3rd panel of triptych: The action of deciding

This is the third panel of the triptych. It took awhile to write. You’ll see why soon.

First panel: my pre-CRPS decision mechanism broke, but look! There’s a hack for that! Using remaining fragments, bubble gum & baling-wire, and lots of patience, I can still stagger through even fairly complex decisions.

Second panel: Speaking of complex decisions, I’m looking for a home that meets my physical needs and my financial limitations. Turns out, there is no such thing… Yet. Crossing every available digit and getting really creative.

Now: I’ve been mulling the origin of the act of deciding. When does that happen? It goes by so fast sometimes, I find myself dancing on a spinning log of results before being aware of stepping onto it.

It’s my nature to leap to a decision and be told I’m going off half-cocked, but what I’m doing is processing huge amounts of information very quickly at a largely subconscious or pre-conscious level. I can haul out all the arguments pro and con on no notice, if anyone wants to hear them.

At least, I used to. It’s CRPS’s nature to pour a whole lot of crude-oil over everything between my ears, so things just don’t happen that fast in there any more, and the gears are more likely to slip and chatter. So, I go through a more iterative process and take much more time. If I could adjust my expectations of myself accordingly, I’d be all set…

At the moment, I’m viewing the action of choice with great intensity. I’m convinced that decisions are especially difficult, especially fraught, and especially crucial, for people with CRPS. (Not that this is a competition. If what you read fits, just circle it and write, “me too.”)

Layers of decision-ing:
Conscious vs. Unconscious

So much happens at the unconscious level before we even are aware of having a choice, that it’s impossible to discuss a mental action like choosing without acknowledging some of the most important barriers to thinking clearly in the first place. These are factors that many spoonies (and all CRPSers) have to live with and figure out how to handle, or decide not to handle and just be driven by them instead. (The enormous initiative required to deal with them is overwhelming, so I gently suggest being tolerant of those who don’t, or feel that they can’t, circumvent the circus acts desribed below.)

  • PAIN: Acts on the most primitive brain, and the primitive brain can’t think past the moment. Not its job.
    • Takes a good set of pain-management tips and tools to nudge the primitive brain to the back of the car, so reason can drive.
  • FEAR: Fear hijacks the amygdala and activates the fight-or-flight syndrome. Hijacked amygdalas distort the brain’s function even further, and the fight-or-flight response further destabilizes the already-wobbly central nervous system.
    • This is a one-two punch for CRPSers. It takes a lot of training and practice to work around that, but it usually can be done.
  • The MONSTER: know thy (current) self. Those of us with horrifying illnesses sometimes feel and seem like we’re taken over by some horrible, biting, unpleasant person who looks and sounds a lot like us, but doesn’t act like we normally intend to. This is tough all around. I find myself being emotionally hijacked — say, by a food allergy response, or a surprise pain flare — and, as I’m sitting there with tears of rage and fear pouring down my face and snarling, inside I’m going, “What the hell is going on? Why can’t I stop this??” It’s The Monster, and it’s off the leash.
    • Because I self-monitor so much, I can usually catch The Monster before things go too far, and I sequester myself (that is, I hide) and do distraction/self-care/Epsom baths/whatever until I’m back in charge as (& of) myself.

Bases for decisions: Information — & Certainty

When is the info in hand enough — both in quantity and quality — to base a decision on? (This is where I really miss those old rapid-processing days.) More fundamentally, how can I tell? Because determining and sorting the value of info is yet another, even higher-order level of processing than collecting it!

Having to make choices based on inadequate, unreliable, or unknown-quality info is a far more common task post-CRPS than pre-CRPS. Stumbling around in the dark and guessing, hoping for the best or maybe for the kindness of strangers, is not yet a default, but it sure is more common.

At some level — probably that mile-high view that my “wise self” hangs onto, whether or not it’s talking to me at the moment — it’s funny to see a super-clever type A whizz kid with delusions of promotion, like I used to be, stumbling around in the dark here. There’s a poetic justice to that, um, adjustment that even I can see. My darker side, perhaps, which I usually inflict only on myself.

