Moment by moment – on mindfulness and TBI

About a year ago, I had a conversation with a friend who was wondering aloud how I manage to get through life with the deficits I described to them. I had just finished telling them about my memory problems, my cognitive processing problems, my physical problems, the troubles I had when I was a kid… I didn’t hold back, but just let it all hang out. And when all was said and done, it was a lot to process, even for me (who’s been living with all that for as long as I can remember).

One of their first questions, when I’d finished, was how the hell I managed to get through life? How did I do it every day? How did I manage to make it through so many “regular” situations… not only adequately, but in fact better than many? For years, I’ve worked in high-stress, high-pressure environments that have one crisis after another. For decades, I’ve experienced job changes, moves from one part of the country to another, serious health problems that felled family members, deaths of close relatives, career insecurities, near-eviction… How did I manage to keep it all together, and actually look even more functional than others, who have not had brain injuries?

It sounded a little hokey when I said, it but the first words out of my mouth were, “Mindfulness. I just pay really, really close attention to each moment as it comes.”

At the time, I wasn’t sure that was really 100% accurate. And when I thought about it, over the coming weeks and months, I came up with a whole bunch of other ideas for how I get by:

  • mimicking others who seem to have it all together
  • being silent instead of speaking up and showing my limitations
  • hanging with good people who care about me and can help me
  • learning to ask for help in ways that don’t make me look stupid
  • learning to be stoic under any given situation, and then falling apart when I’m out of sight of others

The list goes on, of course, and the more I think about it, the more coping strategies I can come up with.

But once I got tired of thinking how else I manage to get by, I came back to my original thought, which was correct:

I get by in the world, head injuries and all, by paying really, really close attention to each moment, and living the very best that I can in that moment.

Throughout the course of each day, countless situations arise which enable me to learn more about myself and be true to that moment.

People approach me for help or input. I can choose to pay attention to them, really get what they’re saying to me, and respond to the best of my ability… Or I can pretend to listen to them, brush them off, and go back to what I was doing before.

People interact with me in stores and public places and at work. I can choose to be pleasant and polite to them, or I can be rude and impatient and make them sorry they ever met me.

Opportunities arise to make choices that will change the direction of my day. Will I dress up for work, or will I dress down? Will I take back roads to work, or will I take the freeway, or will I take the train? Will I slow down when the traffic light turns yellow, or will I speed up?

Every single choice I make through the course of each day has the potential to change my course in good ways or bad. And every action I take is both informed by my neurological profile and affects my personal relationship with my brain. It’s a two-way street. I have to both factor in the issues I have with my broken brain when I decide how to act… and deal with how my perception of myself alters, based on the outcomes of what I chose to do before.   If I neglect the former — e.g., don’t bother to remember that fatigue is a huge issue for me, and it’s impacting my ability to think and coordinate my movements — then the latter can suffer — e.g., I’ll get really down on myself for being dumb or dense or uncoordinated. Even though I know I’m somewhat impaired, I still get down on myself for doing/saying/choosing things that were better left alone. And that takes a toll… like water dripping on a rock and eventually eroding a virtual Grand Canyon through my self-esteem.

Mindfulness matters with me. Perhaps moreso with me than with other folks who are neurologically normal. Because if I want to live my life to the best of my ability, I don’t have a choice, but to force myself to be mindful. When I’m racing through my days, not paying attention to my limitations, not being mindful of where I am and what I’m doing, unfortunate things tend to happen. I rub people the wrong way. I say things I shouldn’t. I get pulled over by cops. I bump into hard/sharp objects and bruise myself. I get snarky with authority figures and alienate my supporters. I tend to end up in hot water, and then I feel just awful. I start to doubt myself. And when I doubt myself and my self-confidence takes a hit, I have a harder time just living my life later on.  Even the most basic activities can become a difficult chore, when my self-confidence has taken a hit… they’re hard enough, as it is, without the added burden of screwed-up self-confidence.

But when I slow down and focus on the present moment… When I’m totally involved — to the best of my ability — in what I’m doing, what someone is saying to me, what is happening around me… When I manage to block out everything else around me and focus wholly on what’s right there in front of me, magic happens. I become involved in my own life. I am able to see, feel, hear, and experience all-round the situation that has presented itself to me. When I can manage to stop the rest of the world from intruding, and I can slow down the action enough to devote my full attention to what’s going on in that moment, at that specific place in time, I can turn the full force of my abilities towards it, and be true to it.

