About brokenbrilliant

I am a long-term multiple (mild) Traumatic Brain Injury (mTBI or TBI) survivor who had falls and car accidents and sports-related injuries in 1972, 1973, 1982-83, 1995, and most lately 2004. I never received medical treatment for my injuries, some of which were sports injuries (and you have to get back in the game!), but I have been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications for 35 of my 43 years. I’ve done it so well, in fact, that virtually nobody knows that I sustained that injury at age 8… and the folks who do know, haven’t fully realized just how it’s impacted my life. It has impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all.

Back from my 2-day reboot

Ahhhh… that’s more like it.

I just got up from a 2-hour Sunday afternoon nap, feeling like I’ve gotten the reset I’ve been needing.

My parents came to visit over the weekend, and we three really good days together. I took Friday off, and we hung out, roamed around my area, spent some time on Saturday with friends they’ve never met, who are more like extended family to my spouse and me, and made and ate good food.

I tend to really dread their visits, because there tends to be a lot of tension with my spouse, who doesn’t see eye to eye with them, politically or socially. This time there was some tension, but I spent a lot of time alone with my folks, while my spouse slept or did other things, so we didn’t have too much overlap.

And the times when there was tension, we managed to diffuse it pretty well.

Overall, I handled things pretty well. Both my spouse and my parents are very high maintenance, so I have to actively manage their activities. I have to manage my spouse, keep them relatively calm and not panicked, jump in and help them with different physical activities, and make sure they feel like they’re involved. And I have to manage my parents, because they have a tendency to pick up tools and start to cut and trim and “fix” things that don’t actually need fixing, which leaves more work for me to do later.

In the past, we’ve had a non-functioning bathroom faucet for several months, because my father decided to fix the drip without having a seat wrench.

Took me a few months to get the seat wrench — I kept forgetting to look for one — and then took me a little while to figure out how to properly use it and fix what my father broke. I felt pretty stupid wrangling with that simple tool, but there it is. What can I say? I’d never used a seat wrench before, let alone looked for one at the local hardware store.

My mother has a green thumb, and she loves to prune and dig and rearrange plantings, which is great, so long as she’s supervised. Once, she “went rogue” with a clipper and pretty much denuded one of my spouse’s favorite plants — one they’d been given for their birthday.

So much for the prized birthday present. That was a sore spot for months, because the plant in question was a centerpiece in our home and became a constant reminder of the havoc my mother can wreak, if left unattended with a clipping implement.

This time, I was “riding herd” on all three of them — parents and spouse — because my parents are starting to slip a little, mentally and physically, and my spouse has been increasingly unreasonable, hyper-sensitive and aggressive… and I didn’t feel like dealing with yet another Clash of the Titans, like we’ve had in prior years. In years gone by, they’ve practically come to blows.

And that blows.

But this time, we kept peace pretty well, and we left things on an up note, when all was said and done. My dad got to fix something that needed fixing. My mom got to plant some perennials we’ve been meaning to plant, and my spouse got to sleep almost as much as they wanted to, as well as spend some valuable time with our friends on Saturday.

Coming off the weekend, I’m feeling pretty good about the whole experience. My parents are utterly exhausting — they are go-go-go, non-stop, all the time. They’re like sharks. They never stop moving, and they can never sit still for longer than an hour. An hour is long for them. In the past, I’ve completely melted down with them, because of the constant activity, the constant movement, the frantic pace they keep up. It’s generally too much for me, and it sets off all my issues — irritability, light sensitivity, noise sensitivity, sensitivity to touch, distractability, fatigue, anxiety… you name it, they set it off.

But this time I did well with them. I kept up. And when I felt like I was starting to wear thin, I stepped away for a little bit. I went to bed early. I took breaks from them all, now and then, and I was pretty good about watching what I was eating. I ate more than I should have, that’s for sure, but it was all healthy food, so that’s something.

Yes, that’s something.

At the end of it all, I’m feeling like I did a good job of handling myself and the challenges of the past three days. I had a lot of trepidation and anxiety about how I would handle things, because in the past things have been very tense, there have been a lot of fights and tension, and for days afterwards, my spouse would go on and on about the things that my parents did and said “to” them.

