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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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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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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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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When I lose everything but me

This is one of several blog posts I drafted late last year and got distracted from.

This isn’t the duckiest or most amusing one to read, but it’s so important for so many that I’m posting it anyway. (My mother will probably want to give this one a miss.)

This level of fundamental-ness has a certain appeal in the depth of winter.

Fortunately for me, I don’t have too much trouble with existential questions. At a certain point, when everything I thought defined me had been blasted away, and in my mind there was not a single structure left that held a fragment of my old self, and all I saw stretching away to the mental horizon was blasted mud and broken stone and shapeless lumps and rot… I asked myself, “None of ‘me’ is left. Who am I?” And I realized that something was standing there, doing the asking.

That was my answer: I’m what is left after everything has been blasted away. I’m the immanent awareness, unable to be seen or described, simply because only less-permanent things can be seen or described.

As I think about that last sentence, I realize why objects lost their fascination for me. It was weirdly easy to get rid of gorgeous and glorious things I could no longer afford to keep. A couple of them I still miss, like my old bedstead (birdseye maple, passed down from my grandmother), but very few.

Things did get worse for awhile, and only curiosity kept me alive. (I simply had to know how the story went.) It propelled me through the work of surviving when my body had failed.

Angels appeared just before it was too late — several times; my life was a solid group effort — and eventually I fled the area and got my disability check (yes they were related) and could afford to survive. I have some photos that seem ethereal still, I look so nearly gone, smiling back from the edge of the grave, happy I don’t have to take that last step.

me_wrysmile

As usual, lately, I’ve wandered off-course.

My ability to track a tale (remember I survived the impossible because I had to see how the story went?) is enfeebled. It’s barely tottering along on one of those cumbersome canes with 4 feet, too heavy to lift and too necessary to leave behind.

I grind to a halt in my post, forgetting what I started this for, but this time, I’m letting you in on the secret. This blog is not retired, and being incapacitated has not excused me before, as a flick back would show. Or even when I was blowing bubbles.

I’m approaching this winter with the determination that it will be different than the last, which was an endurance exercise — one that went on for 9 months, as Spring never sprung and my Summer was clouded by meningitis.

So far, I’m getting more physiotherapy, more outings, and even have a weekly pain group I meet with. The higher level of activity is key; because exercise is so important for healing and supporting the brain, I have to find ways to stay active, despite the obvious drawbacks for someone with roaring sensory and cardiovascular issues to leaving the house during a New England winter.

I’m pleased with that. Yay, me!

Now for the other part.

Too much exercise is poisonous, because I have a solid case of exercise intolerance. I can safely walk less than a mile, which really irritates me. It takes that long just to warm up!

Also, drawing and sketching is back to being hard work. For awhile there, sketches flew out from under my pencil like they’d been crowded in there too long. Now, it’s stick figures with bad hair. I draw anyway now and then, because it’s better to keep trying than to give up altogether.

I don’t want to exercise too little or draw badly, but I do it anyway. Why? Because there’s always an afterwards, and I still have to work on influencing an “afterwards” I want.

Meanwhile, as my ability to juggle logistics is holding ground, my ability to juggle language is slipping.

After I was a nurse, I was a writer. Before I was a nurse, I was a writer. I started calling myself a writer before the age of 10, and started rescuing and healing animals shortly after.

George_Goodwin_Kilburne_Writing_a_letter_home_1875

I’m crashing into the stupefying question: “What am I, if I’m not a writer?” I feel like nothing without that. I feel like an intrusive blob of snot on the face of the earth, out of purpose and out of place and not very pleasant to have around.

My immanent awareness looks on as my sense of self weeps helplessly. It is what it is. I am what I am… whatever that is. That will always be true, even as everything else changes.

Meanwhile, though my strength and endurance are rather better than I’d hoped, my blood pressure and pulse are less stable. One more set of variables (or issues) to chase down, one more group of tests to orchestrate, one more set of diagnostic efforts to get through, one more possible adjustment to my regime to figure out, integrate, and absorb.

