Wow – I actually got some sleep last night

Well, that was unexpected. I counted up how much sleep I got last night, and it was 9.5 hours. Amazing. After getting 4.5 hours the night before, and 5.75 hours the night before that… This is pretty cool.

Actually feeling like I got some sleep – which isn’t the same as being fully rested (I’m not)… it’s something I could get used to.

I keep thinking / talking about sleep, because it’s so vital – especially for those of us with TBI/concussion issues. A tired brain is an agitated brain. And being agitated on top of all the COVID stuff is just not good.

I suspect that a lot of the issues people have been having around the pandemic and the lockdowns and everything have been exacerbated by underlying physiology. Mentally, we can understand that we need to play it safe. But physically, we get tired – so tired – and for a lot of us, that means our brains stop working the way we need them to.

And when our brains stop working the way we need (and expect), then we can get into a “crisis of self-hood” as I think of it. When we don’t have the same kinds of reactions we expect to have, we can lose touch with our Sense-Of-Self, and that adds to our stress.

It’s not just TBI that scrambles that. It’s hardships that exacerbate our TBI issues. And when you’ve been in recovery for an extended period of time, it can be easy, so easy, to lose touch with the fact that yeah, you’re still impacted. And yeah, your brain still struggles. And yeah, it affects everything in life.

Which is why getting some sleep thrills me so much. Because it means my brain and body actually have a chance to recover and get back to some baseline of at least some competency. And after weeks and weeks and months and months of doing without a level of competency I used to be at before this pandemic hit… well, that’s pretty cool.

Wow. Amazing.

 

Putting Anxiety to Good Use

I had a really good weekend. I made a lot of progress, and I got a lot of plans in place that I think are really going to help me get stuff done. I didn’t clean my gutters, which I really needed to do. And there were a few other things I need to do this morning, to catch up. But all in all, it was a good and satisfying weekend.

My top achievement was getting rid of some serious distractions that have been pulling my attention in all different ways. Those are old projects I was very fond of… and that I was very fond of thinking I’d ever finish. As it turns out, because I had too many things going at the same time, I never advanced down the path I was hoping to, which resulted in me getting nothing done.

So, that’s stopped.

And that’s a big deal for me. Because distraction and dissipate have been regular themes in my life, for as long as I can remember. I’m not sure what’s changed with me, but suddenly I don’t feel drawn to spread myself so thin.

Part of it might be getting a hold of my anxiety. Or just using it for something productive, instead of trying to get rid of it entirely. For quite some time, I’ve tried to manage my anxiety by calming myself down. But at the end of last week, I realized that anxiety is actually a really potent source of energy for me. And it’s constant. It never really goes away.

So, I can use up all my time and energy and attention trying to control / manage something that’s always there, anyway. Or I can redirect the energy into something productive. And really kick it.

That’s what I’ve been doing for the past several days. Kicking it, using my anxiety. Not trying to calm myself down, but directing my energy into something useful. Making plans. Creating a new pace for myself. Letting that old companion anxiety propel me forward…  Turning that often-unwelcome companion into a friend.

And it’s working out pretty well, I have to say. After years and years of being so dissipated and distracted by, well, just about everything, I feel like I have a much better understanding of how my system works — and how it can work for me.

Of course, none of this would have been possible, if I hadn’t worked at my TBI recovery intentionally and with a lot of trial-and-error. I can tell my brain is behaving more, these days, because I’m actually able to focus. I used to be able to do it, at will. Then I fell in 2004, and that went away. I couldn’t manage much of anything, concentration-wise. That’s something that’s come back over time, with lots and lots of practice and (again) trial-and-error. I’ve let myself make mistakes. That’s how I learn. And I gave up worrying about “failure” in the process, which always helps.

So, yes. This is good. I’ve got my mandate for the next year — maybe two. I’m only focusing on one major project, for 2019, funneling my anxious energy into taking steps to do something about each hurdle I come up against — which are many. I will keep this blog going, because it helps me keep my head on straight and also keep focused on what’s most important to me. But I’m not working on a bunch of other side projects that I had going, lo those many years.

And, ironically, that tames my anxiety. Using it for something good not only lets it just be without judgment or blockage, but it also gives it somewhere to go. Like a rushing river, when I let it just flow and direct it in a certain direction, it takes me on some really interesting turns. Instead of damming it up and trying to control it, I just let it flow… and I ride that wave.

Which is good.

