Emotional/Behavioural Changes after Brain Injury – Part 1

lightning striking the ground under dark clouds
Sometimes the storm seems to come out of nowhere.

From The Toronto Acquired Brain Injury Network.

My comments are in bold like this.

Emotional/Behavioural Changes

Some people are left with changes in emotional reaction or behaviour after a brain injury. These are more difficult to see than physical or cognitive changes. However, they can be the most difficult for the person and their family to deal with.

BB: I had no idea that a TBI would affect me emotionally, or change the way I acted. Like so many people, I figured that a bump on the head was just an external thing. I'd feel pain on my scalp, and maybe I'd feel a little woozy, but it would clear up in a few minutes... or hours. How wrong I was - so many times. Emotional and behavioral issues have been the bane of my existence (and my family's) for years and years, starting back in my childhood when my behavior was erratic, and my emotions were volatile.

Not everybody will experience these problems and their severity will also vary.

BB: The severity can vary from person to person, as well as from situation to situation. With me, I can be fine, one day... be not-so-great (but seem fine), the next... and then completely lose it a few days later. It's often cumulative, but nobody on the outside sees it building up. That happens inside. Where nobody can see. And when it erupts... hooo boy.
fireball explosion
The problem for me, is that when I blow up, it puts people off, and then they think that's how I always am... and then they walk on eggshells about it, all the time.

And I sometimes never get a second chance, because they've made up their minds about me in a negative way.

Agitation

This frequently occurs at a very early stage after the injury. It can be a coping mechanism for the person, who may be disorientated and very confused. It is most often a stage a person passes through, rather than a permanent change. Examples include: restlessness, pacing and pulling at intravenous tubes.

BB: I've been extremely fortunate to never having had intravenous tubes to pull at, but I know the feeling of not being able to sit still, being extremely agitated - especially after a TBI. A number of times, I can recollect getting hit in the head, and then being flooded with agitation and an overpowering need to MOVE! Like when I got hurt during an informal pick-up soccer game in high school, after the hit, when I was lying there, dazed and confused, I suddenly felt like I'd been given super-powers, and I leaped up and started playing like a crazy person. I don't think I played better than I had before I got hit, but I felt like I did. And I was ON FIRE - or so I thought.

In another soccer game, when I got my bell rung, I knew I'd been hurt, but I felt this incredible urge to GET UP AND GO!!! And I started racing around the field -- in the wrong direction, no less. I nearly scored on my own team, which I think was a red flag for everybody on the sidelines. I did get taken out of that game, and I paced the sidelines in confusion and anger, because I NEEDED TO BE IN THERE! But it was wise to pull me from the game. I was not in good shape, at all.

So, while agitation may be a coping mechanism for some, as they say above, I suspect it also has to do with the mechanism of the brain - the release of all those chemicals, and the general confusion that causes. The brain is trying to figure things out - plus, it's firing on ALL cylinders, like there's no tomorrow. In addition to being a behavioral coping mechanism, it's a result of the brain's basic function.

Explosive anger and irritability

If there has been damage to the part of the brain that controls emotional behaviour and the ability to tolerate frustration, emotions can swing to extremes. The stress of coping with even minor crises, such as misplaced shoes or a noisy vacuum cleaner, can be too much and trigger an angry outburst. If these stresses can be identified, it may be possible to reduce them.

BB: Amen to this. The part of the brain that controls emotions is particularly susceptible, as it's out in front and there are so many types of injury that can affect it. Car accidents, where your brain slams up against the inside of the skull... or tackles that snap your head back and forth... falls, etc. Minor events can turn into crises -- just being blindsided by a sudden change or something unexpected happening, can set me off. Little things can turn into huge things, in an instant. One minute, I'm fine, then all of a sudden, it's off to the races with emotional overload and over-reaction.
galloping horse
Prolonged stress will also do a number on me, as will fatigue. The more tired I am, the more irritable I get - a tired brain is an agitated brain. And when I get too agitated, it's not cool.