But we’re all slowing down, and none of us has the old intense edge we used to. My parents have pretty much “gotten” that they don’t have the answers to everything, and now their priority is on enjoying the time they have with the people they love. Their friends and peers are getting sick and dying. Members of our family are going through very hard times. And it’s like they finally got their heads screwed on straight with their priorities in life.

That’s a relief.

And my spouse has lost a lot of their hell-bent momentum, since they got really sick about seven years ago. They’ve also been declining, cognitively, so they’re less able to kick ass and take names like before.

Basically, everyone’s decline is working in my favor. I hate to say it, but it is.

And now, as I look back on the non-stop action of the past 2-1/2 days, I feel a great sense of relief and relaxation that my parents have returned home, and I can get back to my regular life.

Of course, “regular life” means going back to work to deal with all the bullsh*t at the office, the politics, the jockeying, and all the stupid-ass competition between co-workers (who should really be collaborating, except that they don’t seem mentally capable of doing that). Well, that’s tomorrow.

Right here, right now, I’m getting my act together, figuring things out, and pretty much settling into what’s left of my weekend. It’s been a good couple of days, it’s reset my priorities again, reminded me where I come from and where I want to be heading in my life, and it’s good.

It’s all good.

 

 

 

 

Allowing myself to feel tired

Feelin’ it…

So, yesterday I got an encouraging sign that I’m on the up-swing — I was tired all afternoon.

Why is this good?

I’ve been so stressed, for so long, that I can’t even feel tired anymore. I push myself and push myself and push myself, till I am completely done and cannot even move. But even then, I don’t actually feel tired. I just feel done. Baked. Useless.

And that’s a really terrible way to live.

It’s been a week, now, since I’ve been drinking my “rocket fuel” coffee — I take1-2 teaspoons of grass-fed butter, 1-2 teaspoons of coconut oil, blend it all into a couple cups of coffee, and then drink it down. I try to drink it slowly, but my body and brain seem to crave it, so it usually gets drunk before it gets cool.

This stuff has been my saving grace all week. I’ve been adding butter and MCT oil to my coffee and tea during the day, too, and it hasn’t seemed to have hurt anything.

If anything, it is helping. A lot. And the energy I get is just phenomenal.

And when I have more energy, I am under less pressure to cram everything important into my mornings, because my afternoons are going to be a waste. When I have more energy, and I know I’m not going to run out later in the day, I can relax and just focus on the tasks at hand. I know that I can turn to my rocket-fuel coffee or tea later in the day, and get the boost I need to carry me through, so I’m not under all the crazy pressure I’ve been under for years.

Phenomenal.

What happens when I can relax? I think better. I plan better. I work better, overall. I learn better. And I can relax into a power nap in the afternoon when I need one. Or I can just relax for 20 minutes with my guided meditation, and leave it at that.

When I can relax, I can feel myself being tired, and I can let myself wind down at the end of the day. You know what I did last night? I went off to bed at 9:30. That’s a record for me. I hardly ever do that. I am hardly ever able to — I’m so wired from the day, my adrenaline is keeping me going. And going. And going.

Crazy madness.

But all yesterday afternoon, I was able to relax enough to realize just how tired I was. I was yawning all afternoon, which is rare for me. Even when I’m completely done, baked, fried, I can usually push myself through and not feel tired at all. But yesterday… I was very much aware of how tired I was, and how much I needed to sleep.

I was going to spend some time in the evening cleaning up in anticipation of company coming this weekend, but after I had my supper, I was so tired — and knew it — I just had to go to bed.

It took me about 30 minutes to settle down, but getting in bed at 10:00 and going right to sleep has been a rare occurrence for me, over the past 10-15 years. Could be I’m getting older, but the actual fact is that I’ve been too stressed out over work and everyday problems, to allow myself to feel tired, when I have been.

So, this is progress. I can actually allow myself to feel tired, now, and it’s pretty cool. The more energy I have, the less need there is for me to drive myself like a crazy person. The more energy I know I’ll have, the less need there is for me to cram everything possible into a few hours each day, because that’s the best I can expect for myself.

