Righted again

I’ve been home for a little over a week, and I finally got a full night’s sleep, last night. I’ve been working off of 2/3 of my usual “dose” since last Friday, and it doesn’t do me (or my work) any good.

Whenever I travel for work, for every 4 days I spend there, I lose an additional 8 days afterwards just to catch up. And I also lose a few days ahead of that, while I’m preparing and putting all the pieces in place to keep my (and my spouse’s) life going per normal.

Normal! Ha. That’s a good one.

Well, anyway, things are back to normal again. I got up after the sun was up, and I had my exercise and healthy breakfast. Now I’m organizing myself for the weekend, so I can catch up on the chores and activities I couldn’t do last weekend because of the fatigue and also competing activities.

I’m also looking for a new job that doesn’t involve travel. I’ve got a rich and full life, and I don’t need to be hauling my a** all over creation. Not after all these years of working as hard as I have. Surely, there are jobs that don’t require that.

Of course, the ones that do involve travel tend to pay better. But it’s all a tradeoff. And ultimately, if my quality of life takes a dive, is the money actually worth it? Not sure…

Fortunately, there are other options. I’m exploring them. And for the time being, as long as I can get decent rest and keep myself from getting too scattered, I’m in a good place.

I’m righted again. And now it’s time to do some yardwork.

It’s all an adventure.

Onward.

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Working with this headache

head made of mesh with blur and focal pointI’ve been dragged down for the past 5 days with an intermittent headache.

I haven’t been sleeping well, and I’ve been extra stressed at work.

Been drinking too much coffee — not a lot, compared to what I used to drink before, but more than I should.

I’ve also been eating more carbs, which spins me up in to a flurry of quick and easy energy, then crashes me. That up and down roller coaster also makes me get angrier quicker than I’d like. It the crash puts me on edge and eats away at my patience, so I snap at my spouse more. That’s not good.

Gotta get off that roller coaster. Gotta cut out the bread.

I’ve been working out more at the gym, so that’s probably contributed — tension in my neck and back.

Not much more to say about it, other than I have to just use the tools I know I have.  Do the things that work for me. Don’t get spun up over stupid stuff. And just keep going. Just keep steady. And get back to being steady, like I used to.

Onward.

2. Since your old habits don’t quite work well enough, you need to TAKE CONTROL of your brain….

brain withi paint spattered on it and a grungy border

From the Give Back Give Back – TBI Self-Therapy Guide – which you can download by clicking this link, here’s the second point about how to fix your brain. It’s an important one, because it puts you in the driver’s seat of your own recovery. That’s huge.

2. Since your old habits don’t quite work well enough, you need to TAKE CONTROL of your brain and get it to think through the things you are going to do.

  • Your BRAIN no longer does its job well enough on automatic pilot.

You may think it does, but it doesn’t. All those years your brain invested in learning how to do things… well, the things it learned about “the right way to do things” has changed. The connections and pathways that your brain was used to using to get from Point A to Point B… well, those old highways and byways may have been “washed out” by your TBI, so all the signals traveling through your brain need to find new ways to do their job.

  • Now, your MIND has to make sure it does its job properly, whenever you do anything in which the results are important.

You can’t just rely on your brain to be on autopilot. You have to use your MIND. And you have to stay engaged. You have to pay attention. The brain can do its job, but it needs to be watched — cared for — tended. And that’s the job of your mind.

  • Any time you need your actions or your words to have quality, your mind has to make sure that your brain produces quality at every step.

Your mind is in your control. Your brain … well, not so much. Some people make no distinction between brain and mind, but for our purposes here (and for Give Back purposes), we need to make that distinction. The brain is the organ, the result of a whole lot of physical and neurological processes. The mind is the result of the brain’s activity and your presence… of mind.

  • It’s as if your mind now has to be the boss.

Yep. It does. It has to run the show. You can’t rely “mindlessly” on your brain to just do its job as usual. Because the ways that it used to do things have altered. And that change is permanent. Does that mean you can’t create new ways and pathways for your brain to do things differently? NO.  That’s the point — it can change and learn and grow. But it’s used to doing things the same-old-same-old, and that’s not going to work for you anymore.

  • You need to be MINDFUL so that you can be an effective boss.

Give yourself a promotion. Make yourself the CEO of your own life. You’ve got to run things, now. Not just your autopilot brain, but your powerful mind, which learns and grows and changes constantly and acquires skill over time. Mindfulness, paying attention, properly managing your energy and frustrations… you’ve got a new job.

You can do it. You got this. Many, many other people have been through this and have come out on the other side in good shape. Follow this link to read more: Models of Exceptional Adaptation in Recovery After Traumatic Brain Injury: A Case Series

TBI recovery (even for the so-called “mild” type) is an ongoing process which involves your whole self. Take heart. There is a way forward. I found my own way, and you can too.

Onward.