“There’s always an afterwards”:
Sequelae & Consequences

Reality doesn’t care what drives my decisions; the “afterwards” I face is going to be what it’s going to be, and derive largely from the choices I make — not the ones I wanted to make, or was unable to make, or wished I could have made. They stem directly from the choice I did make, consciously or not, emotionally or not, rationally or not, wisely or not. It takes, again, a lot of practice and some basic training to keep in mind that there will be an afterwards, and force myself to make the decision that results in a better afterwards — even if it’s less satisfying at the time.

The increasing intransigence of reality is really annoying! Can’t it work with me a little more? Sigh.

The older, poorer, and sicker I get, the less flexible the world around me gets. Being young and perky was all kinds of help — I had no idea!

everyone over 50

I distinguish sequelae (|suh-quell’-eye|) from consequences like this:

  • Sequelae are natural results of something. They may or may not be a problem, may or may not need managing, but they’re just what happens as a result of factors we don’t necessarily control.
  • Consequences are results that must be dealt with somehow. Assessing consequences is part of rational decision-making. Who could be hurt? What might it cost? What kind of damage, or benefit, could happen? They’re predictable, if we stop and think things through properly. So, there’s a level of responsibility involved.

We RISK possible sequelae. We FACE possible consequences.

Too much decision-ing:
What About Control Issues?

In the category of bottomless dopamine sinks…

Trying to control too much of my environment is a total waste of effort. It soaks up decision-making chemistry, burns through my attention like a bonfire, and creates a lot more anxiety for absolutely zero net benefit.

People who knew (or dated) me in my 20’s quirk up one corner of the mouth a lot these days. I’m happy to let anyone decide anything for me — as long as it doesn’t do any further harm. My emotional investment in things like where to meet or what to eat, interior decor, stylistic choices, what others should do — pretty much nil.

My emotional investment in being in control is tightly centered on protecting my immune and nervous systems. That’s about it. Anything that meets those (admittedly, enormous & far-reaching) criteria and then looks for something more from me gets a big, airy, sky-bright “whatever!”

I realized that control issues were really a type of anxiety. I have my past traumas, like most, and loads of current problems which are terrifying to contemplate, so it’s reasonable to be anxious. Not helpful, though. Anxiety stalls my brain out completely.

This ratfink disease forces me to choose consciously — and learn to enforce skillfully — what to let myself worry about. It’s one of the great lessons of learning to live with this disease. Speaking as someone who started out being mildly thrilled by emergencies and wound up, at my nadir, being unable to get out of my home and onto a bus because of long-legged terror looming and lunging at me, I’m the first to say that managing anxiety is a journey, a process, any of those things that won’t be completed in my life because it now is part of my life.

This is why I now meditate twice a day. I was mulling, about a month ago, how much harder it was to keep my temper or keep my brain ticking over at a functional rate. The Dalai Lama’s dictum came to mind: “Meditate for half an hour every day. Oh, you don’t have time to meditate for half an hour every day? Meditate for an HOUR every day!”

I’d gotten to the point where an hour before bedtime was not cutting it any more. Figuring the Dalai Lama has never steered me wrong so far, I added another hour (or so) of meditation, after my morning pills go down.

I retest that now and then, but sure enough, if I don’t have time to meditate for the morning hour, everything takes longer and everything gets worse. If I do take that extra hour, I’m a lot clearer and my rate of being able to get things done — and to know, moment by moment, what I’m most able to do as my “glasses” change — surges up to a new normal. I’d like to get used to that — but never take it for granted!

Counter-intuitive, to say the least, but I care more about what works than about what I understand or believe.

Now, back to wrestling with reality to create possibilities that don’t currently exist… No hurry, though — doing the impossible usually takes more effort; might as well do it right the first time.

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Decisions 2 – housing

Making a major decision, for someone with so little margin for error as a ragged, underfunded, spoony crip like me, means being able to answer all of these questions usefully:

  • What are ordinary needs and requirements, in this situation?
  • What are my particular needs and requirements they create?
  • What’s involved in an adequate trade-off?
  • What does success look like?
  • Are there any choices that meet my needs?
    If so…
  • What are the usual pitfalls?
  • What are my particular pitfalls?
  • How do I avoid or mitigate those?
  • How do I make this decision happen?
  • Red light signals and how to respond.
  • Yellow light signals and how to respond.
  • Gotchas and how to handle them.

