They say it’s the brain, but it’s also the body

It's ALL connected

It’s ALL connected

TBI can seriously mess you up in the head. That’s a given.

But it can also seriously mess with your physiology.

In fact, out of all the problems I’ve had over the years, the physical issues I’ve had have far outweighed the cognitive ones – if anything, they contributed to my cognitive and behavioral issues.

  • Fatigue – bone-crushing, spirit-sapping exhaustion;
  • Problems keeping my balance, which messed with my moods.
  • Heart rate increase – or decrease, as well as blood pressure changes.
  • Light and noise sensitivity.
  • Headaches
  • Body aches
  • Sensitivity to touch, which really messed with my head, as well. Imagine never being able to have human contact… it’s not much fun.
  • Constant adrenaline rush that wired me out, something fierce.

When your brain gets injured, it can affect your whole body. Because as we know, the brain is mission control for the rest of the works below the neck.

 

I lowered my heart rate from 90 to 73 in a minute

Last weekend, when I was recovering from a migraine, I checked my blood pressure and pulse:

100/59 with a heart rate of 90

Before… 100/59 with a heart rate of 90

My heart rate was up, for some reason (this was just after noontime), and my pulse seemed a little off. 100/59 might seem awesome, but it seemed a little low to me.

So, I did my breathing and checked again:

95/66 with a heart rate of 73

After – 95/66 with a heart rate of 73

I was able to bring my heart rate down to 73, which felt better, and I raised my “bottom number” on my BP to 66, which actually felt better.  I don’t want my blood pressure to get too low, and I can bring it up with my breathing.

So, I did.

I made the mistake of not checking my bp and pulse while the migraine was setting in. I’ll need to remember that later, so hopefully I can head it off at the pass… before the stabbing pain sets in.  Who knows? Maybe I can head off the other symptoms at the pass: light sensitivity, noise sensitivity, sensory issues, balance, dizziness, etc.

In any case, this is probably a good thing to do on a daily basis, no matter how I’m feeling. It might save me a lot of hassle – and it’s definitely easier and cheaper than dealing with medication.

Migraines have been under control

trepanning - migraine relief?

Fortunately, I have a better solution than this!

Summary: Controlled breathing seems to be helping me control my headaches, especially my migraines. After years and years of having constant headaches, I believe I’ve found a way to control them. This is good news, because constant headaches are no fun, and they kept me from really living my life.

I’m happy to report: My migraines have been under control – The headache part, anyway. Last week, I had a weird couple of days, where I was definitely altered… very strange feelings, colors brighter and higher contrast, everything feeling like it was moving in slow motion… I didn’t take any meds, because I didn’t have a headache, and I wasn’t actually sure if it was a migraine, or if it was just one of those things that comes up.

I will occasionally have bouts of dizziness (well, not occasionally… more often than that). And I will have my bouts of clumsiness and feeling spacey. Especially when I’m under pressure, feeling emotional, or I haven’t slept, it can be a problem, and with the last days of my current job winding down, all three of those boxes get checked off.

So, I just let it ride. And Saturday evening (after my nap, ironically), the headache set in.

But to be honest, it wasn’t nearly as bad as it has been in the past. Certainly not as bad as when I was cutting back on my coffee and went through that miserable withdrawal that lasted for days. And I actually have been feeling pretty good, without the constant headache. I think I must be doing something right.

The thing that seems to have moved the needle, is that I’m actively working with controlling my heart rate and blood pressure with controlled breathing. I can bring my heart rate down from 93 to 73 in a minute, using my technique. And I practice this on a regular basis, sometimes because I need to, sometimes out of curiosity.

It seems to be helping my migraines.

Now, the thing to be careful of, is thinking that one thing leads to another, when there could be other issues happening, too. I have also drastically cut back on caffeine, which supposedly helps headaches. That’s ironic, because I always heard that caffeine will help a headache, and to be honest, the times when I have been really struggling with the pain, having some dark chocolate or a bit of strong coffee really seems to help. If nothing else, they make me feel human again. I’ve also been exercising more regularly — at the very least, riding the exercise bike for 15-20 minutes each morning, and usually lifting light weights to boot. That could certainly be helping.

The thing is, I couldn’t exercise regularly for a number of years, because the headaches were keeping me from it. Nowadays, I still do get little headaches when I exercise, now and then, but when I do my controlled breathing and relaxation, they go away. Pretty amazing, really.

This is how it goes for me, these days:

Exercise: I get on the exercise bike and ride. I set the resistance to about medium, because I don’t want to overdo it. I’ll bump up the resistance and push myself, now and then, but when I do, I will sometimes get a little headache… which in my experience can turn into a big one — and big problems for the day. I back off on the resistance and check my pulse on the handlebars (there’s a pulse monitor there). If it is really high, I will control my breathing and bring it down. And the headache goes away.