And overdue.

Onward.

Taking it easy… sort of

I’m doing my version of “taking it easy” today.

Basically, I’m working on my projects that have been on the back burner for weeks and weeks. Five weeks, pretty much. Count them – five. Ouch. Especially considering how psyched I was about finally getting back into them, about a month ago.

Then I had to travel.

Then I got tired.

Then I had to travel some more.

Then I was exhausted.

I’ve spent the past week swamped at work – two very late-night working sessions, and both nights not getting much sleep at all.

It was really demoralizing and depleting.

But — ha! — now I’m back.

I’ve had the whole day to myself today, to do as I pleased. And it’s been good. I didn’t do the errands I typically have to do on Saturday mornings, because, well, they’ll keep. Those errands aren’t going anywhere, and I needed the down time… the time to just sink into my passion projects and not be governed by someone else’s timeframes, deadlines, limitations.

Even though I worked really hard, this morning, it was very much a vacation from all the intense work at the office, as well as the care-taking for my spouse. Oh, also, my spouse has been ill, so I’ve been doing even more care-taking this week, than I did when we were traveling. And that’s a lot. Nearly constant attention paid. Lots of interruptions. And a trip to the doctor, as well as wrangling with the pharmacist who didn’t understand why I was asking all those questions about the type of medication that was prescribed. My spouse is extremely sensitive to meds, and the pills given before made them violently ill.

So, yeah. I’m going to ask questions. Too bad. At least I kept my wits about me and didn’t yell at anyone. That’s helpful.

Anyway, I spent a great deal of time this morning (and early afternoon) mapping out specific steps I can follow to make the most of my time and not make myself crazy in the process. Now that I have it figured out (mostly), I can move forward.

I hate not knowing what direction to take. It stops me. It blocks me. I’m not a fan.

Anyway, duty calls. I’ve got some things I must take care of this evening, so I’ll sign off for now. I am very much looking forward to this next week, when I’ll have five days off work… to continue to make progress.

 

Changing plans and shifting priorities

I 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… 😉

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

I’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.

My last decent vacation in a good long time…

The way life goes, you never know how things will shape up. I’ve had so many hopes and dreams over the years, and so many times, I’ve been on the verge of really breaking through… then something happened. And that “something” was often a TBI.

I was just getting my act together in elementary school, finding my footing with my peers and getting involved in a special program for “gifted” kids and discovering what worked for me, when I got hit on the head and things changed. I became combative. Difficult. A behavior problem. So much for the gifted program. They showed me to the door on that one.

My family relocated, and I was finally figuring out how to interact with the people around me (who all talked with thick accents I could barely understand). Then I fell out of a tree and wrenched my neck. And I kept hitting my head while playing sports. Football. Soccer. Just playing outside. Hitting my head was routine. I can remember a number of really significant blows to my skull that disrupted my consciousness, but they happened against a backdrop of regular clunks on the head. It seemed like every time I got on my feet and started feeling like I had a grip on my life, I’d get hurt (again), and I’d be back at square one.

I eventually got out of my parents’ house and got on with my life. When I drank a lot, I fell down — a lot. I may have (probably) hit my head a bunch of times, but I don’t remember much from the 4-5 years after I left my parents’ home.  Those years that could have been some of my best (and in some ways, they were). They could have been years of exploration and learning and experience like no other, but instead they were mired in the muck of hangovers and all the confusion that comes from not knowing what happened the night before. A few scrapes with the law… being ostracized by my peers… some violent confrontations… making money by borderline means, just to get by… it was definitely an experience — that’s for sure. But it took me years to recover from the damage I did to myself.

After I was in the working world, driving to work each day, I got in a bunch of car accidents. They weren’t huge deals, mostly just fender-benders, but whiplash and getting clunked on the head didn’t help matters any. During years when most of my peers were getting on their feet, finding their way in the world, I was scrambling. Trying to catch up, after being set back. I got a job, then got hit by a speeding door-to-door salesman. I left that job without saying why. Just left one day and never went back. I relocated to a really great city, but just before moving, I got rear-ended and spent the next several months in a manic haze.

Years later, I had a pretty decent job with a lot of responsibility, then got tangled up in a 7-car pileup, and everything fell to pieces there, too. That worked out okay in the end, because I found a much better job and a completely different career track, but it did a number on my self-confidence, and it caused me to pass up a golden opportunity that my new manager laid at my feet (and begged me to take). I can only imagine how much more stable my life would be now, had I actually taken them up on it.

