Another day in someone else’s paradise

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The sun’s coming up in the distance. Gradually. The sky is getting pink, and small clouds are hovering over the horizon. Street lights glow orange, and the tail lights of cars blink on and off on the streets below. My room is on the “boring” side of the hotel on this trip, which is good. The “exciting” side is bright and loud and exhausting. This room is my refuge.

I had a great time with my relatives, last night. I have not seen one of them in 30 years, and I had never met their spouse. You can really tell we’re related. Our mannerisms and sense of humor are very similar, and we talk about the same kinds of things. It was also good to connect with real people who are not working at the convention. Real people. Who talk to you because they want to.

I managed to escape the drunken forays of my workmates last night. I went to dinner with my family, and they went their own way – dinner and drinking till all hours. I cannot do it. I cannot tolerate alcohol, and being sleep-deprived is a hazard for me. My whole system starts to degrade when I am overly tired, and I make bad decisions that get me in trouble. I say things I should not say. I get combative. I get off-balance and am in more risk of falling. I make stupid choices and make myself even more tired, which compounds my difficulties. I cannot afford to get in that kind of trouble – especially in a work situation. I have a spouse and a home to provide for, and I also need to keep myself safe.

That is something that people with no health challenges can understand. They can just run around and do whatever they like without repercussions. A playground like this is paradise for them, and they can let their hair down and run wild, staving off their fears of dying and getting old.

My life, unfortunately, is all about repercussions. But I cannot tell anyone, because if people find out that I have “issues”, they can be very unkind. And they can start avoiding me. That’s why I never tell anyone about my brain injuries. They just don’t get it, and this is difficult enough, without adding constant isolation to the mix.

Brain injury can be deeply isolating. People do not want to confront human limitations – especially when it comes to neuro stuff. They just don’t. So, I spare them the discomfort of disclosure, and we can all just live our lives. But that’s the double-bind. If I don’t tell people I need special consideration and assistance, I can never get it. But if I do tell them, I can lose my job. And don’t tell me it’s illegal to discriminate. Employers, bosses, whoever… will find other ways to exclude you, if you’re “not a good fit”.

I like having a job. I like having an income. I like not being homeless and living on the edge. And silence is the price-tag on that.

Muddling through. Battling back the demons. Dancing carefully on the razor’s edge. And never letting on, just what is happening with me.

All the lights and noise and busy-ness that energize others… they exhaust me. I’m on constant guard against the onslaught. All the excitement, the long hours, the rich food and drinking… they fry my system, and I can barely keep it together… then collapse at the end of it all. I get so depleted, that I am pretty worthless for weeks after. It’s the price I pay for keeping up with “normal” people, and it has been this way my entire brain-injured life.

So, I suck it up. Keep going. Just focus on this being over in a few days. Three days and counting. And I really only need to work part of that time. I just want it to be over. But in the meantime, I enjoy what I can. Focus on the positives. Take time to myself. Recharge as best I can. And sleep whenever possible.

Focus on the good, so I don’t overwhelm myself with negativity. Just stay the course and be grateful for what good I can find.

Quiet day, quiet night

zen-stonesToday was pretty low-key. I got up early, helped my spouse get on their way to a business commitment… went for a hike in the woods… took a little nap… had some lunch… did some chores… and now I’ve been doing some organization on some old projects.

Tonight I’ll work on my taxes some more. I got a start on them a little while back, but I’ve been too busy and too tired to focus on them.

So, I’ll do that tonight. Just take it easy. And get in bed early.

After I’m done downloading bank info, I may watch a movie I saw with my spouse, last week. It was a great movie, but I couldn’t watch it in one sitting because I got home late, and I had to get to bed at a decent hour. It’s over 2 hours long, which is longer than I’ve had to spare, each evening this week.

Tonight I have the whole evening to myself, so I can watch it, start to finish. I’m looking forward to that.

That’s all for now.

And that’s more than enough.

The magic of voice-to-text

My hands are pretty tired. Time to give 'em a break.
My hands are pretty tired. Time to give ’em a break.

My hands have been giving me a lot of trouble, lately. I’ve been writing a lot – typing a lot – on the computer most of my waking hours. And it’s taking a toll.

