Unless we understand #TBI / #Concussion, we can’t really treat it

I’ve been more absent from this blog, this month, than I’d intended. Life… you know? It’s been very busy at work, and things are shifting with my role. I’ve had some additional training and workshops, and I’m still trying to figure out where I fit in.

Fortunately, I have help. There are a lot of folks at work who are eager to step in and pull people up to the level they need to be at. I’m not the only one who’s having some challenges navigating the new organizational structure, but fortunately, the expectation is that each and every one of us is going to have challenges and struggle somewhat.

So, that’s helpful, overall.

Getting support at work frees me up to get back to my mission: To write about long-term recovery from concussion / mild traumatic brain injury, and show that it is possible to restore your life after you’ve sustained a brain injury. There is a real dearth of information about this out in the world, and I’m (still) on a mission to do something about that.

I realize that all my … “gyrations” at work have distracted me from this mission. It’s been siphoning off all my energy and distracting me, which is the opposite of what I want and need. So, I’m settling down in my job, chilling out, and looking to my long-term future… 10… 15… 20… 30 years in the future.

And that frees me up to concentrate on the here-and-now with greater focus. It lets me get back to my mission.

The other day, while researching a post, I came across this article:

New Advice to Move More After a Concussion

When young athletes sustain concussions, they are typically told to rest until all symptoms disappear. That means no physical activity, reading, screen time or friends, and little light exposure, for multiple days and, in severe cases, weeks.

Restricting all forms of activity after a concussion is known as “cocooning.” But now new guidelines, written by an international panel of concussion experts and published this month in The British Journal of Sports Medicine, question that practice. Instead of cocooning, the new guidelines suggest that most young athletes should be encouraged to start being physically active within a day or two after the injury.

“The brain benefits from movement and exercise, including after a concussion,” says Dr. John Leddy, a professor of orthopedics at the Jacobs School of Medicine and Biomedical Sciences at the University at Buffalo, and one of the co-authors of the new guidelines.

And it makes sense to me. Because when you think about concussion / TBI in terms of what it is (an injury that disrupts connections and releases a bunch of “gunk” into the brain that shouldn’t be there), and you think about the brain in terms of what it does (processes information based on connections and makes new connections where none existed before), and you think about how the body works (moves all of that information through  – mentally and physically), then cocooning probably isn’t the thing to do for long periods of time.

TBI is a tricky thing. It’s different for everyone, of course, and something that works for one person might not work for another. But we’re all walking around in human bodies, and those human bodies function pretty much the same way.

So, if we use the principles of how the body and brain work, and we understand the nature of concussion, and we understand the dynamics of the whole scenario, new treatment approaches become clearer.

It surprises me a little bit that it took till May, 2017, to figure out how to better treat concussions. Then again, until the past 10-15 years or so, people didn’t really take “mild” traumatic brain injury that seriously. Everybody just laughed it off like it was no big deal.

Then we started to realize that onetime football players were ending up in a bad way — worse than the general public. And football players and their families started going public about their struggles. And people started talking — out loud — about stuff that used to be a source of terrible shame and embarrassment. The kinds of stuff that “you just didn’t talk about”, back in the day.

A lot has changed, thanks to research and increased awareness.

And we’re making progress in many areas.

But still, it surprises me, how much we don’t know… how much we still overlook… and how many people continue to struggle, months and years after a concussion or mTBI.

I have my own struggles, sure. A lot of the problems I had haven’t gone away completely. But after all these years of actively working on solutions, I’m doing a whole lot better at managing them, and that’s made all the difference. Maybe it’s true that brain injury can never be reversed, but then, life can never be reversed, and if we treat concussion issues as just another aspect of life that needs to be taken seriously and managed appropriately, it is very possible to have a “regular” life afterwards.

Sure, you’ll have to change some things. You’ll have to adjust. But life is full of those kinds of requirements. We don’t get a “pass” when we get injured, and the world jumps in to protect us. We just get a different set of challenges and difficulties and benefits to work with.

That being said, mental rigidity is probably one of the biggest hurdles to TBI recovery. The very black-and-white thinking that takes over when your brain gets injured can cause the injury to become even worse. Because you’re locked in a straitjacket of limited thinking. Getting your mindset out of the box and trying different things, living differently, getting on with your life, and being mindful about stuff… that can help hugely. I know it helped me more than I can say.

So, there are just a few more days left in Brain Injury Awareness Month. I’ve fallen far short of my stated plan to focus on brain injury recovery for the duration. I had such great plans… But of course… life. And my limits.

