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.

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…