New day, fresh start, woo hoo

A new day awaits

January seems to have flown by. And today actually feels like a fresh start for me. There’s something about today… I’m going to give the new neurologist another call to see if I can get in to see them. They transferred to a new hospital — which is only 30 minutes from my home (score!!) — and their credentials and records all have to be transferred to the new practice. I called two weeks ago, and the deal wasn’t done yet. They told me to call back in two weeks, so I’m doing it.

I’m feeling pretty positive about this. The main thing I want to find out, is if there is something serious going on with me. All these symptoms could be nothing. The tremors, twitching, headaches, dizziness, vertigo, nausea, etc. could be “just one of those things”. Or they could be something more serious. I just want to rule out the “more serious”, so I don’t have a degenerative condition eating away at me behind the scenes.

I’ve dealt with some vitamin deficiencies, which have really helped my head. And I’ve been dealing with my physical fitness to stave off the creeping effects of aging. I just want to make sure I’m not in a situation where things are getting worse without me knowing it. My PCP, as much as I like them, has pretty much checked out of their practice. They’re just putting in time until they retire, it seems like. They don’t like the practice they’re in, they don’t like how they’re told they’re supposed to practice by the insurance companies, and they don’t follow up adequately with me. I can talk to them about most things, and I feel pretty good about our rapport. But medically, I have reservations. They’re just not as engaged as I’d like them to be.

Anyway, yesterday was a very telling day for me. Monday’s are always informative, in one way or another. The changes at work have not worked in everyone’s favor, and there are a lot of disempowered, disenfranchised people walking around the office. The people who are most disenfranchised are the long-timers, the ones who seem to think that they’re “in”, and they don’t have to really do anything special, other than just be their fabulous selves.

Hm. In today’s economy, that will never work. The whole long-term employee thing is a trap in many respects — first, because it is no longer valid. Companies don’t have loyalty to people who are loyal to them. It used to be that being a permanent full-time employee was like being married to the company — there was an expressed bond between the two, an agreement of fidelity and loyalty. But that’s not the way things are anymore. Companies are very quick to shed employees who no longer serve them.

And when I think about it, it’s like the companies are spouses who ditch their partners because they’ve “let themselves go”. I think that tends to happen in companies, where long-term employees stop thinking about how they can keep fresh and current and keep adding value to their employer. They get complacent. And they get lazy. And then when they get “out of shape” and carry on with an air of entitlement, it’s actually really easy to cut them loose. What do they add? The business world is brutal. Companies can’t afford to “sponsor” employees who don’t pull their weight.

That’s how it is, too — companies “sponsor” employees over the long term, covering for them and making it possible for them to keep working, despite getting lazier and lazier and more and more entitled. There’s no more hustle. There’s no more innovation. There’s just more and more complaining, and less and less productivity.

Now, I’m not an apologist for companies that just cut people left and right, because they can’t run their own business. I’ve worked at a bunch of places that couldn’t keep their act together, and wrecked a lot of lives as a result. That kind of stupidity makes me crazy. It’s so unnecessary — and I think it also stems from the same sort of laziness and entitlement that gets employees into trouble. People quit doing the things that made them great to begin with. And then they lose it. And get replaced. And people get hurt as a result.

But sometimes they just hurt themselves. Like these days, with the folks around me having a really crappy attitude and not taking responsibility for their decisions and frame of mind. People running off to huddle and complain and gossip. People gathering in little cliques to “circle the wagons” and protect themselves. I know what that’s like. I’ve done it myself, many times in the past, when I was younger.

It really is a sign of immaturity — I recognize it well. And time will solve that problem, I assume. Right now, though, it’s a pain in my ass. I really need to be surrounded by positive people who have a can-do, entrepreneurial attitude, and who are willing to work.

And around me, there’s not much of that sort of attitude. Just people feeling sorry for themselves.

Well, whatever they want to do, that’s their business. I don’t have to let that bother me. I just take myself and my laptop to the cafeteria and work there. As long as I have a wireless connection, it’s cool. I put my headphones on and put on some tunes, and I can make some pretty great progress. And have a nice view from the table I’m sitting at. I have my ways to get away from the little dark clouds.

I have a great feeling about today — it feels very promising, and I’m looking forward to what the day brings. I have my plan. And I remembered my datebook today, so I can see what I’m supposed to be doing with myself. It’s morning, and the sky is getting lighter behind the hill in the back of my house.

It’s a new day — why not make the most of it?


Two steps forward, one step back… then two more steps forward

It’s still progress

There is progress on the neuro front — slow but steady. I may have found someone I can work with to help me sort out all the issues I’ve been having, but have not been able to articulate that well:

  • constant headaches
  • constant tinnitus
  • noise sensitivity
  • light sensitivity
  • balance issues
  • nausea
  • fatigue
  • muscle weakness
  • twitching in my right hand and thumb
  • tingling and numbness on the left side of my face

All the “usual suspects” of my daily life are getting to be a real pain in my ass, and now that I’m not completely wiped out each and every day by my commute, I have gotten the strength back to actually notice how screwed up things generally are for me, physically speaking.

Don’t get me wrong. My life is good. I love it. I have a good job with a great company, my debts are gone, my house is in good shape, I’m able to read and write more now, than ever before, and it’s great.

The thing is, all these symptoms — some of which have been with me for as long as I can remember — are now much more noticeable, and I would really like to do something about them.

The main thing is, I need to see if they are part of something more serious than just the everyday post-concussive wear and tear. I can definitely live my life with them in the background. I’ve been doing that for as long as I can remember. They don’t make me utterly miserable, when I manage them.

But wouldn’t it be interesting to find out what life is like without them?

That’s the next chapter of this journey, anyway. Still in development.

