Another day in someone else’s paradise

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The sun’s coming up in the distance. Gradually. The sky is getting pink, and small clouds are hovering over the horizon. Street lights glow orange, and the tail lights of cars blink on and off on the streets below. My room is on the “boring” side of the hotel on this trip, which is good. The “exciting” side is bright and loud and exhausting. This room is my refuge.

I had a great time with my relatives, last night. I have not seen one of them in 30 years, and I had never met their spouse. You can really tell we’re related. Our mannerisms and sense of humor are very similar, and we talk about the same kinds of things. It was also good to connect with real people who are not working at the convention. Real people. Who talk to you because they want to.

I managed to escape the drunken forays of my workmates last night. I went to dinner with my family, and they went their own way – dinner and drinking till all hours. I cannot do it. I cannot tolerate alcohol, and being sleep-deprived is a hazard for me. My whole system starts to degrade when I am overly tired, and I make bad decisions that get me in trouble. I say things I should not say. I get combative. I get off-balance and am in more risk of falling. I make stupid choices and make myself even more tired, which compounds my difficulties. I cannot afford to get in that kind of trouble – especially in a work situation. I have a spouse and a home to provide for, and I also need to keep myself safe.

That is something that people with no health challenges can understand. They can just run around and do whatever they like without repercussions. A playground like this is paradise for them, and they can let their hair down and run wild, staving off their fears of dying and getting old.

My life, unfortunately, is all about repercussions. But I cannot tell anyone, because if people find out that I have “issues”, they can be very unkind. And they can start avoiding me. That’s why I never tell anyone about my brain injuries. They just don’t get it, and this is difficult enough, without adding constant isolation to the mix.

Brain injury can be deeply isolating. People do not want to confront human limitations – especially when it comes to neuro stuff. They just don’t. So, I spare them the discomfort of disclosure, and we can all just live our lives. But that’s the double-bind. If I don’t tell people I need special consideration and assistance, I can never get it. But if I do tell them, I can lose my job. And don’t tell me it’s illegal to discriminate. Employers, bosses, whoever… will find other ways to exclude you, if you’re “not a good fit”.

I like having a job. I like having an income. I like not being homeless and living on the edge. And silence is the price-tag on that.

Muddling through. Battling back the demons. Dancing carefully on the razor’s edge. And never letting on, just what is happening with me.

All the lights and noise and busy-ness that energize others… they exhaust me. I’m on constant guard against the onslaught. All the excitement, the long hours, the rich food and drinking… they fry my system, and I can barely keep it together… then collapse at the end of it all. I get so depleted, that I am pretty worthless for weeks after. It’s the price I pay for keeping up with “normal” people, and it has been this way my entire brain-injured life.

So, I suck it up. Keep going. Just focus on this being over in a few days. Three days and counting. And I really only need to work part of that time. I just want it to be over. But in the meantime, I enjoy what I can. Focus on the positives. Take time to myself. Recharge as best I can. And sleep whenever possible.

Focus on the good, so I don’t overwhelm myself with negativity. Just stay the course and be grateful for what good I can find.

Such a headache

Holy crap, I have a headache. It feels like a vice is pressing in on both temples, and my eyes hurt. I’m sick to my stomach. I have felt like this since early this morning. Probably all the pressure I’m putting on myself over what may or may not happen on Monday when I give my notice.

Silly. I have given notice at past jobs a bunch of times, and rarely has it been pleasant. But I always got through it. Once, I gave notice to a real jerk who had me in a very important position and was seriously hindered by my leaving, but that individual was an unethical creep who was in constant violation of official and unofficial ethical codes — both within the company and without. The really sad thing was, they were in a senior position, so they were unassailable. Powerful. They knew I could report them, and they used their power to intimidate me. The weird thing was, I was actually the one with the power, but I didn’t realize it then.

I think the same thing holds for my current situation. All too frequently, I think I have no power, when I’m the one who has the most.

It was a huge relief to get away from that creep. I saw them on television years later, at some security training presentation that was on public television. There they sat, all smug and sh*t, with their clueless spouse beside them. My stomach turned, when I saw them, and I was glad that I had left. Even if I was once worried about them retaliating at me. They never did.

Creep.

I think part of what is upsetting me about my present situation is the idea that it might harm my future prospects if I leave this job right now. I’m afraid that there will be backlash and it will get ugly, and I will not be able to keep myself from fighting back when I feel like I’m being attacked. I’m pretty much on alert, right now, and I am feeling like I’m under attack, even though it is the thoughts in my own head that are attacking me – and giving me a headache.

I need to calm myself down, so I don’t escalate with the wrong people.

As you may be able to tell, I have invented a whole scenario in my mind about “how things will turn out”… and it’s not good.

So, enough of that.

I need to focus on what truly is — making up my list of activities for my new employer, so they don’t consider my existing side projects to be part of their intellectual property… working on a bunch of slides for a presentation I’m giving to a local community group in another week and a half… taking care of household business… and staying healthy and happy all the while.