Sudden outbursts... extreme reactions... it's all part of a day in the life for me, sometimes. Unless I can get enough sleep and take good care of myself. If I can keep on my schedule and be smart about eating and drinking enough water, that helps. So does meditation and just taking time to chill out. 

Lack of awareness and insight

The ability to recognize your own behaviours and change them when needed is a sophisticated skill that can be affected by brain injury. This can affect someone’s ability to: be self-aware; have insight into the effects of personal actions; show sensitivity; or feel empathy. It also means that a person may not fully appreciate or understand the effect that the accident is having on their life, health or family.

BB: I honestly had no idea how my TBI was affecting my household, back in 2005. I'd gotten injured at the end of 2004, and 2005 was the start of the downhill slide. I became incredibly self-centered and obsessed with myself. Small wonder - I had to recover and build myself back up, as my Sense-Of-Self had taken a huge hit. I didn't know who I was or what I was about, anymore, and it was devastating. I didn't recognize myself, and I was so caught up in figuring it out inside my head, that I never realized the extent of the changes on people closest to me (who were outside my head).

It took talking with someone on a regular basis about what was going on with me, to help me see what an ass**** I was being, and to do something about it. Until I started talking to a neuropsych on a regular basis, I had no way to understand myself and objectively examine my behavior, because nobody I talked to actually understood how TBI affects the mind, body, and spirit... so they made all kinds of flawed assumptions about who I was and how I was. It was incredibly unhelpful for me, and it did more harm than good. 

I got lucky. A lot of others don't have that opportunity. And that's a damned shame. It's criminal, really.

I’ll continue this post in Part 2. Watch this space for notifications.

Source: www.headway.org.uk

Source: Emotional/Behavioural Changes | ABI Network

Emotional Problems After Traumatic Brain Injury – Temper outbursts and irritability

aggressionFrom MSKTC

Temper outbursts and irritability

Family members of individuals with TBI often describe the injured person as having a “short fuse,” “flying off the handle” easily, being irritable or having a quick temper. Studies show that up to 71% of people with TBI are frequently irritable. The injured person may yell, use bad language, throw objects, slam fists into things, slam doors, or threaten or hurt family members or others.

What causes this problem?

Temper outbursts after TBI are likely caused by several factors, including:

  • Injury to the parts of the brain that control emotional expression.
  • Frustration and dissatisfaction with the changes in life brought on by the injury, such as loss of one’s job and independence.
  • Feeling isolated, depressed or misunderstood.
  • Difficulty concentrating, remembering, expressing oneself or following conversations, all of which can lead to frustration.
  • Tiring easily
  • Pain

What can be done about temper problems?

  • Reducing stress and decreasing irritating situations can remove some of the triggers for temper outbursts and irritability.
  • People with brain injury can learn some basic anger management skills such as self-calming strategies, relaxation and better communication methods. A psychologist or other mental health professional familiar with TBI can help.
  • Certain medications can be prescribed to help control temper outbursts.

Family members can help by changing the way they react to the temper outbursts:

  • Understand that being irritable and getting angry easily is due to the brain injury. Try not to take it personally.
  • Do not try to argue with the injured person during an outburst. Instead, let him or her cool down for a few minutes first.
  • Do not try to calm the person down by giving in to his or her demands.
  • Set some rules for communication. Let the injured person know that it is not acceptable to yell at, threaten or hurt others. Refuse to talk to the injured person when he or she is yelling or throwing a temper tantrum.
  • After the outburst is over, talk about what might have led to the outburst. Encourage the injured person to discuss the problem in a calm way. Suggest other outlets, such as leaving the room and taking a walk (after letting others know when he/she will return) when the person feels anger coming on.

Read the rest of this article at: Emotional Problems After Traumatic Brain Injury

Emotional Problems After Traumatic Brain Injury

From the Model Systems Knowledge Translation Center (MSKTC) comes this great information – which especially pertains to me, today.

My comments are in Bold like this.

Brain injury and emotions

A brain injury can change the way people feel or express emotions. An individual with TBI can have several types of emotional problems.

