It feels so good to sleep

This pandemic has been messing with my sleep. I don’t get a solid 7-8 hours each night, like I used to. Now I’m lucky to get 6.

But now that I’m working from home, I can take naps in the afternoon, so that’s what I’ve been doing.

Thomas Edison hours. Sleep 4 hours, get up and work like a crazy person for 3-4 hours. Sleep 4 hours, then get up and work like a fiend.

There are worse things, I suppose.

I’ve also taken to just lying down and sleeping as early as I like. I nap a few hours after supper, then get up and shut the lights out and go to bed.

And it feels so good to sleep. It’s the only break I get, these days. And I need a break.

Sleep helps everything

I probably would have been better off taking napsLike most people, I’ve been quarantined. More quarantined than most. My spouse is declining in their mental and physical health, and I’m frankly not sure how much longer they have. Could be weeks. Could be months. Could be years. I just don’t know. And they’re not very forthcoming about what is really going on with them, so it’s well nigh impossible to tell what the deal is with them.

Well, anyway, all the heartbreak gets exhausting to think about and talk about, so I won’t.

Not now.

I’ve been pretty stressed out over a lot of things in my life. The job. The house. The spouse. The COVID-19 situation. Now, I wouldn’t say I’ve been stressed out about everything, in the typical way a lot of people are. Let’s just say, it’s been more to deal with. And adding all the hypervigilance, the masks and gloves and social conflict around it… well, that’s just been overwhelming. Not because I’m terrified of getting COVID. I’m not. In fact, I suspect I may have had it over the winter, before it became “a thing”.

I had this really persistent cough, my chest felt like it was getting tighter every day. I didn’t have a fever, but I felt like I’d been beaten with a stick, and it lasted longer than other bugs I’ve had. It just felt different. Like some weird foreign entity had taken up residence in my lungs.

There were times it got a little scary. But I did breathing exercises to open up my lungs, and over time, they stopped feeling so constricted. And I got a break from it all. Eventually it resolved. So, that’s a plus.

The thing is, I still have issues with my breathing.  When I get really tired, my lungs feel like they’re shrinking, and I have to cough to catch my breath. This is when I’m tired – so tired – and I’m behind on my sleep. When I rest – and do my breathing exercises – I get better. But the breathing problems is a sure sign that I am over-tired and I need to do something about it.

Which is good. Because not getting sleep is a killer for me.

A tired brain is an agitated brain, and there you go. Agitated. Difficult to live with. And me trying to stay calm and collected with a spouse who’s increasingly erratic, emotional, anxious, and volatile.

Well, it is what it is. I know I can’t get any help from the medical establishment, because A) they don’t understand my mTBI situation, and  B) they’re all busy with COVID patients and extreme cases who have waited till they’re almost dead before they show up at Urgent Care or the ER looking for help.

Even if they were available, they couldn’t help me. Because they just can’t. They won’t. They don’t think there’s anything “up” with me, other than me looking for attention from authority figures. So, I don’t bother.

And I get on with my life. I notice the signs. I take action. I watch to see how it works out, and if I need to adapt, I do.

And that’s about all any of us can do.

I need a haircut.

Maybe next decade I’ll get one.

Time for some summer fun

sunflowerWell, it’s been a miserable bunch of months. The past year, actually, has been pretty bad, and I’ve had enough. I’ve come close to quitting my job a bunch of times. Of course, the need to eat and have shelter and support my household has kept me from taking the leap — not to mention realizing just how non-negotiable it is for me, anymore, to be able to work from home.

If I can’t work remotely at least two days a week, there’s no point in even taking a job.

People have reached out to me. I’ve done interviews. I even got an offer.

But I couldn’t work from home, unless there was an emergency, and the commute was just too awful.

What is it with employers, that they don’t understand just how draining it is to work in an office all day long? It makes no sense. Some grown-ups (like me) actually thrive when working on our own. And we get a lot more done when we’re able to concentrate in our own space, than if we’re stuck in some cubicle where people are constantly interrupting, talking, walking by, making noise, and so forth.

I’m as guilty as the next person for doing it. People around me have to deal with my noise, when I’m at the office. But that’s the deal when you’re on-site.

But I digress. As much as I want to quit my job (and I do), I realize that I’m way too tired and stressed to make any kind of decent decisions about what kind of job I want next, where I want to work, what kind of salary I need, and so forth. I’m too worn out. I need a break. So, I’m taking the summer to rest, relax, rejuvenate. I’m overdue for time off. Like, a year and a half overdue.

