s not you dying, or writhing, or what have you, frees you up to stand outside that hell and throw the glowing line of awareness to the one inside it.

That is bearing witness.

I won’t discuss my illness here (check out livinganway.com if you want to see the sunny side; rsds.org if you don’t) but I often wind up in an unbearable state of being. I’m an old hand at looking back at life from the slopes of Hell.

While (keep this in mind) there is nothing anyone can do about my being in an unbearable state, there is only one thing that reminds me there is something beyond it, and all I have to do is get there.

That one thing is a loving look, or kind word, or one of my partner’s frankly feeble acknowledgements of recognizing that my body might as well be burning alive. It’s so small from the outside — but it lights up my world.

It’s a thread of golden light that holds me to life. Just a thread of golden light. But it’s enough.

Bearing witness is not about changing the outcome.

Bearing witness is simply the only possible redemption of these terrible moments.

Redemption is not about undoing anything. It does not change the outward reality.

It changes the unbearable inward blackness just enough that the person who is looking back at you from the slopes of Hell, can find the extraordinary inward strength to keep going until it’s over — one way or another.

You who are well and safe have no idea how important that is, but please, let me assure you that it’s a gift beyond reckoning to do that for another.

Bearing witness to those screams, those unspeakably harrowing last moments — whatever they are — you can’t see their faces change, because their reality is just as bleak right now — but, inside them, they found their steel; they found their peace.

For all those on the Titanic and all those who look back from the slopes of any other Hell, let me say, thank you. You make all the difference.

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Many itchings!

Another great question about an ordinary (for CRPS!) change led to another “Isypedia” blurch. Here goes.

Once in awhile, something changes out of the blue. What is a CRPSer to think when suddenly caffeine and chocolate cause massive itching?

Nerd note: Yes, the word “caffeine” is used differently in ordinary speech than it is in botany or food chemistry. That’s okay.

There is a chemical class called xanthines, of which caffeine is one member.

Related chemicals, with very similar or nearly identical activity in the body, are lumped together and called ‘caffeine’ in ordinary communications.

“Why? Why this sloppiness??” I hear some of you cry.

Because most people are not food chemists, and what’s important is what it does to you, not exactly what to call it.

So…

Technically, tea contains theine, mate contains mateine, coffee contains caffeine, and chocolate contains theobromine (and sometimes a tiny amount of caffeine.)

But…

Neurologically, it’s all “tomayto, tomahto.”

Back to our blog post.

On developing food reactions in CRPS

First, it’s not unusual (yet not really normal) for CRPSers to develop new sensitivities and allergies out of the blue. This has to do with several things, as a rule: the digestion doesn’t break down proteins as well as it used to, and those proteins are more provoking to the immune system than they would be in a healthy body.

It’s worth noting that allergies (and many sensitivities, which can also be histamine reactions — another note for my fellow nerds) happen on the basis of molecules, not teaspoons or larger doses — and, at that micro level, everything has protein the body can react to.

Second note on allergies is, that most of what we eat contains more than one thing we could be reacting to. If I thought it were the caffeine and chocolate setting you off, I’d want to check those labels and look for similar additives.

If you’re using medical marijuana (great when it works! Wish it worked for me) then look into how it was grown. Aim for organic and, if possible, outdoor-grown. If you have allergies or sensitivity to iodine, egg, etc, then you may need to dig further and avoid marijuana grown with fish compost, chicken manure, or what-have-you. You may need to cultivate (as it were!) a relationship with an individual grower who can meet your needs.

On neuro causes of itching

However, you’re specifically noticing reactions from caffeine and chocolate, which — specifically — can activate the C-type fibers in your nervous system — the very fibers responsible for the sensation of itchiness and also for the surface hypersensitivity that go with CRPS.

So, it’s very possible that it’s not so much an allergy (which is a protein response) but that you’ve developed a neurological hypersensitivity to these C-fiber-stimulating chemicals.

In that case, it’s not just a question of avoiding caffeine and chocolate (sorry!!!) but also supporting the C-fibers so they can calm the heck down and not go further into their over-reacting.

