The one sure way I can tell I’m not feeling well, physically

Exercise turns on my brain – in more ways than one. So does this blog.

I tend to have a hard time figuring out when I’m not doing well, physically speaking. When I’m in pain, or when I’m not getting my exercise, or I’m generally not feeling great in my body.

I can get so wrapped up in my life — like for the past three weekends, when I had so much to do, and work was full of pressure — that I don’t get regular exercise, and the pain starts to bother me… including headaches. But I’m so busy, I don’t notice. It’s all I can do, to keep up.

Of course, eventually, I don’t keep up. I get bogged down. My head doesn’t work right. My thoughts are scattered and unreliable, and I stop using my adaptations to make sure I’m okay.

The one sure way I can tell when I’m headed off the rails, is when I don’t blog here. It doesn’t take me long to write a post. It takes 10-20 minutes to put something together. And I have more than that much free time, each morning, the way I’ve structured my days. If I can’t spare 10-20 minutes to write something here, then my life has really taken a turn for the worse, and I need to get myself back on track.

That means… exercise. Like I did this morning. I had an extra-long bike ride, then I did an extra set of lifts with my little weights. And while I was doing that, I thought about how I can get more weight lifting (with machines) in my life. There are some great gyms at the different buildings of my work campus, and one of them has a pool. So, I need to avail myself of the resources and take steps. Because I’m gaining weight, losing muscle tone, and my thinking has not been as sharp as I’d like it to be.

If I can manage to blog here regularly, it means my executive function is firing on all cylinders. It means I have enough energy to get into my day. It means I’m being pro-active and taking initiative in my life. It means I have left myself some wiggle room to do what needs to be done, and that’s exactly what I need to in my daily life.

I’ve been letting myself get too tired, lately. Work has been very, very busy, and also stressful. Long hours, especially every other weekend when we have software releases and I need to work overnight hours. This weekend is one of those times, and after starting work at 8:00 a.m. yesterday, I was till 4:00 a.m. this morning, working on problems that other people caused.

I’m not in a position to change jobs, right now, so I just have to tough it out… or look for another position at the company, so I don’t have to get dragged through the horror of outside interviews and having to prove myself all over again. Toughing it out and managing things as they are is actually more appealing to me than switching positions, at this point. I like most of the people I work with. Some of them make me crazy, but most of them I love… and they love me. So, there’s that.

Can’t put a price on love, you know?

Anyway, I’m a little delirious after getting only 4 hours of sleep last night (and I need to check in later today to see how things are going with work). I just need to get back in tune with myself and get myself back on track about my physical health and my mental state — support the body, and the brain will follow suit, is what I say. That’s always been the case with my TBI-addled brain. Not until I got into regular exercise and focused on taking care of my body, did my brain start to cooperate… and heal.

Until then, all bets were off. And I was miserable.

So, it’s better if I get my act together and get my exercise back on track. And keep blogging here. Each and every day. Or at least as often as I can manage.

Concussion / mild TBI recovery is not only possible, but highly likely. As many people need to know this as I can tell in one lifetime.

ONward.

UPward.

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Back in my own space again

laptop with blank notebook and pen on a desk
Today I move at my own pace – blank slate

I’m back in my home office again.

It’s been months, since I was in here regularly. I had been working downstairs in the dining room, where I have better wireless connectivity and I can move around the downstairs without disturbing my spouse.

But nowadays, I really need to get back into my office. My study. My refuge. Everything in this room is here because I want it to be. I need it. I value it. That’s not to say I don’t want and value what’s downstairs. I do. It’s just not all mine, and it’s shared space with not only my spouse but anybody else who comes over to the house.

Granted, there are not that many people who come by, anymore. I can’t deal with having a lot of people in my home. Not anymore. We used to have company over a lot. But in the past several years, that’s faded away. I’m too tired, by the end of each week, to deal with people. And when I do have extra social activities on the weekend, it really takes a lot out of me. I hate that it does, and I do plenty to offset it — like working on my stamina and pacing myself better during the week — but it’s still an issue.

A tired brain is a cranky brain. And when my brain is cranky, it’s not much fun to be around.

Truly.

And too many other people have found out. I’ve gone ballistic on some folks whose only crime was being in my house when I was too tired to interact with them. They were friends, and they considered me a friend. But now they don’t talk to me. Oh, well. So it goes. At times, my life is easier without having a lot of regular friends in it, to tell the truth. Does that sound sad? It’s not. I need my peace and quiet. I need my rest. There’s only so much of other people I can take, even on my best days.

