They say it’s the brain, but it’s also the body

It's ALL connected
It’s ALL connected

TBI can seriously mess you up in the head. That’s a given.

But it can also seriously mess with your physiology.

In fact, out of all the problems I’ve had over the years, the physical issues I’ve had have far outweighed the cognitive ones – if anything, they contributed to my cognitive and behavioral issues.

  • Fatigue – bone-crushing, spirit-sapping exhaustion;
  • Problems keeping my balance, which messed with my moods.
  • Heart rate increase – or decrease, as well as blood pressure changes.
  • Light and noise sensitivity.
  • Headaches
  • Body aches
  • Sensitivity to touch, which really messed with my head, as well. Imagine never being able to have human contact… it’s not much fun.
  • Constant adrenaline rush that wired me out, something fierce.

When your brain gets injured, it can affect your whole body. Because as we know, the brain is mission control for the rest of the works below the neck.

 

Advertisements

I lowered my heart rate from 90 to 73 in a minute

Last weekend, when I was recovering from a migraine, I checked my blood pressure and pulse:

100/59 with a heart rate of 90
Before… 100/59 with a heart rate of 90

My heart rate was up, for some reason (this was just after noontime), and my pulse seemed a little off. 100/59 might seem awesome, but it seemed a little low to me.

So, I did my breathing and checked again:

95/66 with a heart rate of 73
After – 95/66 with a heart rate of 73

I was able to bring my heart rate down to 73, which felt better, and I raised my “bottom number” on my BP to 66, which actually felt better.  I don’t want my blood pressure to get too low, and I can bring it up with my breathing.

So, I did.

I made the mistake of not checking my bp and pulse while the migraine was setting in. I’ll need to remember that later, so hopefully I can head it off at the pass… before the stabbing pain sets in.  Who knows? Maybe I can head off the other symptoms at the pass: light sensitivity, noise sensitivity, sensory issues, balance, dizziness, etc.

In any case, this is probably a good thing to do on a daily basis, no matter how I’m feeling. It might save me a lot of hassle – and it’s definitely easier and cheaper than dealing with medication.

Migraines have been under control

trepanning - migraine relief?
Fortunately, I have a better solution than this!

Summary: Controlled breathing seems to be helping me control my headaches, especially my migraines. After years and years of having constant headaches, I believe I’ve found a way to control them. This is good news, because constant headaches are no fun, and they kept me from really living my life.

I’m happy to report: My migraines have been under control – The headache part, anyway. Last week, I had a weird couple of days, where I was definitely altered… very strange feelings, colors brighter and higher contrast, everything feeling like it was moving in slow motion… I didn’t take any meds, because I didn’t have a headache, and I wasn’t actually sure if it was a migraine, or if it was just one of those things that comes up.

I will occasionally have bouts of dizziness (well, not occasionally… more often than that). And I will have my bouts of clumsiness and feeling spacey. Especially when I’m under pressure, feeling emotional, or I haven’t slept, it can be a problem, and with the last days of my current job winding down, all three of those boxes get checked off.

So, I just let it ride. And Saturday evening (after my nap, ironically), the headache set in.

But to be honest, it wasn’t nearly as bad as it has been in the past. Certainly not as bad as when I was cutting back on my coffee and went through that miserable withdrawal that lasted for days. And I actually have been feeling pretty good, without the constant headache. I think I must be doing something right.

The thing that seems to have moved the needle, is that I’m actively working with controlling my heart rate and blood pressure with controlled breathing. I can bring my heart rate down from 93 to 73 in a minute, using my technique. And I practice this on a regular basis, sometimes because I need to, sometimes out of curiosity.

It seems to be helping my migraines.

Now, the thing to be careful of, is thinking that one thing leads to another, when there could be other issues happening, too. I have also drastically cut back on caffeine, which supposedly helps headaches. That’s ironic, because I always heard that caffeine will help a headache, and to be honest, the times when I have been really struggling with the pain, having some dark chocolate or a bit of strong coffee really seems to help. If nothing else, they make me feel human again. I’ve also been exercising more regularly — at the very least, riding the exercise bike for 15-20 minutes each morning, and usually lifting light weights to boot. That could certainly be helping.

The thing is, I couldn’t exercise regularly for a number of years, because the headaches were keeping me from it. Nowadays, I still do get little headaches when I exercise, now and then, but when I do my controlled breathing and relaxation, they go away. Pretty amazing, really.

This is how it goes for me, these days:

Exercise: I get on the exercise bike and ride. I set the resistance to about medium, because I don’t want to overdo it. I’ll bump up the resistance and push myself, now and then, but when I do, I will sometimes get a little headache… which in my experience can turn into a big one — and big problems for the day. I back off on the resistance and check my pulse on the handlebars (there’s a pulse monitor there). If it is really high, I will control my breathing and bring it down. And the headache goes away.