Emotional Upset: My spouse and I have always had a “fiery” relationship. Our discussions sound like all-out fights to people who don’t know us. Our actual disagreements literally make other people run away. It wasn’t a problem for me, when I was 15 years younger (we’ve been together nearly 25 years), but in the past years, I’ve been getting more upset by these kinds of exchanges, and I’ve noticed a connection between the upset I feel and screaming headaches that come on — especially migraines. Sometimes I get so upset, I get an 8-out-of-10 headache (complete with light sensitivity, noise sensitivity, sensory issues, balance problems, dizziness, and nausea) that lasts for days. So, I need to find a way to deal with it. Now, when I get upset and I feel something coming on, I immediately “disengage” and focus on controlling my breathing. Sometimes I will go to a dark room and block out all sensory input. I can usually feel my blood pressure and heart rate going way up… but after a little while (maybe 15-20 minutes) of slowing everything down, I can “rejoin the living” and have a logical conclusion to what was probably a silly argument, to begin with. And no headache to speak of.

It’s pretty cool.

And it’s a relief.

Because now I feel like I can live my life without being in constant fear of headaches and migraine symptoms, etc.

Of course, there’s the other host of symptoms that come with migraine. Like feeling like my left side is carved out of a block of wood. But that’s also diagnostic. It tells me I need to take better care of myself, rest, get something decent to eat, and take the pressure off.

Bottom line is, I figured out a way to manage my migraines, and I’m pretty happy about it.

A good night’s sleep… and a new direction

zelinsky-eye-info

Eye-opening info on the visual systems and the brain-body connection – click to read this

I had a very taxing day, yesterday. In the midst of telling my manager that I was leaving (and having them freak out, albeit in a professionally muted way), and also trying to get work done, so that I can wrap everything up for folks before I go, I had the constant interruption of people stopping by or sending me messages or emails or whatever, so that they could find out what was up… process… congratulate me… etc.

Everyone has been really great about it. Of course, we’re only in the early stages of grief.

Denial… Anger… Bargaining… Depression… Acceptance.

We’ve only gotten to the first stage (though I know everyone handles loss differently, so the order can be mixed up), and I’m expecting anger, bargaining, and depression to ensue before long.

As long as I’m prepared, that’s the main thing.

The issue is, all the interruptions, all day long, the emotion, the storytelling — getting the sequence of things correct, so that I’m telling a consistent story and don’t sound like I’m lying to people — it’s exhausting. Trying to focus, while people are all worked up and want to talk… good grief, it’s tiring. And by the end of the day, I was wiped.

Which is part of the reason I burned supper… then had a minor meltdown when my spouse started yelling at me… then got all bent out of shape about that signalling the permanent end of my marriage, because I just couldn’t take being yelled at when I’d had such a demanding day…

I felt a nasty migraine coming on, and retreated to my bedroom with the lights off and focused on my breathing and slowing my heart rate, to head the migraine off at the pass. It worked. And my spouse came to find me to talk things through because it made no sense for me to go to bed angry. And then I went downstairs and watched “Happy-ish” which is my new favorite show, because there are so many parallels between the main character and myself.

In the end, we finished the evening on a much more normal, loving note. I got a good night’s sleep and woke up to a glorious day. Glorious! as my elderly aunts used to exclaim, when I was a kid.

I miss those venerable elders. I miss them a lot.

Anyway, while reading The Ghost In My Brain, I found a lot of similarities to the author’s experience and my own — the nausea that sets in when people are talking to you… the balance problems… the fact that driving is actually okay, when you’re not cognitively drained (it’s actually a relief)… preferring blurry eyesight to glasses that make objects sharper, but don’t address the full spectrum of vision issues… and having everything be in slow motion when talking, because there are all sorts of additional processes that need to take place in the background, while you’re working through what someone is saying to you… and then there’s the trouble planning.

The author talks about how he had regular appointments with a Dr. Miller to work through daily logistics with TBI, and he was often not 100% sure he was supposed to be there. I used to do that all the time with my neuropsych, for a number of years. I was pretty sure I was supposed to be there, but I wasn’t 100% confident, so I just went — and if I was supposed to be there, then that was cool. If I turned out to be there on the wrong day, I was prepared to turn around and go home.

Fortunately, we always had appointments on Tuesday afternoons, so it was consistent. If it was Tuesday, then I’d go to their office and wait in the waiting room. Sometimes I would sit in the waiting room for quite some time, if I got there a little late. I wasn’t sure if I should go knock on the door, or if they would come out to find me. Eventually, I got in the habit of knocking on the door — the thing is, I now realize, I would avoid it, because it hurt my ears when I knocked. Driving an hour through evening rush hour traffic really took it out of me, so my hearing was on HIGH. I’d just suck it up, though, and knock. The discomfort of the knocking, though, was actually preferable to the auditory shock of hearing their door open suddenly. It always startled me, because they have one of those noise-dampening brushes across the bottom of their door, and it makes a really loud noise when it opens.

At least, it’s loud for me.

