The really stupid thing that got me back on this blog…

Last week, I was on a call with a life coach who was pitching their neuro-based approach to peak performance. They’re a trained neuropsychologist, and they had a handful of ways to “hack” the brain so you can basically flip the switch on your success. Super-charge it. Turn it on in ways that we usually instinctively turn it off.

Okay, great. I’m always up for ways to do that. I’ve been doing it, myself, for years, using neuropsychological principles.

But a couple things jumped out at me during that call, that seemed really really stupid. And I don’t mean “stupid” in a way that belittles people with cognitive difficulties. I mean it in the way that professionally trained people who should know better are leading people down a path that goes directly against what they should know, due to their professional training.

Before I go on, let me say that one of the things that discouraged me from keeping up this blog has been all the professional input about concussions, over the past several years, that has not helped. There’s a whole “concussion industry” that’s giving people really mixed messages – from people who have never sustained mTBIs or other sorts of brain injuries (that they’re admitting, anyway). And it’s made it all the harder to have a conversation about what mTBI is, how it affects you, and what you can actually do about it. I mean… I just don’t know where to start.

More on that later. Let’s get back to the professional stupidity.

Okay, so I was on this call, and the neuropsych was telling people that we can turn our lives around by breaking mental barriers. Find something that you’re afraid to do, and do it over and over and over again, using “exposure therapy”. Address your core beliefs about who you are and what you think you can do. Overcome those beliefs by not telling yourself over and over that you can’t do something. Use visualizations to “pre-wire” your system for success. And get comfortable with uncertainty.

All sorts of alarms went off with me on this, especially because the person talking admitted to having been very close with someone who had sustained a TBI years before they met them, and they had ignored the warning signs of suicidal thoughts… they’d even encouraged them to just take some anti-depressant meds — the very same meds which will set off someone with a history of TBI. Long story short, just after they told their friend to take some meds, that friend killed themself. Traumatic, to be sure.

And just as traumatic was the idea that someone who was trained as a neuropsychologist was telling someone to do something (take meds) that even I, from passing conversations with a neuropsych, know can be hugely problematic for a brain injury survivor.

Not only that, but this person was positioning themself as an expert in brain topics, immediately after revealing this massive “tell” about just how clueless they were/are.

Um. Okay.

And then they proceed to talk about how doing things like facing your fears, visualizing, and self-talk will get you on the right track and turn your life around.

Well, okay, so for a lot of people it will do that. But for someone with underlying physiological neurological issues (e.g., someone whose wiring has been rearranged by concussion/traumatic brain injury), those things will only go so far.

It would have been much more helpful, if they’d called out the fact that people with organic/physiological brain issues operate by different rules. And we have to live by those rules, day after day, if we’re going to be able to do things like visualize and self-talk our way to success.

Things like:

• Get enough sleep
• Drink enough water / stay hydrated
• Get regular exercise
• Find ways to calm down the over-active and easily amped-up system
• Keep your blood sugar steady by eating decent meals regularly (and stay away from junk food)
• Have a daily routine that reinforces your understanding of who you are and what you can reasonably expect of yourself, day after day.

If we TBI survivors don’t take care of the basics — food, water, sleep, routine — nothing else is worth much. At all.

And my heart aches for all the people (like me) out there who are being told, each and every day, that their failures are due to bad messages they’re giving themselves, or letting their fear run their lives. I think it was such a waste for the neuropsych’s friend to lose their life (in part) because of the terrible advice that they should have known better than to give. I also get so sick and tired of people lecturing me/us about how we just need to get our attitudes aligned with the right sort of mentality, and then our lives will dramatically change for the better. Never mind the underlying issues with fatigue and irritability and not knowing what the h*ll to expect from ourselves and our systems, from moment to moment, because our brain injury has turned us into someone we don’t recognize anymore. We’re being blamed for results that stem directly from our organic/physiological situation, without anyone even admitting that getting your wires crossed by a car accident, a fall, an assault, or a tackle gone wrong, can and does have an effect on your brain’s function.

Now, don’t get me wrong. I do believe that pretty much all of us spend way too much time being afraid and telling ourselves the wrong things about ourselves and our chances. We don’t do enough of the kinds of things that can and will make us successful.  And we generally don’t have the right mentality that sets us up for success.

But none of those performance-enhancement approaches are going to get much traction, if we don’t address the physical facts of our neurological situation. Failure is not all in our minds. It’s also in our brains. And until we learn to support / heal our brains and do the things we need to do — regularly, routinely, predictably — all the self-talk in the world isn’t going to be much help. At all.

Until we get ourselves on a good schedule – and stay there – eat the right foods (for us), drink enough water, exercise on a regular basis, and get decent amounts of sleep on a regular basis… Until we develop a new Sense Of Self that tells us who we are and what we can expect from ourselves… Until we redefine ourselves in ways that are solid and predictable… those mentality tactics are just going to be all in someone’s mind.

And the fact that a neuropsychologist was spouting all this stuff without prefacing their talk with a disclaimer… well, that just pisses me off. If they’d said something like, “What I’m about to share is intended for people without underlying neurological issues, some of which may have been sustained a long time ago, but are still having an impact in you life”, it would have set much better with me.

But they didn’t. So, there we are.

Oh, well. It’s a beautiful Sunday, and I have another 24 hours till I have to be ON for work again. So, I might as well enjoy myself. This isn’t the first time this sort of professional stupidity took the steering wheel. And it certainly won’t be the last.

Life goes on.

So, onward.

Doing it differently this holiday season

I did something quite unusual last night — I went Christmas shopping by myself at a much slower pace than usual. I didn’t manage to buy everything I set out to, but I got everything I could, and I got through the experience in one coherent piece — and I was able to get my nap after I got back.

Normally, this time of year is marked by team-shopping with my spouse. They contact everyone in the family and find out what people want… or we talk about what we think people want, and then they make up the list. We take the list, hop in the car, and head out to stores that look like good candidates, then we slog through the process of elimination, muddling our way through… with me getting so fried I either completely shut down and become non-communicative, or I melt down and fly off the handle over every little thing.