BB: Fantastic (sarcasm). There's not just one, but several emotional problems I can have.

Difficulty controlling emotions or “mood swings”

Some people may experience emotions very quickly and intensely but with very little lasting effect. For example, they may get angry easily but get over it quickly. Or they may seem to be “on an emotional roller coaster” in which they are happy one moment, sad the next and then angry. This is called emotional lability.

BB: This just happened to me this morning. I'm still fatigued from my trip, and while I was making my breakfast, my thoughts were interrupted, and I blew up. My spouse really wanted to talk to me, go over what we were going to be doing today, plans for how to organize the house, etc. And that's completely understandable, because I've been away for four days, and they had a lot of time to think. Plus, they missed me. 

I got overloaded and blew up, slammed around in the kitchen, broke down and cried for a few minutes, then regrouped and managed to eat my breakfast in peace, then joined them in the living room to talk about the day and our plans. 

Roller coaster, for sure.

What causes this problem?

  • Mood swings and emotional lability are often caused by damage to the part of the brain that controls emotions and behavior.
BB: Brainline says:  The frontal lobe ... helps govern personality and impulsivity. If damaged, there might be no “braking mechanism” for self-control. A person may find [they] cannot control [their] anger or aggression. 

That's what happened to me this morning. I got irritated, and my irritation picked up speed like a freight train until I was pretty upset... then really furious. And then I got furious at myself. And then I got furious at my spouse for not cutting me a break. And then I felt generally broken and useless, which spiralled into a bit of a freak-out meltdown. A small one, but still a scary one, because I was slamming stuff around, and that makes my spouse feel unsafe in our home.
  • Often there is no specific event that triggers a sudden emotional response. This may be confusing for family members who may think they accidently did something that upset the injured person.
BB: It can be hard to know when I'm going to "go off", because I'll be working hard to keep it together, and I'll seem to be fine, then all of a sudden, I'm blowing up, apparently "over nothing". There is a sequence of events that sets me off and triggers that sudden emotional response, but it's all internal, so nobody can see it building up.
  • In some cases the brain injury can cause sudden episodes of crying or laughing. These emotional expressions or outbursts may not have any relationship to the way the persons feels (in other words, they may cry without feeling sad or laugh without feeling happy). In some cases the emotional expression may not match the situation (such as laughing at a sad story). Usually the person cannot control these expressions of emotion.
BB: I hate the episodes of crying. That's what happens to me most. I don't cry or laugh unless I'm feeling sad or happy, but it can come up very quickly, and it's not always clear to others just how or why I'm reacting the way I am.

Come to think of it, there have been an number of times when I've laughed for no apparent reason -- usually under the worst of circumstances... usually when an authority figure is either nearby or the "target" of my laughter. I've laughed at people telling me how their child was diagnosed with a terrible, life-threatening disease (and my boss was standing nearby and got so pissed off at me that they had to walk away). I've laughed at things bosses have said, seeming to ridicule them. I may have misunderstood their meaning, to begin with, but it could also be due to my brain mis-firing. The really noticeable times when that happened, were within a few weeks of having had mild TBIs from car accidents. I could read and write normally again, but my inexplicably jocular emotional lability was a real problem. For me and everyone arounnd me.

What can be done about it?