The only problem is, I have a lot of writing I want to do. I’ve got a handful of projects that are just itching to get done – my Chronic Blogging project being the most pressing, right now. Maybe I’m just being spoiled, or maybe I’m finally getting to a place in my life — and my writing — where I’m really hitting my stride.

The latter, I think. I’ve been struggling with keeping things together for so very long, that just carving out time to write has been rough. And I’ve been foggy and fuzzy for so long, that it’s been a challenge to get the words together in decent order.

Blogging counts… but not exactly. It’s much more stream-of-consciousness, and it doesn’t require me to create a huge amount of structure around my thoughts. I can just get up, do my morning workout, get my breakfast, and then spend an hour writing about whatever comes to mind. It’s not the sort of activity that I have to plan out, structure, and then keep steady with.

Writing extended pieces takes a lot out of me. I tend to get distracted and lose my train of thought / resolve before I’ve completed the extended thought. That’s why I favor blogging – it’s “low-impact” for me, and it lets me mentally ramble more than I can in a structured work. I can also break down individual ideas into bite-sized chunks that are easier for me to digest.

But every now and then, I get a hankerin’ to write something more involved than my daily blog posts — something that demands real commitment, and which will have to do with more than the passing moments of my life.

Which brings me to my Chronic Blogging book-in-progress, and all the stuff that goes along with it. I have to figure out a way to elaborate on some really key points, without blowing out my hands and wrists.

Thus, the speech-to-text functionality of my devices.

I’ve got an iPhone for work, and an Android tablet of my own. The iPhone seems to do a much faster job of transcribing, although the Android tablet seems to be more accurate.

Speed vs. accuracy — the eternal quandary!

Anyway, I’ve been testing both of them out, and this weekend I’ll do some more work on my Chronic Blogging project, dictating rather than typing. I dictated about 1/3 of the book yesterday p.m., and it’ll be good to just plug it all in and edit it, rather than tap-tap-tapping away at the keyboard.

I need to break things up, anyway, and this will be a great way to do it.

So, as usual… onward.

Up early… and making the best of it

fatigueSo, I had a long day, yesterday, and I got home late. Which means I ate late. Which means I went to bed late… and then I couldn’t sleep. I was pretty emotional and uptight, and I couldn’t shut my mind off.

I finally got to sleep.

And then I woke up around 3:30 a.m. So, I’ve had about 4 hours of sleep, or thereabouts.

Not my favorite thing.

I know I’ll be fine today. Just dragging a bit, and uncoordinated. And that means I need to be extra careful on stairs, and while driving. And I need to get in bed early tonight.

But for now, I’m making the most of my time and doing something productive with myself. Working on my “chronic blogging” writing. I’ll be posting something shortly.

If I’m going to feel like crap, I might as well do something productive. I’ve already had my morning exercise and now I’m working on my breakfast. And I’ll get an early start on the day… and make an early night of it, tonight.

Work is actually going really well, right now. I’m making huge progress, which I can document (and have been). And I have three more days of an open schedule ahead of me.

The contact from my old job who contact me, hasn’t gotten back to me. I’m not holding my breath. I have plenty of other options out there to work with, and I know what I’m going to do.

So long as I’m not laid off, I’ll keep steady where I am, unless something really promising comes along. If it does, I’ll consider it. But I’m not making myself crazy over it.

And if I do get laid off in this merger, then I’ll contract for a few months in a role that I know I can do with my eyes closed, while I look for a permanent position that gives me everything I’m looking for.

So, let’s just take that off my plate, why don’t we? Just keep on keeping on. Keep my resume updated, keep my LinkedIn profile tidy. And document the progress I’ve made at my current job. Just in case.

Now, on to the “chronic blogging” guide.

After #concussion: Your brain needs to clear out the gunk. What can you do about it?

Sleep is goodAfter your brain gets injured by a concussion/TBI, you need to slow down and rest. Sleep, clean drinking water, and nutritious food have all been shown to help.

Sleep, especially, has been shown to help. Recent research has shown that sleep actually removes toxins and debris from the brain. While we are asleep, the brain is literally washing itself. That’s especially important here. Sleep is exactly what you want to do, if you can.

Drink plenty of water. The brain is about 80% water, and it needs to stay hydrated. Not having enough water in your system can give you a headache. That’s the last thing you need – so drink plenty of clean, fresh water.

