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.

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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.

TBI Benefit #27 – An increased refund from the IRS

I got a surprising letter today – actually it came yesterday, but I was napping and resting most of the day, so someone in my household brought the mail in, opened it up, and left it for me on the kitchen counter. Lo and behold, the refund I’d calculated for my 2007 taxes (I filed for an extension and did an estimate, which was conservative — I took all the deductions I could legally take, according to TurboTax, and along the way, when I found some other deductions I was pretty sure I could take, but wasn’t 100% certain, I just didn’t include them. Now the IRS is telling me that they owe me a bigger refund — probably by a couple hundred dollars, since I don’t have my tax returns in front of me.

You don’t hear that every day!

My strategy of claiming less deductions than I suspected I was owed paid off… for now. I actually found some other earnings that I’d completely missed when I filed my estimated taxes, so my refund may actually be lower, but the habit of being more conservative and less hasty worked out for me. Playing it safe, with the understanding that I could be completely wrong in my math, soothes me and gives me something to fall back on. In any case, my thinking about things tends to get fuzzy and I tend to lose my train of thought, so I don’t dwell too intensely on tax anxiety.

I guess my attitude towards taxes is very different from most folks’ — I believe in paying them and paying my fair share. Yes, there are a lot of places my tax monies go that I don’t agree with, but all in all, the tax burden here is far less than in many European countries, PLUS I get a whole lot more freedom here, than anywhere else, so I figure it all evens out. I pay my way. TBI or no, I pay my way.

I like my roads paved and plowed. I like having elected officials. I like the fact that children of poor people have access to milk and cheese and other WIC resources. I’m not one to judge others for “gaming the system” — too many people do it in too many ways for me to get started on that, and it just confuses me. Our governmental system, say what you will, makes it possible for us to live in an amazing country that people are literally dying to get into.

Yes, I pay my taxes.

Paying taxes for me, is actually an important symbolic thing. Sure, I slip up sometimes and have to file for extensions. And sometimes I’ve messed up and even missed the extension deadline. But I do pay up, because being able to participate and contribute to this country is not something I take for granted. I’m a very different person from most folks, and my abilities are varied and my disabilities are often hidden, so the times when I can participate as a “normal” person… pitch in and help out… do my fair share… help make a difference, in however small a way… well, I take that opportunity.

I think a lot of “neurotypical” people take things for granted that mean so much to so many of us who are on the margins — by chance, trick of fate, or horrible accident. I think people tend to take for granted the ability to go out and get a job, the ability to participate in casual conversations, the ability to meet other people and be active in their communities. I think that a lot of regular people just assume that things are done a certain way — you get up in the morning, shower, dress, go off to work, put in your hours, then come home, pay some bills, watch some television, and go to bed… and do it all again, the next day. On the weekends, there are sports games and activities… movies and get-togethers… travel and leisure pastimes that many, many other people are doing… take the boat out on the lake… go skiing or surfing or skateboarding or sailing or hiking or play a ballgame of some kind.

But for someone like me with a history of tbi’s, none of those things are foregone conclusions, and they rarely go as smoothly as regular think they do (or should).

Getting up in the morning can be a challenge, as I’m rarely fully rested, and I tend to wake up either too early (most of the time), or too late. Showering can be a complicated thing, as I often can’t keep track if I’ve soaped up and rinsed off, shampooed my hair, or how long I’ve been under the water. And my lightheadedness and vertigo can make just standing in the shower a really nerve-wracking exercise.

Dressing for work can set me off, because I tend to forget what I’ve worn earlier in the week, and unless I have my clothing all lined up in chronological order, I can easily end up wearing the same thing twice in two days. Plus, if I’m really out of it, with vertigo or sensory issues, I can walk around for most of the morning with my shirt buttoned all wrong or my fly open. (I once went through a whole animated job interview, standing at a whiteboard, sketching out possible solutions to problems posed to me… with my fly open… which is NOT the kind of impression I wanted to make! I still got the job, but jeez, how embarrassing!)