  • Fortunately, this situation often improves in the first few months after injury, and people often return to a more normal emotional balance and expression.
BB: I found this to be true. I did start to act and react more normally over time. However, if I don't get enough sleep, I'm back to where I was before -- sometimes worse. Sleep is the key for me. If I don't get enough of it over an extended period of time, I suffer, along with everyone around me. 
  • If you are having problems controlling your emotions, it is important to talk to a physician or psychologist to find out the cause and get help with treatment.
BB: For me, talking to a neuropsych on a regular basis really made all the difference. It was bad enough that it happened, but not understanding why it was happening, and not having a clue about how to help it made things worse. But when I learned that I need to get more sleep and cut myself a break, it really put me on the right path.
  • Counseling for the family can be reassuring and allow them to cope better on a daily basis.
BB: My spouse has a therapist they talk to, and that therapist has dealt with brain-injured people in their own practice, so it's really helpful for my spouse to have access to that information. It's rare, to find a therapist who really understands TBI, and we're both lucky that this person came into our lives. My spouse has become so much more tolerant and understanding of me, as well as appreciative of the progress I've made over the years. And that appreciation has made a lot of things easier for both of us.
  • Several medications may help improve or stabilize mood. You should consult a physician familiar with the emotional problems caused by brain injury.
BB: The problem is, brain injury can affect how you react to medications. It can make you more sensitive, or less, and some of the medications (Benzos) actually make things worse. Some mood stabilizers can make the brain more tired -- and that's a recipe for more emotional outbursts, and the pain and suffering that follows. So, your doctor needs to know about TBI and its effects on how the brain handles meds, before he/she prescribes them to you. And if you're not feeling right or you're having more trouble due to meds, let your doctor know. Be smart. Protect yourself.

What family members and others can do:

  • Remain calm if an emotional outburst occurs, and avoid reacting emotionally yourself.
BB: This is one of the biggest challenges for me. I always prided myself on how even-keeled I am, and how I kept my head on straight during a crisis. Watching myself get all emotional and overwrought over things that I don't believe warrant all that emotion can be very upsetting for me. And I know I'm not alone. We may have injured brains, but we still have our pride.
  • Take the person to a quiet area to help him or her calm down and regain control.
BB: I have to take myself to a quiet area and let myself calm down. I need to remove myself from the situation and get my system leveled out. Then I can rejoin civilized society. But not before. If I go back too soon, I can freak out even more, the next time.
  • Acknowledge feelings and give the person a chance to talk about feelings.
BB: I need to talk about my feelings in terms of "I". As in "I feel upset because I feel like everything is spinning out of control, and my brain can't keep up, and then I feel stupid and helpless."
It does no good to lay blame -- to say "You made me feel bad because ____________" Especially because the other person usually has NO idea what they did to provoke me. The fact is, they may not have provoked me - my brain provoked itself, and I need to talk about how I feel in a way that doesn't blame the other person who already feels defensive and vulnerable to my emotional over-reaction.
  • Provide feedback gently and supportively after the person gains control.
BB: It often helps, if I can come up with a clear explanation of why I freaked out (I'm tired, I'm frustrated, I'm overworked, I'm hungry), and then I come up with clear steps to fixing that. I tell whoever I freaked out at, what I'm going to do, to stop my behavior ASAP. And I make sure they know I'm going to take more steps to fix it over the long term. Sometimes it helps if I tell someone how they can help me in the future. Like my spouse helping me to get to bed at a decent time. And take naps during the day, when I can.
  • Gently redirect attention to a different topic or activity.
BB: I just shift my attention to other things. I do something I've been wanting to do for a while, and that makes me feel better, because I'm using my overabundance of energy for something productive. It always helps, when I channel my energy into other things that have productive uses, like cleaning and organizing. And when I'm done, I have something to show for it. 

I just need to make that shift, which isn't always easy.

Read the rest of this great article at: Emotional Problems After Traumatic Brain Injury

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Emotional Changes after Brain Injury

The Model Systems Knowledge Translation Center has great info on TBI. Here’s one of their great infocomics on emotional changes after TBI (click to download):

Emotional Changes After TBI Infocomic
Emotional Changes After TBI Infocomic

Amygdala hijacking – Don’t let it happen to you.

Extra sleep – the key to my future plans

brain-interests
Roughly – this is how my thinking has been prioritized

I keep sleeping in past 8 a.m. This is new, since I returned from my business trip. This morning, my spouse had to wake me up at 8:15, asking if I was planning to go to work today.

Well, yes, I had planned on it. But if I don’t have to do it, so much the better 😉 No, really, I hoisted myself out of bed, did a shortened version of my morning exercises, and made my breakfast. Now I’ll do a quick post before taking off for the office.