On other causes of itching

Have you changed meds in the past few weeks? MANY meds can cause itching, especially neuro-active meds — and most meds that we take are neuro-active in one way or another.

Check with your pharmacist or doctor right away if you develop itching with a new medication.

Have you changed laundry detergent or other things that come in contact with your skin? These could increase your skin’s reactivity.

If your neurological system is being hyper-reactive, it’s not a bad idea to switch off of scented products. Keep in mind that they don’t have to test something for safety before marketing it, and their profit depends on consumers not asking too many questions. Just food for thought.

Things to try that don’t require a doctor

Some things to try for itching, if you aren’t already doing them, are nutritional (something to swallow) or topical (something to apply to your skin.)

Nutritional care for itchy nerves

– Vitamin C, preferably Ester-C (food-based, and specifically easy on the stomach and slow-releasing.) Vitamin C is one of the few food/nutrition things specifically studied in CRPS. It’s wonderfully neuro-protective and most forums recommend making it part of daily life. The range studied was 1,000 to 1,500 mg per day. Some people take 500 mg /day with good results. I take 1,000 mg.

– Magnesium, either as digestible chelates in capsule form, or as Epsom salt in a not-too-hot bath. This can really soothe hyper-reactive nerves, especially the C-fibers. If you take the capsules, take with food, partly to improve absorption and partly because magnesium can be a little hard on the stomach. (For internal use, stick with the chelates. Don’t drink Epsom salt solution unless you want to clean out your GI tract really fast.)

– Other nutritional supplements that can help moderate that itchy C-fiber activity are, believe it or not, Calcium (food-based, not rock-based) and vitamin D3. The physiology is kind of complex, but it boils down to this: Calcium not only builds bones, but it handles certain kinds of nerve transmission; D3 stabilizes the behavior of Calcium, so it doesn’t wander off in the wrong direction. Not surprisingly, CRPSers (and everyone who’s chronically ill, even in sunny locales) tend to be very low in vitamin D3. Talk to your doctor or pharmacist about your condition, your symptoms, and what dose of D3 to start with. Although too much can be toxic, that’s not something you’ll be dealing with for awhile! Unless you’re tracking this already, you’re likely to be quite low in D3.

Topical care for itchy skin

– Certain oils can help tremendously.
* Emu oil (not suitable for vegetarians) is packed with antioxidants and anti-inflammatories. It’s absolutely amazing for pain. It’s extremely well-received by most skin, and absorbs several inches deep into the tissues. This makes it a great carrier oil, as it can carry whatever is added to it right into your tissues. Be sure to get AEA certified emu oil, as that’s the only kind known to be 100% real. (Because it’s not cheap and not regulated, all kinds of things get tossed into a bottle and labeled “emu oil.”) Cheapest brand of AEA certified I know of is Pro Emu, available from proemu.com and amazon.

* Sweet Orange essential oil. Always, always blend this at 1:15 or more with other oils, because it can cause chemical burns (first time I used it in a bath I didn’t dilute it! Never making that mistake again! LOL) In other words, a few drops of Sweet Orange oil to a couple tablespoons of any vegetable oil or emu oil, makes a great treatment for that C-fiber itching.

* Clove essential oil is better for nerve pain (been used for thousands of years for nerve pain) than it is for itching, but it sometimes helps me with my itching. Same precaution about diluting the heck out of it, applies. I mix it with Sweet Orange and Emu oil for a one-size-fits-most solution.

– The herb Melissa officinalis (also called lemon balm), either as tea, hypercritical extract capsule, in the bath, or on a washcloth used as a compress, can also be helpful. It, too, has been used for thousands of years to treat inflamed and over-reacting nerves. It’s good for itching and great for nerve pain. It blends very well with chamomile, which also has anti-inflammatory (not NSAID-like; works differently) and can soothe itching.