Now, looking around at websites about mindfulness, I’m finding a lot of mystical stuff. Enlightenment stuff. Claims that mindfulness is the path to Buddha-hood. A cure for psychological ills. A cure for the soul. I don’t know about all that. I think that mindfulness is certainly a key part of becoming a fully conscious individual. But in my case, mindfulness isn’t something optional that I add to a personal spiritual practice for the sake of additional help. It’s a central and esential part of my day-to-day coping strategies, without which I’d be totally sunk. If enlightenment comes along with it, then great. But I’ll settle for basic functionality.

And that’s exactly what it offers me. Because when I’m not paying attention, when I’m not cognizant of the fact that I’m overly tired, when I’m ignoring the fact that I’m getting more and more agitated, bad things happen. I lose my cool. And when I lose my cool, I blow up. When I blow up, I say things I don’t want to be saying. I say things I don’t really mean. I break things. I throw things.  I flip. Trust me, it’s not pretty. And people close to me are occasionally afraid of me, which does not feel good. Ultimately, I start to close down, shut people out, stop communicating with them, start to get down on myself… and I slide down in that sinking spiral… sometimes into total and utter despair. The cost to myself and those around me is very high, when I’m not being mindful and paying attention to what’s going on with me.

But when I am paying attention and I’m aware of where I am and what’s going on with me, I can manage my limitations. I can see that I’m tired, and take a nap. I can see that I’m not following what someone is saying to me and either ask them to clarify or make a note (a real note on paper, ’cause I’ll forget mental notes). I can tell that my attention is wandering and bring myself back to the moment. I can see that I’m starting to lose my cool for no good reason and physically remove myself from the situation – walk away or even run, do something different, or just stop talking. I can prevent myself from going off the deep end and overreacting to what others are doing and saying. Just reminding myself that I’m  being “very TBI” at the moment chills me out. I can remind myself that my brain is misbehaving and I’m probably getting overwrought for no good reason. And I can stop the downward slide before it starts.

I cannot even begin to say how important this is. For myself, and for everyone around me. It means the difference between being a good partner and being a vexation (and sometimes a threat) to the ones I love. It means the difference between having a conversation and having a fight. It means the difference between finishing a thought and taking a definitive action, and getting mired in bogus details that keep me from going anywhere. It means the difference between being a TBI victim and a TBI survivor.

Mindfulness is not just an optional practice for me. It’s not something I can do now and then, when the spirit moves me or I’m in a meditation session. It’s something I absolutely positively must do all the time, in order to meet the most basic requirements in my life.

The beauty part is, because mindfulness is such a powerful practice outside of basic coping, it enables me to do the most basic things with tremendous focus and energy. Taking one small thing at a time, focusing fully on one moment at a time, allows me to use the full range of my abilities on that thing, in that moment.

And in so doing, my life becomes more than just a series of limitations to be dealt with. It becomes more than just a sequence of chores and tasks and obligations. It becomes more than work, work, and more work. My life — through mindfulness — becomes a form of worship. It becomes art.

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What I did right this past week, and what I did wrong

I just started my new job this past Monday — it’s pretty wild. The last job I had was relatively mellow, low-key, and it didn’t make a lot of demands on my cognitive/behavioral or technical skillsets. It was a great job to have, while trying to figure out what is up with me, get my bearings, develop some coping strategies, get a eagle-eye view on what my biggest issues are and how I can deal with them.

It was like working in a laboratory — a somewhat academic environment where results weren’t the biggest concern… just that you were looking busy.

Now the rubber hits the road. My working vacation is over. The easy-going, no-problem, whatever/whenever environment I was in for nine months is gone, baby, gone.

This new job is pretty intense. It’s in a very high-pressure sector, where the work is so very critical for so many reasons, organizational restructuring is a recurring phenomenon, business is down from where it was a couple of years ago, and everyone still has to perform at peak. All the time. No loosey-goosey leeway, here. It’s balls-out, full-on go-go-go all the time.

What was I thinking, going after this job? Am I nuts?! I hear myself echoing the sentiments of NEDream, who (if I remember correctly) has talked about feeling like they took on too much when they started a Masters program.

That’s how I’m feeling, right about now. The job changing process was just exhausting for me — lots of intense emotion, figuring out money and insurance and transportation… just trying to see if it even made sense for me to try it. It totally makes sense for me to give it my best shot. That much I know. But now I’m just fried after the first intense week on the job.