I got 9-3/4 hours of sleep last night. I think that’s a record, of late. The last few nights, I’ve been sleeping from 10:30 till 7:45 — even past 8:00 — which has been putting me at close to 10 hours, for the past three nights.

And I didn’t even realize I was that tired.

I guess it’s all catching up with me — and not only from the business trip last week, but from the past 10+ years of grappling with sleep issues. I’ve been exhausted for so long, I don’t even know what it feels like to be fully rested. And my neuro thinks that it’s one of the root causes of my dizziness and lack of balance. My old neuropsych said that sounded “preposterous”, but if the brain is in charge (at least in part) of your sense of equilibrium as well as coordinating your movements, and your brain is tired, then doesn’t it make sense that a tired brain would lead to an un-balanced body / proprioceptive sense?

That seems common-sense to me. But I’ll let them fight it out on the experts front.

As for me, I’m actually sleeping, and while I do wake up during the night many times, I’m able to get right back to sleep and stay that way… and for 2-3 hours longer than is typical with me. It’s either that, or take a sleeping pill, which has been shown to cause rebound insomnia and is strongly cautioned against for people with brain injury. Now, that apparently happens after extended use, but even so. Why chance it?

Plus, not everyone metabolizes it the same way, so saying it’s benign in every single case — especially mine — is pushing it. And that’s beyond pointless. And a little worrying.

But on the bright side, my own situation is worlds better — at least for now. I may have to start setting a clock to wake me up by 8:30, if I don’t wake up, myself. I’m accustomed to waking up at 5:30, but I can do with out that, for sure.

Aside from the jet-lag and time-shift that came with the business trip, I think another thing that’s really helped me relax and sleep more, is taking some concerns off my plate. I’ve decided I’m not going to go back to school to finish up the B.A. I failed to get, 30 years ago. I was in trouble with the law, I was in trouble with my family, I couldn’t stay steady with anything I was doing, I was with a bad group of people who were very self-destructive, I was out of money, and I was too booze-addled to make good decisions. Finishing my degree just wasn’t possible.

My current employer pays for both graduate and undergrad education, so this would have been the perfect opportunity for me to finish my degree. But let’s be honest — there is no way I can hold down a full-time job, take care of my spouse, and take care of my own health, AND go to school, even part-time. Even doing one course, would be too much for me. Two to three hours of classes a week plus reading, plus studying for tests… with my learning differences, and my crushing fatigue… there is no way that could work.

So, after having this bright hope that I might be able to do it, I let that go a few weeks back. It feels like a surrender of something I’ve wanted with all my heart for so many years, but it just doesn’t make any sense. If I ever find a way to support myself that doesn’t involve being at an office and constantly dealing with people for 8-9 hours a day (and beyond that, considering all the emails and texts that come in at all hours), I’ll consider going back to school. But not if it puts me in debt. And not if it destroys my quality of life.

The wild thing is, ever since I let go of that plan/dream/ambition, I have felt so much more relaxed. Yes, it’s a loss. Yes, it’s disappointing. Yes, I kind of feel like I’ve failed. But this frees up that part of my brain that has been connecting my future success to the way I was always taught I could succeed – through getting degrees and adding qualifications and certifications that come from others.

As it turns out, I realize that I really am on a different path than that. I belong on the frontier. My great-great-grandparents were pioneers who traveled to the West when it opened up, and they paved the way for others to follow them. I’m actually not happy about some of the things they made possible — the Dust Bowl, rounding up Native Americans and putting them on reservations as well as genocide against this country’s first residents. That’s a hard legacy to carry. But at the core, at the center of it all, I am essentially a pioneer, not someone who settles spaces that others have opened up. And I’m the kind of person who thrives in unstructured environments where the rules have yet to be written.

brain-interests-new So, I’m freeing up my “brain space” to make room for my new work direction. I’m making the most of my current job stability to really think about where and how I want to work in the future. I’m not rushing out to find a new job, right now, because I need time to think and really get clear about what I want to do. After years of hard work and sacrifice and doing a lot of jobs that I didn’t want to do because they were good experience, I’m finally at a place where I can literally pick and choose the direction I want to go in. I have the experience that others really, really need, and after years of rehabbing with a neuropsychologist, I once again have the temperament and behavioral control to work effectively with others.

