I haven’t got time for the pain

I haven’t got need for the pain, either.

I confirmed something very important, this past week – if I do not exercise vigorously, first thing in the morning before I do anything else, I pay for it in pain.

For those who know what it is like to battle chronic pain on a daily, weekly, monthly, yearly basis, over the course of months, even years, you know what I mean, when I say, I will do anything in my power to keep this pain from taking over my life.

For those who are lucky enough to not have that experience, you can say instead, I will do anything in my power to keep [insert something you detest and despise] from taking over my life.

I happen to be one of the former types, plagued all my born days (at least, as far back as I can remember) with pain. Painful touch. Painful movement. Painful just about everything. The only times I have been pain-free have been in the extremes of human experience — when I am either so deeply engrossed in what I am doing that my focus blocks out any sensation at all… when I am pushing myself beyond my limits to see how far I can go… when I am so deeply relaxed and entranced that nothing of human experience can penetrate the divine aura that surrounds me.

In those extreme places, I am free of pain, I am more than myself, I am a piece of a very, very, very large puzzle that dwarfs discomfort with its vastness.

But one cannot always live in the extremes. I’m neither a cloistered monastic, nor a sheltered academic, nor a professional athlete, nor a maverick rock climber. I am a regular person with a regular life, and that life just happens to be fraught — at times — with almost constant pain.

Ask me if I have a headache on any given day, and my answer will not be “yes” or “no”, but “what kind of headache?” and “where precisely do you mean?” It’s a given, that my  head will hurt. And my body, too. It’s just a question of degrees.

At its worst, the pain is debilitating. 20 years ago, I had to stop working and drop out of life for about 5 years to get myself back on my feet. Over the decades since then, the pain has fluctuated, its impact on my life varying. The variation has been due, in no small part, to my mental determination to not let it stop me. In many cases, I refused to even acknowledge it, even though objectively I knew it was there. I went for years telling myself  I was pain-free, while at night I would be forced to stretch and press points up and down my legs and take plenty of Advil to get myself past the searing ache in my legs, hips, and back.

Denial is a funny thing — so useful, so essential, at times, and so easily used, even when facts to the contrary are obvious and intrusive.

Over the past several years, however, as I’ve become more and more cognizant of my TBI-related issues, pain has made itself known to me, and I have ceased to deny it. It’s a double-edged sword, that. Even if I don’t deny it and am determined to do something about it, my plans don’t always work, and I cannot always accomplish the level of pain control I would like.

In those moments when my honesty is far more than my ability to deal effectively with my discomfort, I curse my newfound determination to be upfront and frank about every little thing that is amiss with me. I have so many other issues to think about — do I need to add unstoppable, unmanageable, uncontrollable pain to the mix? Wouldn’t it make a whole lot more sense, to acknowledge and focus on issues I can actually fix?

But now that the lid is off Pandora’s box, there’s no sticking it back on. I have to address this pain situation, I have to do something about it. I cannot just sit around and boo-hoo. Nor can I run away from it and keep telling myself it’s not an issue. It is an issue. A very sticky, troubling, problematic one that holds me back, perhaps more than any other issue I have. It’s not just physical, it’s emotional and psychological, too. And it demands acknowledgement and work, to address it.

So, I do. I get up in the morning — like it or not — and I exercise. I roll my aching, complaining body out of bed, pull on my sweatshirt over my pajamas, slip my feet into my slippers, grab my clipboard and pen, and I haul my ass downstairs. I fill the kettle with water, put it on the stove, and turn the knob to 3 or 4, to give myself plenty of time to work out before the water boils. Then I pull the curtains in the room where the exercise bike is, so I can work out in private, put my clipboard on the magazine holder on the exercise bike, climb on, make a note of the time I started, and I begin to pedal.

I ride for at least 20 minutes — 15, if I’m really behind in my schedule — and I work up a sweat. I hate and resent the first 10 minues of every ride. It is boring. It is monotonous. It is sheer drudgery. But it is necessary. If I don’t exercise, move lymph through my veins (the milky white substance that moves toxins out of our systems doesn’t move on its own — it requires circulation to clear out the junk we put in), and oxygenate my brain.

After the first 10 minutes, my brain has started to wake up and is complaining less about the ride. About that time, I start to think of things I’m going to do for the day, and I start to make notes. I scribble on my clipboard, trying to control my handwriting well enough to read my notes later, and I make an effort to be careful and legible. On and off, I pick up my pace and push myself, working up a sweat and an oxygen debt that gets my lungs pumping. When I’m warmed up and getting into a groove, my mind wakes up even more, and I let it wander a bit — kind of like letting a squirrelly puppy off its lead when you take it for a walk in the park. I let my thoughts ramble, let my mind race here and there, and then like walking a puppy, I eventually call it back, focus once more on my day, and make more notes about what I need to accomplish.