– Some find oatmeal baths helpful, especially when it’s an allergy itch. (Sometimes it helps with a C-fiber nerve itch.) Put rolled oats in the blender and whirr the heck out of them to make your own “Aveeno bath”, and use about 1-1/2 tablespoons in your bath.
I can’t go near oats because they trigger gluten issues for me, but that’s my problem. If I could use oats, I’d add a few drops of orange oil mixed with carrier oil right into the whirring blender and whip it right into the oat powder.

What’s cheapest and most reasonable of these things depends on your situation and circumstances. I hope you find something helpful here.

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On repetitive motion and avoiding CRPS

Oh boy, another brain dump … This one on how to work on getting worsening tendinitis to back off and let you get your life back.
===================================
I’ve been through the worst possible scenario that started with this kind of overuse pain, and the worst possible things went wrong just short of amputation, and my entire life got wrecked.

Also, I was a nurse, and what with one thing and another, I think I’ve seen a lot of ways this can go. So, I do hope you’ll forgive me for offering some perspective and advice from the sharp end. It’s wholly well-intended and very much from the heart. I do not want anyone to go through a tenth of what I did.

Firstly, it’s usually possible to rehabilitate tendinitis, IF you are sufficiently wise and adult about it. (Easier said than done!)

Secondly, doing so takes time; give it 2 years, considering how widely it affects your life right now.

Keep in mind… *those two years will pass anyway.* Wouldn’t you rather be better at the end of them, rather than facing a lifetime of being handicapped in all the most fundamental and enjoyable tasks of life? Trying to live without using your hands is no way to go. Trust me on this.

It will require changes, some of them major adjustments, and some of them minor adjustments to what you already do.

There are several aspects to address, none of which are optional, but all of which have different things to try:

– Positioning during the day (when we do 95% of our activity.)
– Positioning during the night (when we do 80% of our healing!)
– Rest & recuperation time (without this, nothing improves for long.)
– Rest & recuperation physiology (nutrition & pain control.)
– Adapting life tasks to ease up on your wrists (this requires professional help to get started with, so the physical dynamics start off right and you learn what “good enough” really is and what it isn’t.)

You’re obviously a very bright and rational person, and I feel very shy about stepping forward here, but you’re doing what I did and what many people do, and smart and well-informed as you are, it’s just possible you’re overdoing to the point of damage, and that damage IS almost certainly recoverable and possibly totally preventable. It just takes a bit of time and work first, then you can get back to the best and most important things when you’re better. (Never give up on getting better.)

– Positioning during the day
Talk to your doc or physiotherapist about whether a brace would help or hurt your wrists. It depends on where the tendinitis is and what the triggers are. Alternatively, learning to tape them may be better. (I got a whole extra 6 months out of my right wrist with strategic taping.) The right structural support can change things. (As can the wrong structural support, but not in the good way.)

I assume you’ve been to your doc and have discussed that 🙂

– Positioning during the night
Few docs know this trick (my surgeon did), but it’s absolute gold: Wrap towels around your elbows at night so you can’t bend them up in your sleep. Since >80% of recovery and healing happens during night-time sleep, the more you can protect your arm tissues during that period of time, the better. Bending them up cuts off that process. Simply cuts it off. So, unbend.

Since you have this tendinitis, there’s a ~90% chance you sleep with your hands tucked up by your face. It will take some adjustment (sure did for me) but that position is about to change. You clearly depend on your wrists too much to let this go on, so *let* the nerve and tendon pathways heal at night, and see what that does for you over time.

This one thing alone has “cured” some people of their daytime symptoms. It’s terribly important — it repays perseverence.

– Rest & recuperation time
Yup… put the hooks, needles, etc., down for a few weeks to a few months. I’m sorry, but healing takes time and there’s no shortcut to this. The good news is, the time WILL pass, and you’ll be better for it. (I wish I’d done that!!!)

The most helpful guidance on “how long?” is probably from a rehab speciallist called an occupational therapist. They’re technically similar to physiotherapists, but they focus on the mechanics, tasks, and demands of daily life. THey’re more dialed into the practical application of the larger issues that physiotherapists and physicians work in.

