Getting off coffee – as quickly as I can

Say it isn’t so

So, my new neuro encouraged me to get off coffee to help my migraines.

Oh, great wailing and gnashing of teeth!!! How can anyone expect me to do away with coffee?! It’s ridiculous. Why would I do away with my last real vice (aside from super-dark chocolate)? It’s the only thing that helps my mood and thinking when I’m dragging — which is a lot — generally within 4 hours of waking up and living my full-tilt-boogie life.

I scoffed at the very thought of it. Give up coffee. Yeah, right. Not gonna happen.

Why would anyone ask me to do such a thing — especially for headaches? I always thought that caffeine helped headaches, since so many headache medicines (including “Migraine formula” versions) have caffeine in them.But apparently, it’s the other way around. It doesn’t help. It hurts.

Here’s how I understand things now, based on what I’ve learned in the past 48 hours.

I found an article over at Lifehacker.com What Caffeine Actually Does to Your Brain and it was kind of sobering for me.

I’ll quote from the article:

Right off the bat, it’s worth stating again: the human brain, and caffeine, are nowhere near totally understood and easily explained by modern science. That said, there is a consensus on how a compound found all over nature, caffeine, affects the mind.

What Caffeine Actually Does to Your Brain

Every moment that you’re awake, the neurons in your brain are firing away. As those neurons fire, they produce adenosine as a byproduct, but adenosine is far from excrement. Your nervous system is actively monitoring adenosine levels through receptors. Normally, when adenosine levels reach a certain point in your brain and spinal cord, your body will start nudging you toward sleep, or at least taking it easy. There are actually a few different adenosine receptors throughout the body, but the one caffeine seems to interact with most directly is the A1 receptor. More on that later.

What Caffeine Actually Does to Your Brain

Enter caffeine. It occurs in all kinds of plants, and chemical relatives of caffeine are found in your own body. But taken in substantial amounts—the semi-standard 100mg that comes from a strong eight-ounce coffee, for instance—it functions as a supremely talented adenosine impersonator. It heads right for the adenosine receptors in your system and, because of its similarities to adenosine, it’s accepted by your body as the real thing and gets into the receptors.

Update: Commenter dangermou5e reminds us of web comic The Oatmeal’s take on adenosine and caffeine. It’s concise:

What Caffeine Actually Does to Your Brain

What Caffeine Actually Does to Your Brain

More important than just fitting in, though, caffeine actually binds to those receptors in efficient fashion, but doesn’t activate them—they’re plugged up by caffeine’s unique shape and chemical makeup. With those receptors blocked, the brain’s own stimulants, dopamine and glutamate, can do their work more freely—”Like taking the chaperones out of a high school dance,” Braun writes in an email. In the book, he ultimately likens caffeine’s powers to “putting a block of wood under one of the brain’s primary brake pedals.”

It’s an apt metaphor, because it spells out that caffeine very clearly doesn’t press the “gas” on your brain, and that it only blocks a “primary” brake. There are other compounds and receptors that have an effect on what your energy levels feel like—GABA, for example—but caffeine is a crude way of preventing your brain from bringing things to a halt.

So, basically, it’s keeping my body from putting the brakes on, disguising fatigue from the receptors that are built to realize when there’s a bunch of adenosine in my system.

That can’t be good, if I’m running out of steam and genuinely need to rest. Basically, it sounds like caffeine is tricking my body into picking up speed, when it should be doing just the opposite.

I kept reading… and when I Googled “coffee neurotoxin”, I came across this article: Coffee, caffeine, performance and you.

I quote again:

Caffeine is neurotoxin alkaloid. It stops insects eating plants. It works by being a very similar shape to adenosine, a nucleotide which is very important in energy transfer and neurotransmission. Adenosine inhibits nerve firing because it prevents the release of excitatory neurochemicals such as serotonin and acetylcholine.

The structure of caffeine as elucidated by Hermann Emil Fischer.

Caffeine settles into the adenosine receptors in the surface of neurons and in doing so, prevents adenosine itself from getting in there. Therefore no receptor activation can occur and the effect is just the opposite. With no adenosine in place to tranquilise the nerve, excitory neurochemicals will be released. Blood vessels constrict in your head and neck, the rate of nerve firing increases, your blood pressure and heart rate may rise and you experience a renewed interest and vigour when it comes to your Excel document.