We usually spend several evenings like this, ’round about this time of year, and we’ve both come to dread it a little. My meltdowns had become more extreme over the past few years, and this year we were both really dreading the whole Christmas shopping business — to the point where we are going to be late(!) with presents for family members in other states. That’s never happened before. We were always good about it. But my meltdowns screwed everything up.

We both recognize that doing a lot of social things, this time of year (when work is actually getting more crazy, what with year-end and all), takes a huge toll on me. Even if it’s with friends (especially with friends), all the activity, all the interaction, all the excitement, really cuts into my available energy reserves. And then I get turned around and anxious… and I either regress to a cranky 9-year-old state, whining and bitching and slamming things around… or I melt down, start yelling, freak out over every little thing, and start picking at my spouse over things they say and do, to the point where neither of us can move without me losing it.

What a pain in the ass it is. Of all things, the uncontrollable weeping bothers me the most. The yelling bothers my spouse. It’s embarrassing for me and frightening for them, and neither of us has a very Merry Christmas, when all is said and done.

So, this year we did things differently.

We split up for the day and took care of our respective activities.

My spouse went to a holiday party that was thrown by a colleague of theirs who’s married to an attorney who deals with financial matters. I was invited, too, but we both realized that it would be pretty dumb for me to try to wade into the midst of 50+ actuaries and tax attorneys and their spouses who were invited to the shindig… and try to hold my own. Certainly, I can keep up with the best of them, but marinating in such a heady soup, especially with everyone hopped up on holiday cheer (eggnog, red wine, punch, etc.) and all animated and such, would have been a recipe for disaster.

So, I didn’t go. Instead, I took our shopping list and headed to the mall to stock up on what our families had requested. We had written down in advance all the names and the specific gifts we were going to get, and we had also written down where we were going to get them. That list was my lifeline. Especially in the rush and press of the mall, which sprawls out in all directions, with satellite stores on either end.

I’m happy to report that I actually did really well. I made a few tactical errors — like not parking in the first lot I came to and walking in. But that turned out okay, because if I had parked in the first lot, it would have been all but impossible to get down to the other end of the mall. I studied the list carefully ahead of time and used a highlighter to mark the stores where I’d be going. I also kept my focus trained on the task at hand — even if it was just sitting in traffic. I also walked a lot more this year than other years. I found one parking space and used it for two different stores. And I didn’t hassle with finding a space that was as close as I could get to the building. I took the first decent spot I could find, and then I walked to the store.

Imagine that — in past years, I was possessed with finding parking as close as possible, and I would move the car between stores, even if they were only 500 yards apart.  This year, I just walked the distance. Even though it was cold, for some reason the cold didn’t bother me, and it actually felt good to be out and moving.

I think that my 5 months  of daily exercise has paid off, in this respect. I think part of the reason I was always consumed with driving everywhere was that I just wasn’t physically hardy. I was kind of a wimpy weakling, in fact — though more in thought than in body, but a wimply weakling, all the same. But having a good physical foundation — even just from doing an hour (total) of cycling, stretching, and light lifting each morning — has made a significant difference in my willingness and ability to walk between stores.

It might not seem like much, but the walking (instead of driving) between stores part of the trip actually made a huge difference in my overall experience. Walking between stores — stopping at the car on the way to stash my presents — helped me break up the activity and clear my head. It got me out of that in-store madness, the crush and the rush, and it got me moving, so I felt less backed-up and agitated. And that let me start fresh at the next store.

That was good, because the first store was a friggin’ nightmare. It was one of those big-box electronics places, that supposedly has “everything” but really didn’t. It was exhausting, combing through the stacks of movies and music, only to find everything except what I needed. The lighting was awful — extremely bright and fluorescent and glaring. People kept bumping into me, or walking so close I thought they would run me down. But the worst thing was the acoustics. Everything surface was hard and echo-y and the place was overwhelmingly loud, and every single sound was at least partially distinguishable, which drove me nuts. I’ve noticed that acoustics have a lot more impact on me than light, when I’m out shopping. The store was one big cauldron of loud, indiscriminate noise, and my brain kept trying to follow every sound to see if it mattered. I couldn’t function there. Not with the place full of people — and very agitated, anxious, aggressive people, at that.

I eventually went with a gift card and got the hell out of there. I doubt I’ll ever go back when it’s that full. When the place is low-key and all but empty, I can handle it much better. But at this time of year? Not so much.

Walking back to my car chilled me out. Sweet relief.

At the second store — a bookstore — I started to feel pretty overwhelmed. They had long lines, and the place was packed — which is good for the retailer, but not so great for me. I spent the longest amount of time there, in part because I could feel I was getting overloaded, and I stopped a number of times to catch up with myself and remind myself what I was there to buy. My list was getting a little ragged, at that point, what with me writing notes in the margins and taking it out/putting it back in my pocket. So, eventually I just pulled it out and held onto it for dear life. I must have looked a little simple-minded, but I don’t care. Everyone else was so caught up in their own stuff, anyway. My main challenge there, was not getting trampled by Women On A Mission — many of them carrying large bags and shopping baskets that doubled as ramrods to get through the crowds.

One cool thing happened, though, when I was taking a break — I had a little exchange I had with two teenage boys who were talking about some book they’d heard about. I was just standing there, pretending to look at a shelf of books, just trying to get my bearings, when I hear this one young guy tell his buddy, “I heard about this book I should get — I think it’s called the ‘Kama Sutra’ and it’s, like, about sex, and it’s got these pictures… and it’s really old… like, from India or something.”

Well, I perked up at that, and suddenly very alert, I looked over at them and said, “Oh, yeah — the Kama Sutra, man… You should definitely check it out.”

They kind of looked at me like deer in headlights, and they got flushed and flustered and stammered something about not knowing how to find it. It was about sex, and they didn’t know how to ask someone to help them. I so felt their pain…

I confidently (and confidentially) pointed them to the book-finder computer kiosk, where they could type in the title and it would tell them where to find it in the store.