Going to work has its own share of hazards, as bright sunlight is hard for me to handle, and even with sunglasses on, the shifting contrasts of light and shadows play tricks on my eyes. And when I’m tired, there’s always the hazard of road rage… or misjudging a situation. One morning, not long ago, when I was tired and angry while driving to work, I almost ran in to someone who wasn’t obeying the right-of-way rules — just because I refused (on principle) to budge. They were driving right into my path, but I had the right of way, so I motored on like a bull-headed idiot, and I almost got hit — just because “I was in the right” and they weren’t following the rules. On principle, I was correct and I had every right to drive through. But principle won’t pay for car repairs, and I only have one car I can reliably drive to work, so “standing my ground” was a really dumb thing to do. Plus, thinking back, if they had hit me, considering the place that I was in, that morning, I probably would have gotten in a fist fight with them, and I might very well have been arrested.  I was in a really bad place, and I consider myself (and the other person) to have been literally spared by divine grace. If it were up to me, I would have landed in really hot water!

At work, depending on my state of mind and body, I can either have good days or bad days. But it often takes a lot of effort for me to function at a “normal” level. Nobody I work with knows I’ve had TBI’s, and I’m not about to tell them. I hold my own and I do my piece, but it’s a real chore sometimes, just to get going. I have massive issues with initiating, with concentrating, with following through. I have huge interpersonal issues that I do a pretty good job of keeping quiet about — things like rage and hostility and anger and mood swings. On the surface, I try to stay impassive, but under the surface, it’s often a seething swirl of confusion and mixed emotions that are as high as they are varied.

Heading home in the evening, after a long day, I just try to listen to the radio and keep chilled out. I have to work harder at paying attention to traffic when I’m headed home, so that keeps my mind off interpersonal aggressions and whatnot.

At home in the evenings, I’m just so wiped out, so often, I can’t even look at anything that needs to be handled. I’m so exhausted… it’s all I can do, to eat supper and flop down in front of a movie. Now and then, I’ll manage to do things I’m supposed to do, but they often get pushed off till the weekends.

I have to say, in th past, I tended to just push through and not give myself a break and just ignore the fact that I was exhausted all the time. I didn’t pay any attention to myself, and I didn’t take care of myself. I didn’t like the fact that I was tired all the time, so I refused to admit it, and I just pushed through with doing whatever I felt needed to be done.

That was fine for my productivity, but the net result was that I was an impossible person to live with. I was unresponsive, most of the time, moody and volatile to the people closest to me, non-communicative and prone to temper outbursts and meltdowns, and the kind of person whose intense volatility made everyone around me walk on eggshells all day. Yes, I appeared to be productive. Yes, I was getting things done. But I was just a machine — a shell of a person whose only solace was that I was making good money and keeping up appearances. Inside, though, I was wracked with pain and sorrow and exhaustion and hurt and anger and rage and confusion.

Now, I think know I’m much better off. I’m less “productive,” and it takes me forever to get things done or process ideas and conversation, but I’m now communicating with the people who live with me far more than I did in decades… I’m now sleeping more and taking care of myself better than I ever did… and I’m actually aware of what’s going on around me, which is more than I can say for the person I was, just three years ago.

Weekends… well, I won’t even go into them. Mine are very low-key, for the most part, and I do so poorly with crowds and frenetic activity, most popular activities (like the ones I mentioned above) do NOT appeal to me. I spend most of my time gearing up to do basic things – like take the trash to the dump or go food shopping or go to the library or clean something. I spend a lot of time spacing out and not doing much of anything. And by the time Sunday night comes around, I often feel pretty deficient about not having gotten much done.

Daily life for someone with a TBI is often far from simple, and it’s often anything but straightforward. Sometimes it takes a monumental effort, to just approximate “normal.” I accept that as part of my life… just something I need to deal with… and I try not to dwell on it too much, lest it demoralize me and hold me back.

Given all the “normal” things that tend to be so complicated and difficult for me, if there’s something relatively simple and straightforward I can do to participate and contribute to the common good — like pay taxes — I’ll gladly do it.

It’s a small price to pay to be part of something as amazing as the United States of America.