I know a lot of TBI survivors have to actually stop working regular jobs because of fatigue. I wish I had that option — I don’t. I’m the sold breadwinner for my family, and if I stop, we both end up on the street. So, I’ve had to keep going, no matter what. And it’s torn the living crap out of me.

Until now.

So, now I’m ready for my day. I did a slightly different version of my rocket fuel coffee and added some egg white to it, rather than taking the time and energy to fry up an egg. It wasn’t half bad. I know that butter and oil and eggs in coffee might not sound very good, but it was pretty tasty. And it gave me a much-needed boost, without taking forever to make up.

It’s all progress.

Onward.

An hour is about enough, either way

I’m working on my learning skills, these days, brushing up on things I need to know to be competitive in the workplace and move on to my next job. I’ve been working with some new approaches to old ways of doing things, and I’ve been poking around at a few other techniques I need to learn.

One of my big issues is time. I don’t have an unlimited amount of it, either in terms of available scheduled time, or available energy / attention time. I push myself pretty hard, so I can run out of steam and I end up reaching a state of diminishing returns… which then turns into a roiling, churning downward spiral of defeat and dejection, because I just can’t seem to muster my energy to learn and do anything else.

No matter how I try.

So, rather than demanding there to be four hours of unlimited time at my disposal, to work and practice and learn, I am breaking up my sessions into 45-60 minutes at a time, several times a day. I start out my days with an hour’s worth of reading and practice. Then while I’m driving to work, I think about what I’ve learned in the morning and rehearse the patterns and syntax that I need to use. If I can find the time I work on things a little bit at the office, just to refresh my memory a bit. On my way home from work, I think about things a little bit more — less than earlier, because I’m running out of steam. Then I work on things at home in the evening, mostly while I’ve got supper on – that usually takes about an hour to cook up.

So, this way, I can have 3-4 hours – and good hours, at that – of practice each day. Giving myself a short period of time to focus in really intently ensures that I will have the proper focus to really laser in. And doing it several times a day will give my brain the opportunity to train itself to see and think and do the way it needs to do.

This is how I learned how to code, 20 years ago, when I was working a “good job” that I hated. I studied on the train to and from my job, and that gave me the time I needed to learn — twice a day. I was extremely motivated, and I learned quickly that way. I also practiced on the weekends, too, and I put what I learned into action… so that I eventually found a new job in this new field that suited me. And it was good for 10 years of really nice paychecks and excellent experience.

And if I take things one little bit at a time, I can really master the individual pieces I need, and then put them all together as I go along.

And by the end of the day, I am really wiped out and ready to sleep.

So, this works out well all across the board.

And all the while, I’ve got my rocket fuel coffee and tea to keep me going. This stuff is seriously good. And the best part is, I get good energy from it, but it doesn’t keep me up at night. If anything, it eases off just about the time I’m really running out of energy and need to call it a day.

Ever since I’ve been drinking it, I’ve found it easier to get in bed before 11 p.m., which is a huge win for me.

Last night, I got about 7-1/2 hours of sleep. Up from 5-1/2 that I’d been getting earlier. Things started to turn around, when I got this extra boost from my butter-fat-charged coffee. (Make two cups off coffee, then take 2 teaspoons of Kerry Gold grass-fed butter and 2 teaspoons of coconut oil, blend them up with either a hand blender or an electric mixer until there’s a frothy foam on the top, then drink both cups of coffee – preferably slowly, because it can really give you a jolt, and some people actually get panic attacks from it – tho’ that’s more psychological than anything.)

Speaking of reading and learning and practicing, it’s time for me to focus in on my lessons for the day. I have about 45 minutes to do this.

So, onward. I have a feeling it’s going to be a pretty great day.

Rocket Fuel Coffee — It’s not for everyone

So, I shared my “rocket fuel” coffee with my spouse yesterday, and it did not go over well with them. That’s putting it mildly. In fact, they had a panic attack from the rush of energy — which was clearly more about them interpreting the rush of energy as “DANGER! DANGER!” than anything untoward in the coffee. A teaspoon of butter and a teaspoon of coconut oil… how much damage can it actually do?