“Dude, you should totally look into it. It’s got lots of information — and pictures — and it’s been highly recommended… for hundreds of years.”

They got really excited and headed for the book-finder kiosk. Here’s hoping they — and their girlfriends — have a very Merry Christmas.

That little exchange got me back in the game, so I took another look at my list and managed to find the handful of books and music and calendars I wanted to get. I headed for the line and just chilled/zoned out. I didn’t get all tweaked about how long it was taking; I listened in on a conversation for a while, till I realized it was mostly about death and health problems people were having.

Oh – and another thing that helped me keep my act together, was the 4:15 p.m. alarm that I have set on my mobile phone. 4:15 is usually when I need to start wrapping up my day at work. I need to do a checkpoint on the work I’m doing, start to wind down, and begin keeping an eye on the clock, so I don’t get stuck in town past 6:00, which is what happens to me when I don’t watch my time after 3:30 or so. I have this alarm set to go off each day, and it went off while I was in the store, which was a blessing. I had completely lost track of time and I was starting to drift, the way I do, when I’m fatigued and overloaded and disoriented.

It startled me out of my fog, and I knew I still had a bunch of things on my list to get, so I refocused and started thinking about what I would get at the next store, so I could just march in and do my shopping without too much confusion and disorientation. After I paid for my books and music and calendar, I debated whether to have my presents wrapped for free, which might have saved me time in the long run. But I couldn’t bear the thought of having to interact with the folks who were doing the wrapping. They looked really friendly and gregarious — Danger Will Robinson! Warning! Warning! Even a friendly conversation was beyond me at that point.

I realized I just wasn’t up to that, and I must have looked like an idiot, standing there in the middle of the foyer, staring at the gift-wrappers for about 10 minutes, but who cares? Everyone was so caught up in their own stuff, they probably didn’t notice me. And if the gift-wrappers were uncomfortable with my staring, they didn’t show it… too much 😉

Anyway, after I managed to extricate myself from that store, I headed for my last destination. Again, I didn’t sweat the traffic getting out of the lot, and when I got to the final store, I parked at a distance from the front doors and walked in through the icy cold, which was good — it cleared my head.

Inside, I consulted my list again and headed directly for the section that had what I needed. Halfway there, I remembered that I’d meant to buy a very important present at the first store, but I’d totally blanked on it. I started to freak out and got caught up in trying to figure out how to get back to that first store and not lose my mind in the process.  Then, I slowed down and stopped catastrophizing, and in my calming mind, it occurred to me that — Oh, yeah — they probably carried that item at this store, so I went and checked, and sure enough, there it was – score! I didn’t have to back to big-box hell. At least, not that day.

I found some more of the presents on my list, and although I didn’t get everything I needed, I made a decent dent. My partner can come with me and help me sort out the other items either today or tomorrow. Or possibly when we get to our family — they usually have some last-minute shopping to do, and they can cart us around with them. And I won’t have to drive.

By the time I got home, I was bushed. My spouse wasn’t home yet, so I called them — they were on their way home and were stopping to pickup some supper. I said I was lying down for a nap, and they didn’t have to wake me when they got home. Then I took a hot shower to get the public germs off me, laid down, and listened to Belleruth Naparstek’s Stress Hardiness Optimization CD. I had a bit of trouble relaxing and getting down, but I did manage to get half an hour’s sleep in, before I woke up in time for dinner.

My partner had a pretty good time at the party, but they said it probably would have been a disaster for me — so many people, so much energy, so many strangers, and unfamiliar surroundings. I concurred, and I showed them what I’d bought that afternoon.

We’d both done well. We both missed each other terribly, but we did get through the afternoon without one of those terrible holiday incidents that has dogged us for many, many years. Like Thanksgiving, which went so well, this Christmas shopping trip actually felt normal. It didn’t have that old edginess that I always associate with holiday shopping. It didn’t have the constant adrenaline rush. In some respects, it feels strange and unfamiliar, but you know what? If strange and unfamiliar means level-headed and low-key and plain old sane, and it means I can keep my energy up and pace myself with proper planning… well, I can get used to that.

Yes, I’ve done things differently this year. And it’s good.

Connections between pain and PTSD

The past couple of weeks have been crazy for me, and it’s taken somewhat of a toll. I’ve been busy with work, busy with other activities, busy, busy, and more busy. I also did some traveling for about a week to out-of-state relatives, for a big family get-together. In and of itself, it was a great time. But the change in my schedule, the long hours of driving — over 30 hours, all told, in the car — not being able to get enough sleep, and the change in food choices (how do they eat that stuff?) all threw me off, big-time.

I managed to keep it together and not completely blow-out/melt down during the trip, or immediately afterwards, which often happens when I travel to this particular branch of the family tree. But the past few weeks have been packed full of crazy-busy-ness that I now realize has been a pretty concerted effort to dull the pain of the trip.

I’m not talking about emotional pain… though it’s never easy to spend time as an outsider, when everyone else is connecting and having a wonderful time being together — I’m the oddest bird in the family, and between my difficulties in keeping up with what’s going on around me and my narrow and intense interests that aren’t run-of-the-mill, people often don’t know what to do with me.

What I’m talking about is physical pain.

Yes, physical pain — the kind that burns, that aches, that throbs, that stings. The kind that makes my clothing hurt me, that rakes my legs when my pants rub against them… the kind that makes me jump whenever someone touches me… the kind that sends a shock wave of smacking ache to the marrow of my bones when my spouse puts their hand on my forearm… the kind that keeps me from sleeping, because I can’t stand the feel of sheets on me, but I also can’t stand the feel of air-conditioning blowing across my skin… the kind htat gets worse when I am stressed or tired or upset or all of the above… the kind that I often don’t even know is there until someone makes contact with me, and I jump, and they feel like they’ve done something to hurt me. They have. They didn’t mean to, and they would never do it on purpose. But they hurt me.

It’s not just the emotional pain of family visits that gest me. It’s the physical pain, as well.