I haven’t forgotten about my S.O.S. – Sense-Of-Self – work, though. I’m working on a couple of other projects right now that are taking up a lot of my time and attention. I hope to get back to the SOS writing this weekend — and in fact, it would make sense, since my physiological issues and all the pieces that go with that are intimately connected with my sense-of-self. That, and my ability to communicate.

I’m feeling a little discouraged about the communication piece, actually. When I’m writing, things become very clear for me. But when I’m talking, I can’t say nearly the things that I need to say. It’s like I have a vast and ever evolving “ecosystem” in my head, but just a very small window through which the thoughts and ideas and knowledge can actually pass. That’s when I’m talking. Everything gets jumbled up, and even though it sounds like I’m saying things that make sense to others, they do not reflect what I’m really trying to say.

And people who tell me I’m making sense just depress the crap out of me, because I can’t completely express what’s truly going on inside of me, and if they could hear only half of what I want to say, it would put things in a very, very different light.

When I’m writing, however, it’s a totally different thing. Maybe because I’ve spent so much of my life writing and working on that skill, while talking has been far less of a priority with me. That, and when I talk, all the words and thoughts and concepts get jumbled up in my head.

I guess that’s my next thing to tackle — how to communicate effectively by the ways that work best for me, instead of trying to rely on spoken communications. I’ve collected a lot of data about my headaches and other symptoms, which I can share with the neuro, when I see them. And I’m working with my neuropsych to figure out how best to present everything.

It’s all an ongoing process, of course. And I need to not be too rough on myself when I fall short of where I’d like to be.These things can take time. Just gotta stick with it.



Doctors: They’re just so far away from us

It’s hard for me to know what to say to doctors, and how to say it

In preparation for seeing a new neurologist in the beginning of next year, I’ve been listening to some physician podcasts, lately. It’s my latest “thing” I do when I have some free time to listen. I need to better understand doctors and how they think and talk, so that I’ll be better able to communicate with them, if I end up seeing them.

The podcasts are usually pretty short and I can get at least 20 minutes in, during lunch or while I’m doing busy work at the office.

I don’t really have that much time to listen to podcasts or watch videos, in general, because it seems to take me longer to “get” what’s going on, than I expect. And it’s a little discouraging to listen and expect myself to understand immediately, but have to either back up and listen again, or just let it go.

I think it’s harder when I can’t see someone talking. Watching videos, it is easier for me to get things. But again, it takes up a lot of time, and it’s a bit discouraging to feel like I’m falling behind.

Anyway, today is my last full day of work before my Christmas and New Year’s vacation. I’ve got a few things planned for next week… but not much. Most of what I’m doing is taking care of myself with my support group — seeing different folks who can help me in one way or another — and resting. And doing some work on the projects I have going. This is going to be a good time to get away from my routine that has me on-the-go all the time, and do some deeper thinking than usual.

Should be good.

One thing I’m going to be working on, is collecting my info for this new neurologist I’ll be seeing. I’ve been intending to see a neuro for about a year, now, and finally it looks like I’m going to connect with one. I have high hopes about this… but I don’t want to get myself too caught up in hopes. I’ve had things go wrong before, so I have to factor that possibility in.

Anyway, it will be good for me to just collect all this info, anyway, so I have it to talk to any and all of my doctors later on. I haven’t really discussed my headaches in-depth with my PCP — they told me to go see a neurologist, anyway.  It will be good for me to collect my info in one place… also for myself.

I tend to just disregard what’s going on with me, because there is so much going on, on a given day. And I’m kind of resigned to it all — the vertigo, dizziness, feeling sick to my stomach, always having a headache, the ringing in my ears, the noise and light sensitivity, the joint and muscle pain… it’s all one continuous “cloud” of background noise for me, and I just live my life in spite of it. I don’t let it stop me. It slows me down at times, but it doesn’t stop me. And I use it as a barometer to make sure I’m not overdoing it. More pain, more noise… that means I’m overdoing it and I need to rest. So, it can come in handy.

But some days, it just feels like too much, and I’m not all that sad about the idea of not living forever. “Eternal rest” sounds pretty friggin’ good to me, some days. Not that I want to kill myself (I haven’t felt that way in a few years, which is a positive development). But I don’t mind the idea of this whole “deal” not going on forever.

Other days, I manage to deal with it… and I have hopes for things changing for the better.

If only I felt like I could effectively discuss this all with a doctor. I really don’t.

Talking to doctors has never been my strong suit. Conveying the right information in the right manner has always been a challenge for me — I either gave them too much information, or not enough. Either way, I often end up looking a bit dense and malingering, like there’s not really anything wrong, so what the hell am I taking up their time for? Listening to the physician podcasts, I’m struck by how specialized their language is, and how differently they describe and conceptualize things. They have their own language, and with their own language, comes a different way of thinking about things — very, very different from how the rest of us think and deal with things.

Going to the doctor is like going to a different planet, sometimes. It’s a foreign place that often doesn’t seem to have anything to do with my everyday life. Doctors are often so removed from the flow of regular everyday life, with their entire systems being reshaped by medical school, their thought processes shaped by specialized terminologies and ways of looking at situations, and their social status being separate and apart from “the sick”.

They deal with extreme cases all the time, so of course they have to protect themselves. They’re human, just like us, and the medical school system seems to crank out professionals who are doctors first, and humans second. And if they never have any physical problems of their own… well, how can they really truly understand the situations of the people they’re working with?

It’s very odd. And it’s also perfectly understandable.

But even though I understand it, it still bothers me. Yes, I get how the stresses and strains and secondary trauma of medical training produces individuals who are pretty far removed from their patients, in terms of thought process, language, and deep understanding of the human condition, but it’s still pretty depressing. And I get very anxious when I think about trying to explain myself to the next neuro I see — if that ever materializes at all.