Maybe — just maybe — I am making myself out to be more important at my current job than I really am. Maybe I am just inventing this whole scenario about me being indispensable. Nobody is indispensable. At least, they shouldn’t be. I have no idea how things will turn out, I have no idea what the reactions at work will be. It could be that people are expecting my resignation on Monday, and they already have a contingency plan in place.

It could be.

Rather than focus on the maybe’s that are bad, why not invent some maybe’s that are good? And focus on them.

Maybe that will get rid of this headache.

I did manage to lie down and take a nap for a few hours, earlier. That was good. I’m also reading some books — “Psycho-Cybernetics“, which is a self-improvement classic… “Overachievement“, which is a new book about how to achieve top performance in unconventional ways… “A Benjamin Franklin Reader“, which is a collection of his writings and stories from his live… and some other books about money and power. And brains. And samurai legends.

I’m also reading a scientific paper on how perceived mental effort will wake you up — basically, if you believe a task is difficult, your “tonic arousal” (temporary state of wakefulness in your brain) will improve. So, that’s my new approach to getting boring sh*t done without screwing it up — tell myself it’s really, really hard, and it’s going to take a lot of mental effort to do it, so then my brain kicks into gear and gets with the program.

I’m starting to feel better, actually.

I should go juggle… but I’m still pretty sore from all the juggling yesterday.

I should probably stretch, as well, and get the kink out of my neck, which has been paining me for months. I’m sure that’s not helping the headache.

I’ve been doing some dual n-back training on and off over the past couple of days, and I have to say, the 3-back training is all but IMPOSSIBLE for me to do. I get maybe 1/3 – 1/2 of the questions right. It’s very discouraging, because I want to be at 100%, and I’m not. I think that is contributing to the headache, too. So, I’ll give that one a rest, even though I do want to think better, and I feel like it is helping me.

I need to rest. I really need to rest — so that I can be strong on Monday.

With regard to the dual n-back training, I think the best thing for me to do is hold the reins myself — always use the manual controls and work on specific areas of performance to improve a few main things:

  • reaction/response time – increase and decrease the time I need to respond in
  • number of pieces of information I retain – vary that from session to session
  • different combinations of sound, color, position, and shapes – target different mixes to keep myself sharp

I need to start in very specific ways and work my way up, not just use the generic settings in the program. That’s just maddening, and it’s not giving me the kind of precision training I want to get. I’ll talk to my neuropsych about what areas would be good to improve. I know that processing speed is one of them, as well as the number of items I can keep in my head at any given point in time. I could really play with that — set the response time to really long, and have a handful of different elements to remember each time. There are an infinite number of possibilities here, so I need to make the most of it. On my terms.

My frustration with the program is not helping my headache. So, I’ll do something about that.

But most of all… Take a break. Get myself a big glass of water. Do some stretching and movement. Maybe juggle a little bit, but not too much.

Balance. Relax. Take care of a few things that need to be done. Quit stressing over what has not happened yet — and may never happen.

And enjoy the rest of my Saturday afternoon. As well as my Sunday to come. It’s Mother’s Day. I’ll need to call my Mom.

Onward.

 

Back from my 2-day reboot

Ahhhh… that’s more like it.

I just got up from a 2-hour Sunday afternoon nap, feeling like I’ve gotten the reset I’ve been needing.

My parents came to visit over the weekend, and we three really good days together. I took Friday off, and we hung out, roamed around my area, spent some time on Saturday with friends they’ve never met, who are more like extended family to my spouse and me, and made and ate good food.

I tend to really dread their visits, because there tends to be a lot of tension with my spouse, who doesn’t see eye to eye with them, politically or socially. This time there was some tension, but I spent a lot of time alone with my folks, while my spouse slept or did other things, so we didn’t have too much overlap.

And the times when there was tension, we managed to diffuse it pretty well.

Overall, I handled things pretty well. Both my spouse and my parents are very high maintenance, so I have to actively manage their activities. I have to manage my spouse, keep them relatively calm and not panicked, jump in and help them with different physical activities, and make sure they feel like they’re involved. And I have to manage my parents, because they have a tendency to pick up tools and start to cut and trim and “fix” things that don’t actually need fixing, which leaves more work for me to do later.

In the past, we’ve had a non-functioning bathroom faucet for several months, because my father decided to fix the drip without having a seat wrench.

Took me a few months to get the seat wrench — I kept forgetting to look for one — and then took me a little while to figure out how to properly use it and fix what my father broke. I felt pretty stupid wrangling with that simple tool, but there it is. What can I say? I’d never used a seat wrench before, let alone looked for one at the local hardware store.

My mother has a green thumb, and she loves to prune and dig and rearrange plantings, which is great, so long as she’s supervised. Once, she “went rogue” with a clipper and pretty much denuded one of my spouse’s favorite plants — one they’d been given for their birthday.

So much for the prized birthday present. That was a sore spot for months, because the plant in question was a centerpiece in our home and became a constant reminder of the havoc my mother can wreak, if left unattended with a clipping implement.