Emotional Upset: My spouse and I have always had a “fiery” relationship. Our discussions sound like all-out fights to people who don’t know us. Our actual disagreements literally make other people run away. It wasn’t a problem for me, when I was 15 years younger (we’ve been together nearly 25 years), but in the past years, I’ve been getting more upset by these kinds of exchanges, and I’ve noticed a connection between the upset I feel and screaming headaches that come on — especially migraines. Sometimes I get so upset, I get an 8-out-of-10 headache (complete with light sensitivity, noise sensitivity, sensory issues, balance problems, dizziness, and nausea) that lasts for days. So, I need to find a way to deal with it. Now, when I get upset and I feel something coming on, I immediately “disengage” and focus on controlling my breathing. Sometimes I will go to a dark room and block out all sensory input. I can usually feel my blood pressure and heart rate going way up… but after a little while (maybe 15-20 minutes) of slowing everything down, I can “rejoin the living” and have a logical conclusion to what was probably a silly argument, to begin with. And no headache to speak of.

It’s pretty cool.

And it’s a relief.

Because now I feel like I can live my life without being in constant fear of headaches and migraine symptoms, etc.

Of course, there’s the other host of symptoms that come with migraine. Like feeling like my left side is carved out of a block of wood. But that’s also diagnostic. It tells me I need to take better care of myself, rest, get something decent to eat, and take the pressure off.

Bottom line is, I figured out a way to manage my migraines, and I’m pretty happy about it.

Getting off coffee — After the migraine subsides

So, this is interesting. I did something to my system over the weekend, and I came down with a horrific migraine yesterday afternoon. It was the worst one I’ve had in quite some time. I’ve had some of those where you go blind in one eye and the world is spinning and you feel like you’re going to throw up, but I don’t remember the headache and weird feeling and light sensitivity ever being as bad as they were yesterday.

Holy crap.

I really didn’t expect it at all. My weekend was going really well. I was cutting back on the coffee and eating a more substantial breakfast of oatmeal and fruit, along with more fruits and vegetables throughout the day, getting more exercise (I rode the bike a long while on Saturday and Sunday and went for multiple hikes in the woods, up to the top of a nearby hill in our local conservation area), and drinking more water. I felt fantastic, with a lot of energy. I also got some roasted dandelion root tea, to try out as a substitute for coffee. I drank some on Saturday afternoon. It was nothing to write home about, and certainly not a reliable substitute for coffee. But it was worth a try. It was in the coffee aisle at the grocery store, after all.

But I woke up to a screaming migraine after my nap on Sunday afternoon. Couldn’t stand the light, head throbbing, sick to my stomach, feeling dull and drugged. Usually my headaches are just there, but this one was intrusive. Holy crap, whenever I moved, it just thrashed me. Up around an 8.5 – 9 on a scale of 1 – 10. I had a bunch of things I wanted to do on Sunday afternoon, but all I could do was sit in a dark room with my sunglasses on, soaking my feet in a hot mustard bath.

I had half a cup of coffee, ate a banana and a piece of chocolate, took a couple of Advil, and drank water (how’s that for performance enhancement?) and I started to feel better. Not as sensitive to light and not as sick. Still not great, but better than I had been. You do what you have to do.

I suspect this was partly about cutting back on coffee… increasing my exercise… changing my diet… and drinking that tea. All that change was abrupt, even if it was in a positive direction. I have a tendency to overdo things out of enthusiasm, and I think this was one of those times. I’m nervous about the MRI, and my anxiety is really rising. So, to calm myself down, I do things that give me the sense that I have some control over my life — changing my diet, exercising, trying new foods, cutting out coffee.

I’ve done some reading over the weekend about migraines, and they can be triggered by a bunch of things, including changes to diet and activity – check, and check. I know that exercise tends to start a headache with me, and I did start to get a bit of an ache while I was riding the bike — both days. But it’s usually just a headache, not the nausea, crazy feeling, and intense sensitivity to light that had me walking around the house with all the curtains drawn and wearing my sunglasses because even through the curtains, the light was too bright.

So, I did a number of things differently than usual, and I learned my lesson. I need to take things slowly — gradually — not dive in head-first, as I tend to do. Impulsiveness plus anxiety equals — surprise!

And not a good surprise, either. Right now, I’m fighting back more throbbing pain, keeping the blinds drawn, and reaching for the Advil. I don’t want to take the Imitrex, because I don’t know what it will do to me, and I have to be “on” this morning.