That being said, I’d been able to work downstairs in the dining room, because we rarely use the room for eating, except when we have company.  We use it to store things — boxes we haven’t decided what to do with, yet, as well as other packing materials. Papers and mail that isn’t time-sensitive and just needs a place to “sit” till I figure out what to do with them all. Books. Books. More books. Things we’ve moved from other rooms, to make space for our everyday lives. And there’s room for me to set up a workspace at the dining room, which is exactly what I’d done over the winter. The dining room is warmer than my study in the fall and winter, in any case, so that’s part of why I moved my “operations” there.

But not having my own space has gotten to me. I need to close a door behind me and settle into my own frame of mind — the mentality that sets in when I’m in my own space. I have my books around me, my music, my artwork, my papers. It’s all here. All my fascinations from over the years. And all my neurology info. Especially my neuro info.

So, now I’ve moved back into my study, and I’m looking out the window at the bird feeder and the falling snow. We got more snow last night, and now the wind is up, so it’s cascading off the trees, so it looks like we’re having a blizzard. We’re not. That’s just the overnight snow being tossed by the breeze. But it looks pretty intense at times.

It’s Sunday. That’s good. I have a whole day to pretty much do as I please, and that’s a welcome change. It’s not that I’m going to indulge myself… it’s that I have a lot that I want to do, and not having other responsibilities driven by others’ needs is making it possible for me to make some headway.

Write some blog posts. Read some papers. Get the word out about brain injury recovery being both possible and probable. I’m on a mission. And having my own workspace makes it easier for me to focus on that.

So, yes. Onward.

Changing plans and shifting priorities

tree growing above a rainbowI love my routines. They’ve saved my s$$ over the past 12 years. They helped me retrain my body and brain to be a heck of a lot more functional than they were in 2006. And when it comes to TBI recover, routine and repetition are my friends.

Seriously, they’re like the secret weapon against the disruptions of TBI. Just figuring out how to do things exactly the same way, over and over, till that way become ingrained and you don’t have to think about it anymore… it’s magic. And it does so much to rebuild and solidify the new connections that replace the ones that got frayed and pulled to pieces in the brain injury itself.

Every now and then, it’s good to change things up, though.

That’s where I am, now. I’ve done a lot of hard thinking, over the past weeks and months, and I realize I need to have a different focus in my daily life. I need to spend a lot less time focusing on my career and professional prospects, and spend a lot more time focusing on my health and quality of life.

I’m not gonna lie — I really had to double down on my work situations, over the past years. I was in a downward spiral of sorts, in one overly challenging job after another, working in very hostile conditions that eroded my physical and mental health. And the past 3-1/2 years have also been a real challenge, in some ways. The thing that’s made it the most challenging is that I got caught up in ideas about advancing, getting promoted, moving up in the world. And that sucked me into a vortex of caring about what other people thought of me, what other people said about me, what other people did to me at work.

And that wasn’t a good use of time. Because here I am, years later, no further along on my professional path (even set back, compared to where I was before), and just looking back at a whole lot of frustration and dead-ends.

Don’t get me wrong. I’m highly ambitious. I’m driven. That’s for sure. But at some point, being ambitious according to someone else’s rules is just a bad idea for me. I need to be ambitious according to my own rules. I need to drive towards things that matter to me — having decent relationships with people, doing my best work, learning and growing as I go — rather than getting caught up in other people’s power games.

Somehow, those games never work out in my favor. I just get played.

So, I’m pretty much over that. Time to focus on other priorities. Time to funnel my energy into things that are going to build me up, not tear me down, and pay off in the short- and long-term, when it comes to just doing a decent job.

Heck, I’m not even sure I want to get promoted, anyway, considering the kinds of people who are climbing to the top, these days. It seems like a much better use of my time to focus on my mental and physical health… learning interesting things and applying them to my life… sharing what I know…. and just having the best life possible. So long as I make enough money to support myself and I have the time and opportunity to do something truly useful with my life, that’s what matters.

And that’s where my head is at today.

Ha… we’ll see how I’m feeling tomorrow… or next week… 😉

Adding back coffee – a little at a time.

Kim-Sutton-Positive-Productivity-Coffee-and-ComputerI’ve been “off” coffee for a couple of years now.

