Maintain… maintain

files and papers stacked in two columns
This is pretty much how the last week felt for me.

I’ve had a really busy week.

After a week off.

A real contrast. Very extreme.

Ouch.

Literally.

Ouch.

But for all the busy-ness, I didn’t move as much as I should have — and normally do. I spent most of the past week sitting. Just sitting. In workshops. Not moving around, not stretching my legs, but sitting and listening and talking.

Ouch.

Just getting up and walking to the cafeteria was painful. It’s the worst of all worlds — being sedentary and having to concentrate really hard. Just doesn’t work with me. I can do it for a day, but three days in a row?

No thank you.

Now, my extremes continue, as I launch into a day full of errand-running and travel and helping my spouse with a fundraiser event. I’m just driving. Not “working” the event. I’ll have time to myself while the event is going on to do some fun things and also catch up with a friend I haven’t talked to in a while.

So, even though it’s busy, it’s all good.

The past week has really brought home, just how important it is for me to move regularly. On vacation, the week before that, I was in motion on a regular basis. Even though I was “off work”, I still had plenty to keep me busy — though in a good way. Buying groceries so I could make us nice brunches and sandwiches for the beach… arranging for special permits, so we could access different parts of the area and have a really great experience… getting out and about to see what was going on in the town… and exploring the beaches and hiking paths.

It was a very active “time off”, and it felt great. I didn’t get much done that was sedentary, like reading or blogging, but that was perfectly fine with me. It was a fair trade.

But now this past week… ugh. I was too busy to get in my regular exercise, I didn’t get enough restful sleep, I had appointments in the evenings that cut into my regular schedule, and I had to start early each day, so I didn’t get as many morning workouts as I needed. And my daily eating was off — I ate too much food, and it was the wrong kind.

Fatigue. Brain fog. Pain. Confusion. Irritability. Far less functionality than I normally have. And the constant nagging feeling that I’m missing something, I’m forgetting something, I should be doing something I haven’t yet thought of.

I’m glad that’s over.

Now I can get back to my regular routine. Get a decent night’s rest, each night, exercise each morning, eat the foods that work for me, move around during the day, stretch regularly, drink plenty of water, and get back to life as I’ve developed it.

There’s a reason I do what I do. And there’s a reason I keep doing it.

I’ve tried the other ways. They seriously just don’t work for me.

But I’m good, now.

I’m good.

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Where privilege, power, money, and influence fall off

1923 broken down car with wheel off
Sometimes, a wheel just comes off – I just wish I hadn’t “driven the car” longer than I had to

So, my life is morphing, and that’s okay. It’s good, actually. It’s a long time coming — a wake-up call, reminding me where I really fit in the grand scheme of things, and prompting me to “buck up” and take matters into my own hands.

Not be dependent on a system that’s inherently hostile to me, by design.

Take responsibility for my own situation, and do everything I can to advance my own cause, as well as support others who need similar help. That’s what this blog is all about — putting my own personal quest / journey out there, in hopes that others might just benefit from it as well.

Brain injury is woefully misunderstood. Brain injury rehab resources are irregular and over-hyped and work differently for many different kinds of people. Plus, they can be expensive and/or inaccessible to folks who aren’t rolling in money. So, this blog is intended to fill certain gaps that exist in the world — by design.

It’s been said several times by people on this blog (who have a history of involvement in the brain injury rehab field), that brain injury can be a “cash cow industry” that’s seen its share of fraud and exploitation. I can totally see how that can be — you’ve got patients who are impaired to various degrees (some of them severely), who can’t advocate for themselves. You’ve got friends and family and loved ones who know precious little about brain injury, what to expect, how to handle it, etc. And you’ve got an insurance infrastructure that will pay for some things, but not for others. Considering how vulnerable brain injury survivors are, it’s the perfect industry to get into, if you have no morals or ethics… or fear of burning in eternal hellfire and brimstone.

Even if you’re a good person with the best of intentions, keeping to the straight and narrow must be awfully difficult in that industry. My first neuropsych (NP) bucked the system for years, providing services to me at a discounted rate and submitting insurance claims with the billing codes that worked. The later NP apparently never mastered that skill. Either that, or they didn’t actually want to. They said they spent a lot of time fighting with the insurance companies, but it seems to me they didn’t explore every conceivable loophole available.

I just can’t get free of the belief that, if they’d wanted to find a way to help me at a sustainable level, they could have found it. Find a way or make a way. The fact that they didn’t, and then they charged me more to make up the difference… maybe that’s standard practice in the NP field, but that won’t fly with me.

So, the long and short of it is that here I am, on the business end of the rehab cattle prod — like so many others, removed from regular support because it’s overpriced, and I’m not paying market prices. Assigning market prices to services to vulnerable people seems… odd to me, anyway. Hell, having healthcare be market-driven strikes me as a complete departure from the way healthcare should be handled, anyway. Hospitals were often started by religious groups, and the concept of healthcare was expanded in the Roman Empire after Christianity became the official religion. So, there’s historically been a religious/spiritual element to healthcare.