Anyway, all the discomfort aside, I’m considering following up with a neuro-rehabilitative optometrist to see if I actually have vision issues that are making my symptoms worse. After I was hit in the head with the rock when I was 8 (a year earlier I’d fallen down a flight of stairs and temporarily lost the ability to speak), I developed double-vision (diplopia, I think it’s called). I was taken to an eye doctor who prescribed reading glasses, and I’ve worn them ever since.

In recent years, I’ve actually opted for not wearing my glasses whenever I can. It’s more comfortable for me. My glasses help me see things in the distance just fine, but I prefer to do without them. Sometimes I will even drive for short distances without my glasses (if no one is around and the road is empty and runs straight ahead). I have been thinking it’s because I just can’t stand having them on my face… but now I’m wondering if maybe they are actually making it harder for me to see, because they are not allowing my eyes to get the kind of light I need to get.

Reading The Ghost In My Brain, I am finding so many similarities — especially with how vision and balance are so closely connected — that I think it makes sense to follow up with my vision. Just get my eyes checked out for that other aspect. Apparently, there are three ways our eyes help us — regular straight-ahead vision, peripheral vision, and then connections with sleep-wake cycles, balance, hormones, neurotransmitters, posture, etc.

And I wonder if maybe so many of my logistical problems — which I have never been able to articulate well to anyone, because they make no sense to me or anyone else — might have to do with vision issues. From the time I was 8. So, for over 40 years. If this is true, and my visual systems have been impacted, then it makes a lot of sense why I perform so high on visual-spatial tests. I’ve had to develop more abilities to offset the deficits I got from those TBIs. Add to that even more blows to the head, and you’ve got yourself quite a recipe for a very interesting life.

Additionally, I’m looking into the Feuerstein Method, which is a way of “learning to learn” — finding your strengths to offset your weaknesses, and restoring functionality that I really need to have, but which has eluded me.

My neuropsych has been incredibly helpful to me, in terms of helping me sort through all the psychological clutter, helping me retrain my executive function and beefing up my gist reasoning. The thing is, they take that approach, which is psychological, and the physiological aspects fall by the wayside. At least, that’s how it seems to me. And anyway, I do a really poor job of communicating everything that’s going on with me, at times, because I have a long drive to get to them, at the end of usually challenging days, and I’ve been so stressed out over the years with all my old sh*tty jobs, that I haven’t had as much bandwidth as I’d have liked to.

I do a danged good impression of someone who’s got their act together. Because I have to. If I don’t, I can lose my job. I can lose my house. I can lose everything, and my spouse will lose it all, too. So, keeping up the appearance of being on top of everything is my top priority.

Of course, that can backfire, because then you can’t always reveal the areas where you need help, when someone is there to help you.

But anyway, that’s another blog post for another day.

Right now, I’ve got some new lines of inquiry to follow, and that’s super cool. I also have some exercises I can do to help me — Designs for Strong Minds (the site of the rehab person who helped Clark Elliott retrain his brain) has a bunch of exercises at http://www.dsmexercises.com/, and I went ahead and paid the $13.99 for the full suite of exercises. It’s easier and quicker than trying to piece things together for myself. Plus, it’s a deal, because individually, the collections of challenges are $9.99 each.

Even the most basic ones pose some issues for me, although I’ve been scoring 87% or better. A number of my choices have been lucky guesses. I won’t be happy until I can score 100% without doubts. Then I can move on to the next batch. There are exercises for NASA rocket scientists, and other pattern matching things.

And that reminds me about my Dual N-Back training I used to do regularly. I need to try that again. I was doing Dual N-Back training when I was learning to juggle. Now I know how to juggle, and I wonder if my Dual N-Back training is “sticking” as well.

New tests for a new day.

Interspersed with lots of rest.

I’m pretty happy about the progress I’ve made in my life, relative to where I was 10 years ago. Relative to where I believe I could be — and should be — I’m not happy. I know I can do more and I know I can do better. Getting there is the challenge.

And it finding out if I have vision issues that can be fixed, could be an important next step.

Onward!

To medicate or not to medicate

Choices, choices

I’m doing my leg lifts a little differently this morning. I’m going slowly, and I’m not holding onto something for balance, unless I need it. I’ve been having balance problems, lately. Or rather, my usual balance problems have been more of a problem, lately. I’ve almost fallen a number of times in the past few months — while standing up from a table and having to catch myself before I hit my head on the table and/or a nearby chair and bookcase… while starting to walk down a flight of stairs… even while just standing.

So, after talking to the neurologist and my neuropsych and making an effort to notice when I’m dangerously off balance, I’ve realized this is actually an issue. And I need to get it checked out.

So, I’m going to get some autonomic system testing done. I know that it’s been an issue with me, lo these many years, and I need to collect some actual data about it, rather than relying solely on my own observation — which tends to be spotty, because of my Swiss-cheesey memory. If I don’t write things down, it’s like they never happened. And I can’t always take the time to write everything down.

It would just start to get a bit hypergraphic, methinks.