Here’s the deal — for as long as I can remember, I have had issues with a whole slew of sensory problems, the most disruptive of which was body-wide pain. I can remember, ever since I was a little kid, feeling like I was being hit, when people would just reach out to touch me in very innocent, social, appropriate ways. I would shrink back from them, and they would often take offense or get angry with me for “rejecting” them. It sorta kinda messes with your head, when the people who love you the most cause you intense pain when they try to show their affection for you. And it tends to muck up your relationship with them, when you can’t accept their (appropriate) affection, but they don’t understand why.

To tell the truth, I didn’t even understand why. It’s hard to explain, unless you’ve been there, but the experience of painful touch is such a visceral, physical thing, it sometimes doesn’t translate into words. It’s just there. You can’t describe it, you can’t even really pinpoint it. Sometimes you have no idea it’s there, until someone makes contact with you. Then, all you know is, it hurts, and you pull away to avoid it, so you can just get on with your life.

And you do things to avoid/mitigate it. You steer clear of expressive people. You avoid demonstrative friends. You always keep more than arms’ length away from other people, just in case they reach out to you. You spend time with people who either don’t like you or couldn’t care less about you, because the chances of them touching you is small to none — and it’s easier to be around those types of people, than the friendly ones who like to make contact.

These things are done on a subconscious, instinctive level, and sometimes they don’t even register with you when you’re doing them. Like pulling away from people when they come close. Like shrinking back from a hug someone is trying to give you. Like jerking away quickly when someone touches you accidentally.

And depending on how sudden or shocking the pain is, it can trigger a whole cascade of other sensations/symptoms/reactions that look a whole lot like PTSD.

Over at Helpguide.org, I found this list of symptoms

Re-experiencing the traumatic event

• Intrusive, upsetting memories of the event — memories of past painful contact tend to show up suddenly
• Flashbacks (acting or feeling like the event is happening again) — yes, it does feel like it’s happening all over again
• Nightmares (either of the event or of other frightening things) — sometimes nightmares do follow an extremely painful episode, tho’ that’s rare
• Feelings of intense distress when reminded of the trauma — yes, it is intensely distressing to be reminded of it, it just sends me in a downward spiral
• Intense physical reactions to reminders of the event (e.g. pounding heart, rapid breathing, nausea, muscle tension, sweating) — my heart sometimes starts pounding, I tense up, and I feel sick to my stomach, when people touch me, sometimes

PTSD symptoms of avoidance and emotional numbing

• Avoiding activities, places, thoughts, or feelings that remind you of the trauma — I tend to avoid physical human contact of any kind; women frighten me, because they tend to be so tactile, and it’s literally too painful at times, to interact with them
• Inability to remember important aspects of the trauma — I tend to block out the particulars of painful experiences. All I know is, it’s hurt me before, like it’s doing now
• Loss of interest in activities and life in general — Why should I get involved, if it’s just going to hurt like the dickens?
• Feeling detached from others and emotionally numb — Oh, yes… ’nuff said.
• Sense of a limited future (you don’t expect to live a normal life span, get married, have a career) — how precisely am I supposed to live fully, if the experience of basic human interactions promises me pain?

PTSD symptoms of increased arousal

• Difficulty falling or staying asleep — could have something to do with my insomnia?
• Irritability or outbursts of anger — yet one more contributing factor
• Difficulty concentrating — it’s tough to concentrate, when you’re on high alert. Especially if you’re working with tactile people.
• Hypervigilance (on constant “red alert”) — someone might be approaching…
• Feeling jumpy and easily startled — but of course

Other common symptoms of post-traumatic stress disorder

• Anger and irritability — not being able to establish comfortable human contact makes me nuts and pisses me off
• Guilt, shame, or self-blame — why can’t I just be normal like everyone else and tolerate a hand on my shoulder?
• Substance abuse — been there. Thank heavens that’s behind me.
• Depression and hopelessness — my occasional visitors
• Suicidal thoughts and feelings — once upon a time, occasional visitors. Now, very rarely.
• Feeling alienated and alone — not just feeling… BEING alienated and alone
• Feelings of mistrust and betrayal — it’s hard to not feel that way, when everyone around you might possibly cause you pain
• Headaches, stomach problems, chest pain — the first two, yes. The third, not so much

So there we have it — PTSD arising from chronic body-wide pain. Painful touch. There’s even a word for it — Allodynia (meaning “other pain”) — a painful response to a usually non-painful (innocuous) stimulus. I haven’t been formally diagnosed. That would require that I talk about it to my doctor. And talking about it out loud to anyone has never really been an option for me, except for with my last therapist who is long gone by now. It’s just too painful. Emotionally and physically.

I’d rather keep my own counsel and just live my life. Pain-free. Alone, but pain-free.

Being alone not only keeps me out of arms’ reach (literally) from people who may hurt me, but it also keeps emotional upheaval at a minimum. It’s hard to get worked into a state, when you don’t have much contact with people who affect you emotionally. I can block out all the politics and social drama pretty well. But the emotional connections I have with people… well, they’re trickier. So, I steer clear of them, by and large. And I steer clear of emotionally charged subjects with people — like avoiding talking about my chronic pain issues with my doctor.

It’s wild, how emotional distress can heighten physical pain. Emotional pain sets off an alarm state with me, and that alarm state unleases a whole avalanche of stress hormones and hypersensitive biochemical agents into my system. And the buildup of all the stuff that gets “stuck” in my system does not help me. Not one bit.

Over at Healthjourneys.com, Belleruth Naparstek quotes from her book Invisible Heroes and describes it well:

Chronic Pain Conditions
This constant activation of the alarm state leads to an accumulation of metabolic waste products in the muscle fibers, and the release of kinins and other chemical pain generators in the tissue, resulting in myofascial pain and the appearance of those seemingly intractable chronic conditions such as fibromyalgia, chronic fatigue, irritable bowel syndrome, chronic headache, TMJ and more.

And because these conditions are generated in the brain stem and the motor reflex centers in the spinal column, and routed through a perturbed, automatic, arousal circuitry, peripheral forms of treatment provide only temporary relief.  Constantly activated by everyday sensory cues, normal muscle movement and spontaneous memories, symptoms grow and become more and more entrenched over time.  In other words, this is one nasty gift from the kindled feedback loop that, if not interrupted, will just keep on giving.