By the way, that lower abdominal pain has no treatable cause. Nothing to be done but roll it into the bundle of issues (or variables) to manage and work around. Every. Freaking. Day.

This is what it’s like for me to head into winter.

A cousin and I promised each other that we’d live forever until the day we die. That agreement still stands, but gee whiz, could this be a little less tiresomely complex??

Update: And here I am, 2 months later, writing again. Still waiting for drawing to come back, though.

Digesting my food is hard work now, again. Always something.

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Dropping the ball… and kicking it along for a bit

To cut a long story short, I wound up with insufficient medication before my next pain doc appointment, and had to cobble together my full dose by using 3 smaller-dose tablets. Periodically over the last month, I’ve been peering quizzically into my bottle and wondering if all those little pills were going to last long enough.

Late last week, I finally had few enough that I could count them. (Due to perceptual issues, looking at a lot of little identical objects makes my eyes swivel, and I can’t keep track of them, even if I pull them out a few at a time. They appear to dance and swim without any help.)

Well, I had a problem. I couldn’t parse what to do about it because I didn’t know who to ask. My pain doc had been a bit more high-handed than usual at my last appointment, so I didn’t expect sympathy there, especially as it implied his math was wrong. I knew my GP would feel understandably uncomfortable prescribing a med he didn’t know well and didn’t normally use, which was normally prescribed by a high-flying specialist in a narrow discipline. That’s a lousy position to put a GP in.

I froze.

Stylized image of woman asleep with enormous red and black dress billowing around and supporting her. White snow falls from a deep blue sky

So, regardless of the record heat and shocking floods elsewhere, New England has been cooler than usual, perpetually cloudy, with the Spring rain pattern (3 days and nights of constant rain, one and a half days of sun, a day or two of mostly clouds, 3 days and nights of constant rain, rinse and repeat.) This does tie in — really.

The reason it ties in is because summer gives me my recovery time, which involves sun and warmth and outdoor activity. 3 months of sun, warmth, and outdoor activity is what makes me strong enough to endure a New England winter.

It was so gloomy and chilly this summer, we dug up the money to go to California to recharge our bodies’ batteries. That didn’t go according to plan at all. As some of you know, I had viral meningitis from the day after we landed to 2 days before we left.

So, not much recovery, just a whole heaping helping of extra damage to recover from!

Then, of course, I had a relapse 10 days later, just in case I was getting too perky.

This summer has left me with a brain that’s just not up to par. So, rather than doing my usual thing of targeting the issue and parsing its components and figuring out what solution solves most of the elements, I … froze.

Stylized image of woman asleep with enormous red and black dress billowing around and supporting her. White snow falls from a deep blue sky

I started cutting the third of the 3 little pills in half, and taking two and a half, so I could buy a little time to think. Since that works out to my normal summertime dose, I didn’t question it much. It occurred to me, just as I’m writing this, that it has really crippled my ability to think, so that was not my usual problem-solving level of skill. Sigh.

I honestly can’t remember how I wound up on the phone with my doctor’s office on Friday. Wait, after 5 minutes’ cogitation, I do: I hadn’t heard from referrals my primary doc was supposed to have written 2 weeks before. Usually right on top of things, he had documented that he intended to make the referrals, but forgotten to enter the orders to do so.

The compassionate office lady asked how I was, and it wasn’t until then that I said, “Actually, I’m kind of in a bind,” and explained about the meds. To my complete lack of surprise, given how things have been going, it turns out my primary doc is on vacation this coming week. She left a note for whoever’s covering for him.

Since then, of course, I’ve been trying to work out whether I should call during the weekend, when coverage is even weirder and less accountable, or wait until Tuesday and the first day of business this week, and try to coherently answer the question of why I didn’t call sooner, and hope and plead to get my meds from someone who doesn’t know me and is working too hard to feel for one more sad case.

So … I’m froze.