Anyway, over the weekend, I also took some Sumatripan (generic Imitrex), which did knock out the migraine I felt coming on. But it also left me feeling drugged and dopey. I felt “off” all weekend, like I had chemicals in my system. It wasn’t like I was looking for that. I will take meds when I have to. The thing was, I was definitely feeling “synthetic” for a few days. Monday I started to feel better, but Sunday it was like I was in a druggy fog.

I can’t remember if I took the migraine meds before or after I had my dizzy spell, but as it turns out, dizziness is one of the reported side-effects of Sumatriptan. And when I looked at the list of side-effects with my neuropsych yesterday, it turns out that it’s probably not a great idea for me to be taking it, due to possible effects on my autonomic system.

See, here’s the big issue I have with meds: They are dispensed from on high, and unless I have access to someone with an advanced database of indications and contraindications, as well as sensitivity to my situation and an understanding of how things might affect me, I’m pretty much a guinea pig for finding out what’s going to happen with me. And doctors (in my experience) routinely prescribe things that they don’t fully understand. They figure they’ll have me try it out and see — essentially turning me into a science experiment.

I’m extremely sensitive to medications, but nobody seems to take that seriously. Meds disrupt my attention and concentration with the feeling they often give me. Unless I am completely laid out by illness, such as bronchitis or some other major infection that I can’t fight off on my own, the cure can be worse than the illness it’s supposed to fix.

I need to figure things out up front as much as possible, not just find something that’s worked for other people, give it a whirl, and then have my life disrupted by exciting discoveries.

Not when I can take another route to dealing with things.

So, as for the autonomic testing, both the neuro and the neuropsych are thinking I could take a pill to deal with the situation. Please. Another medication? If there is any way on God’s good earth that I can find another way to strengthen the underlying structure of my system, and build myself up that way, I’ll do that. I mean, seriously. Say I do go on a med for my balance. Is that going to help me strengthen my body to maintain balance better? People often have falls — especially later in life — because their systems are weakened, they don’t have the muscular control to catch themselves, and their reactions are slowed. If I use a pill to fix my issues, then where is the incentive to strengthen the underlying “framework” that keeps me upright?

The direction I want to take with the autonomic testing is NOT pharmaceutical. It’s structural. I don’t want additional chemicals coursing through my veins, when I can offset the issues I have with strength and balance exercises, eating right, and getting adequate rest. I need to approach this systemically, not have an intervention which may actually weaken me.

It’s pretty irritating for my neuropsych and my neuro to be so pill-happy. I’ve been on this rehab quest for about 7 years now, and my neuropsych says they’ve never seen a recovery like mine. Okay, out of all their other patients, how many of them are on medication?  I’m not. I refuse to be — especially for things that I can address and strengthen myself — or compensate for (by strengthening other aspects of my neurology).

It’s frustrating and alienating for them to be so eager to prescribe meds. Maybe they just want a quick way to relieve suffering. That impulse is noble, but the pharma aspect of it doesn’t sit well with me.

Anyway, we’ll see. I know where I stand, and I can’t let them bring me down.

Getting off coffee — After the migraine subsides

So, this is interesting. I did something to my system over the weekend, and I came down with a horrific migraine yesterday afternoon. It was the worst one I’ve had in quite some time. I’ve had some of those where you go blind in one eye and the world is spinning and you feel like you’re going to throw up, but I don’t remember the headache and weird feeling and light sensitivity ever being as bad as they were yesterday.

Holy crap.

I really didn’t expect it at all. My weekend was going really well. I was cutting back on the coffee and eating a more substantial breakfast of oatmeal and fruit, along with more fruits and vegetables throughout the day, getting more exercise (I rode the bike a long while on Saturday and Sunday and went for multiple hikes in the woods, up to the top of a nearby hill in our local conservation area), and drinking more water. I felt fantastic, with a lot of energy. I also got some roasted dandelion root tea, to try out as a substitute for coffee. I drank some on Saturday afternoon. It was nothing to write home about, and certainly not a reliable substitute for coffee. But it was worth a try. It was in the coffee aisle at the grocery store, after all.

But I woke up to a screaming migraine after my nap on Sunday afternoon. Couldn’t stand the light, head throbbing, sick to my stomach, feeling dull and drugged. Usually my headaches are just there, but this one was intrusive. Holy crap, whenever I moved, it just thrashed me. Up around an 8.5 – 9 on a scale of 1 – 10. I had a bunch of things I wanted to do on Sunday afternoon, but all I could do was sit in a dark room with my sunglasses on, soaking my feet in a hot mustard bath.

I had half a cup of coffee, ate a banana and a piece of chocolate, took a couple of Advil, and drank water (how’s that for performance enhancement?) and I started to feel better. Not as sensitive to light and not as sick. Still not great, but better than I had been. You do what you have to do.

I suspect this was partly about cutting back on coffee… increasing my exercise… changing my diet… and drinking that tea. All that change was abrupt, even if it was in a positive direction. I have a tendency to overdo things out of enthusiasm, and I think this was one of those times. I’m nervous about the MRI, and my anxiety is really rising. So, to calm myself down, I do things that give me the sense that I have some control over my life — changing my diet, exercising, trying new foods, cutting out coffee.