When I’ve reached my 20-30 minute mark, I stop pedaling, get off the bike, and go check on my hot water. I turn up the heat, if it’s not already boiling, and stretch in the kitchen while the kettle starts to rumble. When the whistle goes, I make myself a cup of strong coffee, and while it’s cooling, I stretch some more. I drink a big glass of water as I stretch, feeling the muscles and tendons and fascia giving way to my insistence. I’m warmed up, after pedaling, so I can stretch more easily. I can move a lot better than when I got out of bed, and I’m actually starting to feel pretty good about doing this exercise thing, as soon as I get up.

Once I’ve stretched, I head back to the exercise room and lift my dumbbells. I work with 5 pound weights (for now), moving slowly and deliberately. I focus intently on my form — practicing my impulse control. I make sure my body is aligned properly and my motions are smooth and not stressing my joints and ligaments and tendons. There’s no point in exercising if I’m going to just injure myself. I do a full range of upper-body exercises, presses, curls, flys, extensions, pull-ups… all the different ways I can move my arms with my 5-lb dumbbells, I work into the third part of my routine. I take my time — deliberately, for discipline and focus and impulse control are big problems for me that really get in my way — and I work up a sweat as I hold certain positions and move far more slowly than I prefer.

When all is said and done, my legs are a little wobbly and my upper body is warm with exertion. I am sweating and a little out of breath, and my body is starting to work overtime to catch up with itself again.

By the time I’m done, my coffee has cooled enough to drink it, and I can make myself a bowl of cereal and cut up an apple to eat.  I sit down with my clipboard again, make more notes, review what I need to accomplish, and I get on with my day.

The days when I skimp on the effort and take it easy, are the days when I am in the most pain at the end of the day. The days when I really push myself with my weights, moving sloooooowly through the motions and keeping myself to a strict form, are the days when I have the most energy and am feeling the most fluid. The days when I don’t stretch very much, are the days I have trouble falling asleep at night. And the days when I do stretch are the ones when I am able to just crash into bed and am down like a log all night.

Two days, this past week, I did not do my workout full justice, and I paid dearly for it, the rest of both days. I learned my lesson. I haul myself out of bed, now, and I hold myself to a disciplined workout. Anything less gets me in trouble.

I’ve got enough trouble, without the pain on top of it. And if there is any way I can cut back on whatever complications I can, I’ll do what I can to do just that.

It’s hard to start, it can be tedious to do, and it often feels like an interruption to my morning, but without it, my day is toast. And I am lost at sea… floating in a brine of burning, searing agony that surely must have informed the medieval concept of eternal hellfire and brimstone.

And yet, something so simple can push back the waves, like Moses parted the Red Sea. Something so simple, so basic, so good for me. Salvation comes in strange packages, sometimes. But it’s salvation nonetheless, so I’ll take it.

After all, I’ve got much better things to do with my life than suffer needlessly.

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Ouch

Physically, I’m in a lot of pain, these days. Ouch! Someone touched my arm the other day, and it was like they were driving a hot poker into my skin. Crazy. I hate when it happens, and the stupid thing about it is that my reaction time is slow, so I end up having a thorough pain experience, before I can pull away. How annoying.

The pain has gotten a lot worse in the last couple of weeks. I’ve been working outdoors which is great, BUT I’ve also been eating sugar and “cheap” carbs, which is such a bad idea. I really can’t make a move without some kind of pain, but I manage to keep my mind off it, so it’s not wrecking my life. Still, it might be nice to not have this stuff with me 24/7.

And then there’s that pineal cyst I’ve got. It’s a small one, but who knows what will happen with it? I think that one of the reasons that I’m just motoring along with this pain, is that I’m trying to acclimate to the constant presence of pain. Pineal cysts are notorious headache-producers, and there’s no know “fix” for it other than surgery… which I don’t want. I’d rather just live with the side-effects, I guess.

It’s not like I’m going looking for pain, but it seems to have no trouble finding me. I have headaches that do not respond to medication. Or relaxation. Or stress management techniques. I have blazing joint pain that’ s unpredictable and variable. My hands and neck and back and shoulders and knees and… well.. all of me, hurts.