Impulse Control 101

In the past months, I’ve noticed a pattern of behavior that I never really thought about before –my tendency to check out library books en masse when I’m getting over-tired, fatigued, and overwhelmed.

I also tend to start projects, just because they seem interesting to me in the moment and they get my  mind off my troubles… not because I actually plan to follow through and complete them.

I first noticed this for real, in February of this year. From my self-assessment form I filled on on February 6, 2008, I wrote:

I’m drawn to library books, and impulsively check them out, loading up on lots of them. I also impulsively start on a lot of research projects and other projects.

The intensity of my desire to check out lots of library books or start projects was about 3/10 that day, and the impact of it was 7/10, because while the intensity wasn’t that great, it still was very disruptive to my regular life.

From my sheet:

I went to the library today, but I just looked through some of them, rather than checking them out. I returned a book I wasn’t reading. I also sat down and looked at what projects I can realistically complete, and which ones are just interesting/compelling to me at this time.

I managed to get rid of a book, rather than bringing in more.

Now, it might not seem like a huge deal, but this was a big revelation for me. Here, all this time, I had been thinking that I was studying and doing things that would ultimately bear fruit and enrich my life, but it was really just to distract myself and soothe my intense emotions that were coming up because I was fatigued, and I was too tired to realized that I was fatigued.

This is one of the issues of self-awareness that I often face — I won’t realize till later that what I’m doing is not really productive, and I’m actually doing it for a very different reason than what I tell myself.

Discovering this has, since last February, made it possible for me to not only identify the things that I am really interested in doing, because they are important, but also to pace myself and not drive myself so frantically, just because I’m fatigued, and I don’t know it.

Well, as long as no one is getting hurt, checking out library books isn’t the worst way to deal with my stress. But a long nap would be more constructive.

Speaking of which, I am tired. Time for my nap.

TBI Symptom of the Day – Such trouble sleeping!

I had another rough night, two nights ago. Probably had something to do with my visit to the doctor, but then again, I haven’t been sleeping all that well, lately, anyway.

I was up at 2:00 a.m., drenched in sweat — I’m having a hard time moderating my body temperature, these days, as the seasons change. I’m either too warm or too cold, and when I get too hot, I sweat like crazy, when then soaks my pajamas and then I get chilled.

It’s just not good.

I tried listening to my guided imagery CD that’s meant to help me sleep, but it wasn’t working. I considered taking a shower to get all the sweat off me (sometimes the odor of my perspiration keeps me awake).. but then I opted for just changing my t-shirt and changing bedrooms.

The guest bedroom in the back of the house is quieter and smaller, and it feels sheltered. It doesn’t have much furniture in it; it’s pretty bare-bones, in fact. And it’s where we keep our extra stuff, like dirty laundry, shelves I have not taken out of the box and hung, yet, odd luggage that we can’t fit anywhere else, and a half-working multi-function fax-scanner-printer that bought the farm many years ago, but doubles as our outgoing fax machine (which we need surprisingly often). But the room has a nice feel to it, and it’s like a sanctuary to me when I’m not feeling well. It’s also where I take afternoon naps on the weekends, sometimes. It’s a nice room, the humble features notwithstanding.

I pulled a nice heavy quilt out of the closet, spread it across the bed, got my pillow, and climbed in. There’s something about making a “cave” out of my covers that makes me feel safer and more comfortable. I think the difference in the temperature in the room — my usual bedroom tends to be hot, and I’ve had the humidifier running to help avoid sinus issues — and the quiet in the back of the house really helped. Plus, it was a change of pace for me. I usually only sleep in the back guest room if I’m sick and I need to keep away from everyone.

I guess that wee hour of the morning was one of those times. Because I was sick. Tired and overtaxed and worried about my health and wondering if/when this TBI business is ever going to let up on me, and give me a break.

It could be that it never does. It could be, I have to keep dealing with the fallout — emotional, social, interpersonal, logistical, professional — all my live-long days. That probably will be the case. But on days like today, when I’m just so tired and I’m so fed up with having to navigate the world with different and/or diminished resources, I start to lose faith in my ability to cope.