Your higher cognitive function is now improved. Even what you can see is enhanced. The stimulation of nerves which use acetylcholine to send their messages affects a variety of areas in the body and brain. The visual cortex is one such area and drinking coffee causes an enhancement in our ability to process the shape, colour and location of visual objects.

 So, here’s this neurotoxin getting into my system, pumping me up and cranking out those neurochemicals. It might not seem like such a bad thing, but I’ve also heard that part of the excitory activity actually comes from the body’s defense response to a perceived threat from the caffeine, which some have called a natural pesticide. So, my system is getting a dose of pesticide and going into fight-flight mode to defend itself from this threat I’m introducing on purpose, which then makes me feel like I’m doing better, when it’s really the adrenaline that’s coursing through my veins that’s telling me that.

I don’t actually become better. I just feel like I am.

So, here’s what I take from this whole little 48-hour research investigation of mine:

Caffeine is bad stuff — especially if you have issues with fatigue and TBI. I mean, seriously, when I’m fatigued, I need to rest and recuperate, not push myself through like I always do. That fries my system and makes sure I’m in a persistent state of fight-flight. I know for a fact that that’s no good — it makes it difficult to learn and use higher cognitive functions. And the longer and more intensely I use caffeine, the more I’m stressing my system and whacking it out and jeopardizing my recovery.

In TBI recovery, you need to rebuild connections in your brain and re-learn things your system has (in)conveniently forgotten. Fight-flight marination in adrenaline impairs learning. So, if TBI recovery is dependent on learning, then coffee, tea, caffeine, even chocolate, are all a threat to my successful progress.

I had no idea.

It would have helped, had my neuro actually explained all this to me in a way I could understand. But it really took a passionate raw-food vegetarian fruitarian Australian dude living(?) in Thailand to make it clear. Here’s his expose that started turning things around for me:

Anyway, there it is. More to come on this, but for now,  it’s time to seriously cut out the caffeine.

 

So, my neuropsych HAS been listening…

Okay, so, since 2008, I’ve been seeing a neuropsych for my TBI issues, and for years, it’s felt like they had no idea what I was actually talking about. I couldn’t detect a response from them or much indication that what I was telling them was actually sinking in.

Reading their summary report to my neuro, it’s clear that I’ve been wrong about that. They have been listening, and it’s a pretty moving experience to realize that some of the limitations have been on the side of my perceptions.

They’ve been listening and getting what’s going on with me.

I just didn’t realize it. All along, I’ve been missing that piece. Oh, well. At least I’ve haven’t been erring on the side of unjustified faith. Thinking that my neuropsych has been listening, while they haven’t heard much at all, would be far worse.

So, this is good. It’s a good place to be right now. There is a chance that my insurance will no longer cover these sessions, after the end of this year, so I may be looking at another six months with them, tops.

That will make me very sad. But life must go on.

My head is all in a whirl over this realization. Time to go for a long walk in the woods.

Gearing up to read my neuropsych’s latest report

Hmmm… let’s see what’s in there

So, back in 2012-2013 I had a second neuropsychological assessment done to follow up and see where I was. It’s taken about a year and a half for my neuropsych to actually compile the results. Kind of blows my mind that it takes that long to light a fire under someone, but according to another neuropsychologist I met, that kind of delay is common.

You have to keep pestering people for the results. I had been doing that, but it wasn’t until I lined up this new neuro (who actually knows my neuropsych) that my neuropsych got it in gear and started making some serious progress.

Now I actually have a report sitting on the desk beside me, ready to read. I’m having some breakfast (after my morning workout) before I dig in.

I can’t believe it’s the weekend. I’m starting to feel some relief with the projects I’m on, because in a couple of months they’ll be behind me. And then I can transition to this new team structure they’re creating at work — more collaborative, more social, less division between all the different types of people assigned to projects. They’re putting us all together, which will be interesting. It will also keep me from isolating and avoiding people. And it will keep others on my team from doing the same. Techy people can be … well, strange. We can be very social, yet very private.

Should be interesting to see how that comes out.

I’ve got an interesting day ahead of me. I have some errands to run, but overall, my required activities are limited. My spouse is going away on a business trip next weekend, so we have to do some prep for that. Getting all their supplies together and whatnot.