Well, not entirely off, but severely curtailed. I went from drinking 3-4 cups a day (starting with two big cups in the morning) to barely one cup a day.

I’d start with 1/3 cup of really strong coffee, and then I’d have another small cup of strong coffee in the afternoon — preferably no later than 2 p.m., because if I drank it later, it would throw off my sleep schedule, and then I couldn’t get to sleep.

And in between, I’d eat chocolate to keep myself going. Because… chocolate. Caffeine. Sugar. Other tasty anti-oxidants in there to pump up my flagging energy.

But I had to give it up. Chocolate. Especially coffee.

What would make me do such a thing as give up my regular flow of dark and lovely caffeine? Well, all those cups were contributing to migraines — constant headaches that rarely went away. I had a non-stop headache, it seemed, for years. And I didn’t even realize it could be any other way. I figured it was just how my life was going to be, for now and evermore.

Untrue.

When I was told by a neurologist that caffeine (which includes chocolate) can actually trigger migraines, it amazed me. Here, I’d thought they actually reduced headaches. That’s what I’d been told, anyway. But the science is there — with some kinds of migraines, caffeine can actually make things worse. And discontinuing can help.

That’s what happened with me.

But lately, I’ve been reintroducing a little more caffeine (and occasional chocolate) into my days, without too much adverse effect. I’ve been having slight headaches, but nowhere near the intense ones that used to be constant with me. And since I notice them more, now, than when they were non-stop, those headaches are a good signpost for when (and how) I need to make different choices and do things differently.

Just the other day, someone had left some candy on the counter near the coffee maker at work. It was a kind I used to really love. Couldn’t get enough of it. I was able to walk past both the coffee maker and the candy all morning, but in the afternoon, as I was making my 1:30 p.m. 1/2 cup of espresso, I nabbed a few pieces and ate them slowly.

Sweet. On so many levels.

And then I drank my 1/2 cup of coffee. And I had another 1/2 cup a few hours later. No immediate headache. At least, not that I could tell.

I’ve been drinking a little more coffee, nowadays… and while I have developed low-level headaches (I have one right now), they’re not so awful that I can’t function. I’m keeping an eye on it, but so far, so good.

And the other good news is that with my regular daily exercise and eating a really healthy diet, I have been able to get to sleep, even if I have a little caffeine after 2 p.m. Sometimes I’ll have some at 4:00, and I’ll still be able to get to sleep. I think it’s because I’m really actively living my life. I’m “all in”, each and every day, and I also usually finish up the day with stretching and relaxing before I go to sleep.

That last bit — stretching my back and legs before I tuck in for the night — has actually done me a world of good. If I don’t stretch, I often find myself waking up at 3 a.m. in pain, and I can’t get back to sleep.

So, stretching before sleep is really helpful. As is relaxing before I turn off the light. Just consciously relaxing makes a huge difference. Until I learned how to do it (it didn’t come naturally), life was a whole lot harder than it needed to be.

Well, it’s Friday, and that’s a good thing. I’ve got a full weekend ahead of me, and I’m working from home today to get myself geared up. Relax a little bit. Tie up loose ends from the week. And get ready for what’s next.

It’s all good.

Onward.

Looking back, looking ahead… and trying to get some sleep in the meantime

rowboat at docks

I have been meaning to get more sleep, during this vacation. I’m able to take naps in the afternoon, which is great. I just can’t seem to get to sleep at a decent hour (before 11:00 p.m.) Part of the problem is that I just don’t want to go to sleep earlier than 11:00. I’ve got an internal clock that tells me when it’s time to sleep, and it generally doesn’t kick in till 10:45 or so.

It’s a little nerve-wracking. But I do it to myself, putting all kinds of pressure on myself to go to sleep, when I’m not really feeling that tired. And then getting up at my regular time, which lately has been anywhere between 5 a.m. and 6:30 a.m. So, I’m not always getting a full 7.5 – 8 hours, like I need to. And then I wake up irritated, because I can’t sleep through.

It’s an ongoing problem, especially during this vacation.

Well, my life is structured very differently now than it is when I’m working. I’m still doing my morning exercise, which is crucial. I’m actually doing  better with it than usual — getting both my bike ride and the weight lifting done. I just don’t move enough during the day. I move more, when I’m at the office, because, well, I’m at the office. I have to go to meetings. I have to get my lunch on the ground floor. I have to make trips to the water cooler as well as the restroom. It gets me up and around, while being at home — where everything is within easy access and just a few steps away — keeps me sedentary. Heck, I can even work while sitting/lying on the sofa, which sounds great, but is a bit of an occupational hazard.