Since you’re still doing these things despite the pain, I figure your doc may not be *completely* up to date on just how much this is interfering with your life and activities. I’m an old nurse; I’m not wild about doctors; however, this is a great time to get re-acquainted with yours — because he or she can sign you up for OT and PT to help you rebuild your tendons without further damage, and rework the hand-tasks of life so the *overall burden* of wrist-stress is better distributed and *still* gives you time to do the things you love to do!

– Rest & recuperation physiology
Tendinitis can be solely due to overuse, or it could be due to overuse plus other factors. (E.G., I have a fairly normal variation in my radial muscle, where the edge of the muscle bundle is sharp; it wound up scraping and irritating my radial nerve so much along that edge that I had to have a chunk of the muscle cut out. I also had carpal tunnel space that was simply tiny. That had to be opened up so the nerves and tendons could fit without hurting each other.)

Basically, if something mechanical really needs to be dealt with, it’s wise to deal with it so you can get on to the good part — getting better. (I’m no fan of surgery either, but sometimes it makes sense.)

Pain makes your body tissues sticky, and sticky tissues get gummed up; gummed up tissues hurt more because they can’t move right or work right or clean themselves up properly. And round and round we go.

Thus, less pain with better hydration (to clean out the sticky stuff, quite literally) makes for better healing. Two things can have significant effects on pain — nutrition and medication.

Wild fish and grassfed butter (bring on the Kerrygold!) are known to reduce inflammation, improve metabolism, and support healing. (Conventional butter and farmed fish, sadly, do not. Long explanation r/t histological metabolism.) Produce of all colors make a huge difference in healing.

Even with a great diet… in our modern messy world, and with a fairly longstanding pain issue evolving, it’s not ideal to depend on the finite number of calories you can eat to get all the nourishment your body is hoping for. Fish oil (very fresh: Nordic Naturals and Kiva are known to have good fresh processing and delivery methods) and, of all super-easy things, vitamin C are outstanding for inflammatory pain and nerve healing. As a long-time painiac, I recommend 500-1,500 gm daily of Ester-C, because it releases itself slowly and is the most digestion-friendly vitamin C I’ve ever used. Vitamin C works by refreshing all the other antioxidants. Wonderful stuff. Your nerves are among the biggest producers and biggest users of antioxidants; right now, they need more, but can produce less, so it helps a lot to make up the deficit.

From my own standpoint, I consider a good food-based multivitamin essential, because I’ve seen in myself and in so many others just how much of a difference it makes in healing time and recovery completeness. However, I realize many have strong feelings about supplementing with multis, and I don’t want to seem contentious 🙂

Ibuprofen/paracetamol, where you’ve got plenty of hydration and good nutrition, are terrific for reducing inflammation and knocking back the pain, of course.

– Adapting life tasks to ease up on your wrists
So you get to keep them for the rest of your life 🙂

This is where you want to start with an Occupational/Physical Therapist, rather than doing the natural/easy thing and trying what your friends have tried.

Why’s that? Easy — because of muffled signals. Since you’ve been dealing with this for awhile, you’ve gotten pretty good at ignoring some body signals, and one thing these pros can do is help you learn *which* signals are right, and which ones can be safely ignored. Once you get the parameters in mind, then you’re better equipped to choose your own adaptive gear from there.

Having the outside pair of eyes, which are so well-educated, is a great help in readjusting life and redistributing the load on your body.

I hope that’s helpful, and I hope you don’t mind my hopping onto this so enthusiastically. It’s my mission, now that I’m on borrowed time, not to let anyone else endure any of the horrors I did

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Detoxing off one med and preparing for another

We have to try some fairly startling chemistry in order to find the right support for our weird and wacky systems. It’s not a joke — but it can be a circus.

Trapeze_artists_1890

Years of nursing — in home care, acute care, HIV care, emergency care, all sorts of things — and, of course, the independent study I wound up doing along the way — most of the time, having no health insurance of my own, because being full-time at one facility was intolerable so I spliced together several part-time jobs in order to keep my mind working — where was I?