The last and most debilitating TBI was when I fell down a flight of stairs at the end of 2004. I was just 18 months away from having some investments mature, and if I’d been able to hang in there and keep up with my life, I could have repaired and paid off my house, gotten rid of my debt, and really solved a lot of logistical problems that are the kinds of things that only money will solve. None of that got solved. It all fell apart. And it’s taken me 12+ years go piece it all back together to just a semblance of how things once were.

So, what does this have to do with my current vacation (which is now drawing to a close)?

In the course of my life, I’ve never known just when everything would fall to sh*t. It’s partly me being oblivious, partly me not having a reliable crystal ball that lets me peer into the future. So, all those times when I just assumed I’d have time to do this, that, or the other thing… all those times when I thought I was set… all those times when I didn’t pay attention to what was Right In Front Of Me… in so many cases, they were the last hurrah for that part of my life. The last shred of self-confidence. The last vestiges of feeling competent. The last months of feeling like I could actually plan my future with certainty. The last weeks of being able to take certain things (like how my brain worked or how I’d react to experiences) for granted.

I didn’t savor those things when they happened, because I was too damn’ optimistic. Too oblivious to just how sh*tty life could get for me. Not experienced enough to realize that things could get That Much Harder for me in a moment’s time. I took them for granted. I didn’t wring every last bit of goodness out of them, while the goodness lasted. And now I just look back on a lot of wasted opportunities and chances I totally missed enjoying… all because I thought there would be another time that would be somehow better.

I don’t believe that anymore.

Especially not this morning.

From here on out, my vacations will probably be a lot more work than relaxation, a lot more frustrating than renewing, and a lot less worth it to me. But they’ll continue. Life goes on. Sh*t gets complicated. So it goes.

For today, I’m just going to enjoy myself. Because this might just be as good as it ever gets.

I have the next week OFF

Soon…

I’m leaving for a week’s vacation today. I have a handful of errands to run before we can get on the road, and then we are heading out to a waterfront town that’s full of art galleries and novelties shops and all sorts of great restaurants. We have a few restaurants that we really like, but mostly we avoid the crowds and excitement, buy Mexican or Chinese takeout and head for the beach for our own waterfront dining. It’s the best way — sitting in the car right at the edge of the water, having a nice filling meal that doesn’t cost a million bucks.

It’s going to be nice to get away. It’ll give me time to think, time to relax. I realize that I’ve been stuck in limbo with my life for some time. There’s been all kinds of drama in my immediate and extended family for the past 15 years — actually, longer than that. More like 40 years. And it’s really dragged me down, watching everyone go through their problems — me included.

But now, here I am, at a place in my life where I just don’t feel like I have the time to fritter away on feeling terrible about things that I can just take care of. I’ve learned a whole lot about how to deal with my TBI issues, and I’ve made an amazing recovery. So why not enjoy it?

Why not, indeed? I feel like I’m at a point in my life where I’ve learned more than enough hard lessons, I’ve been through my make-or-break circumstances, and I’ve made it through. I’ve paid my dues. Now it’s time to just enjoy my membership.

It’s funny… I don’t tend to think of myself as that old. I’m really not. But I have been knockin’ around on this planet for over half a century, and I’m kind of over the whole newbie experience. I’m not a newbie. I’ve been around the block plenty of times. And it’s about time I just settled into living my life and enjoying it, instead of constantly pushing myself to “take it to the next level”.

Please. What next level? No matter how hard I work, no matter how hard I push, there will always be another level ahead of me. So, why not just settle in and get the most out of the levels I reach? I haven’t done nearly enough of that over the years. And while it does keep me sharp and invested in my life, it’s also depleting and drags me down.

Eh, whatever. I’m going on vacation. I’ll probably blog a bit while I’m there. Just relax into it, do some writing, have a good time, while I’m at it.

And now… it’s time for more errands, as I prep for my 7-day escape.

Onward.!

When things don’t turn out… as expected

I can be really miserable to live with, when I wake up after a nap. Especially if I’ve slept more than 30 minutes. Resetting my system to regular life after being “down” is difficult.

A tired brain is an agitated brain, and that’s certainly true for me. Ever since my mTBI in 2004, I’ve been much more prone to anger when I’m tired. It’s neurological. And it’s not much fun.

