Time to head down the road again…

road with trees on either sideYesterday was a long day, for some reason. I went out to run some errands, then got caught up in traffic and spent more time than necessary at the grocery store. All the people shopping for dinner were a steady source of distraction, and by the end of my visit, I was worn out.

I also had to find a replacement remote, and I went to two different stores, but I had a hard time figuring out what was what… I couldn’t find the electronics aisle in one store, then I couldn’t find remote control that I liked in the other store.

So, it’s back to the drawing board. I’ll probably go out today, in a little bit, to an actual electronics store. There’s a “big box” one about 15 minutes from my place, and although I don’t like going in there, I’ll take one for the team.

I need to get something else at a nearby store, so the mall looks like it’s in my destiny, today. Or maybe not, because it’s Easter, and I’m really tired today.

I really need a walk. I’ve been cooped up inside for what feels like months. Actually, it has been months since I was free to just pick up and head down the road. Too much snow. Too much cold. Too many crazy drivers. But today, it’s quiet. Everybody’s either at church or their sleeping in before Easter dinner.

This would be my chance to pull on my walking gear and head out.

I think I’ll steer clear of the woods, though. My balance hasn’t been great, and I’m concerned about slipping and falling – especially since the snow melted so quickly and there are bound to be slick and slippery spots in the woods. I’ve already clunked my head, this morning — just a minor clunk, nothing to worry about. It was a wake-up call that my coordination isn’t great.

So, I have to make choices accordingly.

The main thing is that I keep going, keep progressing, and take care of everything that needs to be taken care of.

Onward.

Up again, down again, up again, down again

some days are heavier than others. some are not heavy at all

Lately, my life has been pretty … variable.

My mood has alternated between great(!) and meh and dismal… and then back again.

It’s all part of it, I suppose. Just life being life, work being work, family being family.

Steady on… Everything cycles around.

Everything.

“Down In a Hole” – Rediscovering Alice In Chains

volcano hole in the groundYesterday, I was wandering around the interwebs, and for some reason, I ended up listening to an old MTV Unplugged show featuring Alice In Chains. They used to be played on the radio all the time, when I was still listening to the radio, instead of listening online, and I remember well, singing along with “Rooster” and “Down In a Hole” and other songs I don’t know the name of.

And it felt great to listen to those songs again. For two reasons:

  1. I can completely relate. The songs really speak to me, especially on days like yesterday. It really felt like I was down in a hole, and that everything was conspiring against me. Those songs especially remind me of how intensely I used to relate to them about 10 years ago, and that old feeling is familiar and comforting.
  2. I realize just how far I’ve come in my recovery. Those songs used to mean so much to me… but now they’re more important to me as intermittent reminders, occasional reassurances. Something to keep me balanced and reminded that life has its ups and downs, and continues on, nonetheless.

I don’t think I’m going to go back to listening to Alice In Chains on a regular basis. I start to feel a little depressed, when I do that.

But it’s good to remember, they’re still there. And I can tune in to listen to them, anytime I need that.

And so my Tuesday begins.  Onward…

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.

Brain injury awareness doesn’t just work for March

brain injury infographicMarch is winding down, and Brain Injury Awareness Month (March) is disappearing into the rear view mirror.

Again.

My feelings about “awareness months” are mixed. It’s good that additional focus is brought to some issues. But they don’t stop being issues when the month is over, and it sometimes feels like the information then gets eclipsed by other kinds of awareness months.

One of the things that really bothers me about it all, is that it’s so virtual. A lot of it is online, so you get this information download about a topic, but you don’t really encounter real people who are affected by it. No matter how aware you may be about a subject, if you don’t have real-world experience with it, and you can’t put a face and a person to the name of the issue, there’s only so much good it’s going to do you — or us.

Maybe I’m being cynical. Or maybe I’m just being realistic. All I know is, organizing my thoughts and activities around a specified topic that someone else decides on, doesn’t sit all that well with me. Especially because I live with this every single day. Not just for the month of March.

Don’t get me wrong — I’m grateful that people are educating. But I also hope that the education actually goes somewhere and accomplishes something more than… just awareness.

Well, that was interesting… good times, bad times, good lessons

winter frost tree downThis is the story of my last three days. Snowstorm. Trees down. Wires down. Not much going on, other than winter. Storms. Electricity out. No heat, no running water, no television, not much connection with the rest of the world.