Oh right — getting safely off of problematic medications, which I’ll call “detox” for short. We usually think of hard drugs or alcohol when we say that, but the underlying mechanisms and the affected structures are the same. Logically, it works.

I could bore you to tears about the metabolic work of detoxing, but I won’t. I’ll drop in a brain-dump I just did for someone who has had to come off of Lyrica, the most fashionable med for CRPS right now (look here for the background on its fame), and — like many! — has not been able to recover former thinking, memory, and personality. Hopefully, it will return in time. In the meantime, helping the body clear out the last of the med, thus reducing the background strain, could help.

One thought before proceeding … it’s old news now (at least from 2009, Çagla Eroglu et al.) that Lyrica kills new synapses. In other words, if you get that blank, stupid feeling when taking Lyrica or Neurontin, it’s not imaginary.

This class of meds actually works by slowing down the rate of “excitement”, or activity, across the synapse. It does so in a way that prevents further synapse formation. Normally, new synapses keep forming throughout life. Making use of that fact is the best way to battle age-related brain diseases as well as chronic pain.

 

There is a ton of dense “science-speak” surrounding the fact that the very thing that makes it work short-term or for occasional use, is the very thing that makes it problematic for chronic and long-term use. That’s a complex issue. The precise nature of this activity has only become apparent over time, and medical science hasn’t really figured out what to do about it yet. Meanwhile, buyer beware.

 

This is going to take a few more years to shake out. In the meantime, keep a diary of what works and what doesn’t, and how goofy you seem to be. Note where your meds change. Look for relationships. Talk to your pharmacist and your doctor. Keep them in the loop, even if you — or they — don’t always agree.

 

We and our care teams need to work together, and as the patients, the burden of managing that falls on us.

Don’t overthink that — if it’s working for you and you don’t notice the deficit, then think carefully before switching. It’s not that those who do well on it should change, it’s simply that such a med does not belong on the first line of treatment, but in the second or even third. Less synapse death is better, usually!

Sketch of brain, with bits falling off and popping out, and a bandaid over the worst

The point of putting gabapentin/pregabalin in the second or third line of treatment is that, if the other stuff doesn’t work, then those who need Lyrica will still get to it, after trying the meds that’re less likely to be problematic.

Anyway, here’s the brain-dump on detoxing from almost any med, with some special notes about this tricky class.

BTW, this works for narcotics too. In that case, be especially diligent about easing slowly onto the liver-cleansing stuff, because you don’t want to clear your opioid receptors too fast for your body to cope with. “Easy does it.”

==================================

If you’re interested in suggestions, I sure do have some. I had to get off Neurontin, Effexor, and a few other heavy-duty nuisances, and I used to be a nurse and helped an awful lot of other people deal with this…

If you’re not interested, I understand, I don’t mind, and please just ignore the rest of this 🙂
[I left that in because it’s important to realize that not everyone on a support group wants advice — some just want to vent.]

Normally, going off of one major med is part of a larger task of re-adjusting the whole medication picture. There are 3 important elements to this process:

  1. Hydration
  2. Clearing out the old med
  3. Trying something different

Firstly, of course, lots of hydration (yes, the bathroom trips are work, but your blood, lymph, and skin do need the fluid to clear things out, and your brain and spine need more water to rest upon when they’re suffering.)

So, as you reach for your water, here is the rest of my riff on detoxing from meds.

Clearing out the old med:

The point is to clear the old stuff out of your system. This means supporting your body’s “housekeeping department” — liver, kidneys, blood, lymphatic system, skin.

circulation-allbody-Anna_Fischer-Dückelmann_1856–1917

SInce gabapentin dissolves itself readily in fat, it hangs out in your system. (Every cell wall and every bit of white matter in your body uses fat. It’s not optional.)

Organs matter

Your kidneys take the burden; your liver doesn’t seem to do much to it, as most of the drug is excreted unchnged. That doesn’t mean your liver doesn’t have to deal with it as it passes through, though. (Fat-soluble drug in a high-fat organ.)