I was this close to being able to do that, back in 2004, when I fell and got hurt. I was 18 months away from cashing in on my shares, that would have let me pay down my house and refinance the remainder at a very attractive rate. I was 18 months away from financial independence, which was no small feat for someone without a college degree, who everyone said would never get far in life because of my failure to complete pretty much anything I started. I could see the light at the end of the tunnel, and it wasn’t an oncoming train. It was my future – the future I had worked so hard for.

Then I fell, and everything fell apart.

I’ve been rigidly locked onto the idea that I had to finish my degree, in order to get anywhere in life. But in fact, that falls back on thinking from when I was a teenager. As an adult, I’ve always been a pioneer, a leader, someone who ventures into spaces that haven’t yet been explored. The things I’ve done, have been things that nobody else thinks are possible.

But I know they’re possible, as do the others I work with.

Now I need to look again to the future and find where I need to be. Not just where I am right now, but where I need to be, on down the line. I want to make the best of everything I’ve got, and take it to the next level.

And so I shall.

Onward!

Holy smokes, it’s amazing what some extra sleep will do for you…

Tracking sleep

fairgroundThe countdown to my business trip is T-minus-4-days. And in the meantime, I’m taking care of my everyday life as best I can.

I’m seeing the neuro nurse practitioner tomorrow, and I’ll be reporting in about my sleep.

Below is a chart of the numbers I’ve collected for every night over the past month. It shows how many hours I’ve slept, as well as how many hours I napped. And it shows how I stack up, relative to my target time of 8.5 hours.

sleep-log-april-2016

I’ve been falling short consistently, apparently. I’ve been thinking I’ve been doing well, but when I see a chart, it’s clear I have a ways to go. A couple of weeks ago, I was really behind on my sleep, due to work stress and a conflict I had with a friend of mine that really got me bent out of shape. I know I shouldn’t let it get to me, but it did.

I am human, after all.

So, this is all stuff to work on. Things to stay mindful of, and not let it all get to me. And to find ways to calm myself down and chill out, rather than getting wound up and bent out of shape. Maybe I’ll put a printout of the chart beside my bed. Yeah – that’s a great idea for a reminder.

I’ve been prepping for my business trip next week, doing some shopping and also some checklists, as well as practicing my talks for the trade show booth. I’m not feeling a huge amount of pressure, though. If I do a good job, then fine. If not, I’m not sweating it. In a way, I don’t really care about the event. I care about the customers I’m going to meet, and I care about the people I work with, but I’m not personally invested in the company. Not anymore. Not since they’re selling out, lining the pockets of the people in charge, while laying off a lot of people.

So, I’m treating it like a free trip to a part of the country I’d never normally go to. Resorts in warm climates are fine, but I hate amusement parks and places where large crowds gather, so yeah, this will likely be the one and only time I ever go to this place.

One good thing is that I’ll get to see a relative I haven’t seen in over 30 years. They’re living in the area, and I’ll get a chance to catch up with them, which will be nice. That will get me off the hook of hanging out with my workmates, who just want to run wild and party while they’re away from their spouses.

I have no interest in joining them. I see them every day, as it is. I’m just going to do my job, and then come home. I wouldn’t even go to the place, if it weren’t for work. I need my sleep (see above). I need to eat right and take care of myself. I can’t get drawn into their version of fun.

So, I’m hoping my relative can provide some welcome respite from their company. It’s a plan, anyway.

In the end, I’m just looking forward to everything being over. Flying there, doing the job, flying home… and getting back to normal again.

But that all feels like a distraction from what my real focus is — getting enough sleep, so I can keep my health in balance… and also not have to use the sleep medication that was prescribed to me. My old neuropsych warned me away from it, because although it supposedly metabolizes quickly, that’s not true for everyone. And I’m so sensitive to meds, as it is, I can’t imagine my body is going to behave like everyone else’s.