Stylized image of woman asleep with enormous red and black dress billowing around and supporting her. White snow falls from a deep blue sky

Meanwhile, my feelings and my disease-driven propensity to worry paralyzingly, are all honed to a ridiculous edge. Once my pills get past the cannon-ball feeling in my stomach (almost past the half hour mark; 15 minutes to go) I’m going to do an hour of meditation, which I expect to roughly track the pattern of the meditation I did during the meningitis episode: 20 minutes of pure inward flail, breathing quietly while my mind and emotions just went off like a carton of firecrackers spilled on a brush fire; then, once that calmed down, my thoughts chased each other like frantic squirrels for another 20, not slowing appreciably until the last 2 or 3 minutes; then 10 minutes of one or two issues or ideas holding fairly still, allowing me to turn it over until it’s transformed into something peaceful by the pure attention; and then the rest, finally, gradually, moving into a pure and floating calm.

They say that one should meditate for an hour every day. If you don’t have the time for that, make it two hours. I hold this as a constant goal. Sadly for me, I can normally only push myself to sit down and shut up like that when things are so bad all I can think to do otherwise is scream.

I need to work on that.

This was going to be the year I learned to meditate and do t’ai chi pretty much daily, no matter what level of peace and calm there was in my life. I’m embarrassed that, even at my age, I still seem to need some chaos to let me bring enough pressure to bear on myself that I’ll do these key self-care activities at all.

Something to mull over in the contemplation stage of some meditation!

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Freaky Fibro and the elegance of precision

As the title hints, it’s been another fascinating visit with my pain diagnostician.

His current working diagnosis is fibromyalgia, which he characterizes as being capable of throwing some hairy curve balls (my terminology, not his) including the growing litany of food sensitivities, which solves a major problem in my mind.

Thyroid disease can also trigger the symptom complex that otherwise gets tagged “fibromyalgia” (more on symptom complexes in a minute.) I mentioned that I’ve had my thyroid checked several times and last year came up with Hashimoto’s (meaning my immune system is attacking on my thyroid.) Since I developed the first symptoms of this central sensitization around 16 years ago, it seems not like a precipitating event; since “normal” thyroid activity is not the most meaningful term, I’m not sure it’s irrelevant. I guess I’ll learn more as we go on.

He’s also checking my hemoglobin A1c to check for underlying blood sugar instability. I’m always happy to check that. Also B12 (pernicious anemia etc.) and D3.

Now we come to the fascinating (and crucial) distinction between a symptom complex and a disease. Both are used as diagnoses, but they mean different things. (Yes, I’ve used the word “disease” indescriminately here, for simplicity.) Medically speaking, a disease has a cause that can be targeted, what you might call a diagnostic end-point. A symptom complex doesn’t have that level of targeted responsibility for the illness; it’s a consistent set of symptoms that cluster together often enough to get a diagnostic label, which takes some doing.

Here are the two scenarios.

On the one hand, you’ve got someone with a lot of pain, funky guts, sensory reactivity, and normal labs. The doctor (we hope) rules out any other possible cause, and decides the diagnosis is, say, Fibromyalgia. This is a symptom complex, because it’s described in terms of what it does to the person, not in terms of specific pathogens or organs as the causative thingy. (I’m tired; thingy will do.)

On the other, you’ve got someone with a lot of pain, funky guts, sensory reactivity, and thyroid labs that are out of whack. Further examination of the thyroid discovers specific thyroid abnormalities which can be treated. With treatment, the symptoms subside or even disappear. The diagnosis is the disease of hypothyroidism, with a diagnostic end-point in an organ (as in this case) or pathogen.

CRPS/RSD, Fibromyalgia, and some other hideous conditions are symptom complexes. This is used by some as a reason not to “believe in” those conditions, because they aren’t “real.” This is intellectually dishonest, but it does no good to tell them that; assuming that a lack of diagnostic end-point equals lack of ill-health is blatantly absurd, but this is a reality we must contend with. It’s a drawback of having such a flexible language as English, where the same word can mean different things from one context to the next: in Plain English, disease and illness are interchangeable, but in Medical Jargon, they’re definitely different: disease means specific diagnostic end-point, illness tends to suggest a pathogen, and condition is the catch-all term — but is used more for things that really aren’t diseases or illnesses. Another example on a hot issue: in medicine, narcotic refers specifically to opioid analgesics; in law enforcement, it’s a MUCH wider term, encompassing any substance that legislators have decided is not legal. In courts, the meaning of the term has to change depending on who’s involved, which has to be weird.