Who knows if it will? But whatever happens, I still need to track my symptoms and keep decent notes, so that if it ever happens, I’ll have something useful to convey.

Well, anyway, gotta get to work. The day is waiting.




After the storm

So, the past few days have been a little dramatic. With the changes in our organization, people are confused and intimidated and upset, and some are handling things better than others. For some, the changes are really disorienting — especially for those who are not located at the home office. The locus of power has shifted from one office to the other, and both offices involved are many, many miles apart, with completely different office atmospheres and cultures. So, there is a great deal of tension – especially because the power has completely shifted from one side of the company to the other.

So, the ship is listing a little bit, till everybody finds their footing again.

The beginning of this week was very stressful, with a lot of tension and aggravation and venting and pressure. I have some deadlines I need to deliver on, and it’s been a real adjustment, getting used to the extra workload and managing my existing chores tasks. But I’m getting there. I was able to really turn things around from one day to the next — having multiple meetings with the same people, and getting them from a place of confusion and antagonism, to clarity and direction.

People just need to direct their energy into productive directions. That’s the biggest piece of the puzzle. And even the most problematic troublemakers turned out to be allies during a meeting I led yesterday. The difference from one day to the next was like night and day — and I think that just keeping people in the loop is a huge thing for us as a larger team.

So, that’s my primary goal and objective, these days — to just keep communicating and keep everyone in the loop to discuss the best ways to do things, instead of steamrolling them and enforcing my dominance and authority.

It’s just basic humanity, along with clear vision and decisive leadership. Technically, I’m not the person in charge, as I’m several layers “down”, but that shouldn’t keep me from stepping up to provide the direction and leadership that people are looking for. There is a massive leadership gap where I’m working — folks in charge seem to think that if you reach out to people as human beings, it will make you look weak and also “coddle” them. But from what I’ve seen, ignoring the human element just sows seeds of discontent and more confusion and frustration.

So, I’m going to do my small part about that and see if I can’t turn my own situation around. I’m working with a lot of people, all across the group and larger company, so I have a great opportunity here.

I just need to keep focused and not get pulled into all sorts of political intrigue and gossip and what-not. That doesn’t serve me or anyone else, and it just distracts me from what I need to be doing. It’s not like I have a lot of time and energy for extra fluffer-nutter stuff, anyway.

So yes, this is a great opportunity for me to show how things can be done differently. I know I’m a total dark horse, here, without the political clout and profile to figure prominently in the political landscape. But who knows? That could change, based on my work this year. It could really do wonders for my reputation and career prospects at this company. Interestingly, I’m not really wedded to the outcome on this. If I become rich and famous within the context of this company, then great. But I’m really treating this like a stepping stone to something else, because this company does a lot of things I do NOT agree with, and I don’t really want to support their business activities for the long term. In fact, I spent much of my early life radically opposed to what they do, so it’s a real moral stretch for me to be working here at all.

But I’m here now, so what can I do with this situation?

Treat it like what it is — a stepping stone to other things. I’ll put together this plan of action and follow through on it for the next year, build my contacts with executive recruiters on the side, and report in regularly about what’s been happening in my world, what I’ve accomplished, etc. I’ve heard that’s how you do things. And in any case, it will help me to better define where I am going in the future, with this evolving career path.

Above all, I need to stay on track, focused, and really keep myself in good shape. Get enough sleep. Eat right. Exercise on a daily basis — even if it’s just a little something in the morning while I make my breakfast. I’ve got a bunch of physical issues — aches, pains, headache, pulled muscles, vertigo, deafening ringing in my ears, nausea… I could list ’em all out at length. But that would take my attention away from what I really need to do. I mean, it’s nice to think that I could be free of the constant presence of these things, but I don’t have a lot of faith that it can really happen to the extent I would like it. And even if I get there, I’m not sure it’s going to last.

I’d rather just keep going.

Speaking of which, I’ve gotta get going – the day awaits.



Yes, of course I can. If…

With the right tools and approach…

I’ve been thinking a lot, lately, about the idea “I Can’t” that has been in the back of my head for about as long as I can remember. It’s been a constant companion for me through the years, and has both held me back, and propelled me forward.

Knowing nothing about how TBI can affect how you behave in the world, didn’t help me at all. I had no idea that how it can disrupt your short-term working memory, how it can make you more distractable and lead to “catastrophic response” meltdowns, and really disrupt your functioning in stressful situations. And so, I figured that I was just built wrong, that I was messed up, and there was nothing to be done about it.

I would try and try and try to do things, but they would just fall flat. I would get overwhelmed or distracted (and then forget what I was doing), and then I’d end up with a lot of plans that never happened. This was for things that others asked me to do, as well as things I took on myself. Nobody ever realized that I might need a little prompting — they just assumed I was lazy, and that was that. They just assumed that there was something wrong with me, and they made sure I knew that they thought so.

And being a basically trusting individual, I assumed they were right. There was something amiss with me. And that was that I couldn’t do the things that other people did. I just couldn’t. I didn’t give a lot of thought to why or how — all I knew was, “I can’t.”

Now, on the other hand, I’ve got this stubborn, contrary streak that refuses to give in to the “I can’ts” all rattling ’round in my head. For those things that meant the most to me, as well as the things that everybody else said I couldn’t do, I had an irresistible, unconquerable, indomitable drive to succeed. I would just get to a point where I couldn’t stand having people think that about me, and I couldn’t stand the thought of them “winning” over me and convincing me that I couldn’t do the things I wanted to do. That just pissed me off.

So, I would pull out all the stops, put all doubt from my mind, and drive head-first into any storm, not caring what anyone said, not paying any attention to any detractors, not giving an inch in my pursuit for my goals. And I would drive through any and all obstacles that kept me from my goal. Because I could. I could do it. I could get there. I could succeed, by God, I could.