The best part of the job is that I’ve worked with these folks before and they know the quality of my work.

The worst part of the job is that I’ve worked with these folks before and they know the quality of my work.

Nobody there knows that I sustained a brain injury in 2004, that I flamed out in 2005 for very good reason (no, it wasn’t just the stress that drives so many veterans there off the deep end), and that each day has its own share of real struggles to get along.

I struggle with sustaining my attention — which makes learning all this new information very arduous.

I struggle with understanding what people are saying to me — which makes productive interactions more difficult.

I struggle with keeping my cool — which makes me nervous. Very nervous indeed.

I struggle with fatigue — when I get too tired, I’m unable to rest and relax, which is a real problem.

This is not all bad. In fact, it’s good. It’s good that I’m aware of this, that I’m consciously tracking it, that I know these things — and more — are real problems that can derail me. If I know about it all, I can do something about it. And there I’m much more ahead of the game than I was, even a year ago.

The main thing that got in my way, before I fully realized the impact these head injuries have had on me, was not knowing there was something wrong. Once I got that piece of the puzzle, I was able to start rehabbing myself. Which is what I’ve got to do. Because if I go public with my condition, my job will be in jeopardy, my livelihood will be threatened, and I could lose my house, my home, my dignity… everything that matters to me and I’m not willing to lose.

This is a new chapter with me — a time of aggressively and actively managing my limitations, so that I can get on with my life and restore the things I’ve lost. Some of what’s gone isn’t coming back. I may not be able to rehab myself all across the board. But dammit, I’m going to do my utmost to compensate for what I can’t fix, and do what I can to avoid disaster if there’s something that can’t be fixed and can’t be compensated for.

So, that being said, what did I do right last week, and what did I do wrong, and how can I do better next week?

Let’s start with the bad news, first…

What I did Wrong

  • I started to freak out. I got completely overwhelmed a couple of times with everything that was going on around me. I could feel panic welling up in me — What was I thinking, taking on this new job?! I’m impaired in some significant ways, and I have no business doing this type of work again. Didn’t I learn my lesson before?! I almost got taken over by it a couple of times. Fortunately, I was able to pull back from the brink — mainly by focusing on how fortunate I am in these times of radical change and locking my attention on being intensely grateful for the votes of confidence from my new co-workers.
  • I drove to work on my first day. I made the mistake of taking one of the main routes into town on Monday morning, and I ended up spending nearly 2 hours in traffic — each way. It was just insane. I barely made it to the office on my first day by 9:00 a.m. If I’d taken the train, I could have been there by 8:30 and not rushed myself. Only after I’d been fried by the morning commute, did I learn my lesson.
  • I got way too tired. I am so exhausted, right now… I’m really feeling the burn of the commute and the new situation and the pressure, so I’m having a hard time settling down and chilling. I feel so intensely driven — to prove myself, to do the best that I can, to not get dragged down by my brain, to be a responsible team member, to contribute. I still have to figure out my daily/weekly schedule, and I need to develop stress management techniques and ways to get to bed earlier. I am just so tired… I know it’s going to take me a while to adjust and get back to where I can rest again, but I’ll get there.
  • I started to slide back into negativity. By the end of the week, I’d been through a couple of fire drills and emotionally charged meetings, and I started to get an attitude towards the end of Thursday. I so totally cannot afford to do that. In the past, I’ve slipped into it all too easily. When I was a kid, struggling with TBI difficulties, I was prone to be very negative and angry and bitter. I can’t afford to do that now. I must keep positive, and I cannot allow myself the luxury of negativity.
  • I lost track of what I was supposed to do. In all fairness, I was pretty overwhelmed, apprehensive, fatigued, and turned around, so it’s logical that I would forget to do my banking and do some things backwards — like spend money in an account before I moved enough money into it to have a really wide margin of safety. I’m in the black, and I’m not in danger of overdrawing my accounts, but I still need to do things in the right order — move a couple hundred dollars to a new location in time to pay my monthly oil bill — so I have a margin of comfort and don’t add more stress to my situation.