Seems strange that we don’t know more about #concussion

According to the CDC’s web page(s) on TBI and Concussion:

How big is the problem?

  • In 2013,1 about 2.8 million TBI-related emergency department (ED) visits, hospitalizations, and deaths occurred in the United States.
    • TBI contributed to the deaths of nearly 50,000 people.
    • TBI was a diagnosis in more than 282,000 hospitalizations and 2.5 million ED visits.  These consisted of TBI alone or TBI in combination with other injuries.
  • Over the span of six years (2007–2013), while rates of TBI-related ED visits increased by 47%, hospitalization rates decreased by 2.5% and death rates decreased by 5%.
  • In 2012, an estimated 329,290 children (age 19 or younger) were treated in U.S. EDs for sports and recreation-related injuries that included a diagnosis of concussion or TBI.3
    • From 2001 to 2012, the rate of ED visits for sports and recreation-related injuries with a diagnosis of concussion or TBI, alone or in combination with other injuries, more than doubled among children (age 19 or younger).3

What are the leading causes of TBI?

  • In 2013,1 falls were the leading cause of TBI. Falls accounted for 47% of all TBI-related ED visits, hospitalizations, and deaths in the United States. Falls disproportionately affect the youngest and oldest age groups:

    • More than half (54%) of TBI-related ED visits hospitalizations, and deaths among children 0 to 14 years were caused by falls.
    • Nearly 4 in 5 (79%) TBI-related ED visits, hospitalizations, and deaths in adults aged 65 and older were caused by falls.
  • Being struck by or against an object was the second leading cause of TBI, accounting for about 15% of TBI-related ED visits, hospitalizations, and deaths in the United States in 2013.

    • Over 1 in 5 (22%) TBI-related ED visits, hospitalizations, and deaths in children less than 15 years of age were caused by being struck by or against an object.
  • Among all age groups, motor vehicle crashes were the third overall leading cause of TBI-related ED visits, hospitalizations, and deaths (14%). When looking at just TBI-related deaths, motor vehicle crashes were the third leading cause (19%) in 2013.

  • Intentional self-harm was the second leading cause of TBI-related deaths (33%) in 2013.

That, to me, is a pretty big deal. And that’s not even counting the costs of concussion to all the people who sustain them, as well as the friends, family members, co-workers, and employers involved.

While other diseases, injuries, conditions, etc. have “epidemic” status and get a whole lot of attention and visibility drawn to them, concussion / TBI still lurks just under the surface. Maybe because it’s so scary for people. Maybe because it’s so invisible. Maybe because people still have this perception of TBI as being “just a clunk on the head” that’s no big deal.

Guess what — it is a big deal. And it affects your whole person.

So, maybe people really do get that. They just don’t have the ways of thinking/taking about it in a productive way.

Maybe we just aren’t properly equipped.

I’m not sure there’s ever a way to properly equip people to confront their deepest, darkest fears. But the right information goes a long way.

Also, having standards of care, getting the word out on a regular basis about how to understand and handle concussion / TBI, and not treating it like a taboo that can’t be discussed in polite company… that would help, too. Heck, if we could just discuss it, period, that would be a positive development.

Well, that’s what this blog is about. Sharing information, as well as discussing what it’s like from a personal point of view. It’s important. And it doesn’t happen that often, in a productive and pro-active way. At least, not compared to the frequency with which it happens.

It really doesn’t.

Except here, of course.

So, as always, onward…

Getting the right information about #concussion

train tracks rounding a bend and disappearing
Who can say what lies ahead?

It never ceases to amaze me, how little is generally known about concussion / mild TBI. Either it’s dismissed, or it’s viewed with a combination of fear and horror. Just mentioning to someone that you’ve had one (or two, or — like me — 9) can seriously alter their perception of you.

I’ve had conversations with people who I thought would “get it”. But as soon as I mentioned my history of mild TBI, their manner changed from collegial to guarded. As though they were waiting for me to slip up or do something stupid.

Eh, well. Whatever. I can’t get too bent out of shape about it. After all, it’s largely not their fault. We just don’t have a lot of good information about concussion / mild TBI. Nor do we have stellar management practices. It’s either negligent, or it’s over-protective. And unless I’ve been under my rock too long (always a chance of that), I don’t believe there are widely recognized, standardized best practices for docs and patients, alike.

We’re getting there. But we’re not there yet.

That being said, I’m working on updating my series 10 Things I Wish Someone Told Me After My Concussion(s) I collected 10 posts in one place, and I also published it as an eBook, to give people more access to it. But looking at it last night, when I had some time to myself, I see I really need to both expand it, as well as create a more condensed, high-level version of it.

The point of the collection is to let people know they’re not alone – and to share with them things that really would have helped me, had I known about them sooner. When you hit your head hard enough to alter your consciousness, it can impact you heavily. It might not be obvious from the outside right away, and it may take a few hours or days or weeks (sometimes even months) for things to start to get weird, but something actually has changed inside your skull.