Anyway, it’s the end of the year, and I’m kind of out of sorts. Feeling like I’m drifting, cut loose from my moorings a bit… feeling like I fell asleep in a rowboat that was tied to a dock, and then I woke up finding myself drifting out in the ocean, with the dock in the distance. The thing is, although the distant docks look familiar, and that’s where I expected to wake up, I can also see other sights in the distance.

Cities I didn’t know existed before.

Distant piers and jetties that look every bit as interesting as what I’ve known before.

Busy industrial ports that hold mysteries within their iron fortresses

And secluded beaches to explore.

Different sorts of places where people live, work, and go about their business, which are both foreign and fascinating to me.

And lighthouses to guide me along the way.

Lights… sights… sounds… And a whole world of choices out there.

When I actually have some time to catch up with myself, I can see so many more possibilities. And it’s invigorating.

But it’s also a little depressing. Because I spend so much of my time in recovery mode, just trying to right myself in the very wrong world, that I don’t have as much time as I’d like to just kick back and relax into finding out What’s Next.

I look around me at my life… And I see so much more beyond my present situation. And I also see that the resources I have at my disposal are, well, limited. I’m not complaining. I’m just saying. I don’t have all the energy in the world, and I don’t have all the patience to match it. I want to cut to the chase and get on with my life, to the best of my ability. And after all these years of really working on my TBI recovery and firming up my Sense-Of-Self, I’m finally at a point where I have a reliable idea of how “I” am going to react and behave under certain circumstances.

That’s the biggest, hairiest, most dangerous part of life after TBI — losing your Sense-Of-Self. It erodes your self-confidence. It crushes your self-respect. It makes every situation into a danger-fraught series of surprises that threaten everything you care about. And then the real trauma of TBI sets in.

I really believe that the biggest trauma in mild traumatic brain injury comes after the injury itself. There’s a steady stream of “micro-traumas” which stress out our systems and add to the fight-flight biochemical load. And unless we learn how to manage our fight-flight overload and learn how to clear out the neurochemical gunk of all that ongoing stress, mild TBI continues to take its toll. It continues to haunt us, to tax us, to load us up with invisible burdens that nobody else understands, but which are very, very real.

If you really understand the physiology of trauma (and not a lot of people know about it, let alone understand and fully appreciate it), and you understand the profound change that even a “mild” TBI brings to your entire system, all of this makes sense. You know that the subtle changes to how your system works are disorienting and anxiety-producing. You know that the body’s mechanisms for protecting itself are working overtime post-TBI, and they’re kicking in, in the most unlikely of situations. You know that the overall effect builds up, and you know that it’s cumulative.

You also know that while the effects may show up as a psychological disorder, the underlying basis is a combination of mind and body — and the body bears the burden of it all.

The thing about this whole deal is, because the body is involved, it’s possible to work with the body to turn that sh*t around. Even if your mind feels like mush (I’ve been there), even if you can’t remember what you did, just a few hours before (I know the feeling well), even if you can’t get through your morning without a detailed checklist (the story of my life for years), the body can act as a gateway to recovery.

Regular exercise helps stabilize your system. Eating the right foods (and steering clear of the wrong ones) helps your metabolism stay stable and keeps you off the blood sugar roller-coaster. Getting enough sleep lets the brain “knit itself back together”, as well as clear out the gunk that builds up, just as a result of everyday living. Plus, learning to regulate your heart rate and your blood pressure can train your overall system to get back to a stable state, even if everything feels like it’s falling apart around you.

I’m sipping the last little bit of my half-cup of coffee, as I write this. The snow from last night is giving way to freezing rain, which will fall until midday, when the temperatures start to rise, and regular rain falls. There’s always a chance that the ice buildup will take out our power, and that’s no fun. But I have wood for a fire in the fireplace, and we’ve been keeping the house pretty warm, so we’ll have some residual heat to see us through. In the past, we’ve had some pretty hair-raising experiences with losing power, and I don’t look forward to repeating them.

But I know a lot more now about keeping my physical system stable, and I’m in a much better place, mentally, than I’ve been in past years. So, I’m at much less risk than before. And knowing that relieves the pressure and also reduces the risk of my “losing it” even moreso. And that’s good. It’s awesome.