Exercise has also been shown to help, although it can make your symptoms worse. Getting your system moving and increasing blood flow throughout your body can be beneficial. But it can also make you feel terrible, so listen to your doctor and follow his/her orders.

Every brain injury is different, but the process of injury and recovery after concussion is similar. Remember the graph above that shows energy levels vs. energy availability? You’ve got to give your brain a chance to catch up with itself. So, rest. It’s important

Take a break from all the screens, and avoid mental activity. Watching T.V., reading, playing video games, checking Facebook and Twitter, surfing the web, emailing… all those things activate your brain. You need to step away from them for a while, so your brain can catch up with itself.

Trust me, it’s no fun to sit still – especially after concussion.

Your brain is telling itself (and your body) to Go-Go-Go.

But remember, it’s been injured, and it has no idea what you’re supposed to do. That’s just the neurochemistry talking.

One other thing you can do is eat nutritious food. The energy crisis in your brain means it needs more fuel to keep going. Stay away from junk food. Too much processed sugar and “cheap” carbohydrates puts you on a roller-coaster, which can make you feel worse than ever. Eat fresh fruits and vegetables, and eat regular meals with balanced nutrition. That will give your body more of a chance to get your brain working again.

  • Eat right – avoid junk food
  • Sleep well – and stay off all the devices
  • Drink plenty of water

a little downtime this weekend

haven’t been feeling great

fighting off a cold – watching what I eat and getting some exercise

recovering from the past couple of weeks — and also gearing up fro the week to come

lots going on, before Christmas and the quiet week before the New Year

thinking about my resolutions from last year – can’t remember what they were, and I’m not sure I care

this is a new year – time to just move on

and in the meantime, rest

while I can

And suddenly, it is fall

Autumn coming... time to bring back the reservoir
Autumn coming… time to bring back the reservoir

I have been so preoccupied this week with the work changes and catching up with old friends whom I haven’t seen in over a year, that I have not directed much energy towards noticing this season.

I’ve been tired — with that kind of cognitive and physical fatigue that is particular to brain injuries. My head has been looking for ways to make sense of it all… past, present, future… and that’s been taking up a lot of my time and attention.

It’s a double-whammy. On the one hand, opportunities like I’ve had in the past weeks are rare — having three days of solitude to clean out my garage and basement… having friends from overseas come to visit… being part of the beginnings of a corporate merger… These are over and above the usual speed bumps and wrinkles that populate my days and weeks. These are different, and they demand a special kind of attention — the sort of attention I actually try to avoid: drama, excitement, speculation, intense work for 12-14 hours straight, without much of a break.

Rapid-floating-in-FinlandBut because of their nature, I have to  just go with it. Get into it. Be a part of it. Allow myself to be swept along in the current – like a proverbial kayaker who gets dumped from their craft in the rapids — as you get washed along in the current, keep your head above water, keep looking forward, and keep your ass up and out of the way of rocks.

The main thing is to keep your head up. Don’t drown. Keep looking forward.

One thing you learn from TBI, is that when it comes to activities, you have to pick and choose. I suppose it’s true of anyone who expends a lot of energy in their activities… or who is very effective in what they do. You mustn’t squander your energy on things that don’t matter. But especially with TBI, you have to be extra careful.There is literally only so much you can do, and if you try to do it all, you end up wiping out your reserve of extra energy — and then you have to spend even more time building back those reserves.

Because lack of energy and fatigue just make everything worse. It siphons off your cognitive abilities, it depletes your stores of happiness and joy, and everything can feel like a slog.

Even the good stuff, the fun stuff, the stuff you know you should be grateful for and happy about.

For me, that’s probably the most depleting thing — knowing that I should be happy about things, knowing I should be pleased and excited and uplifted… but just not having the energy for it. Even energy spent on good things, is energy spent. And building it back is not a simple matter of sleeping in on the weekends. For every two days of extra energy I burn through, it takes two weeks to build it back. And if I don’t have two uninterrupted weeks (like this past month) and exciting things keep happening to me, well, then everything gets that much harder.

In what ways?