Historically, that is. Over the past 50 years, perhaps because of the decline in religious fervor, it’s become more of a commodity. And healthcare, in my opinion, can be about the most predatory kind of market I can think of.

I mean, who makes their money off vulnerable people who have nowhere else to turn? Seriously… who does that?

Well, anyway, that’s pretty much how the world works, these days. Of course, there are healthcare providers who will step outside the standard-issue money-making paradigm and act as true healers. But those people can be few and far between. And I think it must be easy for young clinicians to fall into the dominant mindset of charging as much as possible for services rendered. Treating healthcare like a provider-consumer arrangement, where everybody is expected to be a “good consumer”.

That logic makes no sense to me at all. A few years ago, I wrote a post I am a shitty healthcare consumer, and it still holds true. I will never, ever be comfortable with the paradigm that reduces everyone in the healthcare equation to providers and consumers, as though sick and vulnerable people are actually in decent enough shape to “fulfill their role” and the power dynamics, privilege, and influence were equal.

That’s what that dynamic seems to expect — that doctors and patients are on equal footing. But we’re not. Not even close. They have the power, the knowledge, the influence, the ability to commit us against our will or prescribe treatments that no one else can. They hold the power over our lives and deaths, at times. They hold the proverbial keys to access to information and resources (diagnosis, meds and rehab, for example), which only they can wield in the public arena.

So, expecting patients to be “good consumers” is a stretch. It’s a stretch invented by people who don’t seem anywhere near aware of the inequities of power, influence, control, and knowledge. With great power comes great responsibility. Somewhere, things are falling down.

In my case, it fell down big-time.

My most recent NP knows:

  • I am the sole provider for my household
  • I have a dependent spouse who is unable to work regularly and is becoming increasingly disabled
  • I am being paid 20% less than originally promised, because my employer got acquired, and the new overlords don’t feel like paying out the bonuses I earned (which were included as part of my overall compensation)
  • I have specific challenges which make my day-to-day more difficult than they “should” be for someone with my base level of intelligence
  • I have no other reliable source of day-to-day support
  • Other people who try to help me, don’t have the level of expertise to understand the nature of my difficulties, so they mistake my neurological problems for psychological ones and try to treat me for that
  • I have to leave work early and drive a couple of extra hours each Monday to get to my sessions (which is a real hardship for me at times)
  • I have almost no retirement savings, thanks to the organizational problems after my mTBI in 2004
  • I have many house repairs to make, which will drain what savings I’ve managed to put aside, over the past 3 years. By the time the essential repairs are made, I will have no “safety net” left.

None of these issues are a problem for the NP. They are married to a fully employed spouse, they are on staff at one of the top hospitals in the nation. They teach at a big-ass university that’s one of the top schools on the planet. They have two offices in the same medical building. They live within a few miles of their office. They have the time and the money to take two weeks off to take their family to Paris and other points around the world. They have a PhD, and they present at professional conferences, as well as offer public education sessions. They’re in “thick” with some of the leaders in their field, being trained by some of the top docs. They’ve got a full roster of patients — a waiting list, in fact. And they’ve gotten rid of all their former clients who were on the type of insurance I have, because the insurance company won’t pay them their rate.

So, basically, they’re set.

And I would think, comparing their situation to mine, that they’d at least be able to cut me some slack. If I were in their shoes, I’d make an exception, because it can be done. One client out of tens doesn’t pay full price… big whoop. The difference is easily made up. I know, because I myself have been in many situations where I ran events where some people could pay full price, while others had to get a break. That’s just how things work in the world where I live — some have more money to contribute, while others have less money but other talents to add. You work a deal with people. You make the most of what they have, and if money isn’t one of those things, you find another way for them to contribute.

In this world, inequity abounds. What we do with our privilege and power says a lot about us as human beings. And if you apply the same measures indiscriminately across the board, expecting everyone to operate on your level and chip in the exact same amount of money as the next person, that’s not just unrealistic and unfair, to my mind, it’s unethical. It’s kind of shitty, actually.

So, yeah, I’m not bothering with that NP anymore. I’ve already deleted their contact details from my phone.

Maybe they meant to be shitty, maybe they didn’t. Maybe they’re just overwhelmed by their responsibilities.  Whatever. I don’t know what goes on the hearts and minds of others. But I do know that in the patient-doc dynamic, they were the one with the power, and they chose to use their power to disenfranchise me.

Screw that.

Screw them.

I’m just sorry I didn’t see this sooner.

I could have saved myself a lot of money, if I’d just moved on without giving them the benefit of the doubt.

Whatever.

Onward.