So here I am, bringing my laborious and slow-motion decision-making process to finding a home I can afford and survive. Definitely a major decision.

This could be fun. Or gruesome. I’ll find out.

Let’s take a look at this through the decision-making stages I discussed in the previous article.

Developing good info about the problem to be solved

Housing is a crucial human need, especially beyond the 35th parallels.

Hang on, I need to come back. Everything went white for a minute there. (PTSD about facing homelessness and surviving criminally unsafe living situations? Who, me? Yup.)

The need has been around as long as we have, so the laws and practices are pretty predictable.

There are two normal fiscal options: renting and buying. There is one additional option available to residents of Vermont: buy the house from the state, which keeps the land but gives you the right to use the part your house is standing on.

There are three normal physical options: freestanding home, adjoined units (apartments, condos, townhomes/row-houses, etc.), or portable housing (mobile homes and travel trailers.)

Nonstandard options include buying an RV (made and insulated entirely with Isy-toxic materials) and living with a level of mobility and uncertainty I can’t even contemplate any more; or buying a boat (a.k.a. a mold factory) and living on that, which I can no longer afford in any way. I have to eschew them both.

Adult co-housing is a nonstandard option that has some appeal. A group of adults get together, develop a set of guidelines that (through a real-estate attorney) turn into a contract, find and buy a place together, and arrange themselves on the property according to their contract.

I’ve seen that go very well and I’ve seen that go very poorly, and quite a lot in the middle. It’s partly a matter of chemistry, but mostly a matter of writing a good, clear, solid contract and everyone agreeing to play by the rules and being able to live and let live.

All I need is a group of adults who are not only willing and wanting to do that, but have no toxic habits (like painting or baking), are willing to live gluten-free (except for cold food brought in from outside) and are willing and able to give up wifi and live off of hard-wired internet access only — no Bluetooth — and, most annoyingly, respect hard limits on how much time the cable box is on. Radiation off that thing gives me unconquerable insomnia in the other room from 30 feet away.

Let’s look at how the remaining options fit into the questions I need to answer.

What are ordinary needs and requirements, in this situation (home-hunting)?

Safe, dry, warm, with working doors/windows/plumbing/electrics; close enough to where the person needs to be.

Also, it has to be affordable.

What are my particular needs, and the requirements they create?

  • Mold free living, in this green land of upland lakes, swamps, and ubiquitous streams.
  • No petroleum-based volatile organic compounds — a category which includes regular paint, all low-cost and most mid-range flooring, and every conceivable kind of carpet.
  • Significant air pollution. For me, this centers around internal combustion engines, chemical processing, and fossil fuels. (For others, it’s woodsmoke that smells like doom.)
  • Loud noises and the vibrations that come with them. (You know how the nearest bully used to sneak up behind you, and then smack their palms over both your ears at once? Remember that feeling that your head just exploded, and hot shards jinked down your spine? Kind of like that, times about 1000. A vacuum cleaner suddenly turning on can knock me down. I used to live near railroad tracks; not an option now.)
  • Radiation of many kinds. This rules out being near power stations, overhead wires, hands-free phone technology (Bluetooth or cordless house phones) and (this is really limiting:) modern wireless signals, which feel like a blunt spear piercing me just below my xyphoid process and spinning barbed tails through my trunk while injecting molten metal up my spine and into my brain.

So much fun.

Believe it or not, after hearing part or all of this list, I’ve had people ask me, “How do you know that you need to avoid all that?” It’s not the words, it’s the tone. The implication is that all of this is somehow the product of a fevered imagination. If only it were!

I notice my responses, which are not subtle from the inside; I work out what particular exposure caused that response; and, intentionally or not, I get multiple exposures to each of these things because they’re everywhere, so I can test out the theory that a particular exposure causes a particular response.

It takes a special kind of person to go to the extraordinary effort to research substances that affect fragile systems and how, and claim to be that ill and be required to make all those compromises and spend all that money to avoid those materials, and give up so much because of it, without actually having their survival depend on it. That particular mental disorder is extremely rare — a lot rarer than invisible illnesses. Anyway, it’s one thing I definitely don’t have.