What I did Right

  • I paced myself. I didn’t constantly fly into all my new tasks like some cowboy, running willy-nilly all over the place, trying to prove how together I was. I did catch myself going there a few times, but I was able to stop myself before I went overboard. I made lists of the things I needed to get done — get my computer up and running, change the configuration, talk to certain people, reconnect with old friends and co-workers, and get the lay of the land, politically speaking.
  • I took the train the rest of the week. I learned my lesson about that morning commute. After Monday, I took the train. I drive 20 minutes to the closest stop, and the train drops me literally next door to the building where I work. I can’t go wrong, there. I also bought myself a multi-ride ticket, so I won’t have to keep coming up with a fistful of dollars on each ride.
  • I took time off and took naps when I could. Part of the reason I took this job is that I can telecommute as much as I like. My boss literally told me they don’t care where I am, so long as I’m getting my work done. I had two days at home, last week — one of them Good Friday, which was a holiday, that I worked, anyway. I took one nap on the day I was home earlier in the week, and I took two naps on Friday. I’m really feeling the burn of the commute and the new situation and the pressure, so it’s going to take me a while to adjust and get back to where I can rest again, but I’ll get there.
  • I got some audio help. I listened to Belleruth Naparstek’s Stress Hardiness Optimization CD before one of my naps yesterday, to help me better manage my stress and acclimate myself to it. This CD has guided imagery and affirmations to help people in high stress situations get in touch with their physical condition, manage their stress levels, and train themselves to relax and get to sleep. I had gotten the CD a couple of years ago, and had listened to it periodically when I first got it, but now it’s even more important than ever. Plus, I downloaded The Destress Kit from the Institute of Heart Math. There’s audio and a PDF that come with it, and it’s free of charge, which is helpful in these challenging times. The audio is basically a read of the PDF — whichever way you like to “consume information”, by listening or by reading, you can get the important ideas a couple of ways. I’ve give the audio a quick listen, and it has some helpful info in it. I’ll have to listen again when I’m at work.
  • I reached out for help. I was getting all turned around on Thursday afternoon, starting to feel overwhelmed and overwrought, and my team were all workggn remotely, so I started to spiral downwards. I gave a buddy of mine a call and we had coffee, while I just talked through my thoughts about the job I’m supposed to be doing. It was really good to do — and it saved my ass bigtime. Plus, my buddy — whom I had actually trained, back about 12 years ago, when we were working together really, really closely — got to contribute their own insights and wisdom after years on the job. It had a nice symmetry to it, and I’ll definitely keep that connection going. It’s an important one.
  • I made lists and planned ahead. I have been more actively keeping my daily minder, making notes of what I need to do and following up with the really important stuff. I’ve also just sat down and thought through things that are really important for me to do — like finishing my taxes and getting my hair cut and buying some supplies to help me not eat and drink junk that fries my system. I can quickly reach for crap that’s full of sugar and salt and MSG and other preservatives that gunk up my system. I really can’t afford to go there. Not on this job. My success depends entirely on my peak performance, so I have to take care of myself.
  • I learned and learned and learned some more. The new job I have has a lot of custom coding involved in it. There are some fundamental skillsets I have to have, there are some advanced skillsets I have to have, and on top of that, I have to learn the ins and outs of these custom components we’re building. Talk about freaking out… It’s a whole new ballgame, totally different from what I’ve been doing for the past couple of years — much higher-level stuff. I figured I have two choices — I can either flip out, freeze, and choke… or I can dig in and learn, learn, learn some more, till I’m comfortable enough with the material to really start contributing. I just hate this feeling of being “behind” — I know it’s normal for starting a new job, even if I’ve worked with these folks before, but I hate the feeling of being a newbie. So, I’m doing something about it.

All in all, it was a highly successful first week.

I didn’t freak out and lose it on the people I live with.

I didn’t blow up at people I work with.

I didn’t piss anyone off.

I got to work when I needed to and made some good headway.

I managed to fit a few naps in.

I’m still standing. A bit fried and still rather befuddled and off-kilter, but I’m still here.

That’s the most right thing of all.

So, what’s “normal” after TBI?

I’ve been giving some thought to M’s comments about what folks might want to know about TBI, and I figured I would start with the “normal” question.

It’s truly hard to say, what is and is not “normal”…  but my experience was that I was doing and saying a lot of cranky, precipitous things that pissed people off and alienated them and gave them the wrong impression of what was going on inside my head… all the while without having a clue that the problem was with me.

As I understand it, when the brain is injured, it starts to mis-fire. The connections that were there before can be severed or frayed, so the usual ways that energy and ideas get from one part of the brain to the next just aren’t there. And the brain has to find another way of doing it.