This time, I was “riding herd” on all three of them — parents and spouse — because my parents are starting to slip a little, mentally and physically, and my spouse has been increasingly unreasonable, hyper-sensitive and aggressive… and I didn’t feel like dealing with yet another Clash of the Titans, like we’ve had in prior years. In years gone by, they’ve practically come to blows.

And that blows.

But this time, we kept peace pretty well, and we left things on an up note, when all was said and done. My dad got to fix something that needed fixing. My mom got to plant some perennials we’ve been meaning to plant, and my spouse got to sleep almost as much as they wanted to, as well as spend some valuable time with our friends on Saturday.

Coming off the weekend, I’m feeling pretty good about the whole experience. My parents are utterly exhausting — they are go-go-go, non-stop, all the time. They’re like sharks. They never stop moving, and they can never sit still for longer than an hour. An hour is long for them. In the past, I’ve completely melted down with them, because of the constant activity, the constant movement, the frantic pace they keep up. It’s generally too much for me, and it sets off all my issues — irritability, light sensitivity, noise sensitivity, sensitivity to touch, distractability, fatigue, anxiety… you name it, they set it off.

But this time I did well with them. I kept up. And when I felt like I was starting to wear thin, I stepped away for a little bit. I went to bed early. I took breaks from them all, now and then, and I was pretty good about watching what I was eating. I ate more than I should have, that’s for sure, but it was all healthy food, so that’s something.

Yes, that’s something.

At the end of it all, I’m feeling like I did a good job of handling myself and the challenges of the past three days. I had a lot of trepidation and anxiety about how I would handle things, because in the past things have been very tense, there have been a lot of fights and tension, and for days afterwards, my spouse would go on and on about the things that my parents did and said “to” them.

But we’re all slowing down, and none of us has the old intense edge we used to. My parents have pretty much “gotten” that they don’t have the answers to everything, and now their priority is on enjoying the time they have with the people they love. Their friends and peers are getting sick and dying. Members of our family are going through very hard times. And it’s like they finally got their heads screwed on straight with their priorities in life.

That’s a relief.

And my spouse has lost a lot of their hell-bent momentum, since they got really sick about seven years ago. They’ve also been declining, cognitively, so they’re less able to kick ass and take names like before.

Basically, everyone’s decline is working in my favor. I hate to say it, but it is.

And now, as I look back on the non-stop action of the past 2-1/2 days, I feel a great sense of relief and relaxation that my parents have returned home, and I can get back to my regular life.

Of course, “regular life” means going back to work to deal with all the bullsh*t at the office, the politics, the jockeying, and all the stupid-ass competition between co-workers (who should really be collaborating, except that they don’t seem mentally capable of doing that). Well, that’s tomorrow.

Right here, right now, I’m getting my act together, figuring things out, and pretty much settling into what’s left of my weekend. It’s been a good couple of days, it’s reset my priorities again, reminded me where I come from and where I want to be heading in my life, and it’s good.

It’s all good.

 

 

 

 

Keeping sharp during the holiday seasons

So, I’ve had a few days to simmer down after the last weekend of blow-ups, and now I’ve got another weekend ahead of me to sort things through and do a better job.

That’s about the best that I can expect of myself, under the circumstances. What’s done, is done. And I have to just let go of it, even though it still bothers me and I get sick to my stomach, thinking back about how rough it was last weekend.

New weekend, new chance. New lessons learned.

The big lesson I learned — once again — is that “time off” isn’t always such a good thing for me to have. I can rest, certainly. And I can take some time off. But spending too much time resting and relaxing… that’s a recipe for disaster.

Idle hands are the devil’s workshop, as they say, and I have so much I need to do, anyway, that taking too much time away just stresses me out and makes me even more irritable and difficult to live and work with. I need discipline, and a planned approach, which will let me not only budget my time and get things done, but also allow me to rest. It’s all a balance. It’s when I have too much time on my hands and I’m not extending myself to do something meaningful, that I get into trouble.

The same thing goes for the week between Christmas and New Years. I have the full week off — 8 days total, plus Christmas Eve, when they close the office early. So, I have all that time, and I’m not traveling anywhere. I need to keep things pretty structured during that time, and I also need to give my spouse some space and room on their own, so I’m not underfoot and they’re not walking on eggshells around me.

My spouse is convinced that I am dangerous, and that I could go off at any time. They tiptoe around me and placate me and act like I am a monster, and that really drags me down. I still feel pretty crappy from the whole thing, and them dragging it on, just makes it worse. We both try to keep it light, but it just feels like they’re back to where they were for years, not giving me the benefit of the doubt, really trying to “handle” me and keep me in check, so I don’t go off.

It just sucks when the environment is like that. It gets old quick, and I don’t feel like being around it.

So, I need to clear out, at least a few of the days. Keep busy. Keep it light, for sure. Maybe not spend that much time around them, since they don’t really want to be around me. I dunno. I just wish it were easier. But then it wouldn’t be the holidays.