I can cope, of course. I always have and I always will. I wouldn’t have gotten this far in life, with all those head traumas and all those tough experiences with family and friends and jobs and just daily living, if I didn’t have it in me to cope. I’ve been coping since I was seven years old, which means I’ve been at this for 36 years. But on days like today, when I’m tired and feeling like I’m falling behind in everything and I don’t know how I’m going to keep up, I start to lose faith.

Until I find something really great to perk me up. Like the fact that the speed of my broadband connection has improved exponentially, far beyond what I ever dreamed possible from my ISP, and I’m on good terms with my co-workers who also enjoy my company (when I’m absorbed in thoughts that perk me up, of course).

I think that if anything has spared me, in the years after my various TBI’s, it’s my continued sense of … well, adventure. And my tenacity. There’s a joke that with Alzheimer’s you get to meet new people every day, which (even by my fringe standards) is twisted and callous. But in a way, that’s how I feel about my own neurological issues. There is literally never a boring moment. If I approach each new situation with a sense of curiosity, even wonder, and I don’t get too hung up on the fact that I tend to screw up royally the first couple of times I try things… and I keep my sense of humor… and I just hang in there and keep trying, till I get it right… well, then, nothing is too terribly big for me to tackle (within reason, of course — let’s not go hog wild and get our hearts set on space travel or paying off the mortgages of every duped homeowner in America).

Some days, of course, I despair. I mean, it just really sucks when your brain doesn’t function the way you’d like it to — and everybody expects it to. It really sucks, when your own doctor backs away from you in alarm because they’ve discovered their assumptions about how well you can cope in the world are dead wrong. It sucks when your loved ones cannot deal with your temper, your memory issues, your mood swings, your difficulties remembering where to look for the note that’s supposed to tell you what to do today… And it really sucks, when you’re not sure who your friends really are…. and you don’t know if you have it in you to try to find out for sure.

But on the whole, I’m just so stubborn and hard-headed and too in love with life, to just give up and quit the game. Or even sit on the bench. I’m a viable, lively human being with a big heart and a lot to offer and a whole lot of life experience that others might find useful. Why should I live any less of a life than other people who haven’t gotten hit on the head and knocked around? Why should my injuries disqualify me form living my life to the fullest? They shouldn’t!

So long as I get enough sleep. Having enough rest is of paramount importance to me. If I haven’t slept, I can go off the deep end really quickly and start to make life miserable for everyone arund me. It’s the short temper, the extreme (someetimes violent) mood swings, the yelling, the tears, the inability to concentrate, the lapses in my memory over things that should be so simple… It’s all of it… it’s the almost childlike dependency that makes people wonder who I am, really… the reluctance to go out and be social, for fear that my tiredness will wear on me and make me edgy and gruff and put people off, and make me say things I regret and don’t really want to say. It’s the anxiety about any sort of social interaction — even with friends — that isolates me and ties me up in knots, since I don’t really have anyone I can just shoot the breeze with and bounce ideas off of. It’s the anxiety about people I know finding out about my tbi, when they had no idea before, and treating me differnetly, even though they’ve known me even in my most troubled times when my symptoms were really playing havoc with my head and behavior.

When I haven’t slept, I have trouble doing the most basic things — like remembering to zipper my fly. Like remembering to turn on my headlights when I pull out of the driveway. Like remembering a very important task I have been meaning to do. Like being able to understand people when I talk to them on the phone.

It seems like such a basic thing. How could sleep deprivation cause these issues? How could something so simple make my life so hard?

I’m not sure. But it does.

So, this weekend, with the support of my family (who are growing tired of dealing with a tired version of me), I will rest. Sleep. Take it easy. Read a good book. Write a little Draw a little. Just chill out. Take long hours to listen to my guided imagery CDs that I’ve been meaning to listen to. Spend some time doing some self-assessment and looking back over my past week to see what the pain points were. Tomorrow I’m taking time for myself, which is a rare, rare thing. And I’m going to catch up on my sleep, if it’s the last thing I do.

Nothing else matters, at this point. My priorities are clear.