Now, when I think back on my life, I realize that a lot of things I’ve done over the years have been done for the sake of proving to others (and myself), that I could do something. I would take on challenges, not because they were something I genuinely wanted to do, but because they were things I supposedly couldn’t do. They were things that nobody else believed in, that nobody else thought I was up to accomplishing. And I would accomplish them with pretty impressive skill, if I say so myself.

The only thing was, once the challenge was conquered, I lost all interest in what I was doing, because the thing that kept me going was the challenge, not the ultimate goal. And even if the goal was still off in the distance, if the challenge was overcome, I would not complete the task to reach the ultimate goal.

And I’d end up with half-finished projects and half-attained goals — which ultimately add up to failure to complete — failure.

And my once-bright-and-shining glory would fade… and once again, I would be left standing alone in the construction site of my life, proverbial hammer in hand, other tools scattered around me, crowbar still hooked to the nail I was pulling out of that beam, just hanging there…

And once again, my success would sour into failure, and I would have confirmation, yet again, that I can’t.

The thing was — and this is actually a life-changing revelation for me — the problem was not my ability, the problem was my motivation. My drive to succeed wasn’t about me achieving a goal because I wanted that goal. It was about me achieving something that nobody else thought could be done. And once that source of motivation — doing the “impossible” — was over and done with, all motivation to keep on going was gone, baby, gone.

So, the source of that “I can’t” core belief was really contextual. For the things I care most about, that matter so much to me, that I really care about, my motivation always stays strong. Because it’s what I want to do — for myself. For my life. For my soul. Things like writing about my life experiences, taking care of my health and my personal relationships, pursuing the projects that I work on in my spare time… they are all so precious to me, so vital to me, there is no need for me to keep bolstering up my motivation, because I want to do them for the right reasons. They give me life.

On the other hand, my job — which has pretty much been just a way to make money to fund the other parts of my life, so that I can do them freely as I please — is another story. And it’s driven by that contrary, “Yes, I can do it – I don’t care what you say – just watch me” mentality that is directly connected to proving to myself and others that we are all wrong about me and my general ineptitude. It’s just about me proving a point, not actually doing something I care about and believe in.

So, of course after a certain point, that’s going to fall apart. Because there’s really only so much I can expect to gain from a situation that has nothing to do with my deepest values and that I’m really just doing for the money. And when that situation starts going directly against my deepest values, like the current job I’m in, then the clock is well and truly ticking. Proving “I can do it” in a situation where my accomplishment is going to literally trash the world I live in, is not my idea of success.

The thing I need to remember is that, when I start to back off on things that I’ve lost motivation for, it is not an indication that I cannot succeed at them. I am literally choosing to under-perform. It’s that simple. I’m not failing because I lack ability. I’m under-performing because I’m choosing to not apply my ability. And that’s usually for a pretty good reason. I just disengage and let the chips fall where they may — usually in some sort of disarray.

Of course, the problems start in my head, when I start listening to others telling me that my failings mean I am not good enough, or there is some fundamental flaw in me. That’s what they seem to think, without apparently stopping to ask if there might be a reason why I am under-performing… and if there might be a way that they can help turn things around. They don’t get it. They don’t understand. And too often the results are that I internalize what they’re communicating to me, and I get a completely wrong perception of myself. I get tired, basically, and then my filtering system doesn’t work so well.

See, that’s the thing — I get tired. I get worn out, and then my ability to think clearly and have an objective perspective is totally screwed. I get down on myself for not being able to think well when I’m exhausted. Well d’oh – of course I can’t. Who can? I have pretty unrealistic expectations of myself, sometimes, and it takes a toll. When I’m tired, I’m probably living at about 25% of my potential, which is no reflection on my true abilities and prospects.

It’s wild, now my self-perception is directly linked to fatigue and how I feel physically. This is something I am examining and learning about, more each day, and this is an important piece of the puzzle that is my life.

So, here’s the thing — that whole “I can’t” business is directly tied to a bunch of things — my motivation, how I feel physically, feedback from others, and my memory and distractability issues.

When I am aware of them all, and I am managing them actively, then I’m fine. I don’t get bothered by the whole “I can’t” thing.

  • When my motivation is for something I really, really want to do that brings me to life, I’m good to go.
  • When I am well-rested and not feeling sick to my stomach and I am feeling vigorous, I’m good to go.
  • When I am actively screening feedback from others to block out the B.S. they send my way and make up my own damn’ mind about things (especially myself), I am good to go.
  • When I am using my tools to deal with my memory and distractability and actively keep myself on track, then yes, I am really good to go.

All that being said, I have all of the above going for me today. So, off I go…



When things don’t go as planned

Sometimes there’s high seas ahead – oil painting by Joyce Ortner – click to see her gallery

I had my doctor’s appointment the other morning, and it went pretty well. I got some antibiotics for the infection that has been bothering my ears and making it hard for me to keep my balance, and I gave my doctor the holiday card my spouse told me I needed to give to them. It was a good call – and I picked out a good card, because it really touched my doctor a lot. They didn’t want to let on, but I could see it meant something. I mean, if you think about it, doctors spend their lives trying to help others. They have their limitations, like all of us, but in the end, their whole reason for doing what they do is to help people.

I have been taking my meds for the past few days, but I’m still having balance issues. I’m going to keep on doing it, and hope for the best. I really don’t want to go back, though. It’s just more opportunity to get put on more meds — which my doctor tried to do, when I told them about the balance issues. They tried to put me on meclozine / antivert, thinking that would fix what was wrong with me, but I told them no, because that stuff just makes me feel rotten and weird and dense, and it doesn’t do a thing for my vertigo. It’s supposed to fix the nausea thing and supposedly make me feel less dizzy, but it’s an antihistamine and the side effects whack me out.