Anyway, I need to keep pretty sharp during the holidays — not get sucked into the whole junk food thing, keep getting my exercise, stretch regularly, not get bogged down in a lot of busy-ness, and keep my mind and spirit clear. I can’t stand feeling rotten all the time, and I hate how I tense up, whenever my spouse is talking to me. It’s stupid and painful for both of us, and I don’t know how to make it stop.

I guess these things work themselves out with time… We’ll find out.

In the meantime, I need to take care of myself and stay as clear and cool as I can.

What my spouse does, is up to them.

Learning to do it anyway

Sometimes it feels like the weight of the world…

Woke up this morning feeling sick – headache, sick on my stomach, foggy… Going back to work tomorrow probably isn’t helping any, but life goes on. There it is.

I’m pretty much in the Emotions/Moods “section” of those 84 ways TBI can make your life really interesting

Emotions/Moods

8. Agitated, can’t settle down – I’m all wound up and can’t seem to get myself to chill to get to bed at a decent hour each night. I’m way agitated, and fidgety and am having trouble focusing in to get shit done.
9. Angerrrrrr!!! – I’m pissed off. At work. At my spouse. At myself. I’m just angry. It’s driving me — it’s driving me crazy.
10. Anxiety – Feeling vague fear, worry, anticipation of doom – Yeah, when I go back to work tomorrow, I have the feeling that I’m going to be so totally screwed by my workload and the “lost week+” that I’ve had away. Not that it’s any different than it’s been for the past year or so, but now the sense of doom is really coming in.
11. Depression, feeling down – My mood has actually been pretty good… but I have to really fight back the depression. It sets in quickly if I don’t stay on it.
12. Excitability! – I get all worked up over stuff, then I come back to it later and I can’t see what all the excitement was about. The worst thing about the excitability is that it distracts me and takes me off-course, so it takes me longer to get where I’m going.
13. Everything feels like an effort – Yeah, pretty much. It feels like everything is a massive effort, and I can’t figure out where to start.
14. Feeling unsure of yourself – Yeah, pretty much all the time, these days. I know better (rationally) and I fight it back, but that feeling is always there… like I never know what’s going to come out of my mouth or what I’m going to do next. Sometimes I get it right, sometimes I don’t, but I’m never 100% sure what’s going to happen.
15. Feelings of dread – Yeah, that. Dread and anxiety. Like I just can’t deal with sh*t.
16. Feeling like you’re observing yourself from afar – This is a weird one, because it’s really like that. It’s like I’m standing at a distance and watching myself do and say things that don’t make any sense to me.
17. Feelings of well-being – On and off. It’s not all bad, all the time. Sometimes I have these sudden rushes of feeling really good, really solid, really sound. It’s a nice break.
18. Feeling guilty – Guilty over what I’ve done and what I haven’t done… what I should have done, what I forgot to do.
19. Feeling hostile towards others – Yeah, this is a tough one. I’m not feeling that great today, and we have a friend staying over, and I have to watch myself to not come across as hostile and aggressive, because they’re pretty sensitive and have a hard time making and keeping friends, as it is. My hostility has nothing to do with them, but they could easily become a target, if I don’t manage this.
20. Impatience – Yeah – what’s taking everything so long?
21. Irritability – Like the hostility, I’ve gotta keep a handle on this. Others shouldn’t have to pay for my issues. It has nothing to do with them.
22. No desire to talk or  move – This one set in when I woke up, and it’s still there. The antidote? Get the hell up and do something. Anything. Just move, goddammit.
23. Feeling lonely – Yeah. That. The consolation I get is that I’m not alone in feeling lonely. Plenty of people do. I also need to focus on the fact of what I’ve got in common with others, and that helps.
24. Nervousness – Nervous about work, nervous about money, nervous about life. Nervous.
25. Feelings of panic – On and off. This is much less extreme than it was several years ago. I’ve learned how to relax. I’ve learned how to recognize the signs that I’m just panicking, and it has nothing to do with actual reality. Breathing helps.
26. Rapid mood swings – Yeah, gotta watch that. I’m sick and tired today, so I know I’m more susceptible.
27. Restlessness – I want to run, I want to walk, I want to jump in the car and drive away. I want to go out and pick a fight. Not my best ideas… and I know it’s just the fatigue, the fogginess, the feeling of being “off” that’s doing this. Adrenaline and novelty blocks out all the distracting what-not-ness that’s swirling in my head. Surely, doing something extreme will take my mind off it. Well, sure – but at what cost?
28. Tearfulness, crying spells – Not so far, which is good. A few days ago, when I was feeling really sick, I had this. Thankfully it passed. Of all the TBI issues that come up, the tearfulness is the worst for me.
29. Feeling tense – Yeah. That. Like I’m wound so tight, I’m either going to snap, or I’m going to shoot straight to the moon. Tense. Really Tense. Black Flag Tense.
30. Feeling vague longing/yearning – Absolutely – for something I want and need, but can’t quite put my finger on. I used to have an antidote for this: daily meditation and breathing. Then I got sick of it and stopped doing it, because I just wanted to get on with my days with out having a lot of ritual and sh*t to do, first thing in the morning.