The neuro visit this week is really just a way for me to check in — and check out. They don’t seem very interested in addressing the reason I actually went to see them – my balance. So, I’ll handle that myself. And never mind the pills. Or the procedures. They’re not that helpful, anyway.

I think my biggest frustration is that I go to these specialists in good faith, believing that they are willing and able to assist me. And then they just don’t deliver. Or show much interest in delivering. There are a million possible reasons, but figuring it out is not the best use of my time.

I’ve just got to keep the focus on myself, on keeping my own balance in every way possible, and keeping myself fit and capable as best I can. It’s really the only way my life is going to be as great as it can be.

And that’s my intention, really. To just have a great life — and enjoy it to the fullest.

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.

There’s a reason I’m different – and doing better than expected

Piecing it all together
Piecing it all together

Last week was a busy one. From what I’ve been told, this is only just the beginning. As soon as I lose track of what day of the week it is, and I can’t recall when I had a conversation with someone, I’m told that will show that I’m officially one of the gang at the office.

A lot goes on there, each and every day. And what happens is very involved and intricate, a world within itself, so you can easily get lost. I have the advantage that I already know what that’s like. I already know how it is to not know where you are or what day it is or when something important happened — and still stay fully functional. So, I figure I’m ahead of the game.

It’s all experience. Just that. Experience. And I’ll be able to put it to good use, on down the line, I’m sure.

Of course, I’m playing along, pretending to be less adjusted than I am. People are surprised that I’m fitting in as well as I am, already. I don’t want to freak them out by showing them just how acclimated I am.

See, this is one of the benefits of learning to live full-on with TBI. In my case, I got used to lack of precision. I’ve gotten comfortable with gray areas. I’ve figured out how to function through the fog and the exhaustion and the frustrations. I’ve learned how to keep from losing my mind in the face of my own persistent limitations and shortcomings, as well as the pathological unhelpfulness of others.

I’ve had to. I didn’t have a choice, if I wanted to live my life. I’m not in a situation (or a country) where I can actually go on public assistance. And my verbal abilities are so remotely disconnected from what is going on in my head, that even if I could get some help, I doubt I would get the right kind at the right time.

People are surprisingly ignorant… dangerously so. And they never think to try harder, because they don’t know enough to realize they don’t know enough.

Living with TBI is one of the loneliest things you can ever experience. Lonely within. Lonely on the outside. Lonely all around. And for those who don’t do well with solitude, it’s like living in one of the lower rings of hell.

Alone.

Fortunately for me, I am fine with solitude. I prefer it, actually. People exhaust me with their poor choices and their complete unwillingness to question those choices or try harder. When I am alone, I can sort out my thoughts and go about my business without criticism or judgment. I used to get down on myself for not doing things the “right” way. Now I’ve give that all up, because I realized that the harder on myself I was, the more energy I was using up — energy I could have used to try again and get it right the next time.

I also made peace with the fact that I usually screw things up royally the first time… which frees me up to make all kinds of mistakes early on, so I can learn from them and get it right the next time.

When you quit judging yourself,  you win back a ton of energy. And you also get to have a lot of good laughs over the course of your adventurous life. In retrospect, shying away from mistakes robbed me of a lot of interesting lessons. And dropping the self-recrimination has been wonderfully freeing.

The other thing it does for me, is get me out of the fight-flight cycles that I used to use to keep myself going. My brain gets tired and then it gets foggy, and I turn into a smaller version of the Hulk, so keeping my brain sharp has been an imperative for me, lo these many years.

And nothing does it quite so well as adrenaline that comes from The Fight.

The only thing is, the long-term stress of fight-flight running my system is actually really bad for my overall functioning, so in the end it isn’t quite the silver bullet I always thought it was. I was instinctively seeking out and creating situations that would demand more of me than I thought I had… but it was taking a toll. It was really stripping the paint off my peace of mind.

So, I had to stop that. I had to get in the habit of just going to bed when I was tired, and slowing down my system when it was thrown out of whack.