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Ruminations of a high-fuctioning mtbi survivor

Okay, so this post is purely self-serving, in that I need to remind myself that I am indeed a high-functioning mild traumatic brain injury survivor, who has managed to build a pretty incredible life for myself and my family, despite my injuries at age 7-8 and three years ago at age 39.

I’m in the job market again, and I’m looking at my job prospecting with a whole new eye — keeping tabs on my stressors and trying to navigate the world of recruiters and headhunters, who are all so incredibly DRIVEN and don’t give themselves, let alone me, a chance to breathe. Take a deep breath, folks. Honestly…

I’ve been talking to headhunters, on and off, for a few days, and they’re starting to make me crazy. All that go-go-go stuff and the constant pressure to schedule something with them… to make it happen… make it happen! Can-do shit and all that. I have to admit, I’m a bit tired of all that pushy crap, and it’s making me antsy and short-tempered. I actually snapped at a headhunter today who was just pushing too hard. People can’t push me hard, anymore. Not anymore. No thanks. Give it a break.

Still, one must work, one must earn money, one must pay the bills… If only I could find a job I could do from home, instead of going out into the world. I’ve been thinking I really need to work for a company that can offer me structure and reliability and some sort of regular schedule. I’ve been in and out of the regular job scene for a while, back and forth to a part-time job and futzing around for the past year or so. I’ve been thinking that I need more than that — more structure, more involvement…

But the more I talk to people in the working world, especially recruiters for technology companies, the more it gives me the willies. And I don’t relish the idea of going back to a 9-to-5 position. Especially if it involves driving an hour each way. Just too much.

Especially since I’m starting into dealing with this TBI stuff. I really don’t want to have to put my diagnostic testing and rehab on the back burner, while I try to figure things out. I don’t have an unlimited amount of money in the bank, so something must be done. But really, I’d prefer to work at home… telecommute. Work remotely. Not have to go into an office.

Better yet, I’d prefer not to have to work at all.

But that’s not really in the cards, at this point. Unless people buy so many of my headache journals that I can retire. Or they purchase more of my writing/research/resource guides. That’s always a possibility. A slim and distant one, but a possibility, no less.

But seriously, folks, there must be a better way for tbi survivors to make a living, than having to schlep into an office and be surrounded by people who neither understand nor care about your condition. I’ve worked with disabled people before, and while our employer did accommodate them, and they were great friends with everyone they worked with, the simple fact is, they had to work like the dickens just to get by “normally.” And while people did help and reach out to them, there was always that undercurrent of pity that makes my skin crawl.

I just can’t bring myself to “play the disabled card” as a tbi survivor. I’m still up in the air about whether I’d even mention it to an employer. I certainly will not mention it to consulting clients. That would totally work against me, I believe.

I just need to keep it to myself, unless there’s an expressed need to let people know what’s going on. I guess it’s all in a day’s work for a tbi survivor… trying to figure out how to navigate the working world. Or the world in general.

But I don’t think I started this post to bitch and moan about my job situation… where was I? Oh, yes, now I remember: ruminations of a high-functioning mtbi survivor. That means I’m supposed to focus on my strengths, I suppose 😉

The oddly conflicting fact of the matter is, being a high-functioning tbi person can make things all the more difficult, because if you don’t “present” like a tbi person (like me), it can be pretty difficult to get people to take your limitations seriously. I’m having a getting-to-know-you meeting with a counselor who’s seeing a friend of mine, who’s really struggling with my newly discovered tbi status. This counselor knows a bit about tbi, and they don’t think I look or act like a tbi survivor, whatever that may be like. So, I need to sit down and explain things and hopefully elucidate my situation.

I’ve invested a whole lot of time and energy in making sure that nobody, but nobody, realizes I’ve got a disability, and now I have to sit down and explain to someone how my front is often just a front, which makes me a fraud and a fake, I suppose, on a certain level. I’m not nearly as smart as I pretend to be. Or as quick. Or as inspired. I just do a great job of imitating someone who is. Or maybe that makes me a highly resourceful survivor extraordinaire, who just doesn’t want to miss out on life and sucks at self-assessment, so they can’t see that they’re not quite as smart/quick/inspired as they think they are.