  1. distractionI get more distractable. I lose my focus and find it next to impossible to concentrate on the tasks in front of me. I get caught up in all sorts of side activities — which seem so important at the time, but are not actually relevant to what I’m supposed to be working on.
  2. I get more irritable. I can’t deal. I get cranky and snappy like an arthritic terrier. I get anxious and difficult to live with — with others, and with myself.
  3. I get less attentive. My attention gets fuzzy, and I stop noticing details – like the leaves turning outside, or just how beautiful everything has suddenly become. Everything around me seems wrapped in hazy gauze, and my senses are not sharp. My sense are so busy just trying to attend to the basics, that the extra special things in life slip by me very easily.
  4. Joy sorta kinda evaporates from my life. I know (intellectually) that I have a lot to be grateful for, and I know there is so much that I have to be glad about, but I just can’t find the joy. It’s nowhere to be found. And any attempt at reasoning with me to get me to find that joy… well, that just makes me feel stupid and ungrateful. My neuropsych tries to do this all the time, and the net result is that I feel stupid and short-sighted… rather than realizing that I’m simply tired, and letting it go at that.
  5. It gets hard to sleep. The more tired I am, the harder it is to relax and sleep. When I should be getting to bed early, I end up getting on Facebook for 90 minutes — and completely blowing past my normal bedtime. And you guessed right — fatigue becomes a self-fulfilling prophecy where I get more and more tired and wired, as the days wear on. All of the above continue to escalate. It’s awful, and it’s very difficult to stop it.
  6. I end up in a downward spiral. Unless I can get a bunch of good nights of sleep, I’m toast. Things get worse and worse, until I finally just  Give Up. And it turns out, giving up is the best thing for me. Some nights, I go to sleep hoping I never wake up again — I am feeling that depleted and used-up. But the very act of completely abandoning hope actually makes it possible for me to rest. And in the morning, everything looks quite different than the night before. Usually, anyway. Some mornings, I’m still not convinced I want to keep going.

So, fatigue is a thing. It’s a very real thing. And if I don’t stay alert to it, and recognize when it’s getting to me, it can get the better of me, which is never good.

For today, I know I’m tired. I have a full day of things to do, but I can pace myself and take my time… really soak up this fine fall day, and enjoy what I come across, as best I can. Seasons change. It would be a shame to completely miss this one, because I’m distracted.

Annnnnddd… we’re back

Stay alert...
Stay alert…

I got home from my week of vacation at 1:00 this morning. I brought in a few essentials, took a long, hot shower, then crashed. The drive home was trippy – I was tired, my spouse was in the mood to dish the dirt on their business partners, and we kept hitting banks of low-lying fog that clouded the windshield all of a sudden.

The weather is getting so that parts of a landscape will be hot from the day, while along rivers and lakes, the temperature will be much lower, so you can be driving along with everything clear, then all of a sudden your windshield fogs up and you can’t tell if it’s from the outside or the inside. My spouse worked with the temperature controls and how far the window needed to be open to offset the temperature changes, while I kept my eyes on the road and sipped my cup of black coffee.

We made it home in pretty good time, and I got to sleep in my own bed. Heaven.

The place we stayed this past week had narrow beds, unusable pillows, thin curtains, and a noisy exhaust fan in the bathroom. None of this contributed to be getting good sleep, but I made do. I spent a lot of time staying up much too late — the stars were phenomenal — and getting up too early, because my body is used to a certain schedule.

So, I spent a lot of time feeling crappy, like I do now, but focusing my attention on the good around me, which helped. It would be nice to have a vacation where I can really, truly relax and feel good, but my spouse’s medical and neurological issues kept me on my toes.

Such is the life of a single caregiver with a “ward” who isn’t fully aware of just how disabled they are. That’s part of the neurology of stroke – and brain injury in general – not really being aware of just how impaired you are, or how you’re not functioning as well as you could be. Since their strokes, almost 8 years ago, they have gone steadily downhill, getting slower and slower, adjusting their expectations ever downward, with what they think they can do, and how they think they should do it. They’re practically disabled, by now — unable to walk for extended distances, but not willing to use a wheelchair, because it makes them look disabled.

I’ve got news for them — hobbling along and having to stop every 10 yards makes you look very disabled. But they don’t see it that way. They see it as working their way along as best they can. And they’re happy to be able to do anything… versus being motivated to do more, because their current state is not satisfactory.