It’s like when the Loma Prieta earthquake hit the San Francisco area, back in 1989. Someone I once worked with who lived through that said that their drive home from work usually took them 45 minutes — 20 minutes if there was no traffic. But after the earthquake, with all the roads closed and impassable and extra traffic with people panicked, it took them 3-4 hours to get home. And when they got there, they were exhausted… and all their dishes were lying smashed on their kitchen floor.

That’s a bit like it is when you’ve had a TBI. All the usual ways of thoughts getting from point A to point B are mucked up… and there’s this traffic jam of concepts and energy and ideas and impulses that are all glommed up in the process. By the time your brain figures out how to get where it’s going, you’re just plain wiped out. And there’s sometimes a big mess all around you, too.

That being said, “normal” after TBI can be:

  • feeling exhausted
  • feeling dull and dense
  • having a very short fuse and blowing up at a moment’s notice
  • having a headache
  • being dizzy
  • having trouble hearing
  • having trouble seeing
  • having trouble sleeping
  • having trouble waking up
  • being easily distracted
  • having trouble concentrating
  • not being able to understand what people are saying to you
  • not being able to do things you always did as easily as you used to do them
  • becoming confused over “simple” things for no reason that you can tell
  • feeling like everyone is out to get you

All of this is made worse by fatigue. Without question. The brain needs extra rest to recover and rebuilt its pathways, and if you’re tired and your energy is all taken up with trying to keep up with your life, that doesn’t help your head any.

You basically have to just get lots of rest, take it easy, and be very, very patient with yourself.

And get used to redefining “normal”. Forget how things used to be. Get used to how things are now. Let the old stuff go, and come up with a new set of measurements for what’s “normal” in your life.

It’s not very easy, at times, but it is what it is.

Getting to Sleep… a meditation of sorts

I have a lot of trouble getting to sleep, some nights. A lot of nights, in fact. I have trouble relaxing, and once I am in bed, I have a hard time turning off my head and relaxing my body. Here is a kind of “meditation” I use to relax myself, stimulate my rest-and-recuperate parasympathetic nervous system, and eventually get to sleep. It incorporates pieces from guided imagery I listen to, techniques I’ve learned over the years, and elements of neuroscience.

Try it… you might like it.

First, lie down flat on your back in bed. Make sure your head and neck and spine are all aligned and well-supported by the bed beneath you. Shift your body a little bit, so that you release some tension and are better able to let your body rest fully on the bed beneath you.

Now, feel your body from head to toe. Feel how tense it is in places… Imagine that you are encased in a hard shell of tension…

Now, taking a deep breath, imagine that you are sending a deep breath down into your feet, into the very tips of your toes… As you inhale, imagine your skin is like a balloon, and your breath is expanding it around your toes and feet, inflating the “balloon” of your body…

Imagine the pressure of your expanding shell cracking the hard “case” of tension that’s surrounding you. When you have inhaled fully (and comfortably), hold your breath for just a split second and feel the little crackles of broken-up stress float free in the breath “in” your feet.

Now, exhale slowly and comfortably. As you do, imagine the little crackles of stress being carried out of your body on your breath. Exhale fully and comfortably, and when you are done, rest for just a split second before inhaling again.

Feel how relaxed your feet are, from your toes through the arches of your feet, up to the tops of your feet. Feel how relaxed your muscles are… how warm and soft and comfortable they are…

As you inhale the next time, send your breath down into your ankles, and “inflate” the “balloon” of your body around your ankles. Feel the warm breath warming your feet and ankles, and feel the rigid tension of your body breaking up into little pieces…

As you exhale again, slowly and easily, imagine the little free-floating pieces of tension being carried out of your body by your breath…

Feel how relaxed and comfortable your ankles are… Feel how warm and soft they are… almost as though they are falling into a sound, peaceful sleep…

Now, take another long, slow, deep breath, easily sending the breath down your legs to your shins, where they “inflate” the tough shell of tension around your lower legs. Feel the breath expanding the space around your calves, your shins… crackling the tension into tiny little pieces, so it can be carried out of your body…

As you exhale, feel the breath carrying the tension far, far away from you, leaving only warmth and relaxation behind it…

Keep moving up your body, “breathing into” the different hard places that are surrounded by a shell of tension, and letting the out-breath carry away those little broken-up pieces. Work your way up your body, from feet to legs to torso to arms, to shoulders, to head. Take your time and breathe deeply and comfortably. After each out-breath, let the parts of you that you breathed into relax fully and fall into sleep. Don’t worry about going to sleep yourself, just let your body relax and let all the tension fall away… It’s all good.