I suppose for people who are sensitive to fats, it could be an issue – and I do need to be careful about how much fat I have in my diet – and there could be allergies to the butter and oil that cause issues. But even so.

My spouse’s response to the sensation of all that energy was so over the top — nearly spiraling into a full-blown panic attack — that it was pretty clearly psychological as much as physiological.

Eventually they calmed down and managed to make it through the evening without further incident. But they spent an awful lot of time fretting about their fears and “weird” sensations.

For those with a history of unresolved traumas, my butter-fat coffee “rocket fuel” recipe could be a big trigger. Especially if you associate having a lot of energy with “DANGER!! DANGER!!” I believe this is the #1 reason why people with a history of deep trauma gain weight, develop diabetes, and have a host of other sedentary lifestyle issues. They don’t exercise because the increase in energy and blood flow are associated with DANGER! of the deepest kind, and they do everything in their power to avoid having that sensation, instead of facing it head-on and overcoming it.

This is not a judgment. It’s an observation. I wish it weren’t so, but I’ve spent the last 25 years observing many people in my life with histories of deep trauma and abuse, and I see the same patterns over and over.

That issue — the unresolved trauma, and the running from the sensation of being preyed upon — seems the biggest healthcare issue of our day.

How the hell are you going to get healthy, if every cell in your body screams in terror and shuts down, when you start to feel your pulse rise and adrenaline start to flow? How will you ever get any exercise? How will you manage to extend yourself to get beyond your comfort zone and stretch your abilities?

How indeed?

Anyway, that little drama eventually subsided last night, and I am really very disappointed that my spouse can’t handle the butter-fat coffee. It gives me so much energy — and it’s the right kind of energy. It’s really what they have been wanting and jonesing for. They said so themself. Maybe they can have a little sip — start out more slowly and move up… I just get so tired of them running from every temporary inconvenience, for the sake of feeling “safe”.

Sometimes you have to work through a little temporary discomfort to reap the big prizes. That’s what my life has taught me, anyway.

But enough about them. As much as I want to help them, if I can’t… well, I can’t. I need to focus on my own progress, my own orientation, my own perspectives. That’s what I can influence. That’s what I can improve.

And so I am.

I’ve been working hard on my tech skills, learning new techniques and approaches, and realizing just how much better I am thinking, than I was just a year and a half ago. Back in late 2012, I had a technical screening interview, and not only was I not nearly as capable as I thought I was… but I also didn’t realize how much I still had to learn, and how far I still had to go. It was crazy, really — I was interviewing for jobs, thinking that I had my act together, when I was so far from being there, it was embarrassing. But I didn’t even realize it, until I was under the microscope… and a very humiliating microscope it was, too.

Now, I’m focusing on the basics — starting at the bottom and working my way up, and it’s going much better. The things I was studying 18 months ago are much more common sense to me, and I can understand complex concepts a whole lot more easily. I think it’s a combination of being more familiar with the concepts, and also having my brain working better.

My rocket fuel coffee is certainly helping, I can tell you that. I am much clearer than I have been in a long, long time, and I have more stamina and focus overall.

Aside from the coffee, it’s pretty amazing, how much progress I’ve made — mentally and behaviorally — in just 18 months. I’ve been feeling like I’m sluggish and falling behind, feeling like I’m never going to get ahead, and my desired future is so far out of reach, it’s not even worth it to think about moving forward. But now that I’m digging into the skills thing and focusing on that (rather than concentrating on how unhappy I am with my situation), I’m realizing that my brain is working better.

Things that used to baffle me, now make a lot of sense. And looking back on the code I wrote, years ago, I can see that I wasn’t nearly as good as I thought I was. And I can see that I’m actually better now. I can order my thoughts more clearly, I can manage the “flow” of appropriate or distracting thoughts in my head much better, and I can tell when I’m at an impasse and need to step away and try something completely different.