So, where was I… I’m kind of meandering, this morning, as I try to get my bearings. I’m looking back at the last year, wondering if all the effort really paid off the way I wanted it to. I’m not sure it has. Some things I started have kind of stalled. And other things I wanted to continue with have floundered, as well. In some ways, I’ve been as diligent as ever. In my day job, for example, I’ve been invested and involved in ways that have actually paid off. When I think of all the other jobs I screwed up since 2004 (and even before that), it’s kind of depressing.

So, I won’t think about them. I’ll focus on the good.

And as I look forward to my future, I see a much simpler — but much more do-able — path ahead. I’ve let go of a lot of old activities that were busy-work I picked up for the sake of pumping up my tonic arousal (the state of wakefulness in your brain) and getting my system turned “ON”. I had a handful of websites I wanted to start, a number of business ventures that seemed promising, apps I wanted to build, and novels I wanted to write. That extended experiment in busy-ness went on for 10 years or so, and it just didn’t work out, so I’ve now narrowed my focus to a few particular activities, which will actually lead somewhere.

Heck, they’ve already started to pay off. And taking the pressure off myself to go find another job… yeah, I’ve let that one go. Yes, traveling for work every few months really takes it out of me, but there’s no guarantee the next job won’t be just as much of a pain in the ass. Plus, it’s too stressful to go changing jobs every few years. I used to thrive on that experience, but now it’s just a pain in the ass. I need to look for the good in things and tweak the things that I’ve got going on… not ditch them and go looking for something better, somewhere else.

So, I guess I’ll wrap up my ramble. My morning is in free-flow, so I’m just letting my mind wander as it will, for the time being. I got my grocery shopping done yesterday. I got my meals for today prepared yesterday, too. I can’t go out and do anything, because the roads are bad. There’s no need to go anywhere, anyway. I’ll just hang out for the day… drift… make a fire, perhaps, and catch up on my reading.

And write a bit more. Because I can. I’ve got the time and the opportunity. So, yeah…

Onward.

What we lose after TBI… and what we can get back

woman standing with a leaf in front of her faceI’m feeling really grateful, this morning. I’m tired, but I’m content. I’ll have my nap later, and everything will get even better.

I spent yesterday doing some of the things I love the most: cooking, eating, writing, reading, napping, and watching football while eating non-dairy ice cream… all with my partner, who has been really struggling with mobility issues, lately.

I bought us a collapsible massage table a couple of weeks ago, so we can both take turns stretching out and do horizontal exercises without having to get down on the floor. I set it up last night for my spouse to lie out flat (major plus) and do the exercises their physical therapist prescribed. The floor has gotten too cold to lie on, plus, it’s hard for them to get up and down without pulling something or hurting. So having the table is a huge benefit. Plus – bonus – I went to bed at a decent hour after a long day of lots of work

And by the end of the day, I realized just how good I have it. I realized that, after all the years of struggle, all the years of incredibly hard work, all the pain and frustrations and perseverance, all the dead-ends, all the plans to just give up, and battling all the despair… I have come through to another side, and I am in a place where I am good.

It’s taken years for me to get to this point. And it feels like this is the first time I’m really settled into this good-ness in a way that I actually believe. I’ve spent so much of my life confused and confounded, thwarted and hurting… without much of any clue about why that was, or what I could do about it… I had started to think that’s just how things were going to end up for me.

Permanent disablement. Permanent screwed-over-ness. And I just needed to get used to the experience and accept if for what it was.

But that feeling has completely changed, just in the last 24 hours. Things are not perfect, by any stretch of the imagination. There’s a lot of stuff that’s going really, really wrong in my life — and the world in general. And there are lot of unanswered questions in my mind. Still, I feel like I’m in a state of mind (and body — fitness is so important) that I can handle whatever comes my way.

No, my thought process is not perfect. I still get turned around and confused, and lately I’ve really been struggling with memory issues and misplacing things that I can’t afford to lose. I still have my intense lows, when I completely despair and lash out at the ones closest to me. I still have my moments of feeling useless and unlovable. I still struggle with crushing fatigue and not being able to do things that plenty of other people can.

And of course, I struggle with the fact that I can’t tell people about my issues, because it will work against me in the larger world. It’s not going to help me get a better job, if I tell the hiring manager that I function best if I have a 20-minute nap at the middle of each day. That’s not part of the deal in the 9-to-5 world I operate in.