Turns out, what I’m taking away from Brain Injury Awareness Month is a reminder of how — yet again — I need to adjust my commitments and expectations and go a bit easier on myself. The thing to remember is that life goes on. And while I didn’t live up to my own expectations, the world keeps turning, the sun rises and sets, it snows and the snow melts, and the songbirds return to my bird feeder.

For today, that’s enough. It’s more than enough.

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Day out – and about

A lovely day to be out and about

Yesterday was a pretty good day. I was up early — couldn’t sleep past 4:45 a.m., and it was the first day of the long weekend, so I thought, “Screw it”, and got up to just get into my day. I had a really good morning — juggled a bit, had my breakfast, did some research for a project I’m working on, ran a bunch of important errands, took a nap, and then went to a nearby vacation area with my spouse.

I hadn’t expected the place to be crowded, since we were getting there late and the day had been gorgeous, giving people lots of reasons to be out in it, from early morning till late afternoon. The traffic was heavy, getting to the middle of the town and down to the beach, but when we arriving, people were already leaving the area in droves, heading out to dinner with tired kids.

We found a spot to park, pulled out our lawn chairs, and then I went for a walk down to the water. Got my feet wet. Splashed around a bit. Ran with the waves. And just chilled.

We spent a few hours by the water, my spouse getting some sun, and I getting some exercise. We brought snacks, and I ate too much. Then we went and got some dinner, and I ate too much again. There was a lot of fatty fried foods, and my stomach started to hurt. Gall bladder. Not too bad, but noticeable.

After that, it was getting late. We decided to go exploring a bit, so we took the long way home and took a side road back to an overlook that was marked as “scenic”. We wound around through dark stretches of backwoods, and eventually came out to a vista overlooking a wide valley with towns far off in the distance. Overhead we could see the milky way and more stars that we’d seen in a long, long time.

It was beautiful, and a lot of other people thought so, too. There were lots of cars parked in the lot, without a lot of people in sight. Every now and then, we’d see people emerge from a trail with a flashlight. There must be trails down below that give you an even better view.

We took note of where we were, and we resolved to come back again in the future – during the day, so we can explore the trails and see what everything looks like broad daylight.

Then we found a place that sold coffee, got a couple of cups and a blueberry muffin, then hit the road and got home around midnight. Not bad for a day trip. And on this trip, there was no yelling, no fussing, no arguing. Just me and my spouse making an effort to really have a good time.

I went straight to bed, when we got home. I was bushed, and I fell asleep with my bedside lamp on. Around 2:30 in the morning, I woke up with a terrible stomach ache, feeling like I was going to throw up. Gall bladder.

I got up and went downstairs to find the Pepto Bismol, which is the only stuff that ever truly works for me. There was only a little bit left, and I drained the bottle. I went back to bed, my gut still aching, feeling like I was going to throw up. I did some acupressure points I found that let you stimulate your gall bladder, so it can do its job better. Thankfully, after a few minutes it worked. My gall bladder gurgled, and I felt a little whoosh of gall bladder emptying, and my stomach ache started to ease up.

I got back to sleep and slept till 8:00, which puts me at nearly 8 hours of sleep, last night.

I’ll take it.

My gall bladder is still bothering me a bit, but I did the points on my hand, foot, and belly, and I’m starting to feel better. I need to be careful of my gall bladder, because I’m drinking my butter coffee “rocket fuel” on a daily basis, and the fats don’t always sit well with me. Yesterday, I had several servings of “rocket fuel” at two different times in the day, I ate a bunch of potato chips, and I had fried fish and french fries for dinner. And I finished up the evening with some dark chocolate and part of a blueberry that was really rich — delicious, but still more fat. Yeah, not so great.

So, I’m taking it easy today with the food. I’m eating light, because I’ve been really eating a lot, lately. More than usual. And the wrong kinds of foods. I sorta kinda went off my routine, over the past week, eating McDonalds once for lunch, and snacking on more junk. I also started eating grains again, which is not good for me. I’m sensitive to the gluten, and it messes up my stomach.

So, no wonder I was in rough shape last night. I was afraid I’d gotten food poisoning. But once my gall bladder kicked into action, I was good. So, obviously the food was not bad — just not the right kind for me.

I’ve really got to watch my eating, these days. I’ve got a lot going on at work, so I’ve been eating more for “energy”, when what I really need is more sleep. And exercise. I haven’t been getting out as much as I should, and it’s showing. I’m not gaining a ton of weight, but I’m still feeling like pretty much of a lard, which doesn’t do much for my attitude and energy levels… so I eat, to pick myself up… which is even more problematic.