I’ve done some reading over the weekend about migraines, and they can be triggered by a bunch of things, including changes to diet and activity – check, and check. I know that exercise tends to start a headache with me, and I did start to get a bit of an ache while I was riding the bike — both days. But it’s usually just a headache, not the nausea, crazy feeling, and intense sensitivity to light that had me walking around the house with all the curtains drawn and wearing my sunglasses because even through the curtains, the light was too bright.

So, I did a number of things differently than usual, and I learned my lesson. I need to take things slowly — gradually — not dive in head-first, as I tend to do. Impulsiveness plus anxiety equals — surprise!

And not a good surprise, either. Right now, I’m fighting back more throbbing pain, keeping the blinds drawn, and reaching for the Advil. I don’t want to take the Imitrex, because I don’t know what it will do to me, and I have to be “on” this morning.

So, I need to take things easy and make change gradually. Not bombard my system like it’s a machine. As much as I like the idea of roasted dandelion root tea as an alternative for coffee, I don’t think it’s going to do it for me. I think it really contributed to the migraine. After the pain subsided to a relatively simple headache of “4” on a scale of “10”, I tried to drink it again yesterday evening. And the headache started up again. So, even if it’s not the sole contributor, it did not make things better for me. Dandelion is a natural diuretic, and it has other properties, too, that are used as home remedies.  I got some to get ready for my MRI on Wednesday, so I can flush out my system and not be poisoned (too much) by the contrast agent. But I just can’t do it.

Well, better I learn now, than later. That’s for sure. I’d rather get this lesson out of the way ahead of time, while I have the time to rest and recuperate. I have a busy day on Thursday, so I need to not get knocked out by the MRI on Wednesday. Most people don’t have problems with it, and they look at me like I have two heads when I tell them I get sick afterwards, but so what? I know what happens to me, and I need to get ready.

So, it’s plain water and healthy foods for me, thank you very much.

Onward.

Seldom recognized – the impact of physical issues after mild TBI

It starts in the brain and moves from there…

I’ve been working on final edits of a book I started writing in 2008-2009, about how sensory processing difficulties affect one’s frame of mind and psychological state. It’s called “The Deepest Day” and it draws from both my own experiences with light, noise and touch sensitivities, as well as vestibular (balance) issues, along with a fair amount of research I did when I was trying to understand what was going on with me… and why I felt so terrible all the time.

Sensory processing issues (or Sensory Processing Disorder / SPD) can have a lot of sources. And it’s often mixed up with autism, ADHD, and other conditions. When I first came across it, I felt like a door had been thrown wide open to a shadowy part of my life. Suddenly, so much was clear.  I did write a bunch back of posts in 2008, 2009, 2010 about sensory issues, and I’ve written a lot more about particular issues, but it all got too overwhelming to think about. I got turned around by all the talk about what it’s all about, the politics of it, the healthcare territorial disputes, and so forth, and I had to take a break and focus on other things. So I stepped away from the research and focused on my daily life. Plus, the proverbial ship of my life was running into some proverbial shoals, so I had to focus on what was in front of me, day to day.

Still, knowing one of the main sources of my distress was hugely helpful, and it made it possible for me to take corrective action that — no joke — has changed my life dramatically for the better.

I’m inclined to believe that my sensitivities are related to all the times I’ve gotten clunked on the head. I have had a number of mild traumatic brain injuries over the course of my life, starting when I was a young rough-and-tumble kid, and from what I read about TBI, sensory processing difficulties often go hand-in-hand with TBI. When I read the “laundry list” of possible symptoms/issues following TBI, all the physical issues read like a narrative of my life. For as long as I can remember, I’ve had sensitivities to noise and light and touch. I’ve also had severe balance issues for a long, long time. I never really understood what was happening with me when I was a kid — or as an adult. All I knew was, the whole world seemed like a hostile, hurtful place.

And for me, it was. When sound hurts your ears and light hurts your eyes — not always to the same degree, and not always in a predictable way — and it hurts when people touch you, the world turns into an ordeal to be survived. And that colored every aspect of my relationships to life and the people in my life.

Looking back now, I realize that people weren’t trying to harm me. They were just doing what people did. And they had no idea how much it was hurting me. If they had, they would not have done it, I’m sure. A lot of people have loved me over the course of my life — they’ve really cared for me and tried to show it in kind and caring ways. But those ways hurt me, because of my sensitivities. And because I didn’t understand the nature of my issues — nor did I know how to address them — every interaction with other people was a struggle to be survived.

When I first wrote The Deepest Day in 2009, I had to walk away from the book. Seeing in words what a usual day in the life could be like for me… it was just too much. It’s one thing to deal with constant pain and discomfort, as well as balance issues. When you’re in the midst of it, it’s just there. It’s just how things are. But when I stepped away from it and looked at everything as an observer, the sheer magnitude of my issues was simply overwhelming. And I had to stop thinking about it.