Living on battery power, using the mobile phone to contact the rest of the world. Staying close to the fireplace, keeping the fire going all night long, finding different ways to get meals and keep occupied. Waiting for the power to be restored. Hearing one thing, then another, then another.

Waiting, just waiting. Watching the snow fall. Moving it off the driveway. Off the roof. Off the back deck and stairs. Lots of snow. Half a meter’s worth. 18″ worth. Heavy, thick, packed snow.

And now I feel it. In my back, my legs, my arms, my shoulders. Bruises all over my legs, where I slammed against the snowblower. Cold. It was cold. And the all-over ache that comes after hours and hours of being tensed against the cold. Countless trips up and down the stairs to get more wood for the fire.

All in all, it wasn’t terrible, being out of power for two days. Longer than that, and it would have been a problem. We would have gone to a hotel, because my spouse can’t afford to get sick, and they’re more susceptible to cold than I am. We came this close to going to a hotel, then decided against it — the place we called said there were a lot of families checking in, because they lost power, too. And having a lot of kids running and screaming (’cause that’s what kids do, when they’re cooped up, let’s face it)… well, that wasn’t the most restful option.

Better to stay in our own space and try our best to stay warm and dry. Wait it out. Gather around the fire. Rest. Wrap ourselves in blankets and relax. Wait it out. Just wait.

And we did. Power was restored 3 hours sooner than they said it would be, and that was fine. In the bargain, I scored some major points at work for continuing on through with my work, despite having no electricity or heat or running water. I managed to logon to my work by connecting through my phone and then sitting in my running car to keep the power going to it, so I could complete some must-do tasks.

And now I have a reputation for being that much more of a can-do person, with total commitment to getting the job done. So, something useful came of it. Which is fine.

So it goes. I handled this storm considerably better than I handled others in the past. I kept my cool. I kept focused. I wasn’t a total jerk to my spouse. And I came out of it ahead of the game. I’m wiped out and would love to sleep for 12 hours, but I’m also keenly aware of how much good it did me to really move. And not spend all my time in front of a computer, like I’ve been doing for the last however many years.

It was good to have the enforced break. Away from the constant hum of machines, away from the low-level buzz of non-stop electricity. Listening to the wind. Getting out in the snow. Just living a very basic life, and being profoundly grateful for everything I have.

Now it’s time to go get some supper. The refrigerator isn’t smelling all that great. It stayed cold, but not cold enough. So, off I go to replenish it. And get something really good for dinner tonight. Something filling, substantial… and hot.

Just as it should be.

Onward.

Brain injury awareness month – again. This year, the focus is on #braininjury #recovery

brain-injury-awareness-month

It’s brain injury awareness month again. A few years ago, I think I didn’t even realize it until the end of March, so I’m ahead of the game, this year. Of course, the only reason I found out, was that I saw a sign posted on the door of an adult daycare center that’s located in the same building I had a meeting in, earlier this week.

For this month, I’ll continue my focus on recovery and rehab. Yes, it’s absolutely important to understand concussion and TBI and brain injury in general. What’s often missing, is the focus on recovery and the possibilities for getting back to a really great life.

Because even if things have changed dramatically for you because of brain injury, it’s still possible to have a rich and fulfilling life. Just because your brain changes, doesn’t mean your life is over. And too often, rehab folks or the medical establishment just give up on us. That’s partly because of insurance, but it’s also because they just don’t know about or see people who are actively recovering from brain injury.

We’re pretty much invisible, that’s for sure.

 

 

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… 😉

Movement is not optional – it’s gotta happen

pineapple splashing into waterMy left shoulder is still killing me. But I know how to fix it — for the near future and in the coming weeks and months:

Movement. Keeping mobile. Not letting myself sit still for hours and hours, like I have been for the past several weeks.

Or maybe it’s been months. I’ve had a lot going on, lately, and 90% of it has been in front of a computer. Yes, I’ve gotten a lot done, but it’s come at a price.

So, it’s time to change that up. Move my entire body (not just my hands). Get up and walk around the room, while I’m on the phone. Get my morning exercise AND build in additional movement (especially weight-bearing movement) throughout the day. Don’t just sit still for hours on end. That’s kicking my butt.