Examining the options

Rent or buy?

Good question. Let’s look at those from my point of view.

Renting

Rent tends to cost, month per month, about twice what home ownership does around here, even with all the taxes and fees figured in. Boggles my mind, but there it is. (Homeownership has loads of hidden expenses, but rarely do they double the cost month after month.)

Rentals are supposed to get repainted every two years or between each tenant, whichever is longer. That really sucks for me, because even low VOC paint makes me sick, goofy, nauseous, edgy, and unhappy for weeks.

The majority of rental units have carpeting, mostly cheap carpeting consisting mostly of petroleum derivatives, aggressively outgassing toxins all their lives while harboring mold and less savory things beyond the reach of steam cleaners.

Rental units in my price range are in high density housing (meaning there’s normally pollution, Wi-Fi, and noise completely beyond my control), and every single one that I’ve looked at has a mold issue – a solid, interlaminar set of colonies, usually in the kitchen and bathroom, often in the bedrooms, and if they’re in the bedrooms, they’re in the living rooms as well.

So much wrong.

In any case, unless I can find low income, high density living with non-toxic interior furnishings, nontoxic finishes, hardwood floors, no mold, good air, no pollution and no street noise (which would be fantastic for all concerned!), where all my neighbors have no power tools, dulcet voices, and no interest in using their cell phones every hour of every day (yeah, right), then… I probably have to think in terms of a freestanding house.

From the practical standpoint of having people to say hi to and help shoveling the stairs and the like, I would love to have close neighbors! It’s just that I need not to put myself in a position to be poisoned and tortured by regular people simply living their lives.

Buying

What with one thing and another, I realized a year and a half ago that I would have to focus on a freestanding house – despite all the upfront cost and work involved in that. It’s kind of like jumping off the deep end, an especially apt metaphor for a lifelong skin-diver, deep-water sailor, and former live-aboard “grotty yachtie” like me.

I’ve always had a pretty good instinct for real estate, which annoyed my father more than once – he kept ignoring my advice. The prices here only bobbled, they didn’t bubble; the overall trend has been gradually, consistently, steadily upward for a century or more.

This IS a region where it’s a good investment.

Buying requires good credit, but after LINK some work and time, that’s not a problem.

First-time homebuyers and low-income home buyers have special government programs that make it possible for them to get loans from banks by insuring those loans with the feds. Of course, the federal government has to be working for that to happen. (That could happen any month now. Maybe within a year?)

All I want is a clean, dry, safe-for-me 600-800 square-foot house on a couple acres of buffer zone for ~$135k inclusive, somewhere in the area of Easthampton to Heath to Montague to North Hadley, on a paved quiet road.

This is a reasonable price for a reasonable proposition. However, in two years of looking, it hasn’t turned up.

But I’ll show you what has turned up:

Century floodplain houses

How do you spell “moldfest”? It’s actually called “Sick Building Syndrome”, but either way, there’s a reason these places are cheap and still on the market.
[The century floodplain houses]

Foreclosures
First-time homebuyer loans will not cover these, nor should they. Foreclosures are the ultimate black-box proposition — you have no idea what’s in there, but a few observations and questions have taught me to interpret clues. I won’t bother you with photos, because these have since gone off the market and I’m not researching foreclosures any further:

  • Great little house in a gorgeous spot… with a cracked foundation — I mean a busted-right-open-and-let-the-critters-in foundation.
  • Current tenant dropped not one, but two trees across the driveway. Is that a hint? I was curiously disinclined to investigate.
  • The house has stood empty for over a year, and because of that, any characteristics that weren’t up to modern code are no longer grandfathered, but have to be corrected before moving in. This seems to add 30-120% to the effective price, and in one case I looked at, would have cost 3 times the purchase price just to turn it into a code-compliant property.
  • Extensive plumbing work is often required: in one case, the well went bad; in another, the septic system was toast; in many foreclosures, the sinks and toilets are smashed apart to discourage squatters — and add enormously to the repairs required of pipes, flooring, and walls affected, not to mention the porcelain.