I tried to write the book in different “voices” — as both a man and a woman. I wrote it as a first-person masculine “I” speaking. Then I changed it to a masculine third-person “he/him” narrative. Then, after studying a number of different books and papers and reading different accounts, it occurred to me that the way people talk about sensory processing disorders seems to differ between men and women. The way people talked about sensitivities with women seemed in some ways to be more alarmist, yet also more dismissive. I have a big problem with the differences in quality of healthcare for men and women, and I believe that starts with how we conceptualize “men” and “women”. So, I rewrote the book in a female first-person voice… then changed it to a third-person “she/her” narrative.

I also experimented with second-person “you” storytelling, putting the reader directly in the shoes of the main character. But that felt too strained. So, now I’m rewriting it in a neutral gender (very similar to this blog), so that readers can make the main character any gender they want, and experience the book in the way that makes the most sense to them.

Anyway, gender and healthcare aside, the book is finishing up nicely, and looking closer now, I can see how close I was to being done, back in 2009 before I stepped away. It was just too much for me, I guess. And I also needed to do something about those issues.

I have done something about the issues, since then, and it’s made all the difference in the world. I will be the first (and possibly only) person to tell you in writing and for all the world to see that when it comes to TBI, sensory processing issues can be a massively complicating issue which completely mess with your head in ways that can easily be mistaken for psychological issues. In fact, sensory issues do produce psychological issues, but in a way that is hidden and hard to diagnose by the folks who are looking at your state of mind.

Healthcare providers and psychologists just don’t seem to be trained to deal with sensory processing issues, and like me, a lot of people can end up going down psycho-drama ratholes, looking for emotional or relational sources of psychological disorders which in fact have a physiological basis. That whole mind-body thing…

And when you are working with a psychologist who has a poor relationship with their own body… then things can really get clouded.

Because chances are, they’ve trained themself out of even remotely considering their physiology, when it comes to their psychology. Dealing with their body is not “safe territory” so they avoid it because their own fears and anxieties keep them from conceptualizing clearly and cleanly.

That doesn’t make our physical experience any less impactful. If anything, it just heightens it. And The Deepest Day really brings that home for me. Just thinking back to how off balance I was, how nauseated I was all time time, how turned around and dizzy and in pain I was… and then you throw in the light and noise sensitivity on top of it, and whammo — you’ve got yourself a potent recipe for a messed-up head.

Personally, think that TBI recoveries are impeded by physiological issues more often than most folks can guess. Here’s a “mind map” I created of the issues, back in 2008. It’s still relevant today.

How one thing leads to another

How one thing leads to another – click the image above to see the whole map

Those physical problems add stress to our systems, and when stress is in the mix, it makes it more difficult to learn. TBI recovery is all about learning and re-learning how to live your life effectively, and if your ability to learn is impeded in any way by environmental stress, well then, you’ve got yourself a prolonged timeline for recovery — if you have recovery at all.

That’s what was happening to me in the years after my fall in 2004. I was having more and more problems that were more and more stressful, and although my neuropsych says that my actual functional capabilities were not completely wrecked, and my difficulties arose from the way I was conceptualizing and relating to my injury and life situation (I’ll rant about that later), the stresses around the experience were adding up in ways that made things increasingly worse over time.

The impact of my injury was disproportionate to my actual injury, and after searching high and low like a possessed person for years, I can tell you exactly why that was, how it happened, and how I dealt with it all to get where I am today — happier, healthier (for the most part), and more functional than ever before in my life.

The Deepest Day is a start to an extended conversation we all need to have about the real causes of difficulties after concussion/mild traumatic brain injury. Or any brain injury, for that matter. Stroke. Aneurism. Encephalitis. Whatever. It’s all related, it all directly impacts our experience as human beings, and our Sense-Of-Self. Clinically, our injuries may not be noticeably impactful. In terms of scientific measurement, they may not even register. But something is happening, and that something really matters. For us, for the ones in our lives, and everyone who is even peripherally impacted by our difficulties (including the countries we pay our taxes to).

The longer we ignore or downplay this, the longer we make it possible for people to suffer. The more we deny the connections, the more we guarantee that this problem will persist — for us all.

The slow return to normal – and beyond

Kind of what it feels like

So, the upheaval over the accident a week ago has begun to settle down. I truly cannot imagine a worse time for life to be disrupted. It’s been a roller coaster of tears and anger and frustration and confusion, with some pretty intense extremes.

I really don’t have time for this sh*t.

I’m not being selfish and insensitive. I really feel for my spouse and all they are going through. It was a really traumatic experience, and I totally understand the reasons for the tears and the anger and all the emotional upheaval. I truly do understand. And I’m there for them to support them as they heal. And I have to deal with my own emotional stuff, too.

The thing is, life goes on, and I have a lot going on with me, just to keep the ship sailing in the right direction. I have to keep functional at work. And I have to finish my own personal projects which are a way for me to A) earn some extra money now, and B) set me up for future income in the years to come, when I cannot do this 9-5 work thing anymore.