Well, I can’t make myself crazy over it. People have different levels of tolerance, and different skills for things. Some things that I put up with, my spouse would never tolerate. Like being alone so much of the time. Or not running my own business. Those things are non-negotiable for them, and having that type of connection with the world is something they could never go without.

I, on the other hand, am happier by myself.

Anyway, it was a good vacation, and now I have two days to recuperate and take care of my sunburn. I fell asleep in the car when the sun was shining through the driver-side window, and now I’ve got a bright red shoulder and arm and neck on my left side.

So it goes.

Good to be back.

 

 

 

 

Up early, time to breathe.

This isn’t exactly what I’ve got at work… but my own space isn’t bad at all

I woke up early today and have had some time to catch up with myself. I gave a friend some feedback on their resume (which someone had prepared for them — and very badly, too). I hope it helps – they are not in a good position at work, and they haven’t been challenged for quite some time. They need to make a move, but they can’t do it with a resume like the one they got from the “consultant” they hired.

Augh! Frustrating!

Anyway, I’ve had an hour and a half to just take care of some things, which feels good. I had hoped to start Monday out on a steady note, but my plans got hijacked. Yesterday turned into a whirlwind tour. I had no meetings till 9:30, but I had to run some errands before work, and I barely made it to my meeting on time. And my cube move got all mixed up. I was supposed to have everything in place by 8:30 yesterday, but the facilities folks didn’t even have me on their schedule – until they checked again, which I asked them to do. It took till early afternoon, and then I had to retrieve some extra cables from my old space, because the person who just moved out, took theirs with them.

By the end of the day, everything was settled, and that’s fine.

So yes. I got my new cubicle at work – it has a window, and it’s in a quiet spot. I feel like I hit the jackpot. Now I can set up my workspace as a little sanctuary at the office. In the past, I have not valued my workspace enough, and I just used it as a “holding pen” for my stuff.

Now I see things quite differently, because it is, after all, where I spend most of my waking hours. And I’m starting out on the right foot, putting a lot of thought into the space and how I want it to be. How I want it to feel.

I’ve got some plants I had at my other job(s), and I’m going to get more. It needs some life and light. I’m also going to get some pictures I used to have up. I’ve already got a cool laptop wallpaper of a place I’ve traveled to before, so that’s good. I need a side chair. Maybe I can order one.

I know it’s not forever, and I may be moving at some point on down the line, but for now, I want the space to really be somewhere I want to be, each day.

The great thing is, I’ve had time to think about it, today. I didn’t go to the chiropractor yesterday after work. I just went for a swim. It’s so much better. When I see the chiro – or acupuncturist or massage therapist or even my neuropsych – I feel a bit off-balance for a day or two afterwards. It’s helpful at times, but other times I just need to take a break from all the WORK.

I’m going to back off on my appointments each week. I think I need to discontinue with the chiro, because it’s so time-consuming and the benefit doesn’t offset the cost the way it used to.

It’s just so nice to… relax…

 

#10 Thing I wish they’d told me after my concussion(s)

10. Plenty of other people have had mild traumatic brain injuries (concussions), and most of them are getting on with their lives.

It's not the end. It may feel like it, but it's not
It’s not the end. It may feel like it, but it’s not

Brain injury / concussion is extremely common – millions of people in the US experience once each year, and many more experience them globally.

Getting clunked on the head is something as old as the hills. If it were catastrophic every single time, the human race would not have survived. So take courage – you’re in good company.

While brain injury recovery can be time-consuming and there are no hard-and-fast guarantees, rest assured that many people have bounced back after concussion and gone on to live productive, satisfying, fulfilling lives. Those who haven’t had such an easy time are in the minority. And while I am a member of that minority, I can tell you that even the long, hard road has had many blessings along the way.

You may notice some changes in your personality and abilities, but some of the changes may be for the better. I know that in my case, overcoming all the difficulties of symptoms and blocks that were put in my way trained me to persevere and be diligent – and also to pay attention to important signals that I was screwing up again and needed to make a course correction.

Nobody wants to injure their brain. But when it happens, there’s a lot of useful lessons to be learned. And those who learn and adapt, are the ones with the highest success rate.

You can be one of the successes. No doubt about it!

What to do?

Be patient.

Pay attention.

Be the best person you can.

Put forth your best effort and learn from all your mistakes.

And remember: This is not the end.