I’m not in a position to just split for a vacation, but I can change my routine to make it more civilized. Ease up on myself. Quit pushing myself like I have been. Just take some time to take stock of my life, and think about how I’d like things to be. I’m getting too old to be getting constantly sucked into all the ridiculousness that happens, each day. I can’t control what others do, but I can avoid getting too emotionally invested in it.

It’s certainly not worth wrecking my health over the poor choices other people make, day after day after day.

Nah… I’m pretty much done with that.

So, this summer is really about me. Taking care of myself. Actually enjoying myself. And having a summer.

Going for long walks and drives. Roaming around and exploring parts of the world I haven’t seen, yet, even though they’re not far from where my daily routine takes me. Hanging out and enjoying the scenery. Looking around, as I drive to and from work, and really enjoying the scenery.

Taking a big old break from the social media echo chamber, and getting some fresh air.

Ahhhhhh….

I think this is going to be a good summer.

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.

A little more coffee, then I’m on my way

coffee and notepad and pen on a tableThis is pretty much how my morning looks – me with a cup of strong, black coffee and a notepad with a pen to write down what I’m supposed to be doing, this morning.

Under normal conditions, I’m usually out and about by this time (it’s nearly noon). But today is different. I’m more tired than normal, and I have a lot of catching up with myself to do from this past week.

Reading… blogging… organizing…

Getting myself together for the rest of the day, which will be all about getting my spouse together to go to the even they’re hosting tonight. It’s a lot of work. There’s a lot to remember. I don’t feel up to it, but that doesn’t change the fact that it needs to be done.

I need some motivation. Something to perk me up.

Then again, I think just resting tonight, spending time in my own home in solitude and peace is probably motivation enough. It’s been months, since I had any time to myself. I’ve almost forgotten what it’s like.

Almost, but not quite.

I think tonight, I’ll spend some time organizing my study. I have a whole room with books and workspace(s) for myself, but I’ve taken to using it just as a storage area, where I put things I don’t want to think about anymore. That’s gotta change. For sure.

So, I’ll do that tonight. It’ll be a really good use of time.

And now, out I go into the world today. It’s cold and windy and clear, and I have trash that needs to go to the dump. Recycling, too. And I’ve got to run to the store to get some supplies for tonight. It’ll all get done. I just need to rouse myself and get my act in gear.

Off I go… list in hand…

Onward.

A second bowl of cereal and another break before the next work stint

I just finished my 2nd (of 3) extended work session.

I look outside — oh, it snowed… and then it rained. I hadn’t even noticed. I was buried so deep in my work that I didn’t even notice the snow falling.

Well, in all fairness, it was dark outside for most of the time.

Yesterday was pretty intense. I worked from 8 a.m. till 5 p.m., went to bed for a little bit, then got up at 2:30 to work from 3:00 till just a little bit ago. I got a break, this last time, because it was only 5 hours, instead of the 9 hours like yesterday.

Be thankful for small favors.

Another small favor is that it’s cold and damp outside, so there’s no great rush to go anywhere. I do have to run an errand later, before I get on my last work session later this afternoon. But for now, it’s time to kick back, have another bowl of cereal, drink some water, and read a book until I go back to bed to rest some more.

And that’s all I have to say about that.

From head to toe – it’s all connected

It’s ALL connected

I’m figuring out this back/shoulder pain mystery.

Turns out, it’s not just my lower back that’s throwing off my upper back and shoulder. It’s my hips and legs, as well.

I stretch at night to relax, and my left leg and hip have been extremely tight. It’s been this way for a while. I usually don’t think much of it, but the other night, when I was stretching, I spent some extra time loosening up my left hip and hamstrings, and lo and behold, my upper back “let go”.

Deep Muscles of the Back
This full color stock medical exhibit illustrates the deep muscles of the back and spine. The following structures are labeled: semispinalis capitis, spinalis, cervicis, spinalis thoracis, rotares, splenius capitis, longissimus cervicis, iliocostalis cervicis, iliocostalis thoracis, longissimus thoracis, iliocostalis lumborum

It actually makes sense — looking at the deep muscles of the back, you can see how they run from shoulder to pelvis, and while they don’t appear to be exactly what’s been paining me (localized between the shoulder blade and my spine), it’s all connected, so if they’re pulling down, they’ll be pulling off the other superficial muscles that are connected to them.

It also makes sense from a where-did-this-come-from point of view. When I drive (and I’ve been driving a lot, over the past few weeks), I usually keep my left leg bent, and I use it to stabilize myself while I’m turning. That’s great, but it also shortens the muscles in my left leg — especially in the front. So, those shortened muscles pull on my pelvic bone, which pulls the deep muscles, which pull on the surface muscles.