And I have an interesting week ahead of me, too. I’m getting my MRI on Wednesday morning, to check my brain — especially my cerebellum. I’m doing some research on gadolinium, the contrast agent they’ll be using. The info on gadolinium isn’t great, so I’ve stopped reading it, and I’m concentrating instead on how to detox afterwards. I found some lists of foods I can eat to help my kidneys — lemon juice in water, blueberries, cranberries, grapes, turmeric, watermelon, parsley, dandelion tea. I’m starting to work with my body now, so I’m prepped and ready for Wednesday.

No sense in worrying about it — I don’t have any kidney problems (my bloodwork has always come back looking good), so my strategy is to just beef up my system ahead of time, and take extra care afterwards. A lot of the foods I’m already eating, plus using baking soda (I put a1/2 teaspoon in a big glass of water and drink it most mornings). So, I have a plan.

The week after, I have a visit with a physiatrist, who was recommended so I can check out my neck problems, and the tingling and tics that’s been going on with my face and hands. I know I screwed up my C6 and C7 nerves over the winter — not enough regular exercise — too much irregular exercise. Plus, I’ve hurt my neck a bunch of times in car accidents and other falls. So, maybe they can figure some things out.  At least check me out and see if they can find anything out of the ordinary.

I need to collect some notes for them — descriptions of my symptoms, when they started, history of accidents, etc. I’ll give them an infographic. That will probably do the trick. That’s a good idea. Then I won’t have to explain everything in words.

Anyway, back to this report. According to my neuropsych, I made amazing progress over the time between the two assessments. Phenomenal. I would have to concur. A lot of it has had to do with keeping this blog, tracking my experiences, and also making lifestyle changes with diet and exercise. Now it will be interesting to see what they have to say — which they think is important for my neuro to know.

It will be interesting to see what they’re focused on.

Time to break out the report, cozy up to my cup of hot neurotoxins, and see what’s what.

More later

Onward.

Neuro visit notes – so I don’t forget

So cool… MRIs rock!

So, I had a visit with my new neurologist, and we had a lot to cover. We didn’t have enough time to cover everything — obviously. But I think we made a good start. If this is going to be an ongoing medical relationship, then there will be plenty of more opportunity to discuss and trade information and work out how to deal with the things that need dealing with.

And how to figure out which things actually need dealing with, versus just being annoying little irritations that are inconveniences, first and foremost.

I need to get off on the right foot. And now that my regular PCP is probably out of the picture — I was told they were out for a medical issue, a few months back, and now I got a call from their office telling me I need to reschedule the physical that was scheduled for tomorrow. So, I think they might be sick. They haven’t been happy at that practice for years, and I think it just caught up with them.

I really liked that doctor — at the start. They were personable and treated me like a real person. They got lax at the end and didn’t follow through with me on test results, but I still liked them. Then again, it’s probably been time for me to find another PCP for some time. I need someone who’s actually engaged and can deal with me for the person I am. I’m not sure how I’m going to manage this, because I live about an hour away from decent hospitals, so what am I supposed to do if I come down with something or I just need to see them about something?

But I’m getting sidetracked. Back to the neurologist.

I took a list of my biggest symptoms and explanations of how they affect me, what makes them better, the severity of them, etc. My neuropsychologist had sent them an 8-page report on my history and status, and I gave them an additional 6 pages of my own information. I don’t know what my neuropsych sent to them, because they haven’t yet sent me a copy of the report, but they promised to, so…

The neuro was pretty personable, and I talked about the issues I’ve been having — the headaches that are keeping me from exercising… neck problems… the tremors in my right hand and thumb… the twitching in my left cheek. The tremors and twitching are pretty clearly “essential tremor” which is triggered by fatigue and adrenaline — check… and check. I’m usually fatigued, and I’m often adrenalized, especially when I have to keep going from being so tired. The two go hand-in-hand, and now that I understand that, I can take that off my “worry list”.

We talked about my balance issues — dysautonomia, and how it might have something to do with it. I need to look that up. It’s about the autonomic nervous system being out of whack, thanks to — sometimes — a clunk on the head. Considering I’ve gotten a bunch of concussions, I wouldn’t be surprised.

The neuro seemed quite concerned about the dysautonomia thing, and they suggested some tests. I’m really not up for that, just yet. First, the MRI and seeing a physiatrist.

So yeah, another MRI is in order. They want to check the nerves in my neck and cerebellum, as I recall (I think). They took a quick look at my imaging from 2009 (I took the CD with me and they reviewed it — with gusto), and they said my brain looks great(!). With the new headache issues emerging just within the past 18 months or so, they want to have another look.