Oh well. I don’t have much hope that it’s going to change anytime soon. I used to think it would, but that was 20 years ago, and I’ve sort of given up on that idea.  So I’m getting in the habit of just being functional while in pain. And coming up with other ways of addressing pain, like learning.

That helps. It keeps me interested. It keeps me alive.

So there.

What keeps me going

coffee and notepad and pen on a table

11/10/18 – Ha! I just discovered this old post from 2009. I’m not sure why I unpublished it, but I like it.  So, I’ll republish it. Here you go.

Ever since I read about how the ‘Thirst For Knowledge’ may be a kind of opioid craving, my thinking about how my mind manages my physical pain has really changed. Actually, it jumped ahead in a big way, when I read about Mary Meagher’s work on how fear and anxiety have different affects on physical pain. But having the kind of associational brain I do… a brain which isn’t very good at sticking with linear, sequential tasks, but eagerly hops around from one related topic to another… I did end up here, thinking about how the human brain craves novelty, and why that might be.

I’ve come to realize, in the past months, that many of my patterns of risk-taking and danger-seeking behavior, not to mention my constant stream of distractions that keep me all jazzed up, have a lot to do with relieving my constant levels of discomfort, distress, and pain. Not only that, but they seem to be linked to a sort of depressed state in my thinking — not necessarily emotionally depressed, but functionally slowed. My history of TBIs has not helped my cognitive processing speed, and there are parts of my brain (as evidenced on my EEG) that physically work more slowly than would be expected.

Actually, come to think of it, emotional depression sometimes follows on my cognitive depression/slowing, so I can’t discount that part of my experience.

Now, when it comes to getting on with my everyday life, risky decision-making and flawed judgment are just part of my problem. Chasing conceptual chimeras — such as my all-consuming obsession with my MRI, as well as new and emerging neuroscience research, which I may never fully understand but which fascinate me to no end — and commencing projects that I will never actually finish — like that 500-page documentation set for one of my favorite software programs of the day — are actually more disruptive and pose more of a risk to my adequate functioning than outright risk-taking behavior.

And yet, I chase after these new ideas and take up new projects, left and right, neglecting the real parts of my life that suffer from my lack of attention. I’m so busy researching and reading and exploring my MRI in 3D, that I forget to pay bills. Or do paperwork. Or make calls I need to be making.

I don’t think I fully understood the impact that my intense need for mental stimulation had on my life, until a little over a year ago, when I came across one of my old notebooks that had plans and details and milestones for all these projects I had once been utterly consumed by. There were no less than seven different highly involved, complex projects that filled different parts of that three-ring notebook. And then I found more in another notebook. I uncovered a whole bunch of different projects that I’d started… then got distracted from and completely forgot about.

Discovering those notebooks opened my eyes in several ways.

First, I realized that I had so completely forgotten about those projects, that they might as well have never existed. And that happened, after I had invested literally hundreds of hours scoping and planning in great detail for each of them. It seemed impossible that I would forget even one of these projects. But I had lost track of more than ten.

Second, I realized just how irrationally compulsive I was about my projects, and it occurred to me that someting might be very wrong in my thought processes. The majority of people I know don’t do this sort of thing… why was I?

Third, I realized that even if I had all the time in the world, I never could have finished all of these Very Important Undertakings. But that didn’t matter to me. What mattered to me, was the doing. The “journey”. The process of pursuing these things. It went against every fiber in my pragmatic being and seemed like a total waste of time. Yet, part of me didn’t care. It would create with abandon and not give a crap about what might actually come of it all. And that troubled me. Because it didn’t seem like me.

Or maybe it did. All my life, I’ve been fascinated by fringe interests and I’ve pursued them with gusto.  When I was a kid, I had a lot of projects going on all the time, and my parents and teachers used to just writhe with frustration at how I could never take any of my projects to a higher level, where they would develop fully and be shareable with others. I would read all about certain subjects and discourse on them at great length, but I could never seem to develop my interests in other directions. I had a “chemistry set” in the basement, where I did extensive studies on the interactions of vinegar and baking soda, and I mixed leftovers from my father’s aftershave with my mother’s talcum powder. But my interests never went much farther than that, for all I learned about fizzy cooking ingredients and the crackle patterns of dried personal care products.

In my adulthood, the intensity of my interests increased substantially, as has their esoteric “quotient”. Over the past 20 years, I have frequently found myself deeply engulfed in studies that interested maybe 5 other people in the world, but my devotion ran to the very core of my being. I’ve also found myself utterly consumed with a topic that was probably well beyond my ability to understand — quantum physics, biophysics, medieval history, and more — all sorts of information-intensive subjects that require years of training (which I didn’t have) to understand completely. My interest has intensified and evolved over the years, but the shareability of my learnings actually decreased. I would read and take in and then recount what I had taken in, but my writing was dense and obfuscated by way too much detail.