And I’ve got persistent back pain that won’t seem to go away.

Now I’m pretty sure I know what’s causing it. Stretching helps. All the time.

The key is to not let it get a hold of me, but to keep myself strong and limber on a regular basis.

So, that mystery’s dealt with.

Now, to start my Monday.

Onward…

Fixing my #backpain – When slouch = ouch

wooden figure slumped over with back painI finally figured this out. My back and shoulders have been killing me for over a week, now, and I haven’t been able to get much relief. My spouse has been putting analgesic cream on it, which has helped, and I found some stretches that help. But still, not as much progress as I was needing.

Then I took a step back and thought about how my shoulders and back and legs are all connected, and it occurred to me that tightness in one area is pulling my back out of alignment. I started stretching my legs and lower back, as well as keeping my posture straight.

Lo and behold, that gave me relief. I’ve been slouching too much while working, for the past couple of weeks. And I’ve been driving a lot. So, my posture is out of whack. And that’s pulling my whole back out of alignment and causing the pain. I haven’t been able to lift weights, and I haven’t been able to sleep well, and that’s never good.

So, I’ve been keeping my posture straight, not slouching, keeping my lower back arched the way it should be. I do it while sitting, while driving, while standing, while exercising. And it gives me huge relief.

Now I need to strengthen my body overall to hold that posture. Tone myself up and make sure I have the structural support I need.

This is doable. Very much so. I’m just glad I figured this out before I did permanent damage to myself.

Onward.

Done worrying about stuff — for the time being

man and woman jumping for joy on a beach

It’s Friday. Woot.

Ha – that’s pretty much of an ingrained response, just one of my habits that usually serve me well. Today, I don’t actually have a lot of reason to say “Woot!”, because this day is no different than most of the days of the past week. I haven’t been working my a** off all week, so I don’t have a ton of reasons to be jumping for joy.

It’s another day. But come to think of it, that in itself is worth a “Woot!”

I’ve got some appointments this afternoon, and then we’ll get some Chinese food and watch a movie. Nice and drab. Boring is lovely. Not a lot of drama. Just taking care of business. Maybe I’ll have a nap later, probably I won’t. That’s fine. Because I’ve been catching up on my sleep, and I don’t have a very busy day today.

At all.

Woot.

Yeah, thinking about my day, it’s pretty sweet. I have time this morning to catch up with some reading and writing, and just putter around the house. I’ll contemplate my life, think about the coming New Year, maybe take care of a few little things here and there, and get the ball rolling this afternoon.

Check the news… read some websites I’ve started following… and not worry about much at all.

And this is actually a slight change for me, since I’ve been a bit anxious over the past few days. Plans didn’t work out, or I got stir crazy, or I forgot to call people I promised to call… A while series of little annoyances set me off, and since all the Christmas activity wore me out more than I expected, the fatigue got the better of me.

But today is different. I’m just kind of hangin’ out. I’ll make those calls I forgot earlier, and I’ll go pick up the neighbor’s mail from their mailbox while they’re out of town for the next few days. Just get myself sorted and situated and settled. Enjoy the day, don’t make a big deal out of stuff… just kind of roll along and listen to some music I love. It’s not every day I get the chance to just chill out, so I’m taking advantage.

Looking back on the last year, I see I’ve spent way too much time worrying about stuff. For sure. It worked itself out, even though I was so focused on individual details — losing sight of the big picture, and getting swamped in minutiae. Maybe it’s just me getting older… maybe it’s looking back with hindsight (not exactly 20/20, but close)… maybe it’s just a shift in my priorities and interests… but I’m a lot less concerned with stuff outside my immediate control, than I used to be.

There’s only so much I can control or influence. I can certainly try, but my abilities are, of course, human, so…

The best thing to do is really take care of myself and figure out how I can make stuff work for myself. The rest of the world will figure itself out. Or it won’t. Either way, my life goes on.

And on.

And on.

Woot.

Tending to my present… Kick-starting my future

road leading into the distance, with country landscape surrounding it

Well, that sounds dramatic. And I suppose it is.

Taking care of the present sounds so formal. It seems common-sense. And I suppose it is. But we live in a non-sensical world, these days, so it’s a lot more difficult than it seems like it should be.

Kick-starting my future is something I do — or don’t do — each day, with every choice I make. It’s a lot simpler than it sounds, and it’s a lot more complicated than it seems.

The thing is, we do this each and every day with the choices we make. We define our lives by our choices, and we further our plans with our actions. It’s not mysterious, it’s not magical. One thing leads to another, then another, then another. And all along the way, we have the chance to change direction, even slightly.