Our epidemiology research has already shown us an astounding percentage of people with baffling chronic pain conditions and “functional” diseases that have no obvious causes, who have been found to have prior histories of severe trauma.  Probably if we could tease out the subset of traumatized people who experienced substantial dissociation during their trauma, and a truncated freeze response in the midst of it, we might find closer to one hundred percent suffering from posttraumatic stress.  Unfortunately for them, they are often assumed to be malingering or engaged in attention-seeking behavior for neurotic reasons, instead of suffering from a very serious, self perpetuating condition with a potentially worsening trajectory.

Included in this group of maligned and misunderstood patients would be scores of people suffering from pelvic and low back pain, orofacial and myofascial pain, genito-urinary and abdominal pain; interstitial cystitis; and the previously mentioned headache, fibromyalgia (FM), chronic fatigue syndrome (CFS), and reflex sympathetic dystrophy (RSD); irritable bowel syndrome (IBS), inflammatory bowel disorder (IBD), multiple chemical sensitivity (MCS) and migraine.

And there it is — in part, anyway. The post over at Belleruth Naparstek’s blog asks Is There a Connection Between Fibromyalgia and Traumatic Stress? but it’s not just about Fibro, to me. It’s about the “and more” she mentions. It’s about the “whole lot more”.

So, what the hell can I do about this? I’m of the mind that the best reason to talk about anything difficult, is to figure out what to do about it to make it better. To reduce the quotient of human suffering in the world. That includes my suffering (I’m in the world, after all). What can I do about this pain business?

Well, first, I need to get back on my schedule. I need to get back to my sleeping routine, which I’ve been doing pretty well with. I need to get back to eating the right kinds of foods at the right times of day — and I’ve been doing that pretty well, too. I also need to exercise and do other things that will enable me to discharge some of the built-up stress from the trip. I tried explaining to my new therapist how disruptive that sort of travel is to me, but they didn’t seem to “get” the intensity of it, so I’m not getting much support there. Screw it. I’ll support myself. I’ve been having a lot of good long cries, in the privacy of my own company, over the past few days, and that seems to be helping me. I also need to get back to my regular work schedule and just get some stuff done. Being productive has a way of chilling me out nicely, so I’ll do that.

And drink plenty of water. Take some Advil before I go to sleep. Listen to the Healing Trauma CD from Belleruth Naparstek to deal with the PTSD. Have a good cry. And another. And another. And make sure I let loose in my own company, away from others who neither understand nor want to understand just how hard things are for me… and end up minimizing and negating and invalidating my feelings about what I really go through, and tell me I’m fine and I don’t have a problem and I shouldn’t worry about this stuff,  just because they either don’t have the emotional resources to hang with me, or they’d be too traumatized, themselves, if they knew what it’s really like to live in this body.

Most of all, I need to keep it simple. Count my blessings. Remember just much good there is, along with the bad. And remember, tomorrow is another day, and all things considered, I’m pretty lucky to be alive.

The gateway of despair

I’ve been in a really up-and-down place, lately. I’m dealing with the residue of various traumas, I’m dealing with the day-to-day crap from various head injuries, and I’m winding down one job to move on to another. In the midst of my cognitive and emotional floundering, I’m hanging in there and falling back on my old coping mechanisms of smiling stoicism and shutting down those parts of me that are prone to freak out over every little thing.

I would rather not use repression as a coping mechanism, but I really need to make this job transition, so I’m just clamping down on the heartache and emotional upheaval… until I’m settled into my new job.

It’s a bit of a gamble, really. I have to remind myself that in another few weeks, I’m going to need to decompress and do some serious “autotherapy” — using guided imagery, time alone to break down, and lots of long walks down country roads… and city streets as well.

I wish I were less nervous about this, but my pattern in the past, when I was moving on from one situation to another, has been to burn bridges behind me, so I had to move forward. Poor person’s motivation. As a result, I have a lot of bad blood in my past that I’m not proud of. I just don’t want to go there, this time. I don’t want to alienate the people I’m leaving behind, so I don’t feel so badly about leaving them.

Fact of the matter is, I do feel badly about it. I have to leave to take this new job. But I don’t want to leave the old one. It’s a wonderful problem to have, in this economy, but I’m still struggling with it on some level.

One of the things that’s helped me a great deal, over the past week has been reading about “Positive Disintegration” — or positive mal-adjustment and separation from “norms” that no longer work for you. The concept was developed by Polish psychiatrist Kazimierz Dabrowski, who (as I understand it) rejected the widespread practice of labelling “maladjustments” as forms of mental illness. His premise, as I understand it, is that as people develop and mature, they inevitably encounter things about the world that don’t sit right with them and that cause them considerable distress.

In fact, the more capable of maturing you are, the more distress you’re going to be in, because no culture is perfect, and there are a lot of things that could — and should — be done differently. When you positively dis-integrate (that is, you un-integrate from the norms of society based on your own evolving and advancing understanding of your own values and concept of right and wrong), you basically differentiate yourself from the status quo and break out to form your own identiy, with your own moral compass.

Unfortunately, standard-issue cultural norms can consider such separation and differentiation as a form of mental illness or psychosis, and plenty of psychology and counseling is geared towards “helping” people adjust to life and be “well-adjusted”. But that’s not always good. Because (for the sake of “peace of mind”) you could become well-adjusted to widespread cultural acceptance of genocidal atrocities… domestic violence…  the gutting of the Constitution… accepting (and promoting) inaccurate military intelligence that warns of WMD… and buying more house than you can afford.

All cultures are a work in progress, and according to Dabrowski (who passed away in 1980 and whose name is — I think — pronounced da-BROV-ski), it’s the mal-adjusted, individually guided, conscience-driven individuals who move the culture forward to a more advanced state.