Then I fell in 2004 and hit my head and found myself unable to focus and sustain the same level of attention to my old areas of study. My office is filled with books I’d bought, intending to read them in my line of study, but it could be that will never happen.

Still, I do crave my distractions. And between 2004 and 2008, the number and kinds of projects I was consumed by increased exponentially. I just careened from project to project, spending long hours scoping and planning and thinking and noodling. I got so swamped in the details, I couldn’t see my way clear to completion on any of them. But I didn’t care. I just wanted the high of that novelty. The newness, the freshness, the rush that came from a bright new idea.

While I was in the thick of my planning and dreaming and scheming, all was well. But when I stepped back and took a closer look at how much energy I was expending, and how it was getting me nowhere, it just didn’t sit right with me. And I’ve been trying to figure out what the underlying mechanism of that is, ever since.

I think I’m closer now to figuring it out, than I’ve been in quite some time. I can’t speak for anyone else, but what I’ve found makes sense in my own personal context. It’s neurological. It’s biochemical. It’s ingrained. And it’s essential for my mental health and general well-being. I need my distractions, my rushes, my “pump” in order to feel normal. In order to feel human. And the thing that delivers a better rush and pump than just about anything else, is novelty. A new idea. A fresh concept. It’s a tonic to me… and an essential one at that.

Dr. Irving Biederman has some really interesting things to say about this stuff. It’s my understanding that he specializes in things like the neurology of face recognition (which, it occurs to me, could be really useful to folks who study autism/Asperger’s Syndrome and are trying to understand why ASD folks have a hard time decoding facial expressions). This “info junkie” track he occasionally writes about seems like a lesser area of interest for him, from what I’ve read. But it’s much more practically useful to me, than shape and face recognition.

So, that’s what I dwell on, vis-a-vis his reasearch.

Here’s an article about the sensual lure of mental novelty, which I swiped in its entirety from the LA Times:
From the Los Angeles Times

The 411 to avoid boredom

As ‘infovores,’ information is the fuel that keeps our brains all fired up.

By Irving Biederman

July 19, 2008

Crackberry. Only a metaphor for our addiction-like urge to check e-mail? Or does the term shed light on a deep biological truth about our hunger for information?

Human-motivation studies traditionally stress well-established needs: food, water, sex, avoidance of pain. In a culture like ours, most of these needs can be satisfied easily. Just open the refrigerator door, or blow on that spoonful of hot soup. (Satisfying the need for sex may require a bit more doing.)

What’s been missing from this scientific research is humans’ nonstop need for more information.

We are “infovores.” The human eye makes three fixations a second on the world around it, and not at random. Our gaze is drawn to items we suspect have something new to tell us — posters, signs, windows, vistas, busy streets. Confined to a featureless physician’s examination room, we desperately seek a magazine, lest we be reduced to counting the holes in the ceiling tiles. Cornered at a party in a banal conversation, we seek to freshen our drink.

Without new information to assimilate, we experience a highly unpleasant state. Boredom. Conversely, at one time or another, each of us has felt the joy of information-absorption — the conversation that lasts late into the night, the awe at a magnificent vista.

Cognitive neuroscience — the science that seeks to explain how mind emerges from brain — is beginning to unravel how this all works. At USC, my students and I use brain scanning to specifically investigate the neuroscience behind the infovore phenomenon.

The explanation involves opioids, one of many neurotransmitters — which are molecules that the neurons in our brain release to activate or inhibit other neighboring neurons. The effect of opioids is pleasurable. In fact, the same neural receptors are involved in the high we get from opiate drugs, such as heroin or morphine.

In the past, these opioids were believed to exist primarily in the spinal cord and lower brain centers, where they reduced the sensation of pain. But more recently, a gradient of opioid receptors was discovered in a region of the cerebral cortex, humans’ enormous outer brain layer that is largely responsible for perception and cognition.

In the areas of the cortex that initially receive visual or auditory information, opioids are sparse. But in “association areas,” where the sensory information triggers memory and taps into previous knowledge, there is a high density of opioid receptors. So the more a new piece of information tickles that part of your brain where you interpret the scene or conversation, the bigger the opioid hit.

Staring at a blank wall will produce few, if any, mental associations, and thus standing in a corner is punishment. Looking at a random mass of objects will produce strong activation only in the initial stages, where there is little opioid activity to be had.