Drowsiness and tiredness and that weird spacey feeling that antihistamines give me, is just not worth it. So, I told them not to prescribe it. Even if they had, I wouldn’t take that stuff. Like I need more crap in my system…Anyway, I can always take Dramamine if it comes to that. I’ve taken it for seasickness and it seemed to help me. At the same time, it still make me feel weird and “off” and the fishing trip I was on was a lot less fun because of it.

Anyway, I had been planning on “having the talk” with my doctor about not being a risk-taker, just having a hard time sorting through the myriad little “issues” I have on a daily basis. For any doctor who is reading this, please take note: TBI can introduce a whole host of physical issues, from noise sensitivity to light sensitivity to touch sensitivity to pain to ringing in the ears… a whole host of physical issues that can cloud the overall picture of one’s health. And that’s not even the mental health issues, like depression and anxiety, which can make everything seem 1000x worse than it really is… or it can make everything seem like it’s nothing at all. This obviously has implications for patients with TBI being able to accurately self-assess their level of well-being. And it’s helpful to address that aspect of our experience.

The only problem is — and I realized this when I was driving to my dr. appointment and was thinking about the best way to broach the subject. I thought about how I would approach it, how I would introduce the topic of my not being a risk-taker, but just a person who struggles with sorting through all the stimuli of each day… and I considered (based on past experience) what my doctor’s response would be.

I’m glad I did think it through, too, because it gradually dawned on me that if I talked about my issues the way I was, my doctor would try to prescribe me something. Or prescribe tests. Or try to DO something, instead of just understanding and thinking things through and letting that inform their approach with me. They tend to jump right into action! as though that will solve anything right off the bat. Sometimes it does. But in some cases, you don’t need a procedure, you need comprehension and understanding and a slightly different way of approaching things.

Knowing what I know about my doctor, after seeing them for a number of years, I really think that if I’d “had the talk” about my issues, I might have ended up fending off a slew of prescriptions and tests — they’ve already tried to get me CT-scanned and/or X-rayed over sinus issues. I mean, I’m sure they mean well, but I am not exposing myself to a bunch of radiation over a sinus infection. Seriously… It’s just not going to happen. Not unless I am in serious danger.

Likewise, I’m not going to raise a red flag that my doctor is going to treat like an invitation to charge. They’ve got a bit of a fight-flight predisposition, and the last thing I want is to have to try to explain and fend off their headlong charges and attacks against what might be vexing me, when all I really want is for them to temper their responses with a little more knowledge. I can easily see them ordering a bunch of tests and prescribing a bunch of meds, in the interest of helping me… and all the while, I just get sucked into the medical system with more crap on my chart to fuel the standard-issue medical responses that pathologize and (over)medicate my condition… when all I really need is some understanding and consideration. All I really need is for people to slow down… but knowing my doctor, that’s not going to happen anytime soon. At least not with them.

So, I didn’t have “the talk” with my doctor, and I’m a little disappointed in myself. At the same time, though, I’m glad I thought it through carefully ahead of time. In a way, I feel like I may have dodged a bullet from a weapon that I had trained at myself. I unloaded the weapon and put it down, and now I’m feeling a bit better. What I really need to do is speak up, in the course of conversations, when I feel that things are going too fast or my doctor says something that doesn’t sit right with me. Sometimes I can speak up and defend myself quickly, other times I can’t. I’m working on that. The times when I don’t speak up, I feel terrible afterwards, so that’s more impetus for me to practice speaking up.

That was something I did do on Friday — I spoke up about the meds and the tests and the assumptions my doc was making. They seemed a little peeved that I was questioning their judgment, but you know what? It’s my body, it’s my life, and I need to do what I need to do. Provided, of course, I’m not putting myself in danger.

Anyway, that’s one example of things not working out as planned, and it being okay.

Another example is last night, when I decided to go to bed early, then I got caught up in going on Facebook “one last time”. I swear, that thing is a massive time-sink, and I have to be careful. By the time I got to bed, it was over an hour later, which just sucks. Oh, well. I’ll just have to nap today. I had planned on doing some last-minute Christmas shopping, but the other thing that’s happening is that we have company from the party last night. Rather than driving home, we had someone stay over, which is fine. But now I need to be social and hang out, instead of running out to the mall. That’s annoying to me. But come to think of it, I actually knew that we might have company staying over, so I’m not sure why I was thinking that I was going to run out, first thing this morning, and take care of that. More annoyance — this time with myself.

Oh well — tomorrow is another day, and I can probably get all my shopping done early in the morning before the crowds hit the mall. I pretty much know what I want, and there’s not much of it, so it will keep things simple. Plus, having less time to spend on it really focuses me. Even if that doesn’t happen, and I get stuck in the crowds, and the lines are long, and I get trapped in the holiday crush, I can always check Facebook while I’m standing on line.

So, yeah – plans. I have them. We all have them. And when they don’t go the way we expect them to, then it’s up to us to decide how we’re going to handle them. I can get worked up and bent out of shape. Or I can roll with it and come up with another course of action. I can get annoyed at this, that, and the other thing, or I can just let it all go and see what happens. When I’m tired (like I am today), I am less able to just let it all go. When I am stressed (like I am over my job, even though I am off on vacation for a week and a half – the residual stress is ridiculous), it’s harder for me to just BE.

I’ve noticed an increasing level of intensity with me – I’m starting to lose my temper again (though inside my head, not out in the world around me so much). I’m starting to react really strongly to little things… like I used to, before I started exercising regularly and doing my breathing exercises. I’m noticing a change, and I’m not liking it much — especially the parts where I’m not rolling with changes as well as I would like to. Things are starting to sneak up on me again.