These are both blood-rich organs, so that’s why the artichoke and dandelion (root in tea, or leaf in salad) can be useful — they support the liver’s detox work. Also, milk thistle seed (silymarin) is in the same category as artichoke. I’ve always used whole seed and ground it fresh, as thats cheap (except for being hard on the coffee-grinder) and works gerat with no side effects, but extracts and preparations are available too.

Any one of these (artichoke, dandelion root, dandelion leaf, milk thistle seed, silymarin) is fine. Whatever works for you.

Check with your pharmacist!

Check with your pharmacist before adding this stuff to your day. There are meds which these cleaner-uppers can interact with by cleaning up the liver. For instance, if you’re on chemo, save this for after you’ve finished the chemo and are rebuilding yourself.

A good pharmacist knows this, and can check scientifically-developed references for more info.

geometric shape of mortar and pestle with intertwined r x

Mopping up

The other aspect of clearing the med out of your system is supporting the “mopping-up” part of the housekeeping team — your blood and lymphatic systems. Green tea, echinacea (mix it with lemon & honey to make it tolerable), melon (fruit or juice), and citrus are all good for this. If you can find citric acid from fruit rather than corn, that can do a good job too. (There’s something odd about the corn-based citric acid — it tends to trigger indigestion and gastritis in the vulnerable much more than the fruit-based citric acid does.)

Any of these (green tea, echinacea, lemon, lime, melon, citric acid) are good, not only for helping get more water into you, but for helping your lymph and blood to “scrub between the cracks” and pull the rubbish out from your cells and clear it away.

photo of white tile floor, half clean and half dirty. Labeled "before" on the dirty part, "after" on the clean part
A dehydrated and grubby set of tiles, pretending to be cells, on the left; hydrated and happy cells on the right!

Lymphatic support: start gently

Start slowly and work up, because you don’t want too much backlog clearing out at once. If you start at a high dose of green tea or echniacea, you can wind up with swollen lymph nodes, because your body can detox faster than your lymph and blood can wash it away. Give it a chance and work up gradually to a therapeutic dose.

Start at one cup of green tea or echinacea a day, and work up to 3 times that. See how you do and let your body adjust for a few days or a week. Then go up to 4 times that original dose. Give this a month or six weeks (your call) and taper off again if you want to.

Drink up 🙂

For lemon or lime water, melon and melon juice, and of course seltzer, you can drink as much as you like, as long as the citrus is well-diluted and doesn’t give you any trouble.

glass of citrus juice with mouth of bent straw pointing right at viewer

Citric acid and lemon or lime are best used with plenty of water. Using an intense concentration can irritate the stomach. (These also help prevent kidney stones, btw.)

Just like the artichoke/dandelion/milk thistle seed — check echinacea and citric acid with your pharmacist before using them.

If it’s okay to use echinacea with your other meds, then remember to either go off it after 6-8 weeks total, or, if you find you need to stay on it to keep the channels flowing, then remember to take a week off every month. Your body needs a break in order to keep responding to it. Echincacea is not for ongoing use unless you’re being followed by a good herbalist who’s comfortable with your complexity. (If getting the Lyrica out of your system is the only thing you need it for, then one round like this should do.)

Or you could just…

As I look back over this incredible screed, the simplest thing might be to find a nice herbal “detox tea” and start with one a day, go up to 4 a day, and leave all these details to the nerds!

a grid view of detox teas available from vitacost dot com

I hope you can get clear of the Lyrica and find the right pharmaceutical/dietary/physical/mental support for you.

Shifting to a different med for neuro pain:

The mixed-SNRI class of new meds has had the best statistical results of anything so far tried, according to the first few years of studies. Mine saved my life (Savella) — it helped that I had a fibromyalgia diagnosis, and Savella was developed and tested on fibro, so insurance would cover it. It cuts my fibro pain by 90% but it also cuts the CRPS pain by almost as much.

All of the so-called “anti-depressant” classes have been found to be statistically useful in treating neuro pain. Why? Because what they really do is stabilize the messenger molecules.