My autonomic nervous system (ANS) — the system that moderates our fight-flight as well as our rest-digest — needed a tune-up. So, I’ve really been concentrating on that for the past number or years. Sometimes I would lose sight of it for months on end and not do anything with my breathing or heart rate. But I would always come back to it — and feel stronger than before.

Which is good. Especially since I continued to learn what to do with that strength.

So, the busy schedule and fatigue aside, I am doing quite well. I have my down days, and I have my up days, and all the while I keep coming back to a place where I am steady and solid. That’s because of my ANS work, actively slowing down my system with intentional action and deliberate choices.

And on top of it, the lack of psychopharmaceuticals has probably been very beneficial. Rather than masking the symptoms of my issues, I’ve been forced to deal with them head-on, so to speak. And the results have amazed the people around me. I’m not the same person as I was, 8 years ago. People notice this. At least, the ones that are still around after all this time, do.

More than handling TBI with psychotherapy and meds, I’ve had a strong focus on my physical fitness. Exercise has done wonders to level things out for me, and eating the right foods has helped, as well. I take a full-system approach to my recovery, and I use my cognitive state as a barometer to see how I’m doing.

Not all days are stellar, to be sure. But they’re a hell of a lot better than they were for most of my life. I’m here now. I’m actually here. And that’s pretty cool.

Speaking of being here, I’m about to be not-here. It’s time for my Sunday morning walk.

Onward.

Late night, and late morning, too

I had to work late, last night – as in, early this morning. We started an installation project around midnight, and we were all on the phone till 2 a.m.

The install didn’t actually work 100%, but my piece of it did, which was a huge credit to my team, because although we were the ones who had tested out our piece of the puzzle the least, we were the ones who actually had the least amount of problems.

We had one little thing we needed to re-do, but other than that, we were good.

Which was really what we needed to prove, anyway.

The rest of the extended team has to sort things out, but we’re good to go, the next time we take a crack at it.

So, I got to bed around 2:30, and I actually managed to sleep till 9:30, which is a rarity with me. It truly is. Typically, I would wake up at 7 a.m. and just be awake — which would have given me all of 4-1/2 hours of sleep. No good. As it was, I got about 7 hours of sleep, which is my minimum for basic functionality.

It’s been an exciting week. I had a phone screen job interview on Thursday, and I think it went okay. It’s a permanent job, not a contract, and there are lots of benefits and paid time off and all that. I’m not sure if the money is there in the paycheck, but it has lots of other perks to go along with it.

I thought the conversation went fine. It didn’t fire me up and get me really excited. It’s a job I’ve done a number of times in the past, so I could do it. I’m just not sure I really want to. After considering getting the hell out of my current job, it occurs to me that I’m actually fine, being where I am. I know I complain and bitch about things, but that’s to be expected — anywhere I am. If it’s not one thing, it’s another.

So, to make a change from the situation I’m in, which is safe and guaranteed and has plenty of money associated with it, and is actually really easy for me to do, might not be the smartest thing. My present situation gives me plenty of flexibility and leeway to come and go as I please — not to mention affords me plenty of time to work on my other projects, like this blog. If I transfer to a permanent, full-time position, then I’m stuck in the corporate world with a corporate job and all the strings attached that come with it.

Nothing’s free — least of all a “good job”. It has a price tag attached.

So, if it works out with the new thing, it works out. But I have a feeling it’s not going to give me what I’m looking for. I’ll go talk to them, if they want to meet, but I’m not putting all my eggs in that basket. And I’m interviewing them, not just being interviewed by them.

I have my pride. And I know my worth. I know the worth of my freedom, and even though I’m not fully vested with any one company right now, my freedom is worth it. Everything has a price, you know?

So, I’m still a little groggy from the late night. I almost fell last night, when I was standing up from the table. That’s not good. I really need to take care of myself this weekend and recuperate. It takes a lot out of me, to work late. More than I’d like. But there it is.

Main thing is, I did get 7 hours of solid sleep. And I have another day and a half to make up the difference.