Yesterday, I was pretty tired. And I was pretty agitated last evening. Cranky. Fighting over every little thing. Grousing and grumbling and having trouble with basic communication. Yelling was my default mode, last evening.

And we were supposed to be on vacation… My spouse and I had a 5-day vacation planned at a waterfront resort about 3 hours from our place. We’d planned on leaving at noon on Thursday, getting there around 3:00… unpack the car, go grab an early supper, and watch sunset over the water. Then we’d turn in, and have the next four days to chill out.

Well, none of that actually happened. My spouse couldn’t get up till noon — too tired. Okay… I adjusted. It did give me time to catch up on my own chores, packing, preparations. The three-hour drive turned into a 5-hour meander through the countryside, which was actually really nice. The weather was gorgeous, and we stopped at a little scenic spot where we relaxed and napped. So, I got about 30 minutes of sleep, which was great. I didn’t even realize how tired I was, till I put the seat back in the car and closed my eyes.

When we woke up, we drove to the resort town, stopping along the way to get some hot soup, which was delicious. It was getting late, so we skipped going to the condo and went right to the beach, where we watched an amazingly beautiful sunset that lasted for an hour, with the amazing afterglow.

Then we drove around some more, exploring the surrounding countryside in the dark. That might sound strange, but we love to do that. There are woody areas where wildlife comes out — we’ve seen foxes, coyotes, bats, raccoons, opossums in those woods, and we always like seeing what happens. We actually did see two big coyotes — one of them ran out in front of the car, but I braked in time. Whatever they’ve been eating, they’ve been well-nourished, that’s for sure.

We picked up some groceries at the local supermarket, then went on to our condo. The management folks just left the door open and a key on the dining room table. I parked in temporary parking and commenced hauling our 12 bags up the flight of stairs to the upstairs unit. We’d packed 5 clothing bags, 2 bags of books and laptop, 4 bags of food we brought, and one bag of beach shoes. That wasn’t counting the clothes on hangers or the beach supplies — we like to travel comfortably, and we also like to have our own food, so there’s always a lot to carry in.

My spouse was moving slowly, since they’ve got limited mobility, so I had everything in the unit before they got into the condo.

When they got inside, however, something was amiss. There was a strong chemical smell — and in fact, there was a sign out front announcing work being done by painters — interior and exterior. My spouse started to have a really bad allergic reaction, sneezing and coughing and throat closing up. It was really bad. We opened all the windows and got some fans running, but after an hour of that, it was clear that we weren’t going to be able to stay the night — or the whole long weekend.

So much for vacation.

There was no way we could stay. I was also starting to get a sick, throbbing headache, which wasn’t good. If a migraine gets hold of me, that’s pretty much the end of me, for days to come. Neither of us could chance it. So, I hauled our 12 bags back down to the car, we closed up the place, and came home.

We got  home around 2:00 a.m., which wasn’t bad, actually. And I got in bed by 2:30. I slept till around 8, so that was better than some nights, lately. I’ve been having trouble sleeping, so actually, Thursday night was kind of par for the course.

Except Friday I woke up even more exhausted than usual. Doing all that driving — about 8 hours, give or take — and packing and caretaking and attending and adjusting… it just took it out of me, and 5.5 hours of sleep didn’t patch things up. I had a little 1.5 hour nap in the afternoon, but again, that didn’t do much for me.

So, by Friday night, I was pretty agitated. I was off my regular schedule, which is always a challenge — even if it’s for doing fun things. And I was tired. And my spouse was upset about having to leave. I personally didn’t care about leaving. Vacations with them are never, ever relaxing. It’s one request after another, constantly helping them with… everything. Their mobility has gotten worse and worse, and their thinking is not great. They have not taken good care of themself, mentally, emotionally, or physically, and after years of neglect, it’s all coming to a head.

The whole experience is pretty crushing, actually. Watching someone you love with all your heart decline… and being helpless to stop the downward slide… that’s not my favorite thing. At all. There’s so much they could be doing, so much that we’ve discussed them doing, so much they intended to do, but can’t seem to do by themself… it just doesn’t get done. And they get worse and worse off, as time goes on. I have no idea how much longer this is going to go on, but when it’s all over, I doubt I’ll have any interest in re-marrying. It’s just one long slog for me, and I need a break.

But so it goes, sometimes. I’m not the first person to watch their beloved decline before their very eyes. But it still takes a lot out of me.