He treated “dis-ease” and “disorders” as potentials for growth and change, encouraging his patients (and others) to examine their difficulties to see what potential for growth they revealed. If you think about it, this is a pretty revolutionary approach to mental health. And it’s inclusive in ways that excite and intrigue me… and which I’ve long agreed with, though I could never articulate it as well as he does/did.

Where I am now is really in a state of positive dis-integration. I’m un-integrating from the workplace I’ve been in, for nearly a year… de-coupling from people I’ve learned to really like and work with (tho’ with varying degrees of success)… dis-connecting from the “security” of  a permanent job offer that wouldn’t pay me enough to actually live on or give me the skills that will keep me fully employable over the coming years, in exchange for a really great-paying gig that’s a contract with no guarantees but will make me more employable than ever in my chosen field.

I’m dis-integrating in favor of something better, something bigger, something with great potential. And while it’s very exciting on some levels, it’s also terrifying on others. I’m fearful that my brain will fail me, that I’ll become over-tired, that I’ll lose my ability to cope, that I’ll end up where I was way back when, when I was in high-pressure situations and melted down. I’m very concerned about my resilience, if I’ll bring too much stress home from work, if I’ll be able to maintain my effectiveness and productivity. And in moments when I’m especially tired and lonely and afraid, I despair.

That despair, however, can be a good thing. Fortunately, I know myself well enough to realize that in the morning things will quite literally be better. After I get a full night’s sleep, I write a little bit, I read a little bit, and I get on with my life, I’ll not feel so desperate, so alone and afraid. I know myself well enough to realize that the despair is there because something is missing… and once I figure out what that something is, and take steps to address it,  I’ll be able to get on with my life.

Despair is also a good reminder to me that I’m not perfect — and I know it. Someone who had no clue about their impairments and had no clue about how much better off they could be, wouldn’t bother being this down. But I know about my deficits, and I have a very keen hunger for the ideal. So, of course I’m going to feel this way, now and then.

For me, the degree of my despair is the measure of distance between my perceived real and my imagined ideal. It tells me where I’m at and it reminds me that I can’t afford to get cocky. Fortunately, my personality is sufficiently fickle — and bores easily — so I don’t stay stuck for long in that desperate state. But when I’m there, as frightening as it can be, as dark as it can be, as agonizing as it can be, there are lessons to learn. And my life would be far less bright and light-filled, if I paid no attention to them.

When it comes to head injury, chronic illness, PTSD, or any other intractable physical or mental condition that won’t respond immediately to therapy, but takes seemingly forever to get better — if it does at all — despair can be a recurring theme. I can’t speak for anyone else, and not being a trained psychotherapist, I certainly shouldn’t dispense mental health advice (if you feel you’re in mortal danger, please seek qualified psychological help!). But in my case, when despair comes to visit — as it so often does — I find I can use it as a classroom of sorts. It has plenty of things to teach me, in the moments or hours or even days it spends with me. And I ignore/suppress it at my own peril.

Despair doesn’t have to be a bad thing — unless it’s a permanent state that requires medication or other intervention to avoid suicide. It can actually be a valuable part of maturation and personal growth.

After all, it’s easier to find a little glimmer of light, when you’re in a pitch-black room.

When in doubt… sleep

Last night I officially wore too thin.

It was not a good night. After what felt like an impossibly long day, I just fell apart and broke down around the time I should have been going to bed. I got into a fight with my partner and shouted and slammed doors and stormed off and wept bitterly for about an hour.

This morning I feel hungover and groggy and stupid for having let everything get to me.

Note to self: When it’s all getting to be too much, stop trying to think things through and just get some rest.

Looking back, I can see how everything just piled up on top of me. The session with my therapist, that left me feeling like an idiot. The challenge of keeping functional at a job I’m only going to be at for another week. The pressure of learning specific skills I need to have, when I start my new job(!) in a little over a week. The insecurity I feel at stepping up my career path at this dream job of mine, which is a continuation of what I had been doing back before I had my fall in 2004. I’m terribly concerned that I’m not going to be able to hang in there and do the work. And I’m worried that my TBI stuff is going to get in the way.

But instead of paying attention to all that and slowing down and taking care of myself, I’ve been pushing myself harder and harder. My “Perilous Relief” has now swung around to bite me in the ass, and I melted down. It wasn’t awful, but it wasn’t pretty. And now I feel like crap.

This is something I really need to pay attention to. I haven’t been getting the kind of sleep I need, lately. I’ve been too busy, too wrapped up in all kinds of important stuff, too worried, too everything. I’ve been driven by my anxiety, my insecurity, my bubbling borderline panic.

Letting that get hold of me is no good. And it just makes my headache more intense. I need to pay attention to my warning signs… and do something about them.

So, what are my warning signs?

Being 150% convinced that a new project is something I must do.

I find myself starting to come up with new projects to work on that suddenly infuse me with all sorts of energy and fascination. I come up with things like creating 6-week courses in online job-seeking skills, or writing a full documentation set for a favorite software program that needs more detail, or launching a new career as a technical translator. In actuality, those projects are ill-conceived and not practical. They appeal to me on a high level, but I do not have the stamina — or the sustainable interest — that is necessary to make them “fly”. And I don’t usually think them through well enough at the outset to realize that there’s a whole lot more detail and involvement in them than I’m ready or willing to devote myself to.

So, I end up canning the ideas in the early implementation stage… and I get down on myself for having gone down that track.

In reality, what I am really doing is infusing my tired brain with energy. It has nothing to do with my life’s work or my chosen path. These new projects are just ways to invigorate a brain that’s pulsing a little more slowly than I’d like.

Not bothering to sleep.

The more tired I get, the harder it is for me to sleep. Funny how that works… I have been so caught up in running here, there, everywhere, tending to stuff, tending to what needs to happen, that I haven’t slowed down long enough to get some rest.

That’s bad. Fatigue is a huge stressor for me and it turns my triggers into hair-triggers.

Going too fast.