 

A nice long weekend – a chance to reset

duckling chasing a cat on a roomba
You just gotta keep going till you’ve covered all the bases

It’s Saturday. I get another chance to get myself straightened out, today. This week has been pretty demanding. I’ve got a lot going on at work, and unfortunately, a lot of the people I’m dealing with in other offices don’t actually respond to you unless you “get heavy” with them. I hate that. I hate having to throw a fit, threaten then, cc my (and their) boss, and push them to do what they should be doing from the start, anyway.

A lot of the people I’m dealing with are much younger than I. They’re young enough to be my children (which is a very strange thought, to be honest). And they’re often from the other side of the world. For some reason, they seem to think they know what they’re doing. They don’t. They still have a steep learning curve ahead of them, and they don’t seem to understand just how much I — and others at my level — really know. We’ve already been through their learning curve, and we’ve learned from experience… for 15-20 years more than they.

But do they listen? Do they respect me, and others like me? Apparently not. They love to lecture me about “how things are” and “what’s expected”. Oh my God. I just don’t have time for their strangely supercilious attitude. And — God help me — I have to resort to threats to get them to pay attention, when all I want is for them to work collegially with me and do their damn’ jobs. All I want is to work with people who act like peers, who respect others, who are focused on doing the right thing — not the politically expedient thing.

I know, I know… I’m being unreasonable again.

Well, anyway, it’s Saturday and I have the whole weekend to reset — even more than that, because it’s the Fourth of July next Tuesday, and a whole lot of people will be taking Monday off. So, I effectively have a 4-day weekend (where I only use 3 of those days). I look forward to Monday, actually, to get some things done. To think. To strategize. To get my head together and think about things in deliberate the ways that work best for me.

I’m looking forward to having some time to read and think, for 3 of those 4 days. I’ve been so busy at work and with other projects, I haven’t had time to zero in on my TBI work, lately. That’s been the case for over a year now. When my old neuropsych moved away, I lost a valuable connection that kept me focused on my TBI recovery in some really productive ways. Losing that weekly presence in my life was a significant loss. We do keep in touch as friends (not in a rehab context), but it’s not the same. I need to see if I can incorporate more TBI stuff into our conversations. It’s tricky, though. Not sure how best to do that…

Anyway, for some reason, life feels like it’s opened up for me. I feel less pressure, for some reason. Maybe because I’ve decided for certain that I’m not staying in this current job past the end of the year. That helps. Seeing an end to all this foolishness… it gives me hope. I’ve made peace with it. I’ve done my 2 years of duty here. It’s time to move on. It’s been time to move on… but skipping out on a job before 2 years are up, is generally not seen as a good thing. At the end of this month, I’ll be at the 2-year mark, so that’s my virtual starting line. Then I can start really pursuing other opportunities. And in the meantime, I can still do my work — and enjoy it as best I can.

This past week, I actually applied for a job that someone approached me about. It looked perfect for me in terms of responsibilities and money, and I applied for it. But I never heard back from anyone, so I guess it’s not going to happen. I may “ping” them next week, just to see what’s going on. Maybe they already found someone.

Well, whatever. There are no perfect jobs, and maybe that one would have been a pain in the a$$. I may never know. Just keep moving along. Just keep moving along.

It’s Saturday. The first day of a long weekend (even with that single day in there). It’s a chance to reset my sense of things, to settle in to do some actual thinking about stuff. I’ve been in reaction mode all week, and that’s a real drain.

Time to think. And get some stuff done on my own, rather than wrangling with other people and their issues.

It’s pretty awesome when that happens. And it’s happening now.

Onward.

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Whoah – I was NOT expecting this

Namibia Desert
It feels like I’m slogging through a desert, sometimes. But there’s an oasis in the distance… I think.

Back when I fell in 2004, I was positive it wasn’t going to bother me.

So I hit the back of my head on those stairs. So what?

So I was having trouble sleeping, and I had “anger issues”. What did that have to do with anything?

Well, I found out.

Over the course of months (and years), I progressively lost my capacity to perform at the level I’d been at before. I couldn’t interact effectively with people at work. I couldn’t understand what they were saying, and I couldn’t make myself understood. I couldn’t hold my attention on anything for more than a few minutes. I couldn’t learn the things I needed to learn — and my job as a programmer was really all about learning.

I was crazy-impulsive, and I couldn’t seem to keep anything straight in my head. I bounced from job to job, progressively becoming less and less able to function, increasingly unable to even conceptualize how to program.

All the things I’d done almost for 15 years were suddenly a big-ass mystery to me, and I was lost… lost I tell you.

So, I changed direction. I moved into different types of work. Less programming. More project oversight. Project management. More people, less machines.

And it was fine for a while. It was actually really good for me. For four years, I worked with an international group of team members all across the globe, coordinating their work on most of the continents. I did all kinds of conference calls, trainings, projects, you name it. If people were involved, I did it. And there was less and less actual programming involved.