And that was probably one of the things that got to me so much yesterday. I was tired, yes. I was agitated, yes. And I was also heartbroken that my spouse can’t keep up. Through the results of their own choices, their own actions. It’s crushing to see that — and realize that you probably care about your beloved more than they care about themself.

But like I said, that’s how it goes, sometimes. I’ve had friends whose spouses completely bailed on taking care of themselves, too, and I’ve watched them either get divorced or just fade away. I’m in the latter category. I’m not getting divorced — I don’t have the heart to do that, just bail on my ailing spouse. I’m just going to watch all this slowly fade away.

And take care of myself in the process. Because I still have a lot of life in me, and I’m not about to let someone else’s choices bring me down. We all have choices to make, we all have ways we can help ourselves. I can’t always help others — even the person closest to me — but I can certainly help myself.

And so I shall.

Whatever else happens.

Vacation time

The road ahead is a lot more straightforward than the road behind me was

I actually get a few days off work, starting today. Well, starting at 11:00 today — I have a meeting at 10:30 that I have to lead. But then, I’m done.

It’s been a really challenging time, lately. Morale is terrible at work, and it’s like wading through thick, sticky mud, trying to get anything done. My own morale is not great, I have to say, but I keep on with my work, regardless.  For me, the real pleasure comes from actually being able to DO the work. 10 years ago, that wasn’t the case. I was pretty much of a series of accidents waiting to happen.

• My short-term working memory was shot.
• I couldn’t understand what people were saying to me.
• My ability to plan and follow through was negligible.
• My temper was short, and the recovery time was long.
• My spouse was afraid of me.
• I couldn’t seem to keep a job for more than 9 months at a time – and that was pushing it, for me.

It’s all very different now, thank heavens. I’ve worked at it. I’ve rehabbed myself. I’ve pulled out all the stops to figure out how to restore myself to my former abilities — and the very positive thing is, I’ve actually exceeded my former abilities. I now have much better skills than I had before my mTBI-inducing accident in 2004. Because I could finally see what was going wrong with me, I got help from someone who could assist me, and I worked at it.

Every single day.

It was my other full-time job.

I have to constantly keep this in mind, because it’s so easy to forget. I get caught up in my daily life, I get wrapped up in my everyday experiences, and I lose sight of the fact of how far I’ve come. I get tired. Every day, I’m wiped out at the end of it all, which makes it difficult to be thankful for anything. It makes it difficult to even think or keep my temper cool. Lately, I’ve been snapping a little more in the evening than I’d like, and that’s got to stop.

I’m hoping a good vacation will help with that. Even if it’s just for a long weekend at a waterfront down three hours away. It’s something. It’s a break from the regular grind. And it’s a much-needed “reset” for both myself and my spouse.

So, as I go through my daily life, these days, surrounded by people who are none too happy to be at work and who are deeply fearful about their future, I think about how much I have to be grateful for. I think about how much better I’m doing that I was in 2007. And I think about how much farther I have to go.

Once upon a time, all my dreams had evaporated. Once upon a time, I could see no clear path forward. Once upon a time, my life was collapsing around me, and I didn’t know why.

It’s not like that, anymore.

I’ve come a long, long way.

And I never want to lose sight of that.

Emotional/Behavioural Changes after Brain Injury – Part 1

Sometimes the storm seems to come out of nowhere.

From The Toronto Acquired Brain Injury Network.

My comments are in bold like this.

Emotional/Behavioural Changes

Some people are left with changes in emotional reaction or behaviour after a brain injury. These are more difficult to see than physical or cognitive changes. However, they can be the most difficult for the person and their family to deal with.

BB: I had no idea that a TBI would affect me emotionally, or change the way I acted. Like so many people, I figured that a bump on the head was just an external thing. I'd feel pain on my scalp, and maybe I'd feel a little woozy, but it would clear up in a few minutes... or hours. How wrong I was - so many times. Emotional and behavioral issues have been the bane of my existence (and my family's) for years and years, starting back in my childhood when my behavior was erratic, and my emotions were volatile.

Not everybody will experience these problems and their severity will also vary.

BB: The severity can vary from person to person, as well as from situation to situation. With me, I can be fine, one day... be not-so-great (but seem fine), the next... and then completely lose it a few days later. It's often cumulative, but nobody on the outside sees it building up. That happens inside. Where nobody can see. And when it erupts... hooo boy.