[Several examples of what’s in my price range, with wry commentary]

[The total reno, with the great bones] I love this. I would LOVE to get my hands on this. Sadly, I’m now a formerly handy person. Holding the tools required, let alone breathing the dust and fumes involved, are sot even to be thought of. Breaks my heart, darn it! This would have been so much fun!

My needs and wants are very reasonable, but apparently, a place that embodies them doesn’t already exist.

It’s horrifying to contemplate, but I have to think about building my own. There are so many issues, both physical and fiscal, that it simply boggles the mind. Just to start with, how is a first time, low income home buyer going to qualify for a building loan, even where there is so much documentation regarding these special needs?

I’ve spoken at length with builders specializing in non-toxic homes, one company’s owners giving me what amounted to a three-hour workshop in materials, gotchas, and things to know and watch out for in regard to renovation and building. It doesn’t have to be much costlier, but it requires an enormous amount of project management on my part to keep costs down by researching and sourcing used or overstock fixtures and fittings, hardwood flooring, non-toxic and natural finishes (some of which I worked out how to use on my boat), and so forth.

I’ve come up with a couple of novel ways to simplify plumbing and electrics, which are in compliance with the current building codes. (The electrician and builders I’ve mentioned it to are intrigued and plan to keep my ideas in mind for the future. I find that encouraging.) That’s one way I’ve brought down some projected costs, although it depends on my being able to do certain physical work.

I’ve also researched the toxins, materials, labor, permitting, and costs involved in prefab vs. stick built (traditional) vs. log building here.

What I’ve learned about heating methods (toxicity, mold, fuels, weaknesses, etc.) would bore you to tears. I just have two words: steam heat.

While I have always imagined/dreamed of living in a hexagonal stick built house with lots of windows and two small wings, it turns out my family have always imagined I’d wind up in a little log cabin. It looks like they might be right.

What’s involved in an adequate trade-off?

I have to know where I can be flexible. This wiggle-room could make the difference between having a rational home and spinning off the face of the earth. (Two people who couldn’t find a home in time were found frozen to death yesterday. I’m trying not to think about that.)

There’s a little bit of slack in my needs, but not much.

Radiation (from heavy electrics, heavy electronics, cell phone towers too close, and wi-fi) is a no go.

VOCs that can be washed off, treated with pine and baking soda, or aired out in a few days would be fine.

Treatable mold would be fine, but, unfortunately, by the time it shows, there’s usually a well-established root system inside the wall and mitigation becomes the sort of iterative, messy, relentless, and ultimately unresolved nightmare that usually takes three scream queens and gallons of artificial blood to get across on the silver screen; respiratory struggles, immune failure and mental impairment aren’t nearly as dramatic on the outside as they are on the inside.

What does success look like?

I could be really flippant and say that success looks like an added hundred thousand dollars free and clear in my mortgage account. That would definitely put me in a price bracket that would allow me to have my log cabin, with the right fittings and finishes, in a safe clean area, with everything I need and nothing I don’t. Plus…

I used to dream of having a big enough property to put additional cabins on, and provide safe non-toxic living for friends who like small spaces, and maybe some glamping spots for the summer. I’ve already got 2 friends who’d love to sign that lease as of yesterday, and 3 more who’d love to think about it, and that all turned up in 2 conversations. There is clearly a market for safe, small, inexpensive housing, and it would be a good, benevolent, and sound investment. However, the start-up costs (more buildings, more slabs, more plumbing, more septic, etc.) are unthinkable for me. I just don’t have that.

This is where being poor is super frustrating. (Yes, I really do think this way … I’m more frustrated that I can’t help others than I am that finding a place for my own self is so hard.) I could so easily provide safe and sane housing for people who, like me, are fighting their environments all the time, and who would, if they could, much rather be using their energy to contribute to the world. And helping pay my mortgage. There is no downside.

There is no money for it, either.

Okay, onward.

What does success look like?

It looks manageably small, manageably affordable (or self-supporting — hello, cabins!), safe, clean, healthy, nontoxic, and warm.

I have a lot to do, and a lifespan truncated by probably 25-30 years. I’m genetically wired for my 90s, if I don’t smoke, which I don’t. So I’d better hustle!