No wonder there’s confusion around anything medical. What a setup, eh?

This brings us to the physician ethical structure this doc works with, and where it fits into this patient’s worldview. You can almost hear me purring comfortably from here.

He speaks of himself as a Palliative Care specialist. Most people think of Hospice when they hear palliative care, but it’s wider and simpler than that. It means this physician has chosen a field defined by the fact that his patients will probably never recover. That’s what palliative care means: keeping the patient as comfortable and functional as possible, for the rest of their (probably, but not necessarily, truncated) lives.

Yeah, pretty darn special. How many of you who see pain docs hear them use the term “palliative care” naturally and fluidly, without wincing and scuttling on? It’s a little thing that means a lot. It makes me realize I’m seeing a doctor who CAN be there for the long haul, if need be. Someone who would NOT throw me off with the very natural cringe of frustration and failure most docs feel when they can’t save you, or when you’re in the final downhill slide and they can’t face you dying. He can take that strain without failing me. That’s rare indeed.

Palliative care is the very heart of chronic pain care, and I couldn’t face that myself until today.

So now I just have to die before he retires…

Kidding, Mom!

I’d like to go over his approach more, but the fog is descending; it was an early morning and I’m paying for it as usual. I’ve got lots of notes, though. It’s great food for thought, so, with luck, I’ll come back to it.

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Fifty One

Guess what? Everything’s up in the air, except me. But don’t worry, it’ll work out.

And that, folks, is how you know I’m back in the saddle. I’m not naturally a nervous person, but the years of system and systematic abuse on top of the fried central nervous system left me very nervous indeed. Every uncertainty was like a set of razor-wire boleadoras, ready to spin out and knock me over and tear me up.

line print of gaucho from the 1800s riding a horse after ostriches, swinging 3 stones tied together, a set of boleadores, to tangle the ostrich in.

Ghastly image, but very apt, as some of you know from your own experiences!

Of course, this slice of recovery is just well begun, not done. I’m simply able to reflect on possible futures without melting down reflexively. I’ll still have bad moments, bad days… and they will pass.

After all, there’s always an afterwards.

So, I’m 51 today, and I can honestly say I didn’t expect to see this day. You’d think my 50th would have been more reflective, but no, this one is.

I realized I’ve been blogging for 8 years, maybe 9. The first year and a half were justly lost in a Google flail, in the early part of the Pit Years. They were online journals, not blogs; the point of blogging is not to rip my skin off for reader amusement or “inspiration porn”, but to trace one path through the thickets we all have to travel, and trade ideas that help others find their own paths, or at least make them more bearable. (Tip of the hat to the friend of my youth who had the integrity to tell me she didn’t want to read my diary.) I’m more grateful for my readers, in all your kindness and struggles and brilliance and care, than words can ever say.

51 is starting with a bang, or rather continuing the same bangishness that has characterized this year so far.

I’ve found out I don’t currently have gall bladder disease, detectable spleen or pancreatic disease, or any form of cancer growing in my gut, just some “mild” gastritis. This leaves the question of what’s causing the rather extensive GI issues open for further inquiry. I’m going to see if I have mycotoxicity, which is looking very probable indeed, going on reactions and the fact that even the weirdest symptoms on that list are mine; going to find out if my body is able to respond well to a massage intensive (twice weekly for some months) or not; going to finish the final house repairs (as soon as the weather warms up long enough to let us not only recover from the cold but then get past the setting-up); and going to find out where we’ll go next, when the lovely house we’re living in sells. (My credit will age out of the worst black mark next year, so getting a house loan is simply a matter of time, with ongoing diligence. Not to mention knowing where to land.)

I’ve been reflecting on J’s unique mix of gentleness, brusqueness, flexibility, and intransigence, and realized how much he helps me in nearly every phase of his personality. (To misquote a capable yenta I knew, the holes in his head fit the bumps in mine, and vice versa.) I wondered how much further I could have come if he’d been there when I first got sick, or before I got sick. What great work I could have done.