So, rather than sitting here feeling bad about everything, I’m going out for a walk. I’ve got another couple of days off work, so I’m going to make the most of them.

Onward…

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 >>

The problem is not lack of sleep – it’s lack of energy

So, I made myself a different sort of coffee this morning, and the results were fantastic. Just after a couple of cups of joe that had some high-fat grass-fed butter and coconut oil in them, I felt like a completely new person.

Pretty phenomenal. And I didn’t even do the full dose.

I had high energy all morning, and I got a ton of stuff accomplished. I felt clearer than I have in quite some time — and this from just one morning.

I went out for a walk and then ran a bunch of errands, and then I came back, and was feeling a bit down. So, I had a nap, and was up an hour later to help my spouse and their business partner with some packing and hauling stuff for a trip they’re taking tonight.

After they hit the road, I made myself a big cup of tea with some butter and coconut oil, and sure enough, the energy is back again. I can’t even express how amazing it feels.

If I didn’t feel so excellent, I would weep for joy. But I’m way too happy for tears.

The thing is, I got about six hours of sleep last night. I went to bed around 10:30, but I didn’t get to sleep till around 11. Then I woke up at 5:00. Just woke up. And I was dreading today, because I have two days to do a lot of things, including some day-job work that I didn’t get done last week. But after my “bulletproof” coffee, I had such incredible energy, I felt like I’d had 8 hours of sleep, easily. And the energy lasted till about noon, when I started to drag. Six hours of steady energy is pretty danged good, considering my long-term track record.

Then I had my nap, but I was still dragging a little bit. I was feeling a bit out of it and foggy until I had my tea with the butter and coconut oil. Now I feel like myself again — with a lot of really great energy that’s not wired and jumpy. I just feel good. Like I can go for hours again. And I probably will.

So, it’s got me thinking…

I had six hours of sleep — “not enough” according to conventional wisdom — but I felt fantastic all morning.

Then I had a nap, which perked me up a bit, but still left me feeling a bit dull.

Then I had some tea with butter and coconut oil, and I’m feeling fantastic again.

Maybe the issues is not so much that I’m not getting enough sleep… as it is that my body isn’t getting enough good nutrition (high quality fats) to keep going.

Maybe the problem is not inadequate rest. Maybe the problem is available energy, and how my body is able to access and use it. Maybe my overstressed system just hasn’t been doing a good job of converting all the available resources I have into useful energy.

Maybe my brain isn’t getting what it needs to operate at peak.

But today I had a very different experience. Today I had a whole new view of what my life can be like.

More focus. More energy. More stamina. That’s been my day today. On six hours of sleep. And a nap. With two cups of “bulletproof” coffee and a cup of butter-coco-oil tea.

This means the world to me. Ever since my TBI in 2004, I have felt extremely stressed. By just about everything. That stress has been very real, and it’s cost me jobs, it nearly cost me my marriage, and it’s driven a lot of people away from me. It’s worn me down and made me feel like just a nub of a person, it’s aged me considerably, and it’s taxed me on all conceivable levels. Things got so jumbled up in my head, and I got so turned around, every day was a struggle to just figure things out. It was like trying to chop my way through the jungle with a dull machete. Just not good. Exhausting. Confusing. Frustrating. And totally unavoidable.

I had to live my life, after all, whether or not there were trails laid down for me in the jungle.

So yeah, I’ve been pretty tired for a long time. My system has been overworked, overtaxed, and I’ve been running on fumes for a long, long time.

Which is why I’m so incredibly stoked that I discovered this new way of making coffee — that actually works for me. It actually works.

Today, anyway.

I don’t want to overdo it… I’ve gotta pace myself. And it could turn out that eating all those fats doesn’t suit me for the long run, but the way I’m feeling right now, it’s like the heavens just opened up and God handed me a second chance.

Now I just need to do the right thing with it.

I’ve got some more work I need to do tonight. And again tomorrow. I think I’ll take a crack at some of it, and then save some for tomorrow. It’s all good.

And with this energy I’m feeling, I’m also better able to tell when I’m physically tired… I’m getting there.

It’s all a process, for sure. I find my life stabilizing, and now I’m ready to start rebuilding for sure. I have really gotten hammered through the years, and now all my hard work is finally paying off. So, I’ll make the most of it, and keep on keepin’ on.

It really is all good.

Onward.