If you’ve ever thrown a ball, you know how wide of the mark you can go, if you alter the angle of your arm just a little bit. The same is true of our lives. One slight change in “angle”, and you can end up in a very different place than you originally intended.

A “little” slip on some stairs… a “minor” bump on the head… and your life can change in that instant. You can find yourself waking up each day, not knowing where you are, exactly, or where you want to go. Or you may wake up each morning wondering why the heck you didn’t get to where you were going the day before.

The brain is an amazing thing, and it’s surprisingly easy to disrupt in life-altering ways. We constantly take it for granted, like electricity or hot-and-cold running water. They’re all supposed to just work, just be there. And when they don’t… when they’re not there, we’re thrown into a state of chaos and confusion that blocks our ability to deal with anything.

The thing is, we tend to get stuck at that place of chaos and confusion. Perhaps because brain injury “rehab” is big business, with plenty of facilities billing plenty of hours to insurance companies, we don’t see a wholesale rush towards figuring out brain injury the way we should have long ago. Too many facilities make their money from people in need of help, rather than getting people back on their feet, never to need them again, so where’s the impetus to properly serve the brain-injured population? There are lot of us, with over a million TBIs added to our numbers, each year in the United States, alone, so I’d expect someone, somewhere to figure out how to end the suffering and teach people how to get back on their feet.

But no.

Well, never mind. Because there’s nothing I can do about that. What I can do is share my own experiences for everyone who’s interested in actually doing something about their situation, rather than staying stuck in something that can actually get fixed.

We all need a good dose of reality, when it comes to brain injury. That goes for health care providers, as well as those of us who get hurt. The brain is highly vulnerable. And the ways it’s most likely to get hurt are ways that hit us where it hurts the most — in our executive functioning, in our ability to plan and follow through, in our accustomed patterns that fall apart and plunge us into a steady state of anxiety… which builds up over time and impairs our ability to heal over the long term.

When we understand the true nature of brain injury (and don’t just get caught up in recycled notions that came from investigations done back in the infancy of brain research), we can also see that it is survivable.

We can — and do — recover from brain injury.

No one can take that from us. No one. Not any of the “experts”, not any of the scientists or neuropsychologists or psychiatrists.

The thing is, “recovery” means more than just restoring prior functionality to the injured brain. ‘Cause people, once the connections in your brain are disrupted, they stay that way. You can’t rewire broken connections. But we can — and do — create new connections that may function a little differently, but are still every bit as useful (sometimes more useful) than the old ones. And ironically, in my case, I find that some of my new connections are much, much better than my old ones, because I formed them with more life experience than before.

What we’re recovering is our personhood. Our dignity. Our self-respect. Our individuality. I think the brain injury rehab industry lacks an understanding of how much more important that is, than any level of physical or cognitive processing. People get hurt all the time. We break bones. We get cut up. We get smashed and smooshed and crushed. And then we recover. We may not have full range of use after we heal, but we get on with our lives. We may limp along or not be able to reach over our heads to get stuff or have to stop shoveling our own snow, but that doesn’t keep us from living our lives.

Same thing with brain injury. We may not restore our brains to their former glory, but we can adapt. Losing certain brain functionality is not the problem with TBI recovery. It’s losing our Sense-Of-Self that does a number on us. It’s the panic that sets in when we find ourselves doing things that are “unlike us”. It’s the repeated little shocks of being surprised by one thing after another that didn’t used to surprise us. It’s the gradual disappearance of our friends and family who used to know us as one person, but can’t adjust to the new person we’ve become. That loss of the Self, that erosion of security about who we are… that’s the biggest hurdle to overcome with TBI.

Because if you don’t deal with that, your functional recovery is going to lag. Brain injury recovery is a re-learning process. It’s all about re-training the brain. And if you’re totally stressed out over everything, you can’t learn properly.

It’s that simple. And it’s that complex.

And it doesn’t need to be the big-a** mystery that we make it out to be, because it has to do with the braaaaiiinnnn.

Brain injury recovery is a matter of living your life. Learning to live your  life. Teaching yourself how to get on with things, when everything looks different, feels foreign, and doesn’t square with how everything used to be.

It’s about choice. Action. Reaction. Learning. Adapting.

And when we tend to our present, choosing to learn from each and every conscious moment, we move ourselves towards a future of our own making.

As the current year winds down and the new year approaches, I hope you can own that, yourself, and — whether your brain is injured or not — take responsibility for a future you can absolutely positively make up as you go along.