It’s all very confusing, and I’m not helping myself any, right now. I’m actually very tired. And stressed. And worried about these interviews I have coming up over the next few days.

Just remember, on the internet, nobody knows you’re a dog…

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When they think your TBI is PTSD

I just checked my blog stats, and somebody came over to this site while Googling for info on soldiers and PTSD.

I want to quickly put in a word for military folks who are seeking help for post-combat/deployment issues, who may be headed down the PTSD treatment road, but may miss TBI treatment in the process.

I started professional counseling about six months ago for “coping issues” that I couldn’t get my head around. Everything in life had just gotten so difficult, and I couldn’t understand why I kept running into dead ends with jobs and relationships and why I couldn’t seem to advance in life. All my peers have “moved on” and “grown up” — many of them now with grandkids and advanced careers, long-term homeownership, and all the accoutrements of adult life… while I languished in a no-man’s-land of false starts, scattered ideas, and a long line of failed or aborted attempts at living a normal life.

Now, don’t get me wrong — on the surface, my life looks like it’s highly advanced. I’ve got a great home, a wonderful marriage, and two cars in the garage. My resume looks fabulous, and I’ve got a lot of respect from folks. But my external circumstances don’t match my internal state… and they haven’t for a long time. Nobody really knows just how deep the self-doubt, anxiety, self-criticism, abysmally low self-esteem, and constant invisible struggle really goes.

Except me. And I don’t breathe a word of it to anyone. Not if I can help it.

So, when my health and career and personal life all started to tank in a very big way, this past year, I sought professional help. The counselor I found is highly experienced, compassionate, insightful, kind, caring, and very adept at what they do. But I found myself over time feeling as though they were looking for some sort of horrific trauma in my past that would cause me to lose big chunks of my memory, be uncertain around people, and erode my emotional and behavioral (and cognitive) foundation.

I got the distinct impression they were looking for emotional trauma. Abuse. Neglect. Some sort of terrible thing(s) others did/do to me that cause me to have PTSD. Or some life-threatening event that brought on PTSD.

We had talked about post-traumatic stress a good deal, and both of us accepted that it could have a part in my difficulties. But no matter how closely I looked at my life, I couldn’t for the life of me find THE Event(s) that had wrecked me for “normal” life.

It just didn’t make any sense to me. And when I dug deep and did my own research and realized that sustaining a traumatic brain injury at the age of 8 (and possibly other times), as well as another TBI three years ago, did actually fill in a huge, gaping missing piece of the puzzle.

It’s not that my counselor was incapable or incompetent. They were just looking for the wrong thing in the wrong place. They’re a wonderful resource for me, and I really value their input, but in the case of TBI, I had to come up with my own diagnosis.

This article was very helpful:

Concerns grow about war veterans’ misdiagnoses – Brain injuries can defy easy detection” – I passed it along to my counselor, and they found it very helpful… as well as a bit disconcerting.

And the blog “A Soldier’s Mind” has some more info.

If you’re in the same boat I am/was, you may need to do your own research & preliminary diagnosis, too. After all, TBI tends to make it very difficult for people to tell what’s going on inside our heads — and it can make it tough for us to figure that out, too. Doing research online is a great way to make a start.

I’m finding that TBI is not particularly well-known in the psychotherapeutic community — I have a bunch of friends and associates who are therapists, and when I’ve talked about TBI, I’ve gotten blank stares. That’s not entirely their fault. They aren’t always trained to look for physical ailments, which are the domain of medical doctors. If anything, they’re taught to look away, in terms of medical issues — liability issues, I suppose. Unfortunately, there seem to be a lot of highly trained individuals who simply don’t have the kind of physiological orientation that treats cognitive-behavioral symptoms as possible neuro-physiological phenomena. They are accustomed to looking at emotionally traumatic life experiences as the root of PTSD problems. They’re looking for the right thing… but they’re looking in the wrong place.