But these are all things I’m convinced I can manage effectively on my own. I can handle it. Because I have a much better sense of who I am, and what I can expect from myself.

People have said that “you can’t recover from brain injury“, but that was decades ago, and we know a lot more about brain injury than we used to. Also, we know more about how concussion really is a brain injury… and so many people have them, yet continue to live their lives.

I myself notice that there are some things I just can’t do like I used to. It’s not as easy for me to push through marathon tasks. I need to stop and take a breath… do something completely different. And it’s harder for me to remember what I was doing before I took that break. I lose things. I get lost, too. I sometimes look around and have no idea where I am — but that’s more because I tend to be so focused on what’s in front of me, that I don’t notice my surroundings, so I don’t think it’s one of those “On Golden Pond” moments where I’m literally lost and have no idea where I am, period.

I’m more forgetful about things that really matter to me. My home office is pretty much of a wreck, but in a Thomas Edison “genius-y” kind of way, and my work area has spilled into the dining room that we rarely use. I have been misplacing important documents I just can’t afford to misplace… and then scrambling to replace them. I have a harder time initiating stuff I know I need to do (like go for a swim at the pool), because it feels way too complicated and involved. And try as I might, I really mess up things I’m positive I’m going to “nail”. I’ve been feeling really ambitious about making new meals while I’m on vacation this week, but my cooking skills have really degraded, thanks to the bone-crushing fatigue and difficulty sleeping. And coordination? Yah, forget it. Don’t leave anything near the edge of a surface. I’ll knock it onto the floor, for sure.

I know I’m not as sharp as I used to be. I know I’m not as sharp as I’d like — or intend — to be. I can be downright dull, and the bummer is, I’m aware. Oh, lord, how I’m aware. It’s not the most fun thing in the world.

And yet… I’m happier now, than I’ve probably ever been. And even with all my limitations and drawbacks, I’m definitely more functional, all across the board, than I’ve ever been. I’ve got “the whole package” together, at last. Even with the TBI after-effects, the slowness and slipping, the exhaustion and intermittent sense of defeat.

See, this regaining of competence and practical functionality is the real TBI recovery I wish people would talk about. Not getting your coordination and cognitive quickness back, watching your memory and endurance dwindle, having all kinds of intense emotional ups and downs… some experts might consider those blockers to TBI recovery. They might say it means that a person has lost too much and can never fully recover from a brain injury.

But everybody on the planet has something they struggle with, TBI or no.

And in any case, the real loss for me from TBI had far more to do with my Sense-Of-Self and my sense of “agency” in the world, than any objective physical or cognitive limitation.

TBI/concussion isn’t debilitating just because it knocks out your practical abilities. It’s most impactful because it takes a chunk out of your understanding of Who You Are and How You Handle Life.

It strips our self-confidence, and in doing so, it hits us hard with a self-doubt that’s a huge source of stress and ongoing trauma. What does stress and trauma do to the human system? It makes it harder to learn. And since TBI/concussion recovery is literally an exercise in re-learning to live, so your brain can rewire with reliable connections, that loss of self-confidence is in itself a source of ongoing injury.

TBI / concussion is an injury to the Self. And until people start accepting that and dealing with that piece of things — as well as finding practical, common-sense, science-based ways to address those issues — TBI and concussion survivors will continue to suffer from their injuries as well as the limitations of the people who intend to help them.

My road back from multiple mild TBIs has been a long one. It’s taken me 13 years to get to this point (and today is the 13th anniversary of my last concussion). It’s been a grueling and winding path. Fraught with perils. It nearly cost me everything I worked so hard to earn. But I can honestly say, I’m finally on the other side.

I understand my situation. I also understand the nature of my injuries, and how they affected me. But most important of all, I understand what I can do about it. And while I do tend to whine a bit here at times, the most important thing is for me to focus on the positives and share the lessons I’ve learned, so others don’t have to suffer as terribly as I did.

TBI and concussion are “recoverable”. We might not get back every single ability, and we may be left with lasting challenges, but we can restore our Sense-Of-Self, so we can get on with living our lives to the best of our developing abilities.

We’re made to heal. We’re made to grow. Regardless.

Brain injury comes in a number of different “flavors”, but it affects us in very similar ways

Brain injury is a brain injury, and as much as we may say “each brain is different, each injury is different,” we still need to look at the ways that each kind of injury is similar to others. And the experiences we have can be quite similar.