I did some things on my own, and some of what I did was pretty cool. But my thought process was convoluted, and looking at the code now, I’m surprised any of it actually ran. It ran, but I also ran out of steam before I could refine and finish my concepts. It was demoralizing, too. Because I’d get so tired — mentally tired — with all the work. I couldn’t keep going on the things I used to love the most. And I couldn’t seem to keep up on my skills.

That persisted for a number of years. I tried to get back into the programming world about 5 years back, but when I interviewed and people saw how I coded, they actually laughed at me. I was a has-been. Washed up. I couldn’t hold my head up. I could only scurry back to my corner and stay in my non-programming domain.

Lately, however, something has changed. It’s shifted. It’s actually taken a dramatic turn for the better. And all of a sudden, programming makes sense to me. Stuff that used to confuse and frustrate me… it doesn’t anymore. I find I can actually concentrate for extended periods of time, which is key and critical for this kind of work. I don’t lose my temper as quickly, I don’t give up as quickly. I can keep going, keep analyzing, keep working at problems I need to solve. And that’s a huge change for me.

It’s a change I was not expecting.

At all.

I had pretty much given up, to be honest. I had abandoned the idea of ever being able to seriously program again. Making up my own personal projects, where I able to move at my own pace, was one thing. Being an industrial-strength developer again, where I could crank out professional-grade code… that was something very different.

Now, though, I find myself more and more able to handle the extended process of deep thought and learning that was once so much a part of my daily life. I find myself more and more able to keep calm in the face of adversity and think rationally through sticky quandaries that used to stump and frustrate me. It’s a very different feel — a very different situation — a qualitatively different sense, compared to where I was, just a few years ago.

So, yeah — life after TBI does change. It improves. It shifts. It has plenty of surprises. Not everyone has the same experience, of course. Some people recover much more quickly than I have. Others not as quickly. Some never get back to where they want to be, while others may hardly notice a difference in their lives after head trauma. It’s always different from person to person. But every now and then, commonalities appear.

And that’s what we have to focus on – our commonalities, so we can learn from each other.

Problems after TBI are rife and rampant. We have tons of them, in fact.

We just have to keep going, to get to the other side — whatever “side” that may be for us.

And the weekend is right around the corner. Now I can get some things done.

blue sky over the prairie
Just keep going…

I hate being really busy. Some people love it. I hate it. I find it confusing and irritating and counter-productive. “Don’t think, just react,” seems to be the battle cry of the modern world, but if you think about … how far has that gotten us?

I think we could do with more thinking and less reacting. Living life like it’s not a game being played for fun and profit, but simply — yes, simply — doing the best you can with what you have.

Things have been cooking… I’ve talked to two recruiters in the past week about potential jobs. Neither of the two prospects was a good fit, and that helped me clarify more how I want to move forward. I’ve been wanting to “hole up” and dig into a future in cutting-edge data. You know, just block out the rest of the world and live my life with data.

But as much as I would like to dive into a sexy new field, I’m not sure I really want to be chasing after that. I’m not up on all the latest technology, and people are looking for pretty intense qualifications. I could get those qualifications, but it’s more trouble than feels worth it. Plus, it’s not good for me to huddle off in a corner by myself and never have contact with other people. I really need interaction. If I work from home more than 1 day in a row, I start to get irritable and irrational. Interacting with people — not just numbers — keeps me sane.

Rather than trying to rekindle the glory of my past (when I could spend hours and days and weeks on end all by myself, wrangling with code), I now want to focus on more social types of work — more interactive, more socially stimulating. I work well with techie people. Geeks. Nerds. Subject matter experts. I love trading knowledge and trivia tidbits. And they get along with me pretty well, I have to say. Because we’re “of a kind”.

And at this point in my life, I need to stick with what I’m best at and develop from there, not cast about, looking for the next greatest thing. The tech scene is totally different, today, than it was 20 years ago. I should know. I helped build it, 20 years ago.

Anyway, these are just some things on my mind. Work has been extremely busy, lately, and nobody knows what’s happening… if we’re going to have jobs in another few months. There are rumblings in the rumor mill (of course there are, when aren’t there?) In the midst of it all, I’m extremely busy with my work — so much so, that I haven’t had as much time as usual for my own interests. Like this blog.

I have a handful of other irons in the fire, and I’ve been working on them. But everything feels rushed and cramped, and I hate that feeling.

Busy. Too busy.

What I actually realize about myself is that I push myself to busy-ness when I get tired. And I’ve been getting more and more tired over the past weeks. So, I have added more stuff to my plate, which is not helpful.

It’s unsustainable.

So, I’ve been getting more sleep, lately. And I’ve been thinking more strategically. Not just diving in with “tactics”, but stepping back and figuring out how I can do what I want to do in a more clever, more manageable (and sustainable) way.

Lo and behold, I got some ideas.

Some of it has to do with having a longer timeline for some projects — not having to have them done right away, but giving them time to percolate, so I don’t sink a ton of time and energy into things that aren’t actually good ideas, to begin with.