The most profitable market for this is depression, but our central pain means that stabilizing the messenger molecules of neurogenic pain (regardless of emotional pain) means that we hurt less and function better.

Tricyclics (also good for sleep) and some SSRIs have had results that, statistically, are about as good as Lyrica. The real breakout med for long-term neuro stabilization for pain and dysautonomia is the new mixed-SNRI category, though.

There are also meds in other categories, such as bisphosphonates (again, take care of your liver and kidneys) and a class of heart meds called statins. Low-dose naltrexone and ketamine infusions are other options from the anesthesiology side. They usually require qualified specialty care to try, especially the ketamine.

If pain is localized (say, to a foot or a shoulder), then topical treatments can be terrific. Voltaren and Lidocaine patches are a great help to many. Compounding pharmacies can make up special concoctions tailored to your specific needs, containing any of the meds mentioned in the last few paragraphs.

I’ve used the word “statistically” a lot here. That’s because scientific method only tells us what the general trend for a group of people is. Statistics mean nothing in the case of the individual. What matters in the clinical setting — that is, what matters in the lives of individual patients — IS the individual. Therefore, the medical science is only a guideline, telling doctors what to start with and where to go from there.

We are all guinea pigs, because the subtle and comprehensive nature of the nervous system, and the way longstanding CRPS and other central pain diseases disrupt it, means that the only way we’ll know what works for us is to try things and see.

Your doc should take a deep breath, take a good look at your whole picture, and work with you to figure out what works for you.

Please be clear that THERE IS A WAY FORWARD. I’m certain of that. It’s just a question of finding the right way for you.

Best wishes and I hope you get a good solution soon!

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Mental toolkit for overwhelming times

As I’ve said before, much of brain-retraining has to do with speaking to the primitive parts of the brain in ways it can’t ignore.

Being overwhelmed is very common these days. So, this tool is helpful for far more than just  my fellow painiacs. I originally laid this out for someone else dealing with very different issues, and realized as I did so that it was a darn good tool and I’d have to remember it for myself. It has already been a help to me, so I hope it helps others as well.

The State of Overwhelm

I can tell when I’m in the state of Overwhelm because life is just a big old mess of decisions and problems and unresolved issues which are so toweringly massive they stop making sense. My usual ability to sort and prioritize and manage information freezes up, and my brain skids off into the ditch.

pencil and ink wash drawing of WW 1 red cross van sliding backwards off a mountain road

Once I’m in Overwhelm, it’s unreasonable to try to reason my way out of it in my usual way. Each thought is blocked by half a dozen issues backed up against it.

I’ve got to simplify. Not just that, but I need to SUPER-simplify — break it down into binary questions — that is, questions with only one of two possible answers. It’s the only way I can start managing the pile.

(What follows is a technique used in several disciplines. I’m avoiding jargon and simply using the words I use in conversation.)

The roadmap out of Overwhelm

When I was rebuilding my credit, the first thing to do was to figure out what I really owed, and what someone else was supposed to pay. This is a good template for dealing with Overwhelm.

First, whose job is it, really?

When I get overwhelmed, it’s hard to tell what’s my responsibility and what’s really someone else’s. It feels like this:

white box with orange speckles throughout, with the words "my job" on the left and "someone else's job" on the right, with no barrier between them

All the jobs are kind of muddled around in the space and there are too many jobs and not enough space.

When I draw a mental barrier between the two, things suddenly start to clear up:

plain white box, with a line down the middle. "my job" in left part, "someone else's job" in right part.

Notice that, at this point, I don’t need to know who the “someone else” is; the first step is to be clear about whether it’s my job or not.

Managing my care?

my job slash someone else's job box, with my job illuminated and someone else's job darkened

Ordering tests and prescribing meds?

my job slash someone else's job box, with someone else's job illuminated and my job darkened

Testing those meds on my system, tracking their benefits and drawbacks, and updating the prescriber?

my job slash someone else's job box, with my job illuminated and someone else's job darkened

Keeping the dishes clean?

my job slash someone else's job box, with someone else's job illuminated and my job darkened

Keeping the outside steps de-iced?

my job slash someone else's job box, with my job illuminated and someone else's job darkened

(It’s my one outdoor job, and my partner does everything that I can’t and a lot that I shouldn’t, so I bundle up and take care of the steps without a whimper.)