I have been kind of going a mile a minute, lately. I’ve been cramming in all kinds of extra activities into my days — running errands, writing emails, doing chores, picking up extra projects. Some of it has been really important, of course — like getting my new job situation lined up. But some of the other stuff has been non-essential — like trips to the library to get books I don’t need to be reading. I’ve been careening from one activity to the other, instead of taking my time. And that’s caused me to make little mistakes along the way, like forgetting to do certain chores and forgetting to send the emails that I do need to send. Little mistakes throw me off and turn into larger issues.

Not self-assessing.

It doesn’t really take much for me to self-assess each week. Or even each week. But I’ve been avoiding it like crazy, and it’s not helping. I’m not keeping tabs on my different issues, so they get out of hand, and I literally forget that I’ve got problems in certain areas. It’s just not good. Ironically, knowing what problems I’m having alleviates them. But ignoring them and pretending they don’t matter just makes them worse. Some people (who I say belong to the “think happy thoughts” school) say that you shouldn’t “give any energy” to troubling conditions, as though paying attention to them makes them worse. But in actuality, not paying attention to them makes them so much more problematic, than if I blithely disregard them.

So, what do I do about all this?

First, start self-assessing again.

Pay attention to what’s going on with me.

Second, get some sleep.

Real sleep. In the pitch-black guest bedroom at the back of the house.

Take looooong naps on the weekend.

Make sure I start going to bed no later than 10:00 p.m. each night.

Enlist the help of my partner to make sure I do this religiously, until I’m caught up.

Listen to my guided imagery to help me with restful sleep.

Deprioritize everything that is not essential, until I am caught up and am feeling better.

Third, stick to my plan.

I actually do have a plan for my life and work. I have specific steps I am going to follow to set things in order and keep myself on track. And I need to abide by it. Stick with the program. Don’t deviate. Just follow it through, one step at a time. Having a specific, expressed plan of action takes the pressure off the part of me that gets anxious about unknowns. And sticking with the plan makes my life a whole lot simpler — and less stressful.

Fourth, write… write… and write some more.

Writing really soothes me a great deal. It helps me focus, it helps me get in touch with what’s going on with me, it helps me keep my act together. I just need to write in ways that are structured and on-p0int. For many years, I kept journals that were rambling, stream-of-consciousness explorations of my inner world. They seemed to make me feel better, while I was writing in them, but in actuality, they were a kind of drug that numbed me to my troubles. They didn’t help me overcome them; they actually got me mired in them even more — I filled them with perpetual, rambling detail that was meaningless to everyone except me in that moment.

The kind of writing I need to do now is very pointed, very lasered, very specific to the real world I experience around me. It’s not all meant for public consumption — I have a number of writing projects behind the scenes that will probably never see the light of day in my lifetime, if at all. But the discipline of writing in a deliberate, structured way is good practice for my life.

In a way, I think that writing is my spiritual practice. I’ll have to write more on that later. But for now, it’s time for me to get on with my day. Take care of some errands I need to do, and prepare for a day of work at a job I’m phasing out.

I actually have a lot of really wonderful things happening in my life. But if I’m not rested and fully functional, all the wonderful things become a terrible burden for my little brain, and the sweet nectar of life gets gooey and a little rancid.

Yes, yes, yes… When in doubt… Sleep.

Tired of being tired

I don’t like being as tired as I’ve been for the past week. I started losing sleep last weekend in anticipation of my testing results. And then when I had my neuro visit, that threw me off, too. So either way, I can’t seem to catch a break. Even though I got good news, I had been keyed up to possibly getting bad news — I like to be prepared. But when things came back inconclusive, well, my system was still on high alert, I wasn’t sure what to do with all that energy. I think it might have been easier, had I gotten something definitive, even if it were less than positive news. At least then I’d have something to focus on, to aim towards, to measure myself against. Even if it’s problematic, it’s at least something.

But this “we couldn’t get anything definitive” trip has been quite demanding. I’ve got all this energy, all this readiness, all this alertness… and nowhere to go with it. My body has been in a state of high alertness, on and off, for many years, and now it’s starting to really take a toll. I should probably exercise to work it off, and I have been trying to get myself to do just that for months — no, years. But one of the things that my TBI in 2004 did was making me really nervous about being around other people, so going to the gym has not been an option for me. That’s bad. I’m not in as good condition as I should be, and I have a hard time getting motivated to GET in better condition.

It’s a problem. It really is. But at this point, I’m more concerned about my sleeping — ‘cuz if I can’t sleep, then everything goes haywire, and I end up in this downward spiral all over again.

You wouldn’t think that sleep would be such a big deal, especially considering how exhausted I usually am. But I’ve had to really work at figuring out how to sleep, as well as get naps in. It’s wild, how napping feels like my new “hobby”. I do it whenever I can… and I’m actually enjoying it. I’ve been “off” my sleeping patterns since my fall down the stairs in 2004, getting anywhere from 3-6 hours on a regular basis, and rarely getting more than 7 at a stretch. It was such a departure for me — for most of my life I craved 8-9 hours each night, without exception. It was what I used to aim for, even when I was a kid. But I didn’t even fully realize just how bad it was, until the past year or so.

The other crazy thing about my sleeping change, was that for some reason I thought it was an okay thing to do without sleep. I guess I would just get so jazzed up and so charged and so whacked out with agitation and nerves, I would think I needed to work off my nervous energy and “get things done”. Well, news flash — I wasn’t really getting much of anything done. Just spinning my wheels. How crazy is that — I would just start all these writing projects, work like mad on them, write and edit, write and edit, write and edit, but then I would get distracted and go do something else, and completely forget about what I had been so determined to do.

Madness. I was just running like a blind fool, spinning my wheels, just being busy for the sake of being busy. Geez! I wasted so much time imagining myself pursuing success, but I was just churning. And exhausting myself in the process.

I have to say, post-traumatic stress may be a significant factor in all this. I’ve been reading so much about traumatic stress, thinking about it, talking about it with psychotherapist friends, pondering it, looking at it, I’m pretty sick and tired of it always being on my mind. But PTSD must be playing a role in my sleep conundrum. After having gone through so much over the past year, tracking down my tbi and other neurological issues, going through all the testing, changing jobs, dealing with family stuff, having various neurological complications, and trying to put two and two together and make sense of it all… not to mention the hard, hard winter we’ve had… I’ve probably got my fair share of PTSD to deal with. I’ve just been so tapped, week after week, month after month, and it’s taken a big toll on me and my already sensitive system. No, I haven’t been at war, and the past year hasn’t been as hellish as it could have been, but stress is stress, and I have been “on and off” about how well I’ve dealt with it all.