In order to do my work (write my books, produce my pain-mitigating products, do live trainings on handling chronic pain and disability at home and at work, etc.) I need a home that doesn’t make things worse; Time alone will do that. It doesn’t need any more help from my living environment.

My success path is very, very narrow. I’m still not sure how to get there, but I have a few more interviews with specialist professionals ahead of me.

Are there any choices that meet my needs?

According to two years of market research, there is nothing already built that meets my needs in my price range.

I might have to make it myself, whether I like it or not, whether it’s easy (which it was never going to be) or not, whether there is any standard path to get me there, or whether I have to forge ahead and work the steps out one by one, going purely by what works for me – as I did with CRPS for so long, before clinical practice caught up with what I was doing.

I’m a very reasonable person. I’m just in a very unreasonable situation.

…Again.

I’m almost used to it. Sigh.

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Decisions, decisions, decisions (this is a triptych)

WordPress has utterly changed their writing UI. Apparently, they felt the need to reinvent text entry… (um… Why???)

I usually hold off on publishing a post until I’ve got the formatting tidied up and the images in. I can’t even figure out how to do that yet. So I’m posting a couple of ragged, really funny-looking articles, because it’s better than not posting at all, and there is SO much to keep up with I don’t want to keep falling behind here.

Back to our regularly scheduled programming…

As I’ve said before, making decisions amidst pain-brain and the neurowackiness of CRPS is not the easiest thing to do.

It takes more effort and time than it used to, but the years have led me to certain strategies that help me make good decisions pretty consistently, even though doing so is such an up-hill task.
[Sysiphus image]

1: Good info about the problem.
The idea of “good info” is key. For health and practical matters, I need my info to be coherent, consistent, reliable, and reasonable. Above all, I need it to reflect reality — in other words, to be true.

Opinions are not info, except when they are.

“Hey, thanks for that totally meaningless sentence, Isy! That’s not confusing at all!”

But seriously — a professional opinion, about something that’s pertinent, does matter. That opinion goes into the data pool.

Personal opinions, which are usually accompanied by logical fallacies[LINK], are not data (except to sociologists and comedians) and will never be useful to me. I can provide my own, if I want them. I’ve got loads of opinions, but they go up on the shelf when I’m culling information.

I need facts, data, professional (or highly-skilled amateur) quality input.

At this point, I’m not always as diligent about that as I think I should be. A large part of this early stage of inquiry is getting a sense of the social and cultural clues. I find it almost impossible to immerse myself in a subject without letting in some of the noise around it. /shrug/ Not perfect yet.

1a: Enough good info

After mulling things for a bit, I find that the lower-quality info annoys me instead of pulling me in, and I seek out more higher-quality info with a better basis in experience or science or whatever the best measure of the field is.

I’m building a mental map of the field, and where I see blank spaces, I try to fill them in with information.

  1. Good information about my options.
    This is where it gets interesting. Because of my significant non-standard needs, which are not so much a matter of taste as of survival (key point there!), I have to put extra time, diligence, and effort into developing a good list of options, because by the time I’ve done a reality check to evaluate my options against my diseases and disabilities, the REAL options available to ME tend to be few — even where most people would have a lot to choose from.

This is one of those occasions where the limits I live with just hit me in the face, and I have to figure out how to deal with a reality most people can’t even wrap their heads around as anything other than a bizarre whimsy or a sign of questionable judgment.

That hurts.

Moving right along here…

  1. Time to digest it

[use nav. tree image to illustrate how I absorb info, so it can be used as needed in any context.]

Reality check #1 — floating trial balloons
This is when I can sound half-cocked, because the decisions are floating around in my brain in about 5 dimensions and don’t readily lend themselves to explanatory words. Action words, yes, but not explanatory ones. So,it sounds like I’m going off half-cocked, when what I’m doing is trying on a decision for size.

My focus is oriented towards implementing my current decision, and of course at the time I always think it’s the Real Plan. If I didn’t, I wouldn’t focus as hard and pay as close attention to what goes on when my decisions meet the outer reality.

At this point, I’ve got the basic decision made, and I’m roughing out how to make it happen.