I’m feeling less and less capable of dealing with the workaday world, each day, and I know I need a change. I’m not happy with how my brain functions at work – I’m forgetful and distracted and I am not functioning at the level I want to be at. I feel so marginal. I think it’s a combination of brain injury stuff and motivation and the general environment. When you’re dealing with TBI, you have to put in a lot of extra effort and find the “special sauce” that keeps you actively engaged in your life. Then things can go relatively smoothly (on a good day).

But if you take away the motivation and the joy, the sense of purpose and connection, everything gets harder. A lot harder. People at work are very nice, and I’ve had worse jobs, but they’re cliquish and petty and we have very, very little in common.

It becomes more obvious to me, every day, that I cannot continue to make a living, doing what I do the way I do it now. I am wearing so thin, it’s a challenge just to keep my head in the game and show up 100% each day. I really friggin’ hate the 9-5 scene, with the cubicles, the pettiness, being stuck inside all the time, and being in an artificial environment. It also makes me nuts that the people running the show don’t seem to be interested in actually running the business for profit, so when they come up short, people get cut, and it leaves me feeling quite vulnerable and exposed.

That will never do. Someone else who can’t run their business is going to dictate how my life develops? Oh, I don’t think so. It’s really wearing thin with me, and I need to get out. I’ve started counting down to when I can leave — not sure when that is, but I’ve got this countdown going in my head.

So I’ve been putting a lot of my time and energy into developing concepts and projects that can get me out of that environment. I continue to get up each day and go through the process of living my life and building the pieces I need in place for myself in the future. I’m very clear about my ongoing direction — there’s a lot of writing and publishing and “information marketing” in the cards for me — and I’m very clear about how to get there. Plus, there are a lot of resources online to help me get where I am going. So, I’m fairly confident these ideas will take flight.

It just takes a lot of work and a lot of focus. Every extra hour I have, when I’m not eating or sleeping or trying to relax for just a few hours, gets funnelled into my Great Escape. And having this car accident intrude on my focus and having to process all the drama around this event has really been sucking the life out of my activities.

I’m not feeling like I have the wherewithal to go through this whole post-traumatic process with my spouse, and deal with it along with the rest of my life. It was traumatic for me, too, because whatever happens to my spouse, happens to me, and it was pretty intense, being at the hospital and not knowing what the hell was going on. And the car being wrecked… that’s not so great, either. Working through it all… it takes time, and time is something I just don’t have much of.

The thing is, in the back of my mind, I am absolutely certain that things are going to turn around for us. My personal projects are solid and valuable, and I know a number of businesses which have a real need for them. It’s only a matter of time, till I can break free of where I’m at.

It’s the getting there that takes so much time and energy. So, I’m just keeping steady… slowly returning to normal… sitting through the tears and anger and fear and anxiety… looking for every opportunity to change and improve, picking and choosing how I spend my time.

I’m also continuing to grow and expand and develop. Getting new ideas. Following through on them. Testing and seeing what works and what doesn’t, and just staying steady. There’s none of that old haphazard approach, where I would just throw something out there and hope for the best. I’ve got plans in place, and it makes all the difference in the world.

And so it goes. I have to keep current with my sleep, as well as my nutrition. I need to keep on with the everyday, as well as reach beyond to what’s yet to come. I’m feeling really positive about the direction I’m taking.

I just need to get through the fallout from this accident in one piece.

Onward.

Endless headaches … continual symptoms… life goes on

What lies beneath – I live down there

For the past several weeks — on and off — I’ve been pulling together descriptions of what my symptoms are, Headaches, dizziness, nausea, feeling drugged and “doped up”, tremors and twitching in my face and hands… I usually don’t think about these things. I just get on with my life and don’t let them stop me.  Now that I’m putting them all down on paper to discuss with the new neuro, as well as review with my neuropsych.

You know, it’s funny… all this time, I’ve been really actively involved in my own recovery from TBI, and my neuropsych has had a very big positive influence on me, but not in ways that they probably intended. I think they’ve been thinking they’re helping me develop better skills and approaches — and they have.

But the real way they’ve helped, has been just being there reliably for me each week, to turn to and discuss matters of importance to me. Just being able to talk about my life to another person who can get it, is hugely helpful.

The only thing is, now I’m going down this path of digging into all these symptoms and complaints, and it feels very foreign to me. I spend so much of my time looking past the problems, disregarding the issues, coming up with ways to not have to deal with them explicitly – just work around them or do a variety of things to relieve them – that now I’m feeling the burn pretty intensely.

All the things I don’t talk about with others — because A) they can’t believe that it’s true, and B) they get all freaked out that I feel the way I do — is getting put down on paper. And it’s a trip.

God, I have a headache. And I’m sick to my stomach. Migraine? Who knows? And who cares?