Some of it is about keeping things simple. Just narrowing my focus and concentrating on a select set of a handful of projects, instead of casting far and wide and spreading myself too thin. I forget just how scattered I can get, how my brain gets going around developing side-interests, off-shoots of concepts and ideas and interests. When I get tired, I’m even more susceptible to that tendency. And I’ve been tired.

So, how to avoid this in the future? I’ve gone ’round the barn on a handful of boondoggles, over the past weeks, and I need to not have that happen again. I’m doing what’s necessary to keep myself on track now, and I need to keep that up.

The weekend is coming. I can get a whole lot done, when I’m focused and concentrating on what’s in front of me, instead of letting my brain get scattered and run in every conceivable direction.

Less is more, sometimes. And I’ve got a lot to do. So, it’s time to do less. And get more done.

Yes! The weekend. I have a feeling this is going to be good.

The day after that inevitable sleepless night

sleeping chameleon
I’m feeling a little out-of-it today.

So, my sleep has been going really well, lately. I’ve been getting anywhere between 7.25 and 8.5 hours a night, regularly, which is great.

Last night was not one of those nights. I tossed and turned, couldn’t get comfortable, had a lot of aches and pains, couldn’t turn my head off… you know the drill. And all the while, my head is thinking, “Dude, you need to turn yourself off. Now.

Easier said than done. I think I got maybe 5 hours…? If I was lucky. And now I’m feeling out of it, foggy, irritable. Not the way I want to feel, first thing on Monday morning.

Every now and then I have a night like that. Sometimes, it can’t be helped. Of course, my schedule was way off — I changed things up in a big way, yesterday, and went for an afternoon swim with my spouse. We’ve been meaning to get to the really excellent saltwater pool of a hotel about 20 minutes from home. They have a great fitness center, too, and they’re less expensive than a lot of fitness centers I’ve been to. Plus, they have “adult time” blocked off for adults who just need to do laps. Or sit in the hot tub.

My spouse has some pretty significant mobility issues, and they need to get in a pool and move — take the gravity pressure off — as well as sit in the hot tub for a few minutes to ease the back pain.

So, we actually got our sh*t together and headed up the road shortly after noon. Got there in good time. Signed in, changed, and headed for the pool. We took our time, obviously, because of the mobility business. But before long, we were in the water.

Unfortunately, the guests weren’t honoring the “adult time” block — there were a bunch of screaming kids in the water, splashing around and generally being kids. That made it a little challenging to just chill out and do exercises/laps. Eventually, the kids left, so I could do some laps and my spouse could do their water exercises in peace. Then the hot tub… just sitting in the water and soaking felt fantastic.

I also got to spend some time in the sauna. They have one of those, too, which is a huge bonus for me — I’ve been wanting to get in the sauna for years, but haven’t had access — more on that later.  I didn’t stay in too long (that’s not healthy — 10 minutes tops is recommended). But I did get a bit of heat, which is so important. Especially on cold rainy days like yesterday.

So, I got in a swim on the weekend, which is huge for me. And I can do it again, anytime I like. I got a sauna. I didn’t get on the weight machines, but I can do that some other time. They have good machines. A whole range. I look forward to using them.

And my spouse got their workout in, which is borderline epic. They’ve been saying they’d do it for months and months. And now it’s happened. And that’s a very, very good thing.

When we got home, I was wiped out. Just spent. I needed to sleep, in any case, and then the workout pushed me even further. So, I got a nap, when we got home. I slept for 2 and a half hours… then lay in bed for another 15 minutes. By the time I was up and around, it was late. I had to make supper. Then we watched the latest Jason Bourne movie. And that cranked me up. Then I got in trouble for putting my spouse’s delicates in the dryer (I put them on low, which is basically just tossing them around in a cool breeze, which I thought was fine). And it looked like I’d ruined one of their favorite tops… until we read the label, and it turned out I’d actually done exactly what they told me to do…

So, there was lateness.

And excitement.

And arguing.

And a bit of door-slamming on my part.

And then a little bit of humor, when my spouse came to find me and show me that the top was completely ruined.

It was a full day.

And I didn’t get enough sleep, last night.

But that’ll happen, now and then.

The important thing is, yesterday was a really, really good day, and we/I accomplished a helluva lot that needed to get done.

It’s Monday. Time to bring it.

Onward.

Morning fog… morning agitation

village in valley with fog and sunrise
Today I’m feeling foggy, like this village – but less pretty (Photo credit: Sebastian Unrau)

One of the most bothersome parts of TBI is the irritability that comes when I’m foggy and tired. Like today. And last night.

I have had a really long and full week. I wasn’t expecting it to be as challenging as it has been — a lot of people have been out of the office at a conference, so it’s been quiet. Kind of.

Lots of stuff has “blown up”, though. And that hasn’t been good. I’m taking it personally, when projects don’t go as planned, even though there are whole teams of people not bothering to pay attention, these days.