I really want to devote a fair amount of time and energy on this site to explaining to psychotherapeutic professionals the personal realities of living with TBI, as it relates to trauma. There are different aspects of the condition that both mask post-traumatic stress and exacerbate it. TBI adds another wrinkle to the whole scene that complicates matters and requires greater sensitivity to our situation.

When I informed my counselor about my TBI, they seemed a bit concerned that I wouldn’t need their help anymore… or that I’d terminate my sessions with them. They seemed to think that TBI work would replace the cognitive-behavioral work I was doing with them. But in fact, the TBI aspect makes it even more important to do cognitive-behavioral counseling. It doesn’t make counselors superfluous. If anything, it makes them all the more essential.

Other posts about PTSD:

Better today… of pain and ptsd

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I’ve been waking up early a lot, lately

This morning I woke up at 5:00. That isn’t very early for some people, but is early for me, especially since I didn’t get to bed till midnight, and I need 7-8 hours of sleep to be fully functional. I’ve been pretty tired, lately. Needing to catch up on my sleep. But try as I might, I can’t seem to get myself to bed before midnight, and I can’t seem to sleep past 5 or 6 a.m. I do what I can to get naps in during the day, which helps, but it’s been a long time since I had 8 solid hours of good, sound sleep. That’s what I’ve traditionally needed, ever since I was a kid, but it hasn’t happened for a while.

This is really nothing new, actually. I’ve been waking up at 3 a.m., on and off, for the past three years or so. Since I fell and whacked my head at the end of 2004, I haven’t been able to really sleep the way I want to. I either can’t get to sleep before midnight/1 a.m, and/or I can’t sleep past 6 or 7 in the morning, and/or I wake up throughout the night, and/or I wake at 3 a.m. and can’t get back to sleep. All told, I’m lucky if I get 6 hours of sleep a night. I can’t remember the last time I had a full 8.

I’ve often resorted to just getting up at 3 a.m. and busying myself with things I meant to do the day before, but didn’t get around to… then hoping that I’ll wear myself out and get back to bed for an hour or so of additional sleep before my day officially starts at 8 a.m. That’s worked for me in the past, but as often as not, I find myself caught up in the little “asides” I pick up, and I don’t get back to sleep. Then I spend the rest of the day worn out and frazzled.

I’ve become increasingly accustomed to being tired all the time. It’s not such a bad thing… unless I think about the impact it may be having on my health. It certainly doesn’t help my headaches any.

Speaking of which, I have another one today. I’ve been pretty much headache-free for a few days — that is, I’ve been at a .5 or 1 level, instead of the usual 3-4 level (on a scale of 1-10). Today it feels like a 3, for starters. In the upper occipital area — back of my head, around the middle, near where my skull starts to curve around towards the top. I’m not entirely sure if the headache is due to stress and strain and thinking too much (I started doing that at 5:30 this a.m., when I realized I couldn’t get back to sleep and started fretting about things like work and jobs and paying the bills)… or maybe it’s muscular. I did go to the gym yesterday and had a good workout. I’m sore, now, including my shoulders and neck, so that could have something to do with it.

There’s a pronounced ringing in my ears, too — it tends to accompany my stronger headaches, if I’m at a 3 or higher. It’s a hollow, high-pitched, whining ringing that’s constantly in the background. If I thought about it, it would be maddening. But I’ve had most of my life to get used to it, so it’s just there…

But back to my sleeping patterns. Sleep disturbance is a common after-effect of a TBI, and when I look at my sleeping patterns in terms of my most recent injury, it all makes total sense. Although I sustained a TBI when I was 8, I don’t think that sleep disturbances weren’t a part of my life till I was injured in 2004. Even when I was 10, I was able (and eager) to go to bed by 9 or 10 p.m. and I could sleep through till 6 or 7, no problem.

After getting 8 hours of sleep a night, come hell or high water, ever since I was a kid, all of a sudden in 2004-2005, I just couldn’t manage to sleep through the night, and it made me crazy… until I resigned myself to it and just tried to adapt with afternoon naps. I’ve been an avid Saturday/Sunday afternoon napper for many years, even before my patterns were disrupted. But in the past three years, it’s become a really necessary part of my weekly routine.