And looking back, I am really glad I did not make a move to another job in the past, because no way was I ready. I just didn’t have my act together, even though I was convinced that I did. Things broke down in the interviewing and screening process for a reason — I just wasn’t ready, yet.

I’m not sure I’m ready now… but I’m getting there. I still have a fair amount to learn. And the beauty part is, I actually am learning.

It’s pretty amazing, actually. The feeling of being able to read words again and make sense of them… the feeling of being able to type things up and try them out… the feeling of seeing things that I’ve written come to life on the screen in front of me… I haven’t felt this great and hopeful for years. And I feel like I’m back on the good foot after so, so long. Almost 20 years ago, I was in this position — tooling up my skills to get the hell out of a job situation that just did not suit me. Where I was, job-wise, was totally insane, and I knew I needed to get out. Just like right now.

There are so many similarities between where I was back, in 1995, and where I am now, it’s wild. Only this time I have more perspective and more experience, so I can make my move to a whole different level. A whole new level. I know the industry I’m in much better, and I have decades of experience behind me. The best part is, employers who pay good money are getting pretty sick and tired of slackers, and they’re looking for folks with good work ethics and years of experience.

Like me.

The beauty part is, I’m actually in a good position to do this — I have tweaked my daily routine so that I have a couple of hours to learn and experiment, first thing in the morning. And I have cut out so many distractions from my daily life, that I have time to spend on my skills. I have also discovered this rocket fuel approach, which I can also do with tea (so I’m not wrecking my sleeping patterns with drinking coffee after 2 p.m.). I put some grass-fed butter in my tea, melt and stir it in, and when I drink it, I get another huge boost of energy that doesn’t get me all wired — it just keeps me going.

And then I can get to sleep at a decent hour. Last night I was in bed at 10:30, which is huge progress for me. I could have even gone to bed earlier, if I had just given up on the logic problem that was stuck in my head. I was tired. I wasn’t wired from too much coffee late in the day. And I woke up today at 6 a.m., which means I got 7-1/2 hours of sleep — more than I’ve been getting, lately. I could have easily gotten 8 hours, I believe.

“Rocket fuel” tea might be my ideal solution for late-in-the-day energy crises. I can do this and keep myself supported AND not get myself so caffeinated that I can’t get to sleep at a decent hour.

But anyway, the day is waiting. I’ve got a full docket today, and it’s going to be quite busy.

I’ve found a happy medium, however, where I frankly don’t really care about all the stress and strain. I do the best I can, and I trust what I’ve done. I don’t stress over not being able to complete everything, because I know full well that the workload they have on us is humanly impossible — and they do it on purpose, to just see how far they can push us.

I feel a rant coming on, so I’ll step away from it and just get back to “my happy place” of not really caring, one way or the other, whether things turn out well for the company or not. They clearly don’t care about my well-being, so why should I care about theirs?

Self-protective indifference works… for the time being. Soon — in the not so distant future — I’ll be in a position where I can afford to care again.

But right now is not one of those times.

Right now is the time for me to take care of myself, brush up on my skills, and do what I need to do for myself.

Onward.

Knowing when to call it a day

I had a pretty long day, today. I’ve been wrangling with some logic problems I’ve been studying, and I’m not getting any closer to a solution (I think).

So, it’s time to pack it in, get some rest, and hopefully the answer will emerge in the next few days.

Bottom line is, if I’m tired, I’m not going to be thinking that well, anyway, so I might as well make the most of the opportunity and sleep.

Just sleep.

Tomorrow is another day.

TBI Recovery – Never mind the bullocks

When it comes to TBI recovery, good help is hard to find.

Doctors don’t know enough, and a lot of them aren’t aware that they don’t know enough.

Friends and family “just don’t get it”.

Co-workers and colleagues…? You’re probably better off not mentioning your situation to them.

You have to be your own advocate. You have to lobby for proper care.

This is extremely difficult for TBI survivors.

So, we have to help ourselves.

Fortunately, we live in a time when we have practically free access to a wide range of information. Even if you don’t own a computer, if you have access to one at a local library, you can get online for free and do some Googling.