So, that’s been exciting. And tiring.

Meanwhile, at home, things have been wearing, as well. I don’t get a break, when I get home. It’s more work. Everything feels like work.

Of course, if I can get some extra rest, it’s fine. But that hasn’t been happening. If anything, I’ve had earlier days than usual, lately, and that’s been taking a toll, as well.

The toll is angry outbursts.

Getting more tweaked about things that don’t normally bother me.

Blowing things out of proportion.

And then feeling terrible about myself, because I couldn’t keep my cool.

So, I’ll try again today. Take a nap later.

And keep going.

Onward.

A less sedentary life

brain with arms and legs walking on a treadmillI can’t speak for anyone else, but I’m convinced that lack of exercise really has a negative impact on my mental health. When I am not exercising — or at least moving — on a regular basis, I get sluggish and “stopped up” and I become more susceptible to depression and feeling badly about myself and my performance in life.

Likewise, with fatigue. When I am over-tired and not well-rested, I cannot seem to deal with anything. Fatigue can come from not sleeping enough (like the other night when I had 5.5 hours of sleep – not good)… or when I’ve had a really full day… or even when things around me are going regularly and I’m rested, but I’m mentally tired from a lot of activity.

Sometimes I get tired in situations, after just half an hour of intense cognitive activity. That’s how it is with my current neuropsych. They are completely different from the last one I was seeing for all those years. This one is FAST! and they talk in rapid-fire bursts. It’s really challenging, I have to say, and at the start, it really put me off. It still makes me feel like a failure, sometimes, when they are shooting ideas at me — bap-bap-bap-bap-bap-bap-bap-bap-bap-bap-bap-bap — like they’re firing off a bunch of rounds from a semi-automatic weapon. And sometimes it really pisses me off.

But it’s good that they push me, after years of moving at a pretty slow pace. And in the year that we’ve been working together, I have to say I’m more cognitively quick than before. I  don’t always get what’s going on right when it happens — my short-term working memory issues seem to be pretty persistent — but I’m better at thinking back on what happened and piecing it together. Also, I’m better about just dropping it and moving on, if I don’t get it all. Once upon a time, I’d perserverate for hours, even days, trying to figure out what just happened. But now I’m able to just let it go.

If I don’t get it, I don’t get it. If I do, I do. Either way, I get by, and that’s what matters to me. I used to be pretty invested in getting it right, no matter what. These days, I’m happy with good enough. As long as it doesn’t get me in trouble. Sometimes it does, but I dig myself out and move on.

Now… back to exercise… Ideally, my life would have a lot more in it. I do typically exercise for 30 minutes, every morning (today I’m taking a break, because I need to recover from over-training for the past four days – recovery time is critical, and I’ve been skimping on that).

Some days, I get additional exercise at the fitness center at work. And on the weekends, I try to get out and move a bit. On Sunday, I went for a 2-hour walk down the back roads around my house, and it was great. So, I’m probably more active than most people I know. My brain works so much better, now that I’m exercising on an almost-daily basis. My thinking is clearer. I have more stamina. My mood is better. I’m just better overall. Exercise has saved my butt.

But my job involves a lot of sitting, a lot of computer work, a lot of talking on the phone. I have to type a lot of emails. I have to do a lot of number-crunching. Much of what I do requires that I sit motionless in front of a humming machine, and although I love the work, it drains me in its own unique way. Frankly, I was happier in my work when I was on a line at a factory during college, moving regularly and cranking out product that I could see and count and know was done right. I miss that kind of work. I don’t miss the noise and the grit and the stench, but I do miss doing that kind of extended physical labor.

The trick, I guess, is to figure out how I can do more work-related activities and move at the same time.

I have options. And when I think about it, some of the stuff I do, can be done while moving. I just haven’t gotten creative about it. I’ve been to rigid. Literally and figuratively. So, I’m gonna fix that.

One of the great things about my smartphone is that I can dictate. I do a lot of dictation — emails, blog posts, notes to myself — and I can certainly use it for that, instead of sitting at my danged desk, typing it all out. My hands don’t do well with a lot of typing, anyway. It’s not good for my handwriting, and it also makes them ache and stiffen up, which I hate. So, I need to have a bit of creative, pro-active thinking and actually use the tools at my disposal to improve my exercise quota. Just start walking and talking into my phone. See where that takes me. Literally.

When I’m making calls at home, I get some exercise. I pace in my living room… walking back and forth and also following the outside line of the big area rug that covers the hardwood floor, tracing large rectangles with my steps for an hour at a time. When I’m at work, not so much. I’m usually in my cube. Even when I’m in a conference room, I sit. That’s no good. If I have a conference room all to myself, I should be walking. I have a mobile phone for work, and I can be walking while I’m listening to calls. In fact, I think I’ll start doing that — especially on the calls where I’m just listening, not talking.