Loneliness, isolation, confusion, not feeling like yourself, getting angry quickly, mood swings, and let’s not forget the bone-crushing fatigue and the embarrassment that comes from not being the person you used to be… They are all things brain injury survivors have in common, and it’s helpful to actually treat people accordingly.

I honestly don’t understand why more emphasis isn’t placed on the experience of brain injury. That’s what trips us up, quite frankly. That’s the thing that makes our recoveries so much harder — the experiences we have and the effects those experiences have on our selves, our Sense-of-Self.

Well, that’s why I’m here. To speak up for those of us who tend to get stuck in our post-BI experiences, and need to see there’s actually a way out… Because there is. There is always hope — even in the most dire cases. Nobody can tell me different. That’s just how we’re built — to amaze… to heal… to grow… to learn. And learn some more.

Here’s a quick summary of the different types of brain injury:

Acquired Brain Injury (ABI)

includes things like stroke and anoxic (being without oxygen) brain injury. Some consider traumatic brain injury to be an acquired brain injury, because it “is damage to the brain that was not present at birth and is non-progressive” (See The ABI Manual for more). Personally, I wouldn’t call it “non-progressive”, but everyone’s experience is different.

ABI Resources:

Stroke

happens either when a clot blocks blood flow in the brain (called “Ischemic” stroke) or a blood vessel pops and there’s a brain bleed (called “Hemorrhagic” stroke)

Stroke Resources

Traumatic Brain Injury (TBI)

is related to trauma to the brain that comes from a fall, an attack, a sports injury, or an accident.

TBI Resources:

Concussion

is what people often call a “mild” TBI. Concussions are sometimes considered less serious than traumatic brain injuries, and a lot of people consider a TBI that clears up after a while, to be a Concussion.

Concussion Resources:

 

From Brain Injury and Football — No Place to Run — on CRAIN’S COMMENTS

concussion_nutrition

The latest evidence is pretty hard to ignore. The research leader is Dr. Ann McKee, chief of neuropathology at the VA Boston Healthcare System and director of the CTE Center at Boston University. She examined the brains of 111 deceased NFL players. Of these, 110 had CTE, the degenerative disease caused by repeated blows to […]

via Brain Injury and Football — No Place to Run — CRAIN’S COMMENTS

The things I need to know, to move forward

two rock climbers on climbing wall

So, the session with my neuropsych (NP) went well yesterday. We actually sat down and went through the data from my prior two evaluations, and I got to refresh my memory about what’s going on with me behind the scenes.

The things that jumped out, which are measurable problems are:

  • processing speed
  • visual memory problems
  • resistance to short-term interference

We talked a bit about these issues, and I got a clearer view of what actual difficulties I have. I struggle with certain things all the time, but I don’t always have a clear view of why that is. Maybe it’s my processing speed. I don’t seem to put things together right away, so I often don’t even realize that I’m struggling till later.

The idea that I’m slow doesn’t make me very happy. I’ve got “superior” intelligence, but my speed can be glacial at times. That puts me at a disadvantage in the speed-addicted world, where everything happens at high speed. It also doesn’t help me in social situations, where people gauge your intelligence by how quick you are. Obviously, that’s not a fair comparison. But that seems to be the public bias.

The thing that bothers me more is the visual memory thing. I tend to think of myself as a visual thinker, but maybe that’s not the case. My memory was the worst, when I was trying to remember pictures. I forgot things pretty quickly. Like they’d never even existed. Compared to my verbal memory (which also kind of trailed off at times — I lost track of important details), it was a lot worse.

I need to dig into this more, because I think this may be why I struggle with some things I really, really love. I’m an “anatomy geek”.  I love to study pictures of human anatomy — feet, hands, shoulders, backs, legs, torsos, internal organs, the nervous system, even the musculature of the head. But for some reason, no matter how hard I study, no matter how hard I try, I can’t seem to keep the images in my head. I tried to become a personal trainer, years ago, and the reading materials were fine. But I couldn’t get the anatomy piece.

Maybe that’s why. If that’s the case, I need to either stop getting all these atlases of the human body, thinking I’m going to memorize them all… or I need to find another way to study. I’m not willing to let go of my love of the human system, so I’m not going to give up my atlases. I just need to find a new way to memorize. And not just memorize, but really understand how things are put together, using all the tricks in my toolbox.