Of course, there are downsides to this – namely, the sheer volume of information, and the fact that not all info can be trusted.

But you can’t let that stop you. If you want the truth, you need to go out and get it. Nobody is going to find it for you. That’s one of the big lessons of TBI – you tend to be pretty much on your own.

Of course, there are upsides to this – namely, not having to explain yourself to a clueless advocate… being free to make up your own mind about things… and being able to move at the pace you want to move at.

The important thing is that you just keep moving. Never mind the bullocks, never mind the setbacks. You just have to pick yourself back up and get going again.

 

 

Treatment that changed TBI symptoms Part 1

brokenbrilliant:

Low energy? Feeling drained after TBI/Concussion? It might be your endocrine system. This is a great article that could help relieve a lot of suffering.

Originally posted on braininjuryselfrehabilitation:

Who would ever think after nearly two decades … precisely 18 1/2 years one would get their life back?  Was it answer to prayer?  Was it prayer that kept one alive?  With certainty, it was both. This treatment and diagnosis is common to traumatic brain injury. Sadly, most do not know about it.  I did not know about it. Many TBI patients, families and even healthcare professionals do not know it.

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Modern technology is great when it works … Technology Tolerance Test

brokenbrilliant:

Computer problems? You’re not alone…

Originally posted on braininjuryselfrehabilitation:

Over the past several years we’ve become increasingly dependent upon home computers, cell phones, iPods, iPads, Tablets among other devices.  They provide instant answers, music, directions, and nearly everything at our finger tips.   When these devices quit working for some unforeseen reason life comes to a stand still and suddenly we are lost, looking for answers and trying to problem solve.

This isn’t a problem exclusively for those with brain injuries, brain dysfunction, and chronic illness.  Everyone using these devices comes across the same situation! 

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The TBI/Concussion Energy Crisis – Part 2 of 2

This is Part 2 of a long post that I’ve split into two parts. The first part is here:

Running on empty?

Long-term outcomes after mild traumatic brain injury — and persistent post-concussion syndrome that doesn’t resolve in the usual couple of weeks — have baffled researchers and practitioners for a long time, but to me it makes perfect sense. There is a cumulative effect of stress and strain that comes over time. There’s plenty of research about the long-term effects of chronic stress. But there doesn’t seem to be a lot of research about the levels of stress among mild TBI and concussion survivors.

Everybody seems to think things just resolve. And they don’t seem to think it matters much, that we are no longer the people we once were. They don’t seem to realize what a profound and serious threat this is to our sense of who we are, and our understanding of our place in the world. At most, it’s treated like an inconvenience that we’ll just see our way through with time.

But it’s bigger than that. Losing your long-held sense of self when you’re a full-grown adult, with a full docket of responsibilities and a whole lot invested (both by yourself and by others) in your identity being stable, is a dire threat to your very existence. It is as threatening to your survival, as surviving an explosion, a flood, an earthquake, or some other catastrophe that nearly does you in.

It’s traumatic. But because it’s not over the top and in your face and dramatic — and it doesn’t register on most imaging or diagnostic equipment — people think it just doesn’t matter.

Or that it doesn’t exist.

Frankly, the professional community should know better — especially those who work with trauma. They, of all people, should know what trauma does to a person — in the short and long term. I suppose they do know. They just underestimate the level of stress that comes from losing your sense of self and having to rebuild — sometimes from scratch. I’m not even sure they realize it exists.

But they do exist. Dealing with the daily barrage of surprises about things not working the way they used to… it gets tiring. Trying to keep up, takes it out of you. I know in the course of my day, I have to readjust and re-approach many, many situations, because my first impulse is flat-out wrong. I have to be always on my toes, always paying close attention, always focused on what’s important. Always reminding myself what’s important. I have to perpetually check in with myself to see how I’m doing, where I’m at, what’s next, what I just did, how it fits with everything else I’m doing… Lord almighty, it takes a lot of energy.