I need to get my butt up out of the seat and move around more, in general. One of my boss’es complaints about me is that I keep to myself too much. I don’t reach out to others. That’s true. I get caught up in my own little world, and I lose touch with everyone else. That needs to change. And I can do it. Stand up. Move. Go talk to the people I’m supposed to be talking to, anyway. Walk up and down all the stairs in the building. Learn my way around the place. It’s ridiculous. I should be moving around a lot more.

There needs to be more exercise in my life — not only because I’m getting older and it staves off the onslaught of age-related deterioration, but also because it’s good for my mental health, it keeps the blood pumping, and it can keep me from “rusting out”. ‘Cause rust never sleeps. Aging paranoia aside, when I’ve been moving a lot, I’m in a much better frame of mind. I can sleep better. I function better, overall.

It’s April. Springtime. About time I cleaned up my act.

ON-ward…

When more stuff falls apart

1923 broken down car with wheel off
Sometimes, a wheel just comes off

I’m back.

But you probably didn’t notice, because I’ve been only intermittently blogging here for the past months – maybe a year or so? Life got… interesting. Work has been a drain and a challenge. There are multiple illnesses in my family. And I need to help out.

So, I help out.

I’ve got a disabled sibling with a child who’s in and out of the hospital. I haven’t done a good job, at all, of keeping in touch and offering support. I’ve been trying to do more of that, lately, but it really takes a toll. And now that sibling’s partner is having health issues, as well. So, that’s yet more of a drama scene.

And now my parents are having problems. Serious, possible-surgery problems. I spent the past 4.5 days with them, helping them get sorted out with doctors, getting their paperwork together, talking them through their options, and talking to a friend who is helping a lot. It’s a whirlwind with them. My parents are high-energy, always-on-the-go types, who live a very active lifestyle with lots of friends and activities. It’s exhausting just talking to them, let along living with them for a few days.

But mission accomplished (for now). We got all their paperwork taken care of, got them set up with the medical portal so they can connect with doctors and see their test results, hooked them up with a new smartphone, so they can have a GPS, and also look things up when they need to. And just reassured them that I and my spouse will be there for them when they need us. They’re a 7-hour drive away, so it’s not exactly close by. And my spouse is having a lot of mobility issues, which slows everything down.

I slow things down, too. The fatigue is just crushing, at times, and when I  push myself, I can get cranky and perseverative. I’ll start to grouse and get stuck on a single angry thought and just hammer that proverbial nail, till the board around it splinters. We had a couple of instances where I lost it over what was really nothing much, got turned around and confused, took wrong turns, got combative… mainly because I was bone-tired and worried about my folks.

On the way down, we added 1/2 an hour to our trip, because I got turned around and missed my last exit. My spouse was talking to me about a number of different things that had nothing to do with the drive, and it distracted and annoyed me, at just the time when I was trying to figure out where I needed to turn. I was tired, which makes my brain work worse, and it was dark, which didn’t help. We were also in a part of the country that’s changed a lot in the past years — and we hadn’t been in that area for over two years, so I was even more disoriented. I missed my exit, couldn’t see where to go next, and my spouse was getting really upset at me for not offering anything constructive to the conversation — which had nothing to do with driving.

I appreciate the vote of confidence, that I can do more than one really critical thing at a time, but I wasn’t in any shape to do anything other than drive the car and get to my parents’ place, so as for conversation… yeah, it wasn’t happening.

We ended up having a blow-out fight over it, which often happens whenever we make that trip to see my parents. There’s a magic point around 7.5 hours of driving, when both of us hit our limit, and any discussion we have turns into a lot of yelling.

Fortunately, we did manage to get over it before too long, and we did get to my parents’ place 9 hours after we left the house. At least we were safe, which was the whole point. And we had a good 4.5 days ahead of us to just chill out and focus on my parents.

On the way back, I got turned around again. I was tired from the trip, and I was confused about pretty much everything. I hate when that happens. It’s a little difficult to maintain your dignity, when you’re bumbling around in a fog. I felt like I was swimming through a bowl of thick tapioca pudding with ankle weights on. My brain just was not sharp. I was foggy and fuzzy and my reaction time was really terrible. I’ve been in better shape, but we had to get home, and my spouse was in no shape to drive, either. Plus, they don’t know the area we were in. So, I had to suck it up and get on with driving. Focus – focus – focus. Pay attention. Watch my speed.

And sure enough, 7.5 hours into the drive, things started to devolve. We were trying to figure out where to buy some eggs and milk and bread before going home. We didn’t have anything fresh in the house, so we had to get some groceries. Driving along, I came to a major fork in the freeway and I had to choose between the left branch or the right, so I decided on the right side, then realized a few miles later, it was the wrong choice. My spouse was pretty pissed off, and yelling ensued. Again.