Second, is it something volunteers can do or is it a professional job?

This is an important distinction.

binary box, with "volunteer job" on left and "professional job" on right, with bar down middle dividing the two

When in doubt, upgrade.

Volunteers

Take care not to abuse the skills of your volunteers. You may know lawyers, counselors, accountants, and so forth, but that doesn’t make it right to ask for free professional services from them, except under unusual circumstances.

If those who help me out aren’t being paid (either by an agency/employer or by me), then they’re a volunteer, regardless of the skills they have.

I tread as lightly as I can on my volunteers. It’s an important long-term goal not to alienate them, but to keep them comfortable with me and happy to stick around.

Professionals

The corollary is, I have high standards for my professionals, and hold them to those standards with all the clarity-with-courtesy I can manage. I have no hesitation about firing someone who consistently fails to measure up.

I put a lot of legwork into choosing my doctors. Here’s an overview of the process and links I used a few years ago: How I find my doctors

It’s certainly worth the time and effort to find good people who can do justice to your life and your needs. The question is whether you can find the slack. I hope so.

Examples

Fix the heater?

binary box, volunteer/professional, with professional job illuminated and volunteer job darkened

Put us up for a night until it’s fixed?

binary box, volunteer/professional, volunteer job illuminated and professional job darkened

Give hugs, tea, and sympathy when I’m recently bereaved?

binary box, volunteer/professional, volunteer job illuminated and professional job darkened

Train me in how to get my brain to reprocess deep pain (and the staggering scope of loss associated with it) without short-circuiting?

binary box, volunteer/professional, with professional job illuminated and volunteer job darkened

This is definitely not for volunteers; too much knowledge about neuropsych and too much investment of time is required.

Professional level brain & mind care

For some things, talking to a friend, doing something strenuous, or meditating a lot, is enough to allow a person to heal heart and mind. Life itself is generally a good therapist.

Some things are too complex, too deep, or too dangerous for amateurs. Despite our longstanding social taboos, people with recurring trauma (like central pain or abusive relationships) or PTSD (like survivors of war or child abuse or those who’ve been through worker’s compensation or disability applications on top of a devastating condition) are right and smart to get highly-qualified care for resolving the damage that these things do to our minds and our brains. The damage is not imaginary, and sheer force of will is not a great tool for healing it.

Sketch of brain, with bits falling off and popping out, and a bandaid over the worst

It CAN be healed, even the worst of it. It does NOT require chewing over the past; in fact, that’s often avoided in modern trauma counseling, because that can do to the PTSD brain roughly what our recurring pain does to  CRPS brains.

Line drawing of brain, including medulla, sliced near the middle so the lacunae are visible.

Some techniques DO re-map and re-train the brain to make room for more stability, more healthiness, and move even a CRPS’d brain closer to a normal state.

Less pain! More joy! Less instability! More abilities 🙂

Some keywords for finding relevant mental health professionals: trauma-informed, PTSD, pain psychology. These are jargon terms that usually indicate the professional understands how these profound experiences affect our brains, and how that can be rewound or reworked to a better state.

Another thing you can do

It helps to vote for legislators who see the value in health care, including mental health care. Conservative estimates say that each $1 spent on care saves between $10 and $100 in downstream costs (ER visits, health costs, police activity, lost productivity, lost wages, family impact, etc.) Middle-of-the-road estimates place the savings much higher.

Something to think about, in times like these.

Find your legislators here and let them know what you think:

  • In the US, here’s where you find national, state, and local legislator info: www.usa.gov
  • Canadians, here is your national parliament contact info: http://www.parl.ca/

Please feel free to add contact info for elected officials in other countries in the comments below. It has become clear that voting is a health-care issue.

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