And there’s that pineal cyst that nobody thinks is a big deal at all, but is worth checking on. As I recall, the size of it is not huge, but it’s also not tiny — it’s 4mm I think (I’ll have to check that), which is the size where people start to take notice. Originally I was told to have an MRI every 2 years to take a look at it and see if anything has changed. Getting contrast agent pumped into me every couple of years is not my idea of a good time — it makes me sick for a few days afterwards — and considering that 40% of the population is walking around with them, I really don’t feel the need to get tested that often.

But it will be interesting to see how my brain is doing, these days.

It will be really interesting to compare to my MRI from 7 years ago, and see how things are going. Maybe things are changing. I’m pretty sure they are. I suspect there’s a lot that’s changed for the better, actually. 2009 was near the beginning of my active recovery, and I’ve made incredible progress since then, so I’d like to see if there’s been a physical change to my brain — in gray matter or white matter or anything else. Then again, maybe nothing has changed. Or maybe things have gotten worse. Whatever. Whether or not it shows in the MRI, my life has improved dramatically.

I will probably get MRIs every 7-10 years for the rest of my life (perhaps more frequently as I age), just to see how things are going “up there”. I have a pineal cyst, so I don’t need to argue with folks or come up with some fancy reason for justification. The neurologist who ordered the MRI in 2009 told me to get imaged every 2 years, so there it is.

Anyway, we also talked about x-rays — looking at my back and neck. I’ve been in a bunch of car accidents and falls where I hurt my neck, so who knows what the heck is going on with me?

We talked about the sensitivities, too… just a little bit, because there was a ton of material to cover. Something about light and noise sensitivities being connected with … something I can’t remember. Maybe balance issues? That’s something I’d like to know more about, from a medical standpoint. I do know that I get better — less sensitive — when I am well-rested (which is seldom, actually). But I’d like to know the underlying mechanisms that contribute to it, so I can take some constructive action.

It’s all about constructive action. I haven’t gotten a lot of medical help in my life.  Either the doctors have been idiots, or I haven’t done a good job of communicating. In the absence of competent medical help, I’ve just been going along with my life, living as best I can. I really needed help from a neuropsych to jumpstart my recovery, and having them to talk to each week has been a significant help. But I wonder if I really need their help in a neuropsychological capacity. It’s more for the sake of having someone to talk to who is just able to have a focused conversation with me without getting all weirded out by my tics and odd behavior.

People can be so unimaginative.

I’ll need to write more about my visit, so I don’t forget. I had a good recap with my neuropsych yesterday, and it’s going to be another week and a half, till we talk again, but that’s the best I can do for my scheduling.

I also need to write this down to recap for myself and get clear on my goals for care. I need to communicate to the neuro that I’m a “lifehacker” who first learns about the root causes of conditions and then crafts a personal approach to them that works for me and enables me to maintain a sense of autonomy and independence. If we end up working together over the long run, I need to level-set up front with expectations and such. Or that may not happen for the long run, because my great insurance will change at the end of this year, and I don’t know if I’ll be able to get adequate coverage to continue with either my neuropsych or neuro or both. So, I don’t have a lot of time to waste. Gotta make the most of it now, while I can.

Well, the day is waiting, and it’s time to get moving.

Onward.

Routine and Habit – what helps you recover from TBI / PCS

When you’re recovering from mild TBI or post-concussion syndrome (PCS), having to reinvent the wheel for simple tasks is Enemy #1.

Having to re-think everything that you do, every hour of the day, is a killer. It sucks up critical mental cycles that could be used for other things, and it fills your brain with sludge from exertion. It turns you in to that Sisyphus, that mythical guy who pushed the rock up the hill each day, only to have it roll back down.

If you can create a daily/weekly routine to follow that gets you where you need to go on a regular basis, you can get on autopilot and make some real progress

That’s one of the things that’s been doing a number on me, lately – being off my routine. Starting new things and having to really rethink a lot of assumptions about how I can live my life.

Freedom is a lot closer to me, than I realized.

There’s change in the air. It’s exciting. And with that excitement comes additional work and stress. And I have additional things to do with myself that I need to create a new set of habits for.

So, I’ll do exactly that.

More to come.

Onward.