I have been doing this meditation a lot, lately, and on a good night, I can get to sleep before I’ve gotten past my thighs. The progressive relaxation helps me let go of the tension, and the deep breathing helps to stimulate my vagus nerve and the parasympathetic nervous system in general. Focusing on my breathing and my body keeps my mind from being driven to distraction when I’m trying to sleep. And just lying still and letting my body sink into the bed makes it possible for me to just… let… go… which is oh, so hard for me to do under waking conditions. Also, I have read that 15 minutes of conscious relaxation — not sitting around doing nothing, but actual relaxation, is like taking a 30-minute nap.  So, even if I/you don’t fall asleep right away, at least the body is getting some benefit from the experience.

I hope you find this helpful as you try to get to sleep.

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.

Yes, I do have problems with getting mired in details…

From March, 2009 – I may have never actually published this…

I’ve been meaning to finish up my writing on “A Perilous Relief“, which is about how I use stress to relieve certain kinds of distress in my life, and how that works against me.

But then I got caught up in thinking about how TBI and PTSD intersect and feed each other. And then I got caught up in thinking about Tetris and how it might help relieve PTSD flashbacks. And then I got caught up in thinking about Natasha Richardson. And then I got caught up in thinking about my job situation. And then…

All of these are very interesting things to think about, and some of them (like job stuff) are quite valuable, if not essential. But in the process of researching the different pieces of these puzzles, I went down a bunch of rabbit holes.

What's been keeping me busy for the past while
What’s been keeping me busy for the past weeks and months

And the paths that used to be pretty straightforward and simple, have now gotten tangled and twisty and have intersected with other paths, so I’ve been wandering around this veritable “rabbit warren” of interests and — let’s face it — distractions.

It’s all very important to me, of course, but these different ideas have been competing for time and attention, and there’s really only so much I can do in any given day. I need to keep my household running, I need to do my taxes, I need to keep current at work, and I need to make sure I’m getting enough sleep each night and I’m eating well.

I need to square away some very basic needs which are not nearly as dramatic and entertaining as exploring my MRI in 3D, but which are essential to my daily functioning. And those things are getting lost in the shuffle. Kind of like “A Perilous Relief” has gotten back-burnered numerous times, since I started working on it a few months back. I know I need to mind my sleeping patterns. I know I need to take my vitamins regularly. I know I need to cut out munching on junk food at 3 p.m. each day (it’s making my tongue break out, in addition to making me feel bad generally). I know I need to help with cooking and cleaning and shopping and yard work. But I get so caught up in other things that I overlook them and don’t tend to them. And things start to fall apart around me.

Which isn’t so bad, when you’re cognitively fully-abled. But when you’ve got cognitive deficits and you’re susceptible to paralyzing anxiety and overwhelm, something as simple as a messy desk can throw off your entire day. And not being able to find papers I need in the construction disaster area of my office sends me into a tailspin that triggers my hot temper and makes me miserable to live with.

I really do need to tend to the basics. But I hate having to tend to the basics. I’ve never been good at it, and I feel it’s terribly unfair of the universe to force me to pay attention to that kind of stuff. For most of my life, I’ve been able to function well in the midst of mess and chaos. No more. Not in the past few years, since my fall in 2004.

I think this is probably the most frustrating part of TBI — not being able to take for granted the things I always did before. Like sleeping through the night. Like keeping my cool in tough situations. Like remembering whether or not I shampooed my hair in the shower, five minutes ago. Like understanding and remembering what was just said to me. I have to expend so much friggin’ energy just keeping up with stuff that everybody else seems to have no problem with — and the everybody else assumes I can do just fine — that it gets depressing, and I lose interest in it pretty quickly. It’s tough to sustain invested interest in stuff that you keep getting wrong, over and over and over again, till you spend much of your time demoralized over the littlest things. There’s only so much failure at fundamentals I can take, before I back away from my problems and avoid them entirely.

So, I end up neglecting things I should take care of — like my sleep schedule. Like my temper. Like my personal hygiene. Like asking for clarification while I’m talking to someone about something important. Granted, I’m not an exhausted, explosive, unkept, smelly one-sided conversationalist. But I could go there all too easily, if I didn’t keep track of where I’m at… and if I didn’t realize that I have these (and many other) issues.