But I remembered what an ass I’d been on the way down, so I pulled over on the shoulder where it was safe, checked my smartphone, found a grocery store that was open till midnight, and used the GPS on my phone to get there. My spouse was pretty anxious and turned around, too, which made them even more combative. And that wasn’t any fun. But when I followed the instructions of the GPS (almost turning the wrong way onto a one-way street, in the process — it was dark, after all), I got to the store by 10:50, which gave me more than an hour to find and buy the 10 items on the list my spouse made for me. I was in and out in 15 minutes, which was good. Heading out again, I took another wrong turn (even with the GPS telling me what to do – ha!), but I turned around and found my way back.

And we were home before midnight… without too much bloodshed, fortunately. I remembered how hard it had been for me when I lost my temper, while we were driving down. It was bad enough that I felt terrible, felt like a fool and an idiot, and my self-confidence was totally shot. But allowing myself to get angry and vent, to let things escalate with me and “defend myself” from my spouse’s “attacks” actually just made things worse. Even though I was totally justified in my response, it made everything harder for me to think, to process, and do the things that would build up my self-confidence, as well.

It’s all a learning experience, of course. So, I can’t be too hard on myself. It’s one thing, to make mistakes and mess up. It’s another thing to give in to the circumstances and let myself blow up… and never learn a thing in the process. I have to just keep my head on straight, study my situation, watch my reactions and behavior, and learn how to manage myself better. What other people do is one thing. But I need to pay attention to myself, to keep myself as functional as possible — based on the lessons I’ve learned from my past experiences.

It was an exhausting trip, and I’ll write more about that later. I’m still digesting the whole experience, and it’s clear I need to make some changes to how I deal with my parents. They need help — and they need the kind of help that only my spouse and I can offer. Everyone around them is pretty depressive, and some of their friends are distancing themselves from them, because they’re afraid of all the implications of a life-threatening condition that needs to be dealt with.

This is very hard for my folks, because they’re so social, and it’s hard for them to be ostracized, just because of illness.

It happens, of course. I could write a book about how that happens. It happened to me after my last TBI, when I couldn’t keep up with the social and work activities I’d done for years prior. People sensed a vulnerability in me, and it made them uncomfortable. They also sensed a change in me that made them uncomfortable. And since I wasn’t always up to the levels I’d been at, before, they drifted away. I talk about that in TBI S.O.S.Self Matters To Others. Who people know us to be, is also a big part of who they understand themselves to be. And when we change, a part of their world goes away. That’s not easy. But it happens. Not only with TBI, but with other injuries and illnesses, as well.

Anyway, I’ve gone on long enough in this post. I’m back from the visit with my parents, settling back into my regular routine, with some changes. I called my folks, first thing this morning to check in, see how they’re doing — and also pick them up a bit. I need to make this a regular routine, because that’s what works for them. Plus, it’s just nice to talk to them.

I also need to take care of myself, because this is even more demand being placed on my system. And it’s not going to get simpler, anytime soon. So, keeping myself in good shape, stepping up and being responsible about my issues… that’s a big part of what I need to do.

As I said, that’s enough talking for now. I’ll have plenty more to discuss, on down the line.

Sometimes the wheels come off. And you just have to figure out how to deal.

Onward.

And now winter has arrived

snow covered buildings
It’s not this bad, but this is how it feels.

It’s snowing again. It snowed a lot, the other day, and now it’s snowing again. I’ve been mainly moving snow with my shovel, this winter, pushing it aside, instead of using my snowblower. I need the exercise. I was turning into a lump. But today (or maybe tomorrow) I’ll use my snowblower instead. Winter’s got the upper hand today.

Whatever I do, I need to be smart about my choices. And that means using the resources I have – to save my back. Earlier today, I got out the snowblower, made sure it starts, filled up the gas can, and prepped myself mentally for a big day of snowblowing tomorrow. I might even do some tonight, before it gets completely pitch black. I need to move snow. And I need to use my noggin about it.

My back, shoulders, arms, and legs are all pretty sore. It’s good for me. I need the heavy exercise. It’s the one thing that actually helps me get rid of excess energy.  If I don’t do heavy exercise on a regular basis, I can become irritable – and that’s no fun for anyone.

So, this winter, I’ve been shoveling. And it’s been great.

This storm, however, seems to have other ideas. So, I’m being smart and not pushing my luck.

And that’s progress for me, because once upon a time, I would push it. I would test my luck and keep pushing myself to go-go-go, even if I was tired, even if I was getting uncoordinated. I would wear myself out and then either be at risk of falling, or I would actually fall.

I almost fell, the other day, when I was clearing my drive. Black ice underneath silky, slippery snow. It was treacherous. I was careful. I didn’t push it. And I’m glad I didn’t.

I really do love winter, I have to say. The cold wakes me up, it makes me feel alive, and the snow is great to move. I love “playing” in the snow, shoveling it and moving it around. It’s just the ticket to get me out of the house and out of my head.

Just. Fantastic.

Today, though, I’m pretty much laying low… recuperating and letting my body rest. I’ll get plenty of exercise tomorrow, I’m sure.