And as a result of these things, I’m also grappling with the follwing:

Day-to-Day Activities
31. Being overly busy (more than usual) – I’ve got all this stuff I want to do, and it’s piling up. I’m making myself crazy with it.
32. Feeling like you can’t get moving, you’re stuck – And under this pile of stuff, there I am, pinned down and feeling like I can’t move.
33. Feeling like you can’t get anything done – It’s just a feeling, I know, but that’s how I feel right now — nothing is moving, I can’t get anything accomplished.

Geeze. Enough of this. Yeah, things aren’t great right now, but once I get moving, I’m sure they’ll loosen up. That’s the thing that I’ve had to learn, over and over again. I can’t start from where I want to be (feeling great and having a lot of stuff done). I need to start from where I am — even if it’s sick and tired and foggy and aggressive and a bit ragged around the edges.

Gotta get out of my head and find something to really focus on. Just gotta. I’ve got to get my mind off this headache, this nausea, this fogginess, and all the above-mentioned crap. I’ve got to just get moving and do what needs to be done today. I do have things I need to take care of, and I just need to do them. I’ve had two days to recover and recoup, and that’s been good. Now I need to kick it again and get a move on. No matter how I feel, just do what needs to be done, and then enjoy having done it.

Yeah, it’s turning out to be a beautiful day, so I can get some work done in the yard and hang out with this friend. I will need to watch myself today, to make sure I’m not all edgy around them, so I don’t chase them off the way I have chased off many other people. I just need to keep cool, keep focused on what needs to get done, and do it.

And then sleep this afternoon. Get some rest. And get ready to go back to everyday normal life. Things will take care of themselves, if I’m just honest with myself and keep an eye on myself. This is not rocket science, it’s just life. Everybody has to contend with this, TBI or no. So deal with it, I shall.

After all, it is a beautiful day.

More space needed

Onward... Upward... Outward...

I’m working from home today, and I’ve noticed something interesting – I need more space.

The office I have at home, as nice as it is, is feeling small.

The places around the house where I usually work are also feeling small.

Even the areas that I have marked out as mine (which is a rare and deeply appreciated luxury) feel cramped.

I need more space.

It’s not that I’m greedy – if anything, I like to do with less. I have always felt that the less I need, the stronger and more secure I am. But with the days getting longer and the weather getting nicer, I’m feeling this strong push to move out, to get out, to expand and extend and try new things.

Move into new and different spaces.

Do something a little different.

And spread out a whole lot more than I have ever allowed myself to do.

See, here’s the thing…

Ever since I realized that the pattern I have of not being able to stick it out with jobs was NOT about me being deficient or slacking… ever since I “got it” that the things driving my interests and intentions have been intricately connected with how my brain works, and how my body works, too… ever since I realized that I don’t HAVE to repeat all my old patterns of never being able to stay at one job for longer than a year or two, and that I don’t have to get all worked up and tweaked and bent out of shape over work-related things, as well as people-related things… Well, something has changed.

Something has loosened up.

Something has expanded.

And I don’t want to spend all my time cooped up inside a building, in an office, in one place and one place only, day in and day out. I need to move. I need to expand. And I need to do this with the work I am doing and the life I am living — not ditch the situation I’m in now, and move on to what’s next.

It’s ironic, really — the stronger my comfort level with where I am, the more I want to really dive in and expand and evolve what I’ve got. I want to add more dimensions to my work. I want to develop a deeper understanding of the people I work with and a strong connection with my work itself. I have so much going on, day in and day out. What I need most, is not so much a break from the activity, as a deeper understanding and appreciation of what it is I’m doing — and why.

I can’t see going through life with the same tightness and uptightness I’ve been caught up in, for so long. As long as I can remember, I’ve been uptight. Having all sorts of sensory issues, where my body feels like it’s alternately being attacked by the outside world, and then attacking me, hasn’t helped. Nor has the anxiety and agitation and constant restlessness and fatigue and confusion that comes with TBI and all the stuff that follows on it.

But even though I still have my issues (boy, did I ever sleep wrong last night – my neck is KILLING me! – and I’m bone-tired from not getting enough sleep), they don’t throw me like they used to. I am doing much better about just realizing that they’re there, letting them be, and just managing them. Taking a nap. Doing some relaxation. Reminding myself that it’s just my “stuff” acting up again.

And not letting it get to me.

It’s actually pretty amazing, if I think about it. After a lifetime of hassle and worry and tension and stress over this stuff, suddenly, it’s not this horrific drama anymore. After being literally locked away in habits and behaviors that I never questioned, just went with, I suddenly have choices about how to live my life, how to respond to it, how to keep myself going, in the face of even the most problematic issues. Things like trying to function on 4 hours of sleep, trying to navigate messed-up finances, trying to patch back together relationships that have frayed and strained to the breaking point, and functioning in a high-stress, fast-paced work environment… I can handle them. I really can.

Which opens up a whole lot of possibilities for me. Possibilities to just live my life, instead of having to struggle through. Possibilities of being able to actually enjoy my life, instead of laboring from one problem to the next. Possibilities of seeing what all I can get out of situations, and what all I can put into them, instead of just enduring till the bitter end.