Work makes it worth it

Time to dig in

Time to dig in

I’ve been going-going-going for the past five days, and today is another going-going-going day. I’ve got a lot to fit into my hours, and nothing will wait. It’s just one of those times.

I feel like I’m coming down with a bit of a cold, so I have to take care of myself. I’ve been around a lot of different types of people, over the past days, and some of them have been sick – as in, sneezing-hacking-coughing sick.

No fun.

Also, at the height of the craziness over the weekend, I forgot to take my vitamins, so I can’t imagine that helped. I usually take Vitamin D, B-Complex, B-12, Calcium-Magnesium (it combines well with the D), and Vitamin E. But for several days, I didn’t take them. And on top of that, I ate food that I know I’m allergic to, which did not help. I usually get sick when I eat dairy, and although it’s been a few days since I had that cheese pizza (which was an incredibly bad idea) I’m still feeling the effects.

Anyway, I’ve got a lot going on these days – including my upcoming neurologist appointment on Tuesday May 5. I finally got an appointment. I need to gather my notes about my symptoms to discuss. It’s hard to know which ones matter, and which ones don’t, and I’m not sure how much detail to give. I’ll pull together high points to review, and discuss from there, I guess.

I have never had much success with doctors before. The neurologists I saw in the past were almost deliberately difficult, as though I was suspect from the start. I present well, and nobody really can tell how much difficulty I’m having, so I’ve gotten to the point of not even bothering to try to explain myself or communicate what I’m experiencing to others.

The one exception to this is with my writing. I guess I’ve  just been doing it so long, that I’m able to get more across in the written word. At least, it feels that way to me. Too bad my doctors don’t/won’t read what I have to say. There’s a lot of nuance in my situation, a lot of fluidly, shifting conditions that come and go and aren’t easily controlled with a pill or a shot. It’s subtle and it’s confusing and it changes without warning, at times.

So, what good can modern medicine / healthcare – so hurried, so oversimplified, so formula-driven – possibly do me? … Well, imaging, for one. A doctor can order a scan that will speak volumes about my situation — will it kill me, or won’t it? … But beyond that,

Talking things through with a doctor — including my neuropsych — is another story. The words just don’t get through. Which worries me and puts me on edge about this upcoming appointment in about 2 weeks. Is anything that I say going to make sense? And are they going to believe me, when I tell them what my experience is like? Will they dismiss me, like so many others? Will my time with them be wasted… and the whole thing turns into another “diagnostic adventure” that quickly devolves to a medical boondoggle?

Well, whatever happens, the bottom line is, it’s not the end of the world. If it turns out to be not-so-helpful, I’ll just walk away and get on with my life and find other ways to handle things. I have bigger issues to deal with, besides medical ones.

The main one being Work. It’s quite the roller-coaster at work, these days, with tons of uncertainty. But my Work is keeping me grounded and sane. The projects I have going are really shaping up nicely, and it’s keeping me engaged on a level I need to be engaged.

I had gotten really bogged down in other people’s “stuff” at work, but this past week has shown me that I don’t need to get stuck in what bothers them. What gets my imagination going and keeps my spirits up, is what I should be “stuck” in. Focusing on the Work I do, for its own sake, is really liberating. When I focus on doing my tasks at work, as though they are part of my own business, and as though they are taking me towards something bigger and better, it makes it all tolerable. The difficulties I go through are training for later — because sure as anything, there’s no way my life is going to get a whole lot simpler, any time soon.

So, I might as well get used to handling all the excitement.

Anyway, that’s the thought for the day — Work, in and of itself, is what truly gets me going, and it’s there that I can (and will) keep my focus today.

Onward.

Can a concussion make you not think?

Working Hard… getting nowhere

Someone found their way here to this site yesterday by searching for an answer to this question.

Can a concussion make you not think?

Why yes, yes it can.

With a concussion, your brain has got its wires crossed, and that can be distracting.  Already complex tasks become even more complicated, because in some ways your brain needs to figure out exactly what it needs to do, all over again.

Also, concussion can really do a job on your impulse control, causing you to say and do things that you used to stop and think before doing. Weird things can come out of your mouth, that’s for sure. And even you may be surprised at “who” is talking.

The other part of concussion, is that it can make you more distractable, so you may not pick up every clue and cue that is being sent your way. So, you might get distracted for a moment and not notice a signal that used to stop you from doing something — like a tone of voice or an actual traffic signal.

Your brain is working really hard, trying to sort things out… but it keeps missing things that it should get.