What’s more, those stresses and strains are made even worse by being surrounded by people who don’t get how hard I’m working. I swear, they just have no clue — my spouse and my neuropsych included. They seem to think that this all comes easily to me, because I do a damned good job of smoothing things over and covering up the turmoil that’s going on inside of me. I have trained myself — through a combination of techniques — to at least appear to be calm in the midst of crisis. Even when things are falling apart around me and inside me, even when I am at my wits’ end and am about to lose it, I can (usually) maintain a calm demeanor and chill out everyone around me.

Heaven knows, I’ve had plenty of practice over the years. If I hadn’t learned to do this, I would probably be in prison right now.

No, not probably. I would be in prison. I like being free and un-incarcerated, so I’ve learned to hold my sh*t.

Which is where sleep and proper nutrition and exercise come in. Because after years of thinking that sharing my experience with the ones closest to me would enlist their help, I’ve realized that doing that will never ever achieve that goal. People just don’t get it. Even my neuropsych doesn’t get it. Everyone has this image of me as I present to them, which is totally different from what’s going on inside of me.They seem to make assumptions about how I am and what I am and what life is like for me, that have nothing to do with how things really are.

Inside, I have a ton of issues I have to manage each and every day. Today, it’s

  • confusion & disorganization
  • anxiety
  • irritability
  • neck, back and joint pain
  • noise sensitivity
  • dizziness
  • ringing in my ears that’s not only the high-pitched whine that never goes away, but is now accompanied by intermittent sounds like a tractor-trailer back-up alert beep. Nice, right?

And that’s just for starters. Who knows what will happen later today.

But I’ll stow the violins — the point is, I really can’t rely on others to figure things out for me — even the trained professionals. I can’t rely on them to understand or appreciate what my life is like from day to day. I need to rely on myself, to understand my own “state” and to manage that state on my own through nutrition, adequate exercise, rest… and to advocate for myself to get what I need.

I have to keep those needs simple — rest, nutrition, exercise — and not complicate matters. Getting more elaborate than that just works against me. It’s hard to explain to people, it gets all jumbled up in my head, and the other people try to solve problems they don’t understand, in the first place.

On the one hand, it can get pretty lonely. On the other hand, it’s incredibly freeing. Because I know best what’s going on with me, and I know I can figure out how to get that in place.

The bottom line is — after this very long post — TBI and concussion take a ton of energy to address. It’s not a simple matter of resting up till the extra potassium and glucose clear out of your brain. There are pathways to be rewired, and they don’t rewire themselves. Depending on the nature of your injury — and a diffuse axonal injury that frays a ton of different connections, even just slightly, can introduce a wide, wide array of frustrations and hurdles — you can end up spending a ton of time just retraining yourself to do the most basic things. Like getting ready for work and making yourself breakfast without missing any important steps (e.g., taking a shower or turning off the stove).

And when you’re trying to rewire your brain and retrain yourself to get back on track, at the same time you’re trying to maintain your life as it once was… well, that’s a recipe for a whole lot of hurt, if you don’t give yourself the energy stockpiles you need to move forward, and if you don’t take steps to regularly clear out the gunk that accumulates in your physical system, as a result of the stresses and strains of the rewiring process.

That being said, I wish that someone would do a study on the stress levels of concussion and other mild traumatic brain injury survivors. We need to collect this data, in order for professionals to better understand us and our situations, and to better know how to treat us.

For the time being, however, I’m not holding my breath. I know what works for me, with regard to my recovery — having someone non-judgmental to talk to about my daily experience, keeping records of my daily life so I can self-manage it, regular exercise, pacing myself, good nutrition, intermittent fasting, keeping away from junk food, adding more high-quality fats and oils to my diet, and getting ample sleep with naps thrown in for good measure.

Those are really the cornerstones of my recovery. When I do all of them on a regular basis, I get better. If I overlook any one of them, I slide back in my progress. It’s an ongoing process, for sure.

The TBI/Concussion Energy Crisis – Part 1 of 2

This is Part 1 of a long post that (out of consideration for your time) I’ve split into two parts. The second part is here:

Running on empty?

I’m having my butter-fat coffee this morning, thinking about how I’m going to plan my day. I have some back taxes work I have to do — I need to refile from prior years, because I messed up a couple of times and I need to make it right. Fortunately, I erred to my own disadvantage before, so fixing those errors and refiling will bring in a little extra money, which I can really use.