And with this new expansiveness, I really feel the need for more space… to get out of my office and out in the day… to stop following the exact same route to work each day, and experiment with other routes on my way home… to step outside my daily rituals and routines and improvise a little. Riff a little. Kick back and innovate a little.

It’s all good, and it’s all happening.

I’m getting more space.

At last.

And what a beautiful walk it was

Back from my walk out in the woods. Getting towards sundown… birds settling in for the night, tiny creatures singing out of sight, and the breeze on my face, cooling me after my brisk hike into the woods.

I am struck by the amazing beauty of it all, the simple power of something as basic as new life emerging from the earth, once again. Green, new, hopeful life without a reason to be cynical or self-destructive.

And I am struck by the impact that conscious breathing has had with me. Spending just a few moments breathing steadily, slowly, focusing my attention on a single point — a pine cone, a fallen branch, water in a little stream flowing over glistening rocks…

In all my years of hiking these woods — although I’ve been away from them for the past 3-4 years, as my last fall made it very difficult for me to be outside and in wide open, uncontrolled spaces — I have rarely (if ever) had the kind of presence in that place I had this evening. I usually returned to my home somewhat tense and shut-down. I would start out wide open and ready for a good walk. But when I got home, I would be a far sight less relaxed than I expected/wanted to be.

For years, I knew something was amiss with me, when I would go out on my walks. I would walk for about 15-20 minutes and everything would be fine. Then I would start to shut down, would start to ruminate about this, that, or another thing. I’d get stuck in my head and wouldn’t actually see very much on my walks, even though I’d cover miles of ground in beautiful, healthy woods.

I always knew something was wrong, but I couldn’t put my finger on it. Now, I think it’s because I would get tense, being out in the woods, I would start to feel uptight about something, and I wouldn’t breathe properly. The lack of deep, measured breath would give rise to more tension and add to my agitation, and then I’d ruminate even more… A self-fulfilling cycle that I could never seem to break.

Somehow, I’d always get trapped in my head. And my walks would turn into traveling psychodramas.

But today, I took my time, made a point of stopping to breathe, periodically. And I just let it all in. Whereas before, I would start to wall myself off and shut down, today, I let myself stay open to what came across my path. No social anxiety, when I happened across a landscaper loading a backhoe onto his trailer. No drama when cars would pass me closer than I liked. No shutting off and getting stuck in my head the whole time.

Today was different.

Because I breathed. On purpose. Measured, mindful, enjoyable breaths. Good breaths. With awareness and purpose.

Today was good.

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…

Better today… of pain and ptsd

Well, I got to bed by 10:00 last night, and I was able to sleep through till 6:30 or so, which is an improvement over what I’d been able to do over the last weeks.

I’ve been kept up by anxiety over what my neuropsych evaluation is going to reveal — that’s coming up this week — me being terribly afraid that I had given wrong information or I just couldn’t think my way through certain things… I’ve been second-guessing myself for days and days, wondering if I answered as accurately as possible… of if maybe I’m more crazy than head-injured… or that my head injuries have led to some sort of mental illness that’s invisible to me because of my anosognosia… or maybe I’m just on this wild goose-chase that will end up being all for nothing.

I try to be level-headed and logical about this and remind myself that my neurpsych has been doing this for many years, and they have certainly seen worse cases than me. But still, not being able to be a full participant in the process and being a subject of examination and enquiry… well, that makes me uncomfortable, and even if I do trust the doctor. I just don’t know what to expect, and I cannot manage my wild rang of emotions, if I don’t know what I’m managing for.

Fortunately, I do feel better this a.m. — not so much pain, not so much tenderness. I got a bit of a massage yesterday p.m., and it really, really helped. Even if it was painful at times — I don’t care. Short-term pain for long-term benefits. I’ll take the pain in the short-term, if it will help me feel this much better in the a.m.

I still have discomfort when I move – especially in my hips and lower back. And my elbows are still sore. And my thighs are still tender. But I can push up my sleeves, so they’re not chafing my wrists, and my body isn’t screaming so loud I can’t hear myself think.

I tried the Arnica yesterday. i can’t say I noticed an immediate effect, but I’m going to keep trying it — 4 tablets dissolved under my tongue 4 times a day, for a few days. I’m going to take it again after I finish my cup of coffee. (I’ve heard that you have to be careful taking homeopathic remedies when you’re eating or drinking. It’s my understanding that the remedy needs to be the only think you can taste… or I could be wrong.) I’m not off caffeine entirely — that would be too much. But I am cutting back. I only had one cup yesterday, which I think helped me sleep.

This arnica experiment is definitely going to be totally screwed up by my other changes I’m making. In a “real” test, the only thing I would change would be taking the arnica, not getting more sleep or changing my diet or getting more exercise. But dude, I’m in pain, and I need it to stop, so I can get on with my life.