We need to know this. Not just from doctors when we think to consult with them. Not just from experts, who have all the domain expertise. But in the general population. That’s why I’m expanding the book into print — because I want to get it out to libraries, as well as to individuals. It’ll be on Amazon, just like the eBook is.

I’ll be updating this site, too, as I go along, adding more information to help clarify. This is important. People need to know. It can’t protect them from that first impact, but it might just help them deal with that — and possibly avoid the next impact that becomes even more likely when you’re already concussed.

Watch this space.

For this news … and more.

10 Things I Wish Someone Told Me After My Concussion(s)

Top 10 Things I Wish They'd Told Me After My Concussion(s)
Top 10 Things I Wish They’d Told Me After My Concussion(s)
Price: $2.99
Have you had a concussion? A mild TBI? If you’ve recently had a head injury, you’re not alone. Millions of Americans have a brain injury every year. Sports, falls, assaults, auto accidents, and more all contribute. To take care of yourself and get better, there’s a lot you need to know.
What can you expect? Why do you feel so weird? Why are you getting so angry? How do you take care of yourself? How long will it take for your symptoms to clear up? Will this fatigue ever end?
This “beginner’s guide to concussion” gives you an insider’s view of what it’s like, what you can expect, what you might experience, and why you feel the way you do. Written by a multiple mild TBI survivor with decades of recovery experience, “10 Things I Wish They’d Told Me After My Concussion(s)” fills in the blanks of this puzzling condition and talks about anger, fatigue, frustration, the neurological basis of your situation, and more. There is always more to learn with concussion. And this book is a place to start.

Understanding Trauma: How Stress and Trauma Cause Chronic Condition Pain, Anxiety, Depression & PTSD:

Oh, this is so much better

speedometer

If I hadn’t messed up my laptop the other day, it would be slower than it is right now. I had a whole bunch of crap programs running “in the background” that I didn’t need at all.

And now my laptop is much faster. Cleaner. Nicer.

So, it’s a good thing that I messed up in a small way. Because that let me fix things in a big way. Plus, I learned a bunch of new tricks for how to make my computer really work much better.

The main hurdle in my way was my anxiety and thinking that I couldn’t figure it out. But I took my time and was patient with myself and I got a good night’s rest before I managed to fix it. When I stopped worrying and just “worked the problem”, things came together for me.

Bad experience for half a day.

Good experiences to come for weeks and months and years.

Sweet – sweet – getting back to normal

I rested when I needed to, I did my best to fit in as well as I could. And I rested.
I rested when I needed to, I did my best to fit in as well as I could. And I rested.

My approach to sleep and work and taking time out during my business trip has really paid off. I got almost 8 hours of sleep last night, and I’m not feeling nearly as jet-lagged as I expected to. I’ve been back for 2 days, now, and although I am still a bit foggy, it’s not nearly as bad as it could have been.

It’s not much worse than I usually feel on a Saturday.

So, that’s completely awesome.

What worked for me was this:

  1. Be completely uncooperative and resistant about anybody pushing me on my bedtime. Don’t take sh*t from anyone who tried to give me a hard time about not staying out till all hours.
  2. Do my best to blend in with my surroundings, so as to minimize flack about not being a “team player”. Go along with the things I could go along with — dinner with the team, group activities, up to a certain point, and of course doing my job reaching out to customers and having good conversations with them while on the expo floor.
  3. Take time away from people whenever I got a chance. Just retreat to my room, keep the lights low, don’t turn on the t.v. by reflex (I only turned it on twice – once to see what channels were available, once to check out), and decompress.

I did a lot of all of the above. And it was a really challenging time. But I came out of it in one piece, which is fantastic. And I’m not a miserable git, to live with, as I have been in the past.

Now I’m back to exercising in the mornings — I couldn’t get myself to the pool or gym on my trip, because I was pretty maxed out, cognitively and sensory-wise, so the idea of venturing into a swimming pool area or a gym with other people in it, was just too much for me. So, I didn’t bother.

It feels good to be back on the exercise bike, as well as lifting my dumbbells again. It’s also good to be back in a quiet house, where I can move at my own pace, and I don’t have people constantly texting me about meeting them here, there, or some other place. I get to stand at my desk and think, type, think some more, type some more. Check Facebook. Think about things. Just get my act together and regroup.

And go out for a hike later. It’s a little cold and rainy today, but that means there won’t be that many people on the trails, which is good. I’m in no mood to interact today. Just want to be a recluse and regroup after my trip.

So, I shall. I’ve got all day today — and tomorrow — to catch up. And for once, I don’t need to completely collapse and melt down, after that gauntlet run. I ran a good race, and now I can rest.

Another day in someone else’s paradise

image

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.