Of course, three years ago, when I was waking up at 3 a.m. every night and unable to catch up on my sleep, I blamed job stress. Certainly, that could have something to do with it, but I was stressed before my injury, and I wasn’t up in the wee hours every single day. Not like I was after the fall. And after I left that job and had less stress in my life, I was still hassling with sleep disturbances.

I’ve been looking around online for resources on sleep disturbance. Over at http://www.tbihelp.org/sleep_disturbances_following_tra.htm, they say:

… It is generally accepted that sleep is usually regular and predictable. For instance, when a person is about to go to sleep, neurons within certain parts of the brain (e.g., the brainstem, thalamus, hypothalamus, and basal forebrain) become more active and prepare the person for sleep. Other areas of the brain then become involved, and seratonin is released, which facilitates the sleep process even more.

When the brain is injured (the severity of the injury does not appear to matter), the person’s sleep/wake cycle often becomes disrupted. Thus, many people who have sustained a brain injury experience difficulty getting to sleep, maintaining uninterrupted sleep, and subsequently remain quite tired during the day. Even those with mild TBI report sleeping difficulties. It has been found that when these individuals do sleep, their sleep is lighter, and less restful, where they often awake during the night. When a person is not getting enough sleep at night, they often become excessively tired during the day, and frequently experience depression. Unfortunately, while there are some studies that demonstrate particular sleep disturbances following TBI, there have not been any large studies that investigate the different ways in which such disturbances impact upon other areas of a person’s life (e.g., cognitive impairments, psychological functioning).

The article may be found at:Drake, A., & Bradshaw, D. (1999). ‘Sleep disturbances following traumatic brain injury’. Brain Injury Source, 3, Brain Injury Association: Alexandria, Virginia.

Since the article dates back to 1999, I suspect there have been larger studies about how sleep disturbances impact the lives of TBI survivors (not to mention their family members and employers).

Then again, other more recent studies report the need for more studies… Hopefully there will be more work done on this. I’ll need to check more recent brain injury research for updated information.

Other links about TBI and Sleep Disburbance:

It’s encouraging to see that researchers know this is an area that needs more exploration… and calling for more studies about sleep disturbance after tbi. As the “Sleep Disturbances after Brain Injury” site says:

Problems with sleep are another poorly understood, but absolutely central problem after brain injury. As serious of a problem as overattending fatigue can be, if the injured person doesn’t start the day refreshed, it can be debilitating.

I’ll say! When I had my fall in 2004 and went back to work A) without having a clue that I’d been injured, or to what extent I’d been affected, and B) never getting adequate sleep to keep up with not only my healing but also my day-to-day experiences in a highly stressful job, the results were personally and professional catastrophic.

Not only could I not cope with the day-to-day demands of everyday activities, like keeping up with my chores, cleaning, taking care of the house, doing yard work, etc… but I couldn’t keep up with my workplace responsibilities. I became increasingly hostile to people around me, I became insubordinate to my manager(s), I lashed out at co-workers without provocation, and I frankly scared a lot of people at work with my temper and my intensity.

Everything around me became that much more “amped up” with me, and I had a very hard time both moderating my reactions to people and regulating my pro-active behavior. Eventually I had to leave… though nobody understood exactly why I’d imploded. Least of all, me.

I’m convinced that lack of sleep exacerbated a lot of issues I had, and not only made me more difficult to deal with, but also prevented me from healing adequately. Not getting enough sleep pushes me to the point where I had ongoing difficulties navigating the social landscape at work, and my self-confidence was pretty much shot, as a result. The emotional fallout from that has been intermittently devastating, and it’s still causing me grief, trying to figure out how to integrate into the working world in a positive way — meeting the needs of my clients, as well as my own physical demands.

Yes, sleep disturbances are a huge problem for me. I’ve been plagued by them for over three years, now, and it’s a huge pain in my neck. But knowing that they can be traced back to my TBI(s) helps tremendously. Now I can explain it to myself and the people around me. Now I can put it in terms that actually make sense to other people.Now I don’t feel quite so helpless and alone anymore. And that makes all the difference in the world.

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