So, I need to take things easy and make change gradually. Not bombard my system like it’s a machine. As much as I like the idea of roasted dandelion root tea as an alternative for coffee, I don’t think it’s going to do it for me. I think it really contributed to the migraine. After the pain subsided to a relatively simple headache of “4” on a scale of “10”, I tried to drink it again yesterday evening. And the headache started up again. So, even if it’s not the sole contributor, it did not make things better for me. Dandelion is a natural diuretic, and it has other properties, too, that are used as home remedies.  I got some to get ready for my MRI on Wednesday, so I can flush out my system and not be poisoned (too much) by the contrast agent. But I just can’t do it.

Well, better I learn now, than later. That’s for sure. I’d rather get this lesson out of the way ahead of time, while I have the time to rest and recuperate. I have a busy day on Thursday, so I need to not get knocked out by the MRI on Wednesday. Most people don’t have problems with it, and they look at me like I have two heads when I tell them I get sick afterwards, but so what? I know what happens to me, and I need to get ready.

So, it’s plain water and healthy foods for me, thank you very much.

Onward.

Taking the pain in stride

I’ve talked about pain a lot, over the past years, but only recently have I actually developed a way to deal with it effectively. That way is a bit counter-intuitive, in my mind, but it’s actually helping.

This new approach? Take it in stride. Get my mind off it. Don’t dwell on it. Accept that it’s there, and it’s probably not going away anytime soon. And focus on other things that are so compelling and interesting to me, that the pain literally ceases to exist in my mind.

Now, this has some obvious drawbacks. First, it doesn’t really get me in the mindset to change things. If I’m in pain and I’m suffering, wouldn’t I want to do something to alleviate that, to make it worse? If there is any way on earth that I can keep the pain at bay and live my life without it intruding on my happiness and well-being, isn’t that something I should be doing?

Well, yes and no. I’ve been trying working like crazy to get the pain to stop — just stop — with all sorts of approaches. Exercise. Stretching. Acupressure. Massage. Chiropractic. Drugs. Mindfulness meditation. Focused breathing. Diet changes. You name it, I’ve probably done it (except for acupuncture, which I still want to try). And the results have been pretty limited. Thinking back on my childhood, I can remember very few times when I was not in pain. I was a pretty rough-and-tumble kid, and I was also very inflexible to begin with. So, I was usually banged up or bruised or stretched or strained in one way or another. I was usually pushing my limits, and when you do that, you end up in pain.

So, I’ve lived close to 5 decades in almost constant pain. And I’ve made some pretty good progress over the course of that time. I’ve done some amazing things, and I’ve had some amazing accomplishments. All of this while being in pain.

So why, oh why, am I do intent on making the pain go away?

Sure, it doesn’t feel that great. Sure, it’s a distraction. But is it really stopping me from doing anything? Is it really keeping my mind from being alert and active? Is it keeping me from having dreams and pursuing them? It’s a drag and a pain, yes. But is it stopping me?

No, not really. In fact, when I am intently focused on what is in front of me, everything else just goes away. The pain, the fear, the distractions, the anxiety… all of it goes away. When I’m 100% engaged, and I’m feeling that flow, nothing else matters, nothing else gets in my way. I’m fully present, absorbed, transformed by that engagement. And there is no pain.

That’s my new approach — to have other things in my life that are so compelling, so engaging, so uplifting, that the pain ceases to be an issue.

Now, sure, there will be times when it’s so bad that I can’t sit or stand or lie down or do anything without shrieking heat raging through my body. But that’s to be expected. And it either goes away after I get enough sleep, or I find something else to consume my attention. I know full well that when I’m exhausted and I have pushed myself too hard for too long without a good recovery, the pain will set in. So it’s a good reminder to do that. And it’s a good barometer of how I’m doing in general. So, I don’t need to get rid of it. I need to factor it in, expect it, and just live my life anyway.

Yeah, just live my life anyway. I’ve wasted a ton of time trying to get it to stop – just stop – and it’s not going to happen, as far as I can tell. I live too fully. I push too hard. I test myself too regularly, for the pain to stop anytime soon.

Just gotta keep going and keep focused on what matters most to me. A 100% pain-free life is not one of those things. What matters most is a life-filled life.

 

Ouch – another idea for pain management

Gotta get on with it...

In a lot of pain this morning. Stiff and sore and not feeling like moving at all. But I’ve got to.

Woke up too early again. Lay in bed, writing in my journal, then was able to get back to sleep for another hour. I’ve got a lot of things I have to do today — fortunately, most of them before this evening. So, I can have my nap after I’m done with them, and get some more rest.

I’m noticing something interesting — even though I’m in pain when I am still and not moving, when I am moving around, I don’t feel the pain. So, am I actually in pain? I don’t know. If I stop and think about it, I am in pain. If I’m not thinking about it, I’m not.

So, if I just keep busy and don’t focus on the pain, that can help me get on with my life. Even if I’m still uncomfortable when I slow down.