Gaze at something that leads to a novel interpretation, however, and that will spur higher levels of associative activity in opioid-dense areas. We are thus thrilled when new insights tap into what we have previously learned. We seek ways to feed our opioid desires; we are willing to endure the line at the movie theater in anticipation of the pleasure within. We pay more for a room with a view or a cup of coffee at a Parisian sidewalk cafe.

But if we get more opioids from making connections to our memories and knowledge, why do we then prefer the new? The first time our brains take in a new perception — a scene, a movie, a literary passage — there’s a high level of activity in which a few neurons are strongly activated but the vast majority are only moderately or weakly activated. The strongly activated neurons inhibit the weak — so there’s a net reduction of activity and less opioid pleasure when our brain is exposed to the same information again. (Don’t feel sorry for the inhibited neurons, the losers in this instance of neural Darwinism. They are now freed up to code other experiences.)

No wonder we can’t resist carrying a BlackBerry 24/7. Who knows what goodies it will deliver? A breaking news item. A piece of gossip. An e-mail from a long-ago girlfriend. Another wirelessly and instantaneously delivered opioid hit.

I hope you got a few opioid hits, too, in learning about your inner infovore.

As for me, I’m starting to feel separation anxiety. Where’s my BlackBerry?

Irving Biederman directs the Image Understanding Laboratory at USC, where he is a professor in the departments of psychology and computer science and the neuroscience program.

I did indeed get more than a few opioid hits while I was reading this. As Dr. Biederman says, in “association areas,” where the sensory information triggers memory and taps into previous knowledge, there is a high density of opioid receptors. So the more a new piece of information tickles that part of your brain where you interpret the scene or conversation, the bigger the opioid hit. And because I’ve devoted so much of my life to acquiring and taking in information… data… knowledge and what memories I am able to create and maintain are quite intact (my info absorption during memory creation is about around 60%, but my retention is close to 100%, so I have very detailed recollections of a little more than half of what I am exposed to), that my association areas are well-disposed to getting high off this information.

I suspect that’s what makes the internet so addictive for me — and others. It’s not about the movies and games and pictures. It’s about the novel information that I can read and take in and assimilate and use to feed my inner needs, which are more than just an information addiction.

And I suspect this is what makes my world of projects so fascinating and compelling for me. It’s not about commercializing or publicizing my work. It’s not about profiting from it or getting famous from it. It’s not about taking the projects public, or even actually finishing them. It’s just about doing them. Creating. Being. Doing. Having at it and seeing what happens. Learning. Driving. Getting energized. And cutting the pain I’m usually fighting, in the process.

It’s not about the projects. It’s not even about my progress. It’s about the pain. Getting rid of it. Doing away with it. Keeping my mind off it. Not being debilitated by it. It’s about relieving the distress that comes from the daily difficulties I have with the most basic shit on earth — getting out of bed, taking a shower and using soap and shampoo, making sure I don’t lose my balance and fall in the tub, getting dressed in clean clothes that I didn’t wear yesterday, making a breakfast that will get me through the morning, feeding the cat and gathering my work stuff, making sure I have my wallet and car keys and my daily minder, and getting in the car without bumping against it and getting my work clothes covered with salt and dust that’s leftover from the winter and I haven’t gotten around to cleaning off my car, just yet.

There is so much that others can take for granted, when it comes to everyday life. How hard can it be? Well, if you don’t know… trust me, you don’t want to know. All I can say is, when I look at my distractions, my intellectual compulsions, my wide array of Beloved Projects That Will Probably Go Nowhere, I see a pattern of analgesic activity that may not serve a higher purpose and come to much, in terms of published papers or fame and glory and prizes, but which is utterly essential to my daily functioning as a “regular” person. Without my all-consuming interests, my fascinations, my cognitive compulsions, my life would be a lot more painful, my mind would be a lot less clear, and I’d be a lot less useful — not only in advanced ways, but in the most fundamental ways one can imagine.

Now, where are those printouts I’d gotten on the long-term biochemical effects of post-traumatic stress? I’ve got work to do…

More evidence of analgesic stress in my life

A quick note before I head off for my day…

One of the big, unmentioned pieces of the past few weeks has been the pain I’ve been in. My body has been really aching a lot — and I did a bunch of yard work last weekend, which threw me out of whack. My shoulders are giving me trouble, and my knees were acting up, too, which kind of sets me off.

Back in the late 1980’s and early 1990’s, I had real problems with chronic, debilitating pain. It just seemed to come out of nowhere. I didn’t connect it with the car accident I’d had in late 1987, but now it seems like the two were more than co-incidental.