It’s thinking … about the wrong details, or it’s not realizing it needs to think about more information that what’s getting through.

But to everyone else (and maybe you, as well), it seems like you’re just not thinking.

{Sigh}

Not in the mood today

TBI Myth #4: The Lourdes Phenomenon (or... Don't Expect Miracles)

Monday… again?

It’s Monday, and normally this does not bother me.

But today, I’m not feeling it. I think it was the long walk in the woods yesterday that was so excellent, I did not want to come out.

That, and the continuous drudgery of my work. Right now, it’s pretty much of a slog, and I’m not feeling all that inspired or motivated. Not that it should matter — I always do what needs to be done — but today got off to a rough start, from the moment I woke up.

One of the things that’s on my mind and dragging me down, is that I have a neuro appointment coming up in a month. Glory be… I guess. I want to make sure the tremors and headaches I’m having are not something serious to be concerned over, and it would be nice if I could get a break from the pain… so I need to go. I’m actually looking forward to going.

Except that now I have to be all cogent and what-not, and be able to communicate. I haven’t been feeling all that coherent, lately, and I’ve run into some “speed bumps” with my neuropsych, who persists in interpreting my symptoms as primarily psychological, rather that neurological or biochemical or physiological. So, I feel like a head-case when I talk to them. And they’re compiling a “comprehensive” profile of me… which makes me incredibly nervous that my neuro will head off in the wrong direction and I’ll end up on yet another boondoggle, like I did 25 years ago after a car accident when I was wiped out with chronic pain.

Oh, screw it. I’m going to work. I’m going to focus on what’s in front of me, and let that be that. I’ll cross the next bridge when I come to it. Main thing is that I stay rested and drink plenty of water.

On-ward.

The long, slow road back from TBI

Making my way along this road … as best as I can

Last night, everything kind of caught up with me. For some reason, I was so desperately sad and felt like I was giving up. I don’t know where that “came from” — I had a pretty good weekend, and I took it easy, did things I wanted to do, and I got a couple of much-needed naps in.

But by Sunday night, I was just so sad… feeling washed up, small and vulnerable. And I wept inexplicable, bitter, mournful tears for some time, before I finally went to sleep.

One of the things that pulled me down was actually a good new development in my life – cutting out all the busy-ness to keep my mind and attention occupied. I have used the stress of loading up on tons of projects to not think about the pain I’m in… get my mind off the confusion I feel… give myself some direction and hope for the future. Over the past week, I have realized just how fruitless this approach ultimately is. It actually keeps me from completing anything, and the purpose of it is not to accomplish, but rather to keep busy.

Some people use video games and Facebook to take the edge off their existential angst. I use projects.

And ultimately, we all come back to the same conclusion — everything ends, in the end, and we have nothing personally to show for it. Yes, we may make some amazing contribution to the world, but honestly, you never know how your work is going to impact anyone, and you never even know if people are going to really “get” what you’re doing.

So, for me, the only thing to do is focus on the present, what’s right here in front of me, and really soak it all up as best I can, so that my life experience is full and rich.

Reading that sentence I just wrote, it sounds like I’m giving up… that this “only thing” is a capitulation of sorts… a surrender to the anonymity and pointlessness of life. But it’s not that, actually. I may feel like I’m giving up inside, but this approach is actually the thing that can save me — it’s the thing that has saved me on this road to recovery. For all the different rehabilitation techniques used by professionals, it seems to me that the most useful and most important approach — which we can all use ourselves — is to pay intent, rapt attention to the world around us, really get involved with that world, and bring ourselves along with that attention.

There are a number of reasons I believe this works.

First, it trains you to pay attention.TBI makes you extremely distractable and vulnerable to overwhelm, so you have to build back the neural networks that make that possible. It doesn’t happen overnight, so you have to keep at it, keep trying it.

Some people meditate, which has been shown to really strengthen the brain in important ways. For me, sitting for long periods of time is both uncomfortable and cuts into the free time I have to do things I love to do (instead of what I have to do for my job), so I choose to focus on the amazing world around me, instead.

Second, it slows you down, which we all need to do,TBI or no.

Too much busy-ness makes us more prone to fight-flight tendencies, and that blocks our brain’s ability to learn. TBI recovery is all about re-teaching your brain to do things that used to come naturally, so if you can’t learn because you’re constantly marinating in adrenaline and cortisol and a bunch of other stress hormones, it will make your recovery more difficult.