Then I remembered, oh yeah, my ego was very much in the way — as that egotistical sentence pretty well indicates (what about your partner’s work, eh, Isy?) We would have loathed each other on sight, as both of us were cocky little jerks back then. It took losing everything that I thought defined “me” and “my life” to realize what really matters in a person — and in life.

I learned that love isn’t my driving force, it’s the anodyne that makes living bearable; curiosity is the characteristic that drove me out of the grave. I never would have guessed at the pure slingshot force of it.

So, though I don’t think I’ll see another 51 years, I can see that I might be wrong about that too. I’ll start heading that way now. I’ve got good company, outstanding friends (some of whom I’m related to), and interesting things to do. Onward.

May the future be worth the trouble of getting to it!

Panoramic view of Road Town harbor in the tropics
H’mm… that looks good!
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Aw, nuts!

While I was mulling the constancy of nausea and yuckiness, looking for a reason more useful than “it’s winter”, I realized I had relentless cascades of post-nasal drip.

The stomach isn’t too fond of relentless cascades of post-nasal drip, because the glucoprotein complex generically called “mucus”, which we usually call “snot”, is not that easy to digest. It’s not really meant to be digested; it’s meant to do its job (picking up and trapping obnoxious particles or germs or what-have-you) and then get blown out. It’s not supposed to roll into the tummy in a never-ending stream.

me-tongue-out

I was reading up on GI issues (as one does) and stumbled across a piece which said something like, “Stay away from nuts and seeds entirely. The oil is rancid by the time it gets to you and that rancidity is poison to the systems of people who have leaky guts and sensitized systems. You can usually tell because the immune reaction affects your sinuses and causes lots of extra mucus.” If you’re curious, this article was about the GAPS diet and explained the whats and whys.

I threw my hands up in exasperation and disgust. I relied on nut and seed butters to start my day, because they cut the morning pain down to a quite bearable level and gave me a bit of protein that didn’t bring my stomach up in revolt. My mornings are tough enough and this info just pissed me off.

The next morning, I woke up noticing that I didn’t have post-nasal drip. Nice. Then I started on my morning breakfast of apple (malic acid helps the pain ease off too) and sunflower or almond butter (I forget which.)

Two bites…. then a relentless cascade of post-nasal drip.

My first thoughts were mostly expletives. Totally unprintable in a family-friendly blog.

I went off the rails a bit. I’ve been dealing with this disease complex for nigh on 15 years now and I have evolved a pretty limited (and not cheap) diet to manage it. Rather than thinking, “Oh great, a good clue as to what I can do to improve things!” I mentally roared, “WHAT THE BLEEDING HECK CAN I EAT ANYWAY????”

Tiger yawning hugely. Looks like roaring.

Let’s review.

– Genetically-determined mild allergy to white beans. That means soy, chick peas (which wipes out hummus and much Indian food), most multi-bean soups and salads.

– Roaring neurologic gluten response, which in my case spills over into related molecules. This means: no wheat, barley, triticale, rye, oats — in fact, most grains; nor fresh milk, soft cheese, dairy ice cream; and eggs only in strict moderation.

– Hashimoto’s disease means my body is chewing up my thyroid. This means definitely no soy, but also, no broccoli, chard, kale, bok choy, cauliflower — no cabbage/brassicas of any kind — and that’s an awful lot of vegetables not to have as an option, including most winter veg. And yet, I need lots of vegetables and happen to like all of those. Even in small amounts, brassicas can squash thyroid response. It’s very sad.

– Candida/c.diff overgrowth, which means no sugars (not even unrefined honey or maple syrup, not even low-glycemic stuff like agave [which makes me cramp] or maltose), no rice, minimal fruit, no juice, no root starch (too high in sugars) or white starch of any kind (if I’m doing this diligently) which wipes out the potato family and remaining grains except amaranth (I can’t digest quinoa at all, so it’s not even an option.) Then there are the limitations that are less obvious, which means, no tea or coffee, no vinegar or cultured food (if I followed that parameter, I’d be unable to digest anything and my guts would be even worse), no artificial anything because they tend to be grown on yeast or malt slurries (which is fine because packaged foods tend to happen to other people, not me.)