I was never able to get help for that condition, and I spent years trying (in vain) to find a treatment that worked. Ultimately, the only thing that has helped me has been getting plenty of rest, taking hot baths, and keeping my stress level down.

But when I’m flaring up, as I have been for the past few weeks, it starts to drive me. I start to get increasingly anxious about it and I don’t do well with managing myself and my situations. I feel absolutely driven – propelled – through life, with sudden flashes of interest in things that don’t normally catch my attention. I feel compelled to pack each day full of as much interesting stuff as I can find. And I push myself beyond my means.

When I push myself hard, I feel better. I really do. Physically, I feel better… mentally, I feel clearer… and my self-esteem isn’t in the crapper. I feel like I can function, for once. The pain is gone. The anxiety subsides. I have an outlet for all my energy, and the stress I put myself under has a strongly analgesic effect on me.

I’m writing about this in greater detail in A Perilous Relief, and the past few weeks have been a great illustration of my underlying premise — namely, that risk-taking and danger-seeking behavior isn’t just a psychological compulsion. There are actually physical reasons for why people test their limits in extreme and sometimes dangerous ways, and those physical reasons are just as valid and vital as the psychological ones.

They’re also intimately connected — the psychological and physiological reasons for risk-taking/danger-seeking behavior. And in my own personal, daily experience, they feed each other… and soothe each other, too.

The stress I’ve been under has been taking a toll on me. But I’ve been compelled to push even harder. Why?

Because it cuts the pain.

Learning as pain/stress relief

I’ve been giving a lot of thought to the article I read the other day about how the ‘Thirst For Knowledge’ may be a kind of opioid craving… thinking about how that has held true in my own life.

I have to say, it really rings true for me. And I while I was having dinner with a friend the other night, they were telling me how they’ve always loved to learn. They’ve just eaten up new information and they’ve always gotten a charge out of taking in new information and putting it to good use in their life.

Interestingly, they also have a lot of problems with chronic pain — low back pain, especially. The pain pretty much derailed their life for many years, keeping them from getting decent sleep, and probably taking a few years off their life. They are in their 50’s, but they look like they’re 10 years older. It could be that their biological age — due to their chronic pain problems — is just that.

I never would have guessed that they’ve got this pain thing, which they only started really talking about with me recently. They’re one of those people who seeks out all sorts of new and novel information, and they seem to have a genuine thirst for living large, when it comes to heady stuff. Sure, they have other issues, and when they get pissy, they’re no walk in the park, but the way I’ve always seen them, is more as a hungry mind than an aching body.

It’s funny — I rarely discuss my own pain with other people, too. I don’t really get into it — there doesn’t seem to be much point. It’s just depressing, to go into the details about how my shoulders and elbows and hips and knees and back are all on fire, screaming with pain, keeping me up at night, waking me up early… and there’s precious little I can do about it. Even ibuprofin (which is the only anti-inflammatory, including prescription NSAIDs that I’ve used in the past) doesn’t always help. So, I just have to tough it out.

In fact, I rarely devote much time to thinking about my pain when it’s around. It’s just always there. In the background. Nudging me, every now and then, when I step out of line. Twinging or stabbing or whatever. Headaches. Neck aches. Back aches. Joint aches. It never entirely goes away, and I try not to dwell on it, when it comes up. Very little seems to fix it, other than scaling back on my activities and trying to get more rest and steering clear of foods that I know don’t sit well with me.

Now, when I do think about it, it just makes matters worse. I start to notice it. I start to get bothered by it. I start to get crazed and anxious and frustrated and beside myself. It’s a little like being stalked — it’s always there, lurking in the background. Not directly assaulting me so violently that I cannot function, but always reminding me that it just might step up at any time and do just that. And that drives me nuts. Feeling like I cannot escape this shadow, this constant reminder, this ever-present phenomenon that refuses to respond to medication or management techniques or even diagnosis… As Charlie Brown would say, Aaaaaaaauuuuuggggghhhhh!

One of the reasons I realize I haven’t been doing my self-assessments lately is because there are a bunch of places where I track my pain.  And when I do the entire sheet and include my pain(s) in the assessment — rating its severity and impact on my life from 1-10, describing it and its impact, detailing what I am doing about it, and recording whether that worked or not — well, I can see how poorly my coping mechanisms work. And I get depressed. Really down. Just despondent.