Thinking about the role that pain has played in my life, I think there’s a definite trauma aspect to it. I have friends who specialize in treating trauma, both in medical and psychological environments, and they talk a lot about it. They also love to tell me I’m a “trauma survivor” — having had a whole bunch of accidents that left me progressively more impaired, as the years went on, along with the social, interpersonal, and physical after-effects of my impairments that haven’t helped me get by in the world.

And since I have a history of trauma — physical, as well as psychological — I have to admit I do show signs of PTSD.

Over at Wikipedia — http://en.wikipedia.org/wiki/Posttraumatic_stress_disorder — I found this (note: my comments are in italics):

The diagnostic criteria for PTSD, per the Diagnostic and Statistical Manual of Mental Disorders IV (Text Revision) (DSM-IV-TR), may be summarized as:[1]

A. Exposure to a traumatic event – multiple head injuries over the years, along with other accidents and fights/clashes with people that threatened my safety
B. Persistent reexperience (e.g. flashbacks, nightmares) – I’ve had lots of them over the years… where do I begin?
C. Persistent avoidance of stimuli associated with the trauma (e.g. inability to talk about things even related to the experience, avoidance of things and discussions that trigger flashbacks and reexperiencing symptoms fear of losing control) – some things I just will not talk about… you can pump me for details till the cows come home, but I’m not talking about certain things that have happened to me, unless I can know that it’s not going to ruin my life, if I do
D. Persistent symptoms of increased arousal (e.g. difficulty falling or staying asleep, anger and hypervigilance) – well, yuh, I’ve had more restless nights and being jolted awake at 3 a.m. with my heart racing and my body soaked in sweat… than I care to think about
E. Duration of symptoms more than 1 month – try months and months… sometimes years later, after the initial event is over
F. Significant impairment in social, occupational, or other important areas of functioning (e.g. problems with work and relationships.) – just ask my friends, family, and co-workers… just ask my 17 former employers

Notably, criterion A (the “stressor”) consists of two parts, both of which must apply for a diagnosis of PTSD. The first (A1) requires that “the person experienced, witnessed, or was confronted with an event or events that involved actual or threatened death or serious injury, or a threat to the physical integrity of self or others.” The second (A2) requires that “the person’s response involved intense fear, helplessness, or horror.” The DSM-IV-TR criterion differs substantially from the previous DSM-III-R stressor criterion, which specified the traumatic event should be of a type that would cause “significant symptoms of distress in almost anyone,” and that the event was “outside the range of usual human experience.” Since the introduction of DSM-IV, the number of possible PTSD traumas has increased and one study suggests that the increase is around 50%.[48] Various scales exist to measure the severity and frequency of PTSD symptoms.[49][50]

Now, this is all pretty thick stuff for me to get into. Personally, I don’t feel like I can take on much more to process, other than just dealing with my own pain… but I have to say, the pain is worse, when I’m feeling the after-effects of some past trauma. When I’m dealing with people who have really physically hurt me in the past — like adults who used to really knock me around — or I’m interacting with people whom I have hurt in the past because of my bad behavior and poor social integration.

When I think back on being a kid, I remember a lot of pain, both from internal sources and from without. My pain issues date back to fairly early childhood – I was not a very limber kid, and I had a lot of difficulty doing things that other kids could just do, like touching toes and climbing and jumping and doing cartwheels and such. I had a lot of trouble with my balance, and I couldn’t do a somersault until I was about 5 or 6. I can’t remember exactly how old I was, but I do remember the day I did my first “real” somersault — I didn’t fall off to the side, but was actually able to just roll right over and keep my balance. When I tried to stretch and extend, like other kids could, it was very painful for me. But I kept trying, and I just forced myself to stretch and extend… until the pain was too much, and I had to stop… which was usually far short of where I wanted to be.

I wanted so much to participate, to take part, to be a part of what was going on. I hated being on the outside, not able to do what other kids could as easily as they could, so I pushed myself — very hard. There was a lot of pain, but that was just the price I paid for being able to be a part of what was going on.

The other source of pain was from the outside. I was raised by parents who didn’t know how to relate to me. I tended to get over-stressed and over-extended with all the stimuli going on around me (including the pain), and they tended to discipline me. Grab me. Jerk me around. Take hold of my arms and pull me to where I was supposed to be. It was excruciating, and it was shocking. My memories of childhood are full of instances where my mom would grab me out of the blue — I wasn’t following what was going on, and I didn’t understand what she wanted me to do, so she would yell and/or grab me and pull/push me to where I was supposed to be. With my sensitivities, it was like just being pounded out of the blue, time and time again. I could never prepare for it, I could never brace for it. And I didn’t really “get” why it was happening, a lot of the time.

I wasn’t able to explain my “bad” behavior to them, and they didn’t seem much interested in finding out if I was having problems, or if I was just a bad kid who needed discipline. I think, because of their religious orientation and the role that my very religious grandparents had in our lives, they “went with” the religious explanation that I was a “sinner” and that “sin” or the “devil” had taken hold in my life, so I needed to be disciplined to stop my acting out.