So, it’s back to using the tools I was working with  before. Despite my good progress, I had gotten away from the exercise and the breathing for a while, in part because I just got so uptight over doing it each and every day like clockwork, and also because I just needed to let it all sink in for a while. I was working really hard on my technique and also my regular practice, and it got to be just another chore that didn’t have much sense to it.  I just hit an impasse with it — maybe I had too many ideas and my head was spinning, maybe I had too much experience that I needed to just get used to… in any case, I needed a break.

So, I took a break. And I must admit it was a pretty big relief to not “have” to do the sitting and breathing every morning. All of a sudden, I had extra time, and ironically, I felt like I could breathe. I was still doing intermittent breathing throughout the day, when I felt my stress level increasing, but I didn’t have a daily practice.

Still, I do feel like I need to get back to a bit of that again. I’ve had my break. Now I need to try it again to see how it helps me… pick up where I need to — maybe where I left off, or maybe somewhere else… Just do what I need to do to get myself back on track and take the edge off this intensity, which has been building and is starting to drag me down.

Things change. Plans change. What we think we can do is often very different from what we can do, which is also different from what we DO do. Life has a way of changing directions on us when we least expect it, and the only constant is change. So, I need to work on my flexibility and chill-ness, so I don’t end up ship-wrecked over every little thing. Yeah… I need to work on that. And so I shall.

Now, to go for my morning walk in the woods.

Deadline’s done. Now, back to life.

All set

So, that’s that. The project is finished and now I get my life back. There are a few outstanding things to take care of, but other than those, we are good to go. And my regular life and regular schedule can resume.

It’s been a huge challenge, putting massive demands on my head and my body. It’s going to take me days, if not weeks, to get back to equilibrium again, but it will happen. Sleep will happen. Relaxation will happen. Good food and rest will happen. I did good work over the past months, and now it’s time to sit back and replace the resources I depleted.

And replace them, I will. With long, deep breaths that take in all that life has to offer around me. The scents of the autumn rains starting early… the sounds of swollen, dangerous rivers roaring past, through, over vulnerable, immobilized towns… the odor of pungent rot on a forest floor going through its cycles of death and revitalization… the sight of the finished project on the computer screen in front of me, actually live and moving and making its presence felt in the world beyond my desk… It’s all part of it. All wonderful and terrible and joyful and horrendous and as invigorating now as it was excruciating then.

My head is aching, and I’m still dizzy and feeling sick to my stomach. Breakfast as usual didn’t calm things down, nor did second breakfast. I’m a little more stable than I was at 6 a.m., but I have a ways to go before I build back up.

But build back up, I shall. I know my nervous system is pretty fried. I’m strung out, and I need to get back to rest-and-digest, out of that fight-flight cycle that’s been dominating my life, lately. I need to take in, not just spend and expend and go-go-go. I need to feed myself again, after starving myself for weeks and months. I need to feel something again, not just think-think-think.

And so I shall. And so I do.

See, here’s the thing… All the running is very well and good, but so much of it is just plain anxiety – not knowing, not being sure, not certain, being afraid of getting it wrong, being afraid of being penalized for getting it wrong, not feeling any leeway to screw up and live to see another day, not feeling like “I can do this”… not feeling up to the job at hand… not feeling up to much of anything. Tired, tired, and more tired. Because I’m running.

And half the time I don’t even realize it.

An amazing thing happens, though, when I realize this. When I am present and aware that this is what is going on with me, it ceases to have a hold on me. And I can choose how I want to handle things. I can choose how I want to react to it — get away from the fear, get away from the anxiety, and just settle in to take care of the things that are making me anxious and fearful.

And get some perspective. Open my mind, open my heart. Sit and listen. Spend some time talking to people I never get the chance to talk to. Spend some time reading the words of writers I used to love, who were lost to me for a number of years after my last TBI, because I couldn’t handle reading. No I can read again. And I find myself coming back to the words of writers I used to love — getting inside access to the spirit that moves them, the spirit that moves us all…

That spirit, that heart, those words… they feed me. And it is good.

Even when things were crazy and busy and frantic, they were good. It’s not a bad idea for me to push myself, now and then, and learn from it. I’ve learned a lot, namely, that I can push myself and I won’t fall apart. I’ve held myself back a lot, over the course of my life, thinking that I couldn’t handle things, when I never gave myself a chance. Things are even more challenging now, because I’ve got this brain stuff going on. But I’ll be damned if I’m going to let life pass me by, because of what I think I can or cannot do. If I try something — pour myself into it with all my might, and I fall flat on my face — or worse, on my head — then I learn. I would rather test my limits and take my chances, than only play it safe.

Granted, it’s no good to put myself in harm’s way. That will never do. But the real limits of what is and is not possible for me, aren’t always true in my mind. It’s a skewed up, screwed up hodge-podge of conceptions I have about myself and my life, and while I do acknowledge I have issues and areas I need to watch out for, the fact remains that there are also areas I am too careful about, and when I push the limits of those areas, I learn a thing or two.

Some of the things I learned are that dogged fatigue messes with my mind and memory and equilibrium like few other things do. But I also learned that — for a time — I can prevail and draw on reserves I don’t normally draw on. I also learned how dangerous it is to drive when I am that tired. I didn’t wreck, but I got lucky. I also realized, from reading the writings of people from almost 100 years ago, that people have been pushing the envelope of human experience for an awful long time. They get hurt, they get banged up, they get injured, they get concussions. They have all sorts of aches and pains, migraines and arthritis and dizziness, and more. And yet they keep going. They have always kept going. And some people have done a better job of taking their pains and traumas in stride, than others.

Whatever we do, however we do it, that’s life. We go through terrible times, and we suffer. We ache and we thrill and we keep finding out where the sharp edges of life are jutting out to snag us as we pass. We bleed and we vomit and we collapse from exhaustion. But we go on. And in the end, sometimes it does a body good to push it that far. When we push too far, we find out. For sure, we find out.