I had a pretty restful sleep last night. However, I woke up at 5 again, which I did not want to do, and I was pretty stiff and sore from all my activity yesterday. That’s the thing about getting a sudden burst of energy — I want to use it, I want to experience it, I want to feel what it’s like to really move again. So, my body ends up moving more than it has in a long time, and then I get sore.

Fortunately, it’s a “good sore” which is a sign that I’m getting stronger and more active. This is one of those rare cases where “pain is weakness leaving the body”.

I considered getting up, because I would love to have an extra useful hour or two in my day. But I was still pretty tired, so I stretched a little bit, then relaxed with my guided imagery recording, and went back to sleep with earplugs and eye mask. I have light-blocking curtains in my bedroom, but sometimes the light gets in, so I use an eye mask. In the winter when it is cold, I wear a winter cap in bed to keep warm, and I pull it down over my eyes to block the light. But now that it’s warmer, I can’t use the cap. So, the eye mask it is.

Something about the eye mask helps me sleep — it’s a Pavlovian response, I think. I usually use it when I am trying to fall asleep during the day, and it works.  So, I have an ingrained response to relax when I put on my eye mask. And it worked. I got another hour of sleep, and I woke up feeling much more human.

Yesterday I had written about how it’s energy shortages that make me so tired, rather than lack of sleep. Well, let me just say that it’s really both that get me. If I’m over-tired, no matter how many high-quality fats I put in my body, I’m going to run out of steam. And if I don’t have enough high-quality fats in my system to convert into energy, all the sleep in the world isn’t going to fix me up.

One of the things that I think really bites mild TBI and concussion survivors in the ass, is also probably one of the most overlooked — The Energy Crisis. I think that people (especially health care providers) really don’t get how hard we have to work to reorient ourselves and retrain our brains after a mild TBI or concussion. There are so many subtle ways that our regular routines and regular thinking patterns are disrupted, and we can totally miss those subtle disruptions until they balloon in to bigger problems.

One thing after another goes wrong. Sometimes we see it, sometimes we don’t. Sometimes we catch it in time, sometimes we don’t. But so many little tiny things can be so different from before — even just feeling different — that it’s overwhelming. And the end results can be devastating — failing work performance, failing relationships, failing finances… failing everything.

For no apparent reason.

So, we end up either being hyper-vigilant and always on guard. Or we just give up and go with the flow, because who the hell can keep up with everything that’s getting screwed up? We go into either crisis prevention mode or crisis response mode. In either case, our lives are marked by crisis. One. After. Another.

And that is tiring. It is SO tiring.

So, we run out of steam. It can happen from just being overwhelmed by the sheer volume of adjustments — large and small. It can happen from feeling like we’re under constant attack from within and without — which we often are, as our internal systems are disrupted and the “ecosystem” we have been operating in starts to rag on us because we’re not keeping up. It can happen from being on a constant adrenaline rush, just trying to keep up and respond. It can come from crashes from all the junk food we eat to make ourselves feel less pain… to have more energy… or just take our minds off our troubles.  Usually, it’s all of the above.

On all levels, we’re getting hit — our mental, emotional, physical, and spiritual existence is in turmoil. And it takes a huge amount of energy to keep up.

If we don’t get enough of the right kind of sleep, and we also don’t have the right physical support to keep going, our systems short out. I believe this is why mild TBI folks can actually see worse outcomes over the long term, with problems showing up years on down the line. All the little “hits” we take in the course of each day all contribute to our biochemical overload. There’s more and more “sludge” in our system, in the form of waste from stress hormones processing, to buildup from the junk foods we eat to keep going, and that sludge adds to our overall stress levels, causing us physical stress and strain — which then contributes to our mental and emotional instability.

And years on down the line, when we “should be fine”, things really unravel, and we end up in terrible shape, without any clue how or why — and nobody there to support us, because they don’t know why either, and they probably wouldn’t believe us if we told them.

Keep reading here >>