Of course, I have to be careful that I don’t overdo it, and that I don’t hurt myself by trying to distract myself from the discomfort. I need to pay attention to what’s going on in my life, and what’s going on with my body, so I can manage it. I can’t afford to get so wrapped up in what I’m doing, that I do more harm to myself.

But the day is waiting. I’ve taken care of a few things already. Now it’s time to get on with the rest of it.

Addendum on October 23 — from http://brainblogger.com/2011/10/23/pain-is-no-matter-for-the-meditative-mind/:

Marcus Aurelius sums it up nicely,

If you are distressed by anything external, the pain is not due to the thing itself but to your own estimate of it; and this you have the power to revoke at any moment.

Bring the pain

It’s hard to describe it to people who don’t know it. It’s all but impossible to illustrate for skeptics. It’s not that pleasant to explain to loved ones. But that doesn’t change the fact that it’s there — the pain.

I have grown so accustomed to it that it’s all but imperceptible, if I don’t pay attention to it. The dull ache behind my eyes. The complaints of my hands, when I spread my fingers  “too wide” in a stretch.  The catch in my shoulder when I shrug. The stab in my back when I turn. The pull in my hip when I stand up. All my body, it seems some days, is like one of those old rubber bands that comes wrapped around broccoli. You remove the rubber band and leave it on the kitchen counter, wash and steam the broccoli and eat it, and you forget about the rubber band till months later, when you’re cleaning the kitchen (finally) and you find it wedged behind the blender. It’s stiff, brittle, crackly when you pull it. And if you pull it too hard, it snaps and nips at your fingers, all the little dusty bits of it falling into the cracks you just cleaned in the counter.

For a while, I tracked my headaches. Behind my eyes. Above my ears. In the back of my head. At the base of my skull. Traveling up the back of my skull and down to my eyes, like the  insignia on a San Diego Chargers helmet. Throb. Ache. “Lightning strikes” of sharp, shooting pain — I’m having one now.

But after three months, I realized it was an exercise in futility. My doctor didn’t want to see my log. Nobody wanted to see my log. It did me no good — just reminded me I had a headache. All the time. And there was no changing it. So, I quit.

And then I tracked my other aches and pains. The stiffness of my joints, the spasms in my lower back, the tight ache in my hands that kept at an almost imperceptible level… unless I spread my fingers or actually used my hands for something other than typing. Stiff knuckles. Achey tendons. Sore phalanges. Ouch.

I tried to “track” the pain, to see where it was coming from and where it was going to… until I realized that it came from everywhere and nowhere… and it wasn’t going anywhere. I could eat Advil by the handful (which I don’t do anymore, knowing what it can do to your pancreas). All it did was take the edge off. At midnight, when lying awake in shrieking pain, every nerve ending feeling like it’s been dipped in acid, that’s not a small thing. But it’s not a permanent thing. And my internal organs cannot withstand a ceaseless parade of Advil caplets through my digestive system.

I quit tracking that pain. It just made things worse. Again, nobody wanted to hear about or see my log. It didn’t seem to be real to them. As though I was lying to them. Trying to get attention. Malingering. Bullsh*t.

One piece of my pain I cannot dwell too much on, is the all-over pain my clothes cause me. I literally cannot think about it, because when I do, it’s too overwhelming. It’s not everywhere, exactly – mostly on my arms, from my wrists up to my shoulders, especially at my wrists and my upper arms… and the tops of my thighs. Oh, also, my upper back, across my shoulderblades. Depending on how tired I am, or how anxious I feel, the pain can range from a feeling of lots of pins being pressed into my skin, to the sensation of the top layer of my skin being peeled off.  Not good.

Most days, I cannot stand to have anything touching my wrists, and I spend my days with my sleeves pushed up around my elbows. I also cannot take the sensation of a watch on my wrist, or rings on my fingers. I know folks who favor heavy signet rings and other jewelry. I don’t know how they do it. I have a hard time just handling wearing clothes — in the summertime, I wear as few as possible. Not to attract attention or get a good even tan. But to be comfortable.

Some days — today is one of those days — I am extremely tired, and everything hurts. Everything. My clothes, any movement, or just sitting. Any kind of contact is unpleasant. Some days — today is one of those days — even the air on my skin hurts it. It feels like I have a first degree burn all over my body, which is healing    veeeerrrrryyyy    ssssssllllllooooowwwwwlllllyyyyyy.

It sucks. And I chafe and cringe and try to figure out what to do about it.

Tonight, what I’m going to do, is go to bed early. I’m taking a long, hot shower and jumping into bed.

Yes… a long hot shower…. and bed.

Sounds good.

Good night, everyone. Good night.

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.

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…

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.