The thing is, as hard as we push ourselves, we need to allow in the goodness that life has to offer. I think that may be the biggest difference between how we are now and how we used to be, 100 years ago. Now, we are never, ever satisfied. There is always something else we need, something else we desire, something else we cannot live without. And we push ourselves without ceasing, ignoring the circadian needs of our bodies and souls, never stopping to appreciate the good that comes to us, always thinking that the good we have is simply not enough. It is never enough for some of us. And we put all sorts of conditions on our happiness, making our innermost selves eager victims of our own appetites.

Things come, things go. And we force ourselves to suffer, against all good sense and sensibility.

But I guess that’s just life.

But now, it’s time to sleep. Work will be waiting for me when I get up again. But for now, I need to rest. Relax. I may read, too. But mainly, I’ll sleep.

84 ways TBI can make your life really interesting

Some time back, I compiled a list of possible issues TBI can introduce into your life. I combed through a bunch of sources and then put them all together, took out the duplicates, and came up with a list of common complaints related to traumatic brain injury. I’ve refined the list over the past couple of years, and I’m sure there are more issues I’ve missed, but this is what I’ve  been working with, thus far.  These apply to mild, moderate, and severe. And a lot of them are problems I have dealt with on a regular basis throughout the course of my life.

Here’s the list, broken down by category:

1. Impulsiveness
2. Aggression (verbal/physical)
3. Raging behavior

4. Trouble being understood
5. Trouble understanding
6. Trouble finding words
7. Trouble communicating in general

8. Agitated, can’t settle down
9. Angerrrrrr!!!
10. Anxiety – Feeling vague fear, worry, anticipation of doom
11. Depression, feeling down
12. Excitability!
13. Everything feels like an effort
14. Feeling unsure of yourself
15. Feelings of dread
16. Feeling like you’re observing yourself from afar
17. Feelings of well-being
18. Feeling guilty
19. Feeling hostile towards others
20. Impatience
21. Irritability
22. No desire to talk or  move
23. Feeling lonely
24. Nervousness
25. Feelings of panic
26. Rapid mood swings
27. Restlessness
28. Tearfulness, crying spells
29. Feeling tense
30. Feeling vague longing/yearning

Day-to-Day Activities
31. Being overly busy (more than usual)
32. Feeling like you can’t get moving, you’re stuck
33. Feeling like you can’t get anything done

34. Altered consciousness
35. Aura or weird reverie, trance
36. Trouble concentrating
37. Trouble making decisions easily
38. Trouble reading
39. Analytical skills suffer
40. Trouble telling what’s real or not
41. Being easily distracted
42. Being forgetful, can’t remember
43. Nightmares
44. Worrisome thoughts

Physical – Eating
45. Food cravings
46. Eating less / more than usual
47. Heartburn / indigestion / upset stomach
48. Losing weight

Physical – Head
49. Headache(s)
50. Stabbing pain(s) in your head

Physical – Hearing
51. Hearing music others don’t
52. Ears ringing (tinnitus)

Physical – Pain
53. Backache or back pain
54. General body aches
55. Joint painf or stiffness
56. Neck pain
57. Touch feels like pain

Physical – Sleep
58. Waking up too early
59. Being fatigued / tired
60. Difficulty falling asleep
61. Waking up during the night
62. Sleeping too much

Physical – Vision
63. Trouble seeing at night
64. Being sensitive to light
65. Double/blurred vision
66. Spots, floaters,  or blind spots

Physical – Sensations
67. Your skin feels like it’s crawling
68. Feeling like you’ve gained weight
69. Sensitivity to cold
70. Sensitivity to noise, sounds
71. Smelling odors / fragrances that others don’t smell

Physical – General
72. Feeling dizzy / have vertigo
73. Your heart races or pounds
74. Hot flashes or sudden feelings of warmth
75. Losing consciousness / fainting
76. Metallic taste in your mouth
77. Muscles spasms or twitching
78. Muscle weakness
79. Seizures
80. Nausea
81. Sexual desire feeling “off”
82. Skin breaking out / acne
83. Hands or feet swelling
84. Vomiting

Now, some of them might look like they are duplicates — #3. Raging behavior should be grouped with #9. Angerrrrrr!!!, right? I’ve actually split them up because one is behavioral, and one is emotional/mood related. Just because you’re angry, doesn’t mean you’re going to have raging behavior, but anger can still be a significant problem.

One thing that struck me, as I was compiling this list over the past few years, is how many of the symptoms are physical. It almost doesn’t make sense. You injure your head, you hurt your brain, and your body starts acting up? Where’s the sense in that? Well, considering that the brain is like the command center of your body, I guess it does make sense.

The other thing that has jumped out at me, as I’ve considered this list over the years, is how the non-physical issues can often arise from the physical. Being dizzy all the time can really mess with your head, and it can make you cranky and mean and short-tempered. Likewise, having constant ringing in your ears can shorten your fuse and make you much more temperamental. And chronic pain has a way of depressing the heck out of you.

Now, not everyone with a TBI will have these issues, but lots of people will have one or more of these problems, and lots of them can come and go over time. It’s just one more handful of pieces to the puzzle that is TBI. A big handful, actually.

I must be in here somewhere…

Kind of a rough week. Started out strong after a good weekend, then my allergies caught up with me and my ears, and I’ve literally be doing a balancing act for the past three days.

Hard to stay upright. Hard to stay up-beat, when I’m constantly nauseous and I’m always feeling like I’m about to fall over.


But still I prevail… The weather is just getting too danged nice, to spend a lot of time hassling over a thing like mind-boggling vertigo. I lived with this for years, in the past, before I cleaned up my food situation. It’s just a good reminder that I need to take better care of myself, get more rest, and pay even more attention to what I eat.