When I slow down long enough to examine my life, I can see plain as day that all is not 100% perfecto in my life. I have many areas where I need help, and I get that. Finally, I get that. Having my neuropsych evaluation turn up hard data about me being really distractable, having a hard time with sustained attention, being prone to missing important pieces of information that are said to me, and having a Swiss cheese working memory that drops information (literally) in the space of a few seconds, has brought it home, loud and clear, that I can’t do this all by myself.  I am in fact impaired. I need help, God help me.

So, I’m now starting to find folks to help me with those things. My neuropsychologist has started to help already. And my new therapist, who has a neuropsychological background, has already helped with some communication issues. I’m also getting to a point where I’ll reach out to a speech pathologist to help me with my verbal comprehension and processing. It’s all coming together. With the help of others.

But for now, I need to tend to basics… finish my breakfast, take my shower (and shampoo my hair), dress for work, and go earn my pay. It’s not the most exciting prospect in the world, but it’s all got to get done.

PTST – Post-Traumatic Stress Tetris

This has not been an easy few weeks. I tend to make light of my difficulties, and try to not get all mired in them, but between my job stress, money problems, social issues, and the resurgence of some pretty intense pain that just won’t quit, it hasn’t been a walk in the park.

I don’t want sympathy, but I do need to say it out loud, so I don’t keep denying the impact it’s having on me.

I think that Natasha Richardson’s fatal accident also threw me for a loop. There’s part of me that doesn’t understand why I could have so many bad falls and survive, while she didn’t have as rough a tumble (from what I read), yet she’s gone. On the one hand, I’m so very grateful to still be here. On the other, I am feeling some survivor’s guilt that is buried very deep and is taking a while to get to the surface.

On top of this, I’ve been dredging up some rough old “stuff” that happened to me 25 years ago that was pretty bad. Basically, I got my wires crossed with the wrong person — I wasn’t reading their social cues very well, and it turned ugly, and that person was not only an active addict and alcoholic, but they were overly aggressive, as well. So, I got my ass kicked. More than once.

It left me not only physically injured, but it set me back pretty intensely in other ways. I couldn’t figure out what I’d done wrong, I couldn’t figure out why it had happened, and I ended up isolating and acting out in un-helpful ways, and generally going downhill and ending up with some nasty post-traumatic stress.

Now I’m dealing with it in therapy, and it’s not pretty. I couldn’t have picked a worse time to deal with this, considering everything that’s going on with my job and health and bank accout. But there’s never a good time to deal with this crap, so what-evah. Fine. I’ll deal with this, too.

I’ve not been sleeping well, and I’ve been having flashbacks. Unpleasant stuff. Trying to navigate all this is bad enough, but my TBI situation isn’t helping. I’m pretty much at an impasse with what to do.

One thing that has helped me with my flashbacks, playing Tetris at http://www.gosu.pl/tetris/.

I don’t know what it is about the game, but I’ve been playing it, on and off over the past couple of weeks, and it actually seems to be helping me with flashbacks. Something about the movement and the colors and how emotionally neutral the shapes are, is very soothing.

I had read something about it helping with ptsd flash backs — and why it may work. I’ll have to dig that up and write about it. It’s pretty interesting, I think.

But for now, I’ve got to get going to work and see what the day ahead of me brings.

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…

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.

Finally got eight hours of sleep…

Okay, so I succumbed. I took something last night to let me sleep through the night. I am not a big fan of sleeping pills, but Benadryl allergy and sinus does it for me. I did wake up once overnight, but I was able to get back to sleep, which is huge for me.

I also got a three-hour nap in, yesterday, which is no small matter.

I get to the point, sometimes, where I’m so tired I literally cannot rest. My nerves are all a-jangle, and I wake up with my heart pounding so hard I feel like it’s going to jump out of my chest.

It helps, if I listen to Belleruth Naparstek’s “Stress Hardiness Optimization” CD — the last two cuts on the CD for relaxation and restful sleep. I put on my headphones, set the volume fairly low, and let myself just listen and relax… and I usually can get to sleep.

Unless I’m over-tired, which I’ve been for a few weeks, now.

This morning, my mouth tastes funky with that after-Benadryl chemical taste. And I’m still a little out of it. But I slept till 7:00 this morning, which is a real change form the past couple of weeks of waking up at 3:30… 4:30… 5:00 and not being able to get back to sleep.

I’ll try again tonight to sleep without some help, but if it comes down to it, I may take something again.

All I know is, I need to sleep.