Third, concentrating intently for periods of time on things that you enjoy watching (or love to do) develops new pathways in our brains.

You have to take frequent breaks, so you don’t wear yourself out and make things worse in the long run, but finding something that really grabs your attention and exploring that, experiencing it, and really getting into it, does wonders for an addled mind.

And last but never least, repeating those same activities at regular intervals makes those pathways permanent in ways that restore our Sense Of Self and make us feel like ourselves again.

The things we do over and over again — the thoughts we think, the feelings we feel, the activities we pursue — all make us what we are. They let us recognize ourselves over time. Repetition promotes familiarity and mastery. Mastery feels great. Feeling a sense of mastery and familiarity does wonders for your Sense Of Self, your self-confidence, your self-esteem.

Even something as simple as sitting still and watching the colors of the sky change during a sunrise or sunset, can bring you back to yourself. You just have to do it with all your heart and soul. And get plenty of rest in the process. It is a long and winding road, and you have to be careful that you don’t fall into the cracks and chasms along the way. You’re gonna fall in, now and then, but you can pull yourself out once more. That’s just how it goes with TBI recovery.

Or maybe any recovery, for that matter.

In the end, for all the advancements in rehabilitation and all the different approaches you can take to get yourself back, there’s nothing like just living your life and letting all the lessons sink in, to get you on down that road. There’s no guarantee that the road is ultimately going to be perfect. Life does what it will do. But we can definitely develop the skills to roll with it and handle it in ways that make us proud and happy and feeling — at least somewhat — like ourselves again.

“What are your goals for care, and how can I help you to get there?”

The road to recovery … long, winding, not always with an end in sight

This is the question just about every patient wishes their doctor or other healthcare provider(s) would ask them.

But they rarely – if ever – do.

I’ve never been asked this question myself, and I wish to high heaven I had been.

It would have gotten me thinking. And that would have been a good thing. Because it would have gotten me thinking about the right thing(s), from the get-go.

What did I want from care, and how did I want my healthcare provider(s) to help me get there?

I rarely, if ever, thought in such specific terms — partly because I didn’t have much past success with A) identifying goals, and B) achieving them. Outcomes were something general, something approximate, that amounted basically to “I just want to feel better,” without ever fully realizing what “better” meant, or how it would really feel to be that way. Expecially with TBI, everything was such a blur, such a source of confusion. But if you asked me a specific question and gave me something focused to react to… then I had a fighting chance.

More than 10 years after my last TBI, I can hardly believe what a difference an active recovery has made. It’s like night and day, compared to how I was before. Yes, I still have my issues, but now I know how to handle them, and they’re not as much of a killer as they were before.

There have been specific things that have helped me:

  1. Actually realizing that I was struggling with issues related to mild TBI.
  2. Learning about the details of those issues and understanding how they affected me each day.
  3. Actively working, each day, to come to terms with them, work through them, and learn to live better, a little bit at a time. Keeping notes. Or not keeping notes. Tracking the results of things I try, and trying again when things get screwed up.
  4. Having someone to talk to regularly about my life, focusing on my progress and positive experiences. Just practicing talking to someone on a regular basis — someone who is not in my immediate social circle, who is interested in the same sorts of things that I am — philosophy, quantum physics, human performance — that has been hugely helpful for me.
  5. Blogging about the things I have a hard time discussing out loud.

I’ve been looking back and past posts I’ve done, and it’s pretty amazing how much things have improved with me over the past seven years. I started blogging in earnest in 2008, and reading what I wrote then sounds like reading what a child wrote, years ago.

I guess I was a case of arrested development, back then. Really cut off from the world, by choice as well as by default. Overwhelmed. Unsure. On the defensive about, well, everything. On my own, in more ways than one.

Anyway, I seem to have veered away from my original topic — what healthcare providers could/should ask us about what we want and how they can help. I guess my point is really that through it all, I’ve had to help myself. And that hasn’t been all bad. I’m not sure my neuropsych or doctors have had a clue what was really going on with me in my experience. Whatever. I knew. And I dealt with it, when they couldn’t (or wouldn’t).

In any case, I’m a whole lot better now. Getting back to myself. Getting back my Sense Of Self. Slow going, but at least it’s going… Whether or not anyone is offering to help me in a professional capacity.

ON-ward.