So, I don’t self-assess. Which tells me that I need to come up with a different self-assessment approach — probably break out the different areas into separate pieces, and only focus on one type of issue at a time — the cognitive OR the behavioral OR the emotional OR the physical — not lump them all together in one place, which gets overwhelming.

But when I don’t self-assess, I get into trouble with my thinking and my behavior and my attitude. So I need to do something about this. Soon. Today, in fact.

And so, I shall.

But back to my main topic, which is about learning as a pain/stress reliever… No matter how badly my pain is, no matter how much stress I’m under, I find that learning things provides an almost other-worldly relief for me. I’ve been going through some very heavy job stuff, lately — in this economy, talk about stress — and I’ve sorely needed a break from all the intensity. I don’t want to lose my house. I don’t want to be out of work. I don’t want my health to go spiraling downhill, because I’ve taken on more than my body and mind can handle, and it all gets to me and sends me over the edge. Times like this, my PTSD and TBIs rear their ugly heads, and my thinking gets foggy, my reactions get “dumb”, and my whole system starts to go haywire. Which is about the last thing I need, when my home and my family and my future are on the line.

I need some serious stress relief, but I’ve been having a lot of trouble with being outside in the open — lots of anxiety comes up, and I start to freak out with the bombardment of all the stimuli, especially sounds, as my hearing has been hypersensitive to a point that’s starting to drive me nuts. So, I have to find something to do inside that not only takes my mind off my physical discomfort, but also provides serious relief.

That relief comes from learning. Learning new things I need to know for my job. Learning new things from the world wide web. Learning new things from friends. Learning new things from books and white papers. Learning new things that may not be all that practical, but really interest me and keep me engaged. Focusing my attention on things that fascinate me and that enlarge my store of available knowledge does something amazing for me… it cuts the pain. It not only takes my attention off it, but it seems to physically ease my suffering.

And that’s huge.

So, I’m learning everything I can, these days, about things that interest me. And I’m also learning how to pass what I learn along to other people. I come from a family of teachers — professors, elementary school teachers, Sunday school teachers, tutors, instructors. I also worked my way through what college I could manage to complete by tutoring folks in subjects that interested me. And I did a good job. I would probably be a teacher now, if I could have finished college, but that wasn’t in the cards. But I can do it now, in my own way, without the limitations of administrative types who are looking over my shoulder, breathing down my neck, saying, “You can’t say that to those kids!”

Online, in this blog, I can share and teach and instruct. And I’m figuring out new ways of getting information across. It’s my hope that I can do a better job of communicating the stuff that’s in my head to folks who can use it. ‘Cuz I’ve spent an awful lot of time figuring out how to be highly functional and “normal” as normal can be, despite a history of head trauma, chronic debilitating pain, not to mention considerable sensory issues that — when they’re at their worst — turn me into an automaton of sorts.

The information and experience has been invaluable to me, in just living my life. And others might find it useful, too. If I can use what I’ve learned to ease others’ pain — through the process of learning, as well as the experience of using what I relate — then my own difficulties have all been worth it.

Nap a little now… Sleep a lot later

I finally was able to get a bunch of sleep over the past 12 hours. I got home from work yesterday, and I was utterly exhausted. I could barely stop at a gas station to top off the air in my car’s left rear tire (which has been low for some weeks, but didn’t fully catch my attention till I really took a close look at it yesterday). Once home, I took a long, hot shower to take the edge off the pain I’ve been in and help me relax, then I debated whether to stay up and spend time with my partner and hit the hay early, or just take a little nap to take the edge off my fatigue.

Not feeling particularly … “viable”… I opted for the nap. I would have been lousy company had I stayed up, anyway, and why do that to someone who’s also had a really long day? I crawled into my “cave” — the quiet guest bedroom that’s at the back of the house that is my own little retreat at home — and lay down around 6:30 last night. I planned to get up in an hour or so, when supper was ready, but when my partner came to rouse me, I couldn’t budge. I couldn’t even fully wake up. This was probably around 8:30 or so… My beloved decided to let me sleep, as I’ve been so edgy and antsy, and it was abundantly clear to them that I needed to rest.

‘Round about 10:30, I woke up a bit — had to use the bathroom — and I joined the rest of my household for a little warmed-up dinner. I generally try to eat supper before 8 p.m. (which I know is probably too late — should probably be before 7) but last night was different. I was a little concerned that I might not be able to get back to sleep, if I stayed up and had “dinner” and watched a little television, but I gave it a whirl.