Oh, God, I am so tired. It’s crazy. I can’t even figure out how far behind I am on my daily quota. All I can do, is try to catch up when I can. I had a 2-hour nap Saturday afternoon, and I slept for 3 hours on Sunday. I was still really groggy after both naps, and I didn’t feel like I had caught up as much as I needed, but at least I did manage to lie down for a while, and it feels so good to relax.

This is relatively new for me, in the past years. I have gotten worse and worse at relaxing, especially after each TBI I went through. With each accident, I became a little more wound-up, a little less inclined to sleep. I think it’s become a lot more noticeable in the past years, as the cumulative effects of my injuries is catching up with me, and I’m getting older, too.

When I was a kid, I remember having a lot of trouble relaxing and falling asleep. It was very on-again, off-again. I tended to get tired and go to bed earlier than other kids, but I often had to sleep in a specific position, holding something close to me, like my blankets or a pillow (not so much stuffed animals). I also couldn’t sleep if there wasn’t a blanket over me. I was kind of high maintenance when it came to falling asleep, but at the same time I really craved a good long nap, a good rest, something that would recharge my waning batteries.

I still have trouble falling asleep, if I’m not in a certain position or if I don’t have blankets on me. And I’m still exhausted… by myself and my crazy brain. Some people call me a Type A personality. I am driven. I do push myself. I do tend to get aggressive. And I generally go full-force after whatever I want, not letting anyone come between me and my intended goal. But it’s not all psychological/ego drive that moves me. There’s more to it than that — and sleep plays an important role. In fact, the more closely I examine my life and pay attention to what’s going on with me, the more clues arise about what makes me do the things I do — including not relaxing. And in some ways, it has as much to do with physiology as psychology. In some ways, I’d say it has even more to do with the state of my body than the state of my mind. (I’ll write more on this in a bit — it’s actually a pretty important realization/development for me, and it might help others to understand and accept themselves better, too.)

But I’m operating more and more from a deficit, and it’s just not good. Nowadays, I’m trying to learn how to relax. I used to know how, but I seem to have forgotten in the past years. It helps me to listen to some guided imagery for “training” on how to do this. I’ve lost a lot of my former ability at it, so I have to have someone else walk me through the steps of relaxing… progressive body relaxation, deep breathing, letting myself “go” to an imaginary place where I’m safe (which, for me, is a made-up, imagined place I’ve never physically been to — very few of the places I’ve been in real life are places I can relax in)… At first, I felt kind of inept. I mean, who doesn’t know how to relax? What a strange concept. But when I think about it and am totally honest about it, no, I actually don’t know how to relax. Not anymore. And I need help.

I also need help falling asleep. I have noticed, over the past year or so, that when I have the worst insomnia or am waking up way before my alotted 8 hours, I am often very tense, like I’m spring-loaded. Instantly ready for action. Always on alert, because something might come up that I need to react to. My broken-brain reaction time tends to be slow to begin with, so I compensate by always being on-guard, on-point, on-alert. It’s fine when I’m going through my days, but when I lie down to sleep at night, it makes it mighty difficult to relax, let alone fall asleep. But once I let go of the tension in me… once I relax, I can start moving towards sleep.

One thing that’s really helped me, is starting to go to bed before I “have” to. If I wait until 11:00 to go to bed, and I have to get up by 7:00, I feel like I’m under tremendous pressure to perform — to get to sleep promptly and stay asleep for eight hours. I actually put pressure on myself to relax and sleep. But if I head to bed around 9:30 or so, putter and futz around and take my time getting to bed… and if I can get in bed by 10:30 or so, I have a lot less pressure on me, because I am pretty sure I’ll be able to get my hours in.

I’ve been using some guided imagery to get me “down” too. Fortunately, I get so relaxed by the initial cut on the CD, that I usually get to sleep before the “restful sleep” part starts. So, while I’m sure that it helps me, I’m not entirely sure how. Supposedly, it helps even when I’m asleep and am not actively listening. I’ll just trust that, I guess.

Shout-out to the guided imagery folks

Belleruth Naparstek has noticed this blog and has nice things to say about it, which is really very gratifying.

I’ve been using her guided imagery for about couple of years now, and if anything has helped me to come to terms with the complications and hurdles of my TBIs, it has been her Healing Trauma and Stress Hardiness Optimization CDs. I owe her a great debt for her assistance, not least of which because the CDs are self-manageable… as in, I don’t have to endure an in-person session with someone else, I can start and stop them and listen to them as often or as seldom as I like, and I can be totally under the radar when I use them. For all anyone knows, I’m just listening to a relaxation tape or music at work — Note: I only listen to the affirmations at work, as the guided imagery tends to put me into a super-relaxed state, which is not what I need at work.

Personally, I have historically tended to steer clear of guided imagery and meditations. They often strike me as smarmy or condescending or namby-pamby. They often make me feel like the narrator is talking down to me or over-simplifying things. As a TBI survivor, I’m particularly sensitive to being talked down to, so that gets in the way.

Plus, I have trouble hearing at times, and some voices really grate on me. Belleruth’s narration, however, really works for me. I’m able to understand her words, even when I have the sound turned down really low, which I often have to do, ’cause my hearing is very sensitive when I’m stressed. It took a little while to get used to how she pronounces “worry” and “courage”, but after a bunch of times listening, I could eventually deal with it 😉

It might not for everyone, but I gotta tell you, it’s like some kind of magic bullet. Amazing stuff. And it doesn’t make me feel like a total idiot, which is a plus.

I’ll explain more how I think it’s helped me. The mechanics are pretty fascinating. I’m not formally trained in this stuff, but I can definitely relate the details my experience that might help folks understand — and make use of this invaluable resource.