So, they did. I got called a lot of names, when I was little, because I couldn’t keep up cognitively or physically — spaz, space cadet, bugger, doofus, spastic… that was my dad. My mom preferred to call me pathetic or disgusting or asinine (asinine was her favorite). I was actually shielded from their wrath a lot, because I didn’t understand till I was 7 or 8 or 9 (?) that they were actually talking to/about me. I thought they were just saying what they were saying into the blue. It didn’t occur to me, till I had been in school for a few years, and other kids were calling me names, that my mom and dad were calling me names, too.

Actually, come to think of it, it didn’t occur to me that my mom was calling me names, till a few years ago. Somehow, being mistreated by my mother is a lot harder to take than being mistreated by my dad.

Even when they showed affection, my family’s hugs and touches were extremely painful. My family — for whatever reason — loves to give big, hard hugs, and it hurts like crazy when they do! I don’t know what it is that makes them think it’s okay to just throw their arms around someone and squeeze so hard… or maybe they can’t really feel it, themselves, so they have to have hard hugs and forceful contact, to even tell someone is there. My grandparents were hard huggers, and my mom was/is, too. She loves to reach out and grab people as a sign of affection, which is a double-whammy — I don’t want to shut her out, but I cannot take the force of her contact. Just over Thanksgiving, she was walking by me, and she reached out and grabbed my arm as a sign of affection. And when I was getting ready to drive home, with the weather being as rainy as it was, she got scared for my safety and she just threw herself at me and hugged me really hard, which really hurt.

I still haven’t figured out how to tell people that when they touch me, sometimes it feels like they’re pounding on me. It’s embarrassing, it’s troubling, and I dread people knowing just how much pain they’ve caused me. Being in pain is bad enough, but then “spreading it around” by telling others about it — and telling them there’s nothing they can really do, but keep their distance — is just awful. I’ve done it before, and it’s awful. Awful to be pushed out to the margins. Awful to be forced to push people away. Awful to have to hold them at arm’s length and never let them close, without pain.

Thinking about growing up in constant pain, raised by people who repeatedly hurt me terribly, is definitely not easy to take. I have to tell myself my parents weren’t fully aware of the effect that their behavior was having on me, and that if they’d known what it was like for me when they grabbed me or hugged me, they would not have done it. I have to tell myself that they had no idea, that they were innocent. Believing that my parents would intentionally harm me, is more than I can process right now.

But it’s probably worsening my pain, to hold back from that belief. Now that I’ve been away from them for a whole day, I’m starting to relax, and I’m starting to be able to adddress my pain. I think when I was in the midst of it all, I was so shut down that even if I’d been in terrible pain — which I may have been — I wasn’t aware of it. I was up in my head. I was too busy talking. I was too busy trying to stay out of arm’s reach of both my parents.

I rarely notice until days after the fact, but when I am in the midst of family at holiday/Thanksgiving time, I hold as still as possible for long periods of time — both as an attempt to not draw attention to myself, and to keep myself from acting out when I get stressed. When I’m stressed, my brain stops working really fluidly, and I end up needing to take more time to explain myself. But when things are all wild and woolly, like at my parents’ place at Thanksgiving, I don’t have the time to fully explain myself, and I end up hurting people’s feelings from a poorly told joke, or an attempt to josh around with others, and then I start flashing back to all the other times I said/did things that people took the wrong way.

Yes, I hold very, very still during the holidays… both for my own protection and that of others.

And it probably doesn’t help my pain — because of my rigidity and my disconnection from my body.

And it doesn’t help my PTSD. Because I go back to that place where I’m on auto-pilot, where I’m just keeping my head down and keeping moving, where I’m just doing what’s in front of me, and not aware of whether or not I’m hungry or tired or anxious or stressed. And when I’m not aware, when I’m just soldiering through (as I do so well!), I tend to push myself even harder — do more stuff, take on more tasks, be more manic, be more forceful, be harder on myself and add more things to my to-do list — and that cuts in on my sleep, it cuts in on my rest, it cuts in on my physical well-being.

And I have pain. Lots of it. Tearing, ripping, screaming, shooting, chafing, burning, crazy-making pain.

So, in a way, the pain is like my barometer for how I’m doing, stress-wise. It tells me if old stuff is coming up that’s making me do things and make choices that aren’t healthy. It tells me if I’m falling back on old patterns, letting my fears and anxieties and old hurts stop me from living my life. It tells me if I’m tired — and it tells me that I’ve let myself get over-fatigued and ill-nourished.

It’s an objective measurement of how I’m doing psychologically and physically. And it gives me a great “excuse” (in my mind, when a simple reason won’t suffice) to step back and cut out all the shit I’ve got on my plate… focus in, take care of basics, talk over my issues with my therapist, and make sure I get plenty of rest. It tells me, loud and clear and in no uncertain terms, that I’m totally f’ed up, and I need to stop doing what I’ve been doing, and just take a break. Take care of myself. Have a long, hot shower. Take care of myself. Now.

Unless I do, I’m going to stay in pain. That’s just the way it is. And it’s my choice.

In a way, pain is my friend — but only because it’s my mortal enemy.