And wonder of wonders, I was actually tired — yawning — the rest of the evening. I headed back to bed in my cave around midnight (I have a long day ahead of me today, and I need uninterrupted sleep all by my lonesome in my cave when I’m having trouble with insomnia). I did write a little in my journal about some PTSD stuff that’s been coming up for me, lately, but when I lay down and relaxed, I went right to sleep, which is nothing short of a miracle.

I did wake up earlier than I wanted to, this a.m. — I had hoped to sleep till 7:30, but I was up before 6:00, as usual. Oh, well. At least it was closer to 6:00 a.m. than 5 a.m. Maybe my body is preparing for Daylight Savings Time, which begins this weekend. And this way, I have time to post some info before my day starts. Not a bad thing. At least I got another 5-1/2 hours of sleep between my nap last night and right now.

One thing I noticed when I woke up this morning, was that I was extremely tense. My body felt like it was spring-loaded and ready to spring into action. This is not new for me. I usually feel this way when I’m waking up, and try as I might, I cannot seem to release the tension, first thing in the a.m. I think that’s what’s been waking me up — being really tense and tight, first thing in the morning. It’s almost like my body is gearing up for the day, in advance. Like it knows I’m going to be waking up soon, and it’s getting all charged up in advance.

I have a hard time, sometimes, getting out of bed. Literally and figuratively. Not only do I have to muster the courage to get out of a warm bed into the cold air, but I tend to not be very coordinated, first thing in the a.m. Especially when my vestibular system/balance is off, I can be very wobbly and sick-on-my-stomach, when I get out of bed. I am sometimes not very coordinated about it — I hit the floor a lot harder than I intend, and I wake up my partner, which is a PITA for both of us. So, I tend to tense up and gather myself physically — and mentally — before rolling out of bed.

You wouldn’t think getting out of bed would be such a challenge, but some days it’s just the first of a long series of difficult things I’ll have to do.

Another thing that I noticed this a.m., when I was waking up very tense, was that when I relaxed, my body started to ache and throb. My joints have been giving me a lot of trouble, lately, as has my lower back. It’s not really muscular — it’s along the areas where my muscles connect with my bone, like along the top of my pelvis in my lower back — the iliac crest, I think it’s called. My shoulders and neck and hips and back just ache and throb and burn. And it gets worse when I relax.

About 20 years ago, after a car accident that didn’t seem like that big of a deal (but sent me spiraling downward — I couldn’t understand what people were saying to me when they talked, and I couldn’t keep my job and I started drinking pretty heavily). I started having terrible, awful problems with debilitating pain. It started in early 1988 and persisted for about five years — eventually the pain got to the point where I couldn’t hold down a permanent job, and I literally couldn’t get out of bed in the morning. At the time, fibromyalgia (as well as chronic fatigue syndrome) was not widely recognized or well-understood, so even though I had a lot of the symptoms of it, then, I was never diagnosed. Comparing notes with others with FMS (or “fibro”), I see an awful lot of similarities, so I’m “lumping” my experience under the FMS banner, sans official diagnosis. I’m not sure I’ll be able to work up the nerve to see a doctor about these symptoms — my ordeal 20 years ago was pretty gruelling and debilitating in and of itself, and nothing the doctors told me or subscribed for me really helped. Ultimately, I made some lifestyle changes — stopped smoking, started taking better care of myself, quit pushing myself so hard all the time, changed my shoes from hard-soled boots to soft-soled loafers, and I started eating right — and the pain dissipated considerably. I’ve been in pain, off and on, over the years, and I tend to use it as a barometer for how well I’m taking care of myself. I must not be doing a very good job of that, lately, ‘cuz I’m in terrible pain, these days.

Then again, it could be the weather, too. All I know is, I’m in a lot of pain, these days, and it’s keeping me from sleeping. And relaxing. I think in some ways, the relaxing problems bother me even more than the sleeping ones.

How much does that suck… I mean, it’s bad enough that I haven’t slept, and that my days have been crazy-busy, and I’m having trouble with figuring out how to deal with my work. But when even the simple pleasure of relaxing is off-limits to me, and it actually increases my pain and discomfort, well, then I start to feel like the Universe is really out to get me.

I hate to be a whiner, so I’ll stop right now. But let the record show that I’m not really happy about not being able to relax without pain. I’ll have to work on that. Use my acupressure points, drink more water, exercise more… maybe work some exercise into my morning routine to release some of the tension before my day starts. And quit eating so much sugar!

Well, the day is waiting. I would prefer to not be in pain and to be able to get through the day without exhaustion and tension, but you can’t have everything. At least I’m able to get through the day on my own steam, and I have plenty of activities to distract me from my discomfort.

Life, on the whole, is not bad at all. Onward…