My first NP was pretty intent on making sure I didn’t get down on myself and think less of my abilities. I have a tendency to focus on the things I do wrong (I was raised that way, actually), and that can really drag me down.

Now I really need to work with my issues in a more focused way. I know the numbers I’m looking at are old — the last eval I had was about 5 years ago. I should really get a new eval, but it costs a lot of money, and my insurance won’t cover it. So, unless I come across an extra $5K that I don’t need for something else (and wouldn’t that be wonderful), I’ve got to work with what I have. Too bad. I’m stuck.

Then again, I’m not that stuck. I can still observe what’s going in my life, see what’s causing me problems, and deal with that. I have a lot going on, so it can be a bit of a “dust storm” with lots of competing information, and I may not always be able to make distinctions. But at least with the handful of issues that my NP eval has identified, it gives me a handhold.

All of this can be like standing in front of a rock wall, trying to figure out where to grab onto first, to start climbing. All I need is a few tips and hints.

Then I can get started.

Moving up.

Onward.

Upward.

Seems strange that we don’t know more about #concussion

According to the CDC’s web page(s) on TBI and Concussion:

How big is the problem?

  • In 2013,1 about 2.8 million TBI-related emergency department (ED) visits, hospitalizations, and deaths occurred in the United States.
    • TBI contributed to the deaths of nearly 50,000 people.
    • TBI was a diagnosis in more than 282,000 hospitalizations and 2.5 million ED visits.  These consisted of TBI alone or TBI in combination with other injuries.
  • Over the span of six years (2007–2013), while rates of TBI-related ED visits increased by 47%, hospitalization rates decreased by 2.5% and death rates decreased by 5%.
  • In 2012, an estimated 329,290 children (age 19 or younger) were treated in U.S. EDs for sports and recreation-related injuries that included a diagnosis of concussion or TBI.3
    • From 2001 to 2012, the rate of ED visits for sports and recreation-related injuries with a diagnosis of concussion or TBI, alone or in combination with other injuries, more than doubled among children (age 19 or younger).3

What are the leading causes of TBI?

  • In 2013,1 falls were the leading cause of TBI. Falls accounted for 47% of all TBI-related ED visits, hospitalizations, and deaths in the United States. Falls disproportionately affect the youngest and oldest age groups:

    • More than half (54%) of TBI-related ED visits hospitalizations, and deaths among children 0 to 14 years were caused by falls.
    • Nearly 4 in 5 (79%) TBI-related ED visits, hospitalizations, and deaths in adults aged 65 and older were caused by falls.
  • Being struck by or against an object was the second leading cause of TBI, accounting for about 15% of TBI-related ED visits, hospitalizations, and deaths in the United States in 2013.

    • Over 1 in 5 (22%) TBI-related ED visits, hospitalizations, and deaths in children less than 15 years of age were caused by being struck by or against an object.
  • Among all age groups, motor vehicle crashes were the third overall leading cause of TBI-related ED visits, hospitalizations, and deaths (14%). When looking at just TBI-related deaths, motor vehicle crashes were the third leading cause (19%) in 2013.

  • Intentional self-harm was the second leading cause of TBI-related deaths (33%) in 2013.

That, to me, is a pretty big deal. And that’s not even counting the costs of concussion to all the people who sustain them, as well as the friends, family members, co-workers, and employers involved.

While other diseases, injuries, conditions, etc. have “epidemic” status and get a whole lot of attention and visibility drawn to them, concussion / TBI still lurks just under the surface. Maybe because it’s so scary for people. Maybe because it’s so invisible. Maybe because people still have this perception of TBI as being “just a clunk on the head” that’s no big deal.

Guess what — it is a big deal. And it affects your whole person.

So, maybe people really do get that. They just don’t have the ways of thinking/taking about it in a productive way.

Maybe we just aren’t properly equipped.

I’m not sure there’s ever a way to properly equip people to confront their deepest, darkest fears. But the right information goes a long way.

Also, having standards of care, getting the word out on a regular basis about how to understand and handle concussion / TBI, and not treating it like a taboo that can’t be discussed in polite company… that would help, too. Heck, if we could just discuss it, period, that would be a positive development.

Well, that’s what this blog is about. Sharing information, as well as discussing what it’s like from a personal point of view. It’s important. And it doesn’t happen that often, in a productive and pro-active way. At least, not compared to the frequency with which it happens.

It really doesn’t.

Except here, of course.

So, as always, onward…