Cutting out the cabs helps. But of course I’ve been eating more bread… My resolve to reform often coincides with bad behavior. The two seem to go hand-in-hand — simultaneously, in fact. I’m sure a psychoanalyst would have a field day with this tendency of mine.

Anyway, one of the really strange things about this intense vertigo I get, is that I feel like I’m losing touch with myself. Literally. The world spins and gets wavy and wobbly, and I feel like I’m leaving my body. Physically, I feel like my head is un-attached to my body, and I have a hell of a time keeping my attention focused on one thing. It takes a monumental effort to keep up with what’s going on around me, and driving is, well… interesting.

Fortunately, when I’m in a diminished state when driving, I slow down and I’m extremely careful. But it feels very strange and I don’t feel like I’m quite here.

But I must be here. Because ironically, when I feel like I’m out of it and off in la-la land, other people seem to think I’m even more present. It’s very odd. Maybe it’s the extra effort I have to put into staying present and upright that does it. But whatever the reason, nobody else seems to notice that I’m wobbly and about to fall over.

Or maybe they do notice, and I can’t tell, ’cause I’m so busy keeping myself vertical?

Anyway, it’s been very strange. I’m drinking my nasty cold-season tea, in hopes of fighting off the allergic infection and chilling out my ears.

Please, oh please, let this pass. I have an important meeting  in the morning.

Dangerously dizzy… but life won’t wait

I’ve been increasingly dizzy, the past few days. My left ear is squishy and has been making its presence felt. Pressure in my head, and fatigue… I haven’t had good sleep hygiene, for the past few weeks, and it’s catching up with me.

It’s a scary thing, because it’s so disruptive for my daily life. I have things to do and stuff to accomplish, but if I stand up too quickly or move too suddenly, the whole world starts to rush and spin and I get very sick on my stomach. It also makes me extremely irritable, so I snap out at every little thing, which makes me very difficult to deal with at times.

The only thing that really saves me, is being totally focused on what I’m doing, and not moving much while I’m doing it. Working at the computer is a perfect solution for me, because I have to sit up straight and stay focused on the screen in front of me.

The only problem is, it’s Saturday… a few days before I take off on my marathon trip to see family… and I have a whole lot to get done. Dizziness puts me in more danger of falling or having an accident. If I’m not careful, I can get in a lot of trouble. The last thing I need this holiday season is another concussion — most of my adulthood injuries have coincided with holidays, when I was running around like a chicken with my head cut off and wasn’t paying proper attention. I was fatigued and disoriented… and I fell or had a car accident. Not good.

Yes,  I need to be very, very careful, in everything I do.

I think a big part of the problem I’m having right now is the impending holiday rush. The prospect of driving through several states to see multiple families, over the course of nearly a week is making me a little nervous, and that’s setting off my schedule and my focus.

I have been doing really well with keeping to my daily exercise, which helps.  I just finished my morning workout, in fact, and I feel noticeably better than I did before it. I worked up a sweat and got my heart pumping, which in turn moved the lymph through my system to clear out the grunge. I love lymph. So basic, so essential, so useful. Without it, I’d be in a heap of trouble, and I count my blessings that I don’t have lymph drainag problems, like folks with edema do.

Anyway, I’m feeling better, and I have a full day ahead of me. But I’m pacing myself. And I’ve blocked off time this afternoon to sleep. I haven’t had a good afternoon nap in weeks, and it’s taking its toll. If I don’t nap at least once over the weekend, it catches up with me — and that’s what’s been happening.

And now I’m really dizzy, with a lot of stuff to do, and I regret doing chores last Sunday, instead of taking my nap. I had three solid hours to myself, to use as I pleased, and I frittered away the time on futzing around and doing little chores that took longer than I expected.

Ah, well,  so it goes. At least I’m aware of my dizziness, so I can accommodate it and work with it. When I’m really, really dizzy, I find that keeping my posture ramrod straight and moving very slowly and deliberately helps tremendously. Also, if I sleep a lot and drink plenty of fluids and avoid sugar, that helps, too. I’ve taken medicine for vertigo, but it didn’t help a bit. Anyway, it turns out the medicine is really just for nausea that results from vertigo, not the vertigo itself — at least that’s what the PCP I had at the time told me. Come to think of it, they could have been wrong. They were a bit of an idiot, by average standards. (And it was a scary six months in my life, when they were my primary doctor.)

But now I’ve got a pretty good PCP, and I trust them a whole lot more than the last several I went to. Trusting your doctor is good. It simplifies a lot of things, in many ways, not least of which is the office visit experience.

But more on that later. Right now, I need to stay focused on my dizziness.

Tracking back over the past week, as it’s gotten steadily worse, I have been looking for what I’ve been doing differently that has contributed to this. The one thing that I’ve been doing regularly, that is very different from before, is that I’ve been eating pieces of chocolate to keep myself going. Not just chocolate, mind you, but those little Dove chocolates with peanut butter in the middle. I thought that the peanut butter would give them more staying power, but what I’ve noticed over the past week is how much sugar is in those little puppies.

Zoinks! Who eats this stuff regularly?! They’re dangerous! Sure, they give me a little pick-me-up when I need it — like driving home late from work when it’s very dark, I’m very tired, and I’m having a hard time seeing. But I’m finding that when I eat one, I crave another one about 10 minutes later — like I spike, and then I crash and am worse off than before, so I need another “little” piece of candy to keep me going… and my system gets totally fried by all the sudden, extreme ups and downs.

Which contributes to my fatigue… and apparently my dizziness.

Not good.

So, while I’m doing my errands today, I’m going to remove the chocolates from my car — just throw them out — drink more water, eat more fruit, and be very, very careful when I’m out and about.

The last thing I need is another accident or fall.

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