There’s no sense in getting all depressed and upset about it. I can’t always do anything about the headaches — they don’t always respond to Advil, and the rest of the supposed “headache medicines” are like sugar pills to me. I’m much better off, just finding something I can focus my full attention on, and sticking with that.

Like my writing projects. Like the books I’m writing. Like the variety of things I have to occupy my attention. Fun things. A heck of a lot more fun than thinking about my headaches.

Anyway, life goes on, regardless. Or it doesn’t. Who knows how long any of us has, and why not make the most of it, while we can? I have my ways of dealing with headache that may even be more effective than medication. If you can’t feel the pain, you don’t have pain. So, if I can keep my focus on something that really captures my imagination and lifts my spirits, why not do that… instead of fretting about the headaches that never go away?

So long as it’s not something that’s life-threatening, why let it wreck my days? There is so much to do, so much to see, so much to experience… why let headaches stop me, when I know how to stop them?

Onward.

Stopping. Just stopping.

Sometimes you gotta hit the button

The holiday season is upon us. All the pressure to BUY-BUY-BUY and run around doing what everyone else is doing, is at an all-time high.

I feel unusually immune to it, this year. Nothing much has changed outside of me — the commercials on t.v. are all the same, the urgency is the same as in other years, and everyone is as busy as ever for this time of year. The world is the same as it ever was, things are just as messed up, we’re getting just as much news about how sh*tty the world is, along with a lot of pleas for financial help (that — just to be clear — is tax-deductible), and pressure to use the last weeks of the year to make up for the last 11-1/2 months of general negligence.

But while everyone else is running around like a chicken with their head cut off, I’m not. I feel pretty calm, actually, and I’m not running around to all the latest sales, spending hours online looking for presents, and going from party to party.

Even if I wanted to, I can’t run around and buy-buy-buy. I don’t have the money, which is kind of a relief. I’ve got to improvise. Come up with other ideas. And I will. I received a book in the mail that looks like something my mother would enjoy. And I’ve got some other ideas for things I can get for other family members for very low cost. I’m not worrying about it. I know how to handle things. And I am. Just handling them.

I also think it has a lot to do with the everyday pressure being off me, thanks to my short commute. I now have the time to get up in the morning and do what I please for an hour or so, before I start doing what the rest of the world wants me to do. I can move about, run errands at lunchtime, come and go as I please, and still get all my hours in at work. I can live my life without having to plan and think through everything I do in detail. And since I’m not a permanent, full-time employee, I don’t have to be existentially affected by changes at work and what they mean for my future.

I can just get on with my daily life and not worry about things like that. I’ll be updating my resume over the next few days, just to log the different thing I’ve accomplished at work, and make sure my resume is current and in good shape. And I’ll be taking time to just relax and enjoy myself.

Having a long commute, along with a demanding job, is a killer for me. I realize that now. I’ve had to work so hard for so long, to get where I am, but now I’m finally at a place where I’m comfortable with myself, professionally and personally. I realize that I’ve been in a good place for some time, now, but for the past number of years, I’ve been really on edge and nervous about where I am and how I’m doing.

Part of that nervousness was due to all the debt I was carrying and the pressures of just paying bills on time. I wiped out my debt over the past four years, so that pressure is off.

Another problem was that I was in a line of work that pays really well, but is inherently tension-producing, high-pressure, and precarious. Just the nature of the work — which is all about keeping current with the latest technology developments — was personally and professionally pressurizing. I got out of that side of the industry, turned my focus to people management, and now I’m in much better shape, overall.

And of course there’s the commute. I keep mentioning it, but it was such a huge factor in my life, I can’t even begin to say. Other people just take it for granted — and in fact so did I, for the last 25 years. But now that I don’t have to travel 45 minutes to an hour (or two) each way, every day, my life has literally turned around. I can rest. And even when I don’t get a full night’s sleep, it doesn’t wreck me like it used to. Long commutes used to seriously mess with my head.

No more. No more to all of the above.

The wild thing is, so much of what was making me miserable, I just took for granted. I figured that was how things were supposed to be. That’s what I knew, and that’s how I figured things were supposed to be. It wasn’t until I was pushed to my utmost limit, that I changed things up. Lots of suffering, lots of years of pain. Lots of change — needed change.

Ultimately, I’ve come out on the other end feeling strong and clear. It’s just such a huge difference. Even when my head is fuzzy and foggy, like today, my ears are ringing, my body is wracked with pain, I’m off balance, my thoughts are jumping all over the place like little jumping beans, and every little sound and light hurts me, I still feel strong and clear. And I know I can adapt and deal with the things that are getting in my way.

I’ve got a lot to do this weekend, but before I do, I’m stopping — just stopping — to take a breath, to get myself in a good frame of mind, and get clear on what needs to happen, before I charge forward into the fray. I’ve got my list — I wrote it out last night, while I was waiting for supper to warm up — and I’ll organize it for the best and most sensible direction to take, so I don’t waste time, and I can really focus on what I’m doing.

And I may even get a nap in there, somewhere.

This is good. This is very good.

Onward.