– The constant immune-y fuss means I should probably be more diligent about the inflammatory culprits: tomatos, eggplant, potatos, peppers, the whole belladonna group. I LOVE those things. Also, no canned foods, because the trace amounts of preservative stuff are so neurotoxic that molecules matter to my body, and homemade canned stuff can still grow trace amounts of the fungusy-yeasty stuff that boots me back into candida territory.

– Now, no nuts or seeds. At all. Possibly no cooking oil. I was diligent about getting the freshest and checking best-by dates and inspecting the packaging, for the candida reason. Not enough any more. No nuts or seeds at all.

OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW

I think i’m down to squashes, lettuce, and incredibly expensive pastured/wild flesh foods. Oh, and grassfed (Kerrygold) butter. I can put that on the squash, I guess.

To be frank, I haven’t been very diligent about eliminating the root veg and I’ve had some broccoli and cauli lately, because it’s freaking winter and I’ve needed to eat something that’s available.

Since reading about the nuts/seeds thing, I totally fell off the rails. No gluten, because I’d rather die than go through all that again, but I’ve gone to town on sweets, rice, vinegar, ice cream, root veg, brassicas, belladonnas — everything but nuts and seeds.

Wide-eyed kitten staring at a roast chicken on table in front of its face

Paying the price for it, too… as one does.

Two nights ago, I made myself a new bedtime meditation recording, designed to rebuild my own mental core. I’ve just about had it with trying to cope with the world (if you have one eye on US politics, you’ll understand that well enough, especially if you have friends and family who are losing care due to political brangling, losing property due to corporate gamesmanship, or losing their liberty due to being not-White); add to that some family crises of illness and a bereavement in the extended family, and… yeah.) I’ve reached March feeling absolutely shredded inside.

And then…. NUTS!

Old amber-screen lettering showing *TILT* like on old pinball machines

Lately and increasingly, my brain was really resisting the relaxation response training — which is very odd for me — and I was having nightmares and waking up 5 times a night. I thought that, if I backed off the calming exercises and instead re-integrated my core self, that would make more sense than trying to pretend everything’s all right for half an hour. I have no idea what that looks like for other people, but I have a pretty good idea what it looks like for me. So, I made a recording with a series of mental/imaginative exercises that boil down to my individualized psychological structural support.

The chaos and rage are abating, which is just as well, because I have a follow-up appointment with my pain specialist tomorrow. I’m calming myself down with this article before turning my fragile attention to encapsulating the physical fallout and revelations of this winter in a coherent patient update.

I get to tell him that I’m seeing the GI specialist later this week, and that I have tested marginally positive in a screening test for mold toxicity, so more blood tests are coming from my allergist. That would actually explain a lot, but I’m not sure where he stands on the subject. Mold toxicity, as a driver of illness, is one of those things where the physician’s belief-state has more bearing on care than the coherent, consistent, verifiable facts of the patient’s disease-state — in that respect, it’s like chronic fatigue, neurogenic pain, and most immune disorders. Familiar territory to many of us.

A few days ago, I apologized to J for being such a piece of work lately. I told him I’ve been ill and in more pain than usual. He said, with the kindest intentions, “Well, it’s hard to act right when you’re sick. You have to feel good.”

I said, “I never get to feel good. It’s just different levels of –” (waved my arm expressively.) “I usually do a pretty good job of managing myself anyway.” He agreed, bless him.

That first phrase, “I never get to feel good,” has been preying on my mind. But then, it’s winter. This will pass, and I’ll find it easier to put my focus where it belongs — on what I CAN do, CAN eat, CAN feel, that’s not so — (wave my arm expressively.)

Until then, I’ll keep breathing, keep making my appointments, keep tending my relationships as well as possible, keep up on my documentation, keep on keeping on. As one does.

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