I’ve got a plan. Now, I’m going to get up and walk around a bit.

Because that’s gonna keep me knit together in one piece.

Onward.

 

Doing what has to be done — and loving it

traffic cone standing on a muddy patch of groundWell, I’m off to an interesting start, this morning. I got a good night’s sleep, then I got myself out of bed at a decent time and got my exercise. Did some stretching. Did some lifting. Rode the exercise bike for a little longer than usual. I gained a few pounds over the past couple of weeks of intense work-eat-sleep-work cycles, and I’m not feeling that great, as a result.

Sluggish, stiff, the opposite of limber. And weak. That’s how I’m feeling, these days.

So, I’m doing something about it. And it’s not very pleasant, I have to say. It’s downright painful, in fact. Getting myself back on a regular routine, after going down the rabbit hole of overwork isn’t something my body is very happy about. It wants to languish. It wants to just keep eating and sleeping and working. But I can’t give in to that. Because that leads to more of what I’ve got now — weakness, chronic pain, and trouble doing basic things like brushing my teeth with coordination and putting my socks and shoes on easily. When my body isn’t working well, those things — and more — fall apart.

And I can’t let that happen.

Some days, it feels like a constant struggle to just maintain a normal pace. Some days, it is a struggle to do that. But struggle just comes with the territory in my life. Nothing important happens on its own, in my experience, and I tend to have different ideas about what should happen, compared to the rest of the world. So, to do things like have some peace, I have to structure my  life very differently from most people.

I’m not particularly interested in living in a steady stream of busy-work and mindless distractions to take my mind off the poor choices I’ve made. I’d rather just not make those poor choices, to begin with. So, that means I opt out of so many of the activities that others take for granted. I keep my social media interactions to a fraction of what most people have — including Facebook. I try not to get sucked into the current news cycles, including all the in-depth “analysis” (which just boils down to propaganda, from what I can see). I don’t go out to movies or concerts. I don’t drink alcohol or smoke, and I avoid bars and clubs when I can. I take time to cook decent meals and I keep my television viewing to a minimum, watching just a few shows — many of them on-demand, rather than clicking around the channels looking for something interesting.

And weekends I keep as low-key as possible. Every now and then, I’ll go out and do something, or I’ll launch into a flurry of errands and projects, but I try to avoid the rest of the world as much as possible on my weekends. I have to deal with everyone the rest of the week, so I give myself a break on Saturdays and Sundays.

Most people I know would hate living like I live. They’d find it boring. Or they’d get nervous in their own company. They wouldn’t like to hang around the house with only their own thoughts (and some interesting reading) to keep them occupied. They’d probably go out looking for something to take their mind off all that.

But for me, this is what I have to do to keep myself stabilized — and sane. Having these two days to decompress is not optional. Sure, sometimes I’ll venture out to spend time with friends, but the more active I am on a Saturday or Sunday, the more low-key my other day is. And the downtime is bliss. Sheer bliss. And I’m not sure I could live without it.

I was talking about this with a friend last night — somebody I haven’t seen in quite some time. They were asking why I don’t do as much as I used to, and I explained that keeping up the 9-to-5 work schedule, and then doing all the extra activities I used to do with my spouse, just got to be too much. It wore me out, and I needed some downtime. And they got it. Because over the past couple of years, they’ve been divesting themself of a lot of the “trappings” of a settled life. Rather than keeping up a house and paying a mortgage, they’re traveling around the country, house-sitting for friends for a month at a time, and then moving on to the next thing. Some people cringe at the idea, but it was working well for them.

It’s what they have to do, at this point in time. And it’s working. And they love it. Just like I’m keeping my life low-key on the weekends, cutting back on online social media stuff, and following the news a LOT less than I used to, while the rest of the world goes crazy around me.

To some, these would seem like sacrifices. And in fact, 15 years ago, before my 2004 mTBI, I would have really fought against a lot of these choices. But over time, I’ve realized that this is really the best way I can possibly live my life, and enjoy myself while I’m at it.

I’ve had a really busy couple of weeks, so I’m going to rest as much as possible, today. Do some reading. Think about stuff. Or just stay in bed. We’ll see what happens. In any case, it’s all good.

The rest of the world will be there when I resurface in another 24 hours.