The problem for me, is that when I blow up, it puts people off, and then they think that's how I always am... and then they walk on eggshells about it, all the time.

And I sometimes never get a second chance, because they've made up their minds about me in a negative way.

Agitation

This frequently occurs at a very early stage after the injury. It can be a coping mechanism for the person, who may be disorientated and very confused. It is most often a stage a person passes through, rather than a permanent change. Examples include: restlessness, pacing and pulling at intravenous tubes.

BB: I've been extremely fortunate to never having had intravenous tubes to pull at, but I know the feeling of not being able to sit still, being extremely agitated - especially after a TBI. A number of times, I can recollect getting hit in the head, and then being flooded with agitation and an overpowering need to MOVE! Like when I got hurt during an informal pick-up soccer game in high school, after the hit, when I was lying there, dazed and confused, I suddenly felt like I'd been given super-powers, and I leaped up and started playing like a crazy person. I don't think I played better than I had before I got hit, but I felt like I did. And I was ON FIRE - or so I thought.

In another soccer game, when I got my bell rung, I knew I'd been hurt, but I felt this incredible urge to GET UP AND GO!!! And I started racing around the field -- in the wrong direction, no less. I nearly scored on my own team, which I think was a red flag for everybody on the sidelines. I did get taken out of that game, and I paced the sidelines in confusion and anger, because I NEEDED TO BE IN THERE! But it was wise to pull me from the game. I was not in good shape, at all.

So, while agitation may be a coping mechanism for some, as they say above, I suspect it also has to do with the mechanism of the brain - the release of all those chemicals, and the general confusion that causes. The brain is trying to figure things out - plus, it's firing on ALL cylinders, like there's no tomorrow. In addition to being a behavioral coping mechanism, it's a result of the brain's basic function.

Explosive anger and irritability

If there has been damage to the part of the brain that controls emotional behaviour and the ability to tolerate frustration, emotions can swing to extremes. The stress of coping with even minor crises, such as misplaced shoes or a noisy vacuum cleaner, can be too much and trigger an angry outburst. If these stresses can be identified, it may be possible to reduce them.

BB: Amen to this. The part of the brain that controls emotions is particularly susceptible, as it's out in front and there are so many types of injury that can affect it. Car accidents, where your brain slams up against the inside of the skull... or tackles that snap your head back and forth... falls, etc. Minor events can turn into crises -- just being blindsided by a sudden change or something unexpected happening, can set me off. Little things can turn into huge things, in an instant. One minute, I'm fine, then all of a sudden, it's off to the races with emotional overload and over-reaction.

Prolonged stress will also do a number on me, as will fatigue. The more tired I am, the more irritable I get - a tired brain is an agitated brain. And when I get too agitated, it's not cool.

Sudden outbursts... extreme reactions... it's all part of a day in the life for me, sometimes. Unless I can get enough sleep and take good care of myself. If I can keep on my schedule and be smart about eating and drinking enough water, that helps. So does meditation and just taking time to chill out. 

Lack of awareness and insight

The ability to recognize your own behaviours and change them when needed is a sophisticated skill that can be affected by brain injury. This can affect someone’s ability to: be self-aware; have insight into the effects of personal actions; show sensitivity; or feel empathy. It also means that a person may not fully appreciate or understand the effect that the accident is having on their life, health or family.

BB: I honestly had no idea how my TBI was affecting my household, back in 2005. I'd gotten injured at the end of 2004, and 2005 was the start of the downhill slide. I became incredibly self-centered and obsessed with myself. Small wonder - I had to recover and build myself back up, as my Sense-Of-Self had taken a huge hit. I didn't know who I was or what I was about, anymore, and it was devastating. I didn't recognize myself, and I was so caught up in figuring it out inside my head, that I never realized the extent of the changes on people closest to me (who were outside my head).

It took talking with someone on a regular basis about what was going on with me, to help me see what an ass**** I was being, and to do something about it. Until I started talking to a neuropsych on a regular basis, I had no way to understand myself and objectively examine my behavior, because nobody I talked to actually understood how TBI affects the mind, body, and spirit... so they made all kinds of flawed assumptions about who I was and how I was. It was incredibly unhelpful for me, and it did more harm than good. 

I got lucky. A lot of others don't have that opportunity. And that's a damned shame. It's criminal, really.

I’ll continue this post in Part 2. Watch this space for notifications.

Source: www.headway.org.uk

Source: Emotional/Behavioural Changes | ABI Network