Because I have a peculiar set of circumstances (in every possible respect, it seems), my decisions are rarely off-the-shelf solutions. Every solution is customized. They have to be, or I suffer, lose brains, and die horribly. Or, at least, things don’t go well. YMMV — my mileage varies all the time.

  1. Digest results and lessons learned
    Just what it says. This is a semi-conscious process that I can feel happening, but doesn’t lend itself well to description. It’s more of the tree-and-grass activity, adjusting and tuning my ideas and understanding all the way down and all the way across and all the way up the related chains of ideas. It takes a lot longer than it used to, but it does happen if I’m patient and let it be.

In time, what I don’t know becomes obvious to me, and what I need to unload just goes.

If, at this point, I’ve got a workable choice, I’m done. Time for the next task.

If not, time to re-assess and re-evaluate.

  1. Seek out more and better info
    At this point, I’m past online research alone; I need to talk to experts. This involves phone calls and meetings and interviews. The face-time may not be free. The mobility may not be easy. I may have to spend more time on the phone than my brain is, er, quite happy with.

This one-to-one contact is a super-effective way for me to get more info out of people than they’re aware that they’re sharing, so if I can afford it — physically and fiscally — I’ll do it.

Naturally, being me (and wanting to get the most out of everyone’s time), I prepare for these conversations. I want to make sure I:

  • Have the vocabulary. I’m not at all afraid to ask for corrections, but it’s essential to have a working vocabulary of the subject and the major professionals involved. An hour or four over a few days of web-reading usually provides enough context for me to get going with.
  • Can show an intelligent interest in them and the subject. They need to know I’m taking them seriously in order for them to take me seriously. An extra 15 minutes on their web site, learning about the people and history behind the industry or company, pays off hugely.
  • Have a clear, specific answer to the question, “What can I do for you?” I need to know what it will look like when I have the answers I’m looking for. That means I need to have a pretty good idea what my questions should be. This is rarely as easy as it sounds. All those orbiting words and ideas have to be beaten into some kind of shape so the question marks bursting out of my head have meaningful sentences in front of them.
  • Have note-taking or recording equipment appropriate to the format of the meeting and my physical and attentional abilities at the time. I need notes. As medical professionals get drilled into our heads, “If it isn’t documented, it didn’t happen.” Plus, I want to make sure I get the data right. The ideas I can process; it’s the facts and figures and new terms I need to preserve.
  • Correct contact info for those I want to talk with. (It’s the little things…)

Since the bulk of my online research has already happened, the online part of this “more and better info” search is largely backward-referring:

  • Reviewing the websites I found most helpful
  • Chasing down data or info that seemed less important then, but deserves attention now
  • Filling in holes I didn’t notice or didn’t care about before, but want to clear up now
  • Going through my Evernote directory, if it’s a subject that needs one, and making sure I have enough info in it that I could go back and reconstruct my reasoning just from my information pool.

The discussions and “interviews” with friends and trusted contacts are important (especially in relation to whether an option matches my needs) but much more casual. A significant exchange can happen in 15 seconds at the deli counter or between gossip and talk about the weather. I can “download” a huge amount of info in these brief, solid exchanges with people who know me well.

Therefore, after a certain (large) amount of data-gathering, thinking, and processing, it’s essential for me to do sanity-checks and get assessments from friends and contacts I trust in that context.

  1. Reality check #2 — feasible plan, with fallbacks
    This is where the adhesive meets the tacky surface. There’s a lot more weight and momentum behind a plan that falls into place after all that thinking and working and studying up and experimenting, and it shows.

At this point, I should know what a successful outcome involves, what the major pitfalls — both generally, and for me particularly — could be and how to avoid or mitigate them, and what the likeliest way to implement the decision successfully should be. I should also have a good idea what “yellow light” and “red light” signals to look for, and what to do if they happen. I should have a good idea what the first round of “gotchas” might be and what to do to avoid them or deal with them. (Later “gotchas” are less likely to be out of the blue, and can be figured out more easily.)

To think it used to be so easy, and lightning quick, before I got sick.

I remember wondering, almost a decade ago, how I could possibly make sound decisions when there was so much that was so uncertain in my mind. The time passed, I kept working on it, and the decisions involved in making a process for decisions evolved into something repeatable and reliable. Phew!

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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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