Keeping safe, keeping sound, keeping rested

stick figures in different positions of falling over, standing upOne of the major long-term issues I have, thanks to all those mTBIs, is that I tend to get tired… but I don’t realize it, until I’m so tired I can’t rest enough to catch up. When I’m tired, my thinking is off — as in off. I get more impulsive, and I also get angry quickly. It kicks off a self-fulfilling prophecy of lots of activity, followed by increasing fatigue, followed by lots of activity (to pump myself up with adrenaline), leading to increasing fatigue…

And before I know it, I’m so tired, I can’t rest.

I’m tired. I’m wired. And I’m unbelievably impulsive. As in – reserve a new domain name and launch a new online business impulsive. As in – push myself to make poor choices that pump me full of adrenaline that make me feel like myself again, even though I’m putting myself in danger. These choices can range from driving while exhausted, to starting a  new thing before I finish something else, picking a fight with someone over something stupid, or staying up even later to watch a movie I’ve seen a hundred times before.

Of course, the whole “new thing” crashes before long, because I run out of steam, I implode, or I rapidly lose track of what I’m doing. And after I get a nap or a couple of good nights’ sleep, I realize what I’ve been doing – and I know for sure, it’s never going to work.

That happened to me, last weekend. I had a lot going on. Too much, as it turns out. And I was tired. I was tweaked about things going on at work, and I was feeling the burn of the long winter and a lack of sunlight. So, I pushed myself. And pushed myself. And I ended up frittering away a lot of time over the weekend on things that I didn’t need to be doing — that I shouldn’t have been doing. And I tired myself out, even more.

I didn’t exercise as much as I should have. Because I was tired.

I didn’t finish the things I’d started earlier in the week. Because I was tired.

And I ended up eating a lot of junk food to keep my energy up… and also due to an impending migraine. I get ravenous when a migraine is brewing. And I ate a bunch of stuff that put on some pounds, made me feel worse, and screwed up my energy… so I was more inclined to eat more junk food, stay up later, and basically waste my week.

I don’t have weeks to waste. Only in the past several years, have I even felt like a real human being, thanks to my TBI rehab. I’ve lived for decades in the shadows, not feeling even remotely real. I’ve struggled to keep up, year after year after year, and I’ve never had the kind of connection with my work that I have now. I can’t afford to waste any time in my life, because I only have this one. And I’ve been wanting to do so much, for so long, only to be blocked and thwarted at every turn… I can’t waste any time, now.

So, all that being said, it’s incredibly critical that I keep myself in line and properly manage my energy, my eating, my exercise.  And always keep in mind the fact that, just a few years ago, I wasn’t able to maintain this level of activity, let alone have a realistic expectation that I’d be able to live up to my plans and dreams. It was all just “throwing stuff at the wall to see what sticks”.

Now, though, things are very different. Indeed, they are. And I have to keep that in mind, when I’m tempted to fritter away time on things that have no ultimate purpose.

It’s good to take a break, every now and then, but it’s important to stay on track and follow through. I can finally – finally – do that.

And I don’t want to take it for granted.

Onward.

Emotional Problems After Traumatic Brain Injury – Peer and other support

Meeting Of Support Group
After brain injury, you need support

Peer and other support

Remember, too, that not all help comes from professionals! You may benefit from:

  • A brain injury support group — some are specialized for the person with TBI, others are for family members, and others are open to everyone affected by brain injury.
BB: Not everyone has access to this. But if you're reading this, you have access to the Internet, and there are support groups online, like the forum Traumatic Brain Injury and Post Concussion Syndrome
  • Peer mentoring, in which a person who has coped with brain injury for a long time gives support and suggestions to someone who is struggling with similar problems.
BB: Again, it can be difficult to find someone who can help you. But if you reach out online, you may find someone. Also, you never know who's had a TBI. We're everywhere.
  • Check with your local Brain Injury Association chapter to find out more about these resources. Go to http://www.biausa.org/ to find brain injury resources near you.
BB: I got some great info from my local BIA chapter. I attended some support group meetings. But I wasn't "impaired enough" for some people there, so I quit going. I guess I've gotten too good at hiding my difficulties.
  • Talk to a friend, family member, member of the clergy or someone else who is a good listener.
BB: They definitely need to be a good listener - and able to deal with you. Family and friends may not be able to help, because they may be too invested in you being like you always were before. It's a tricky line to walk, but it's important to reach out for help.

Read more at: Emotional Problems After Traumatic Brain Injury

Save

Save

Emotional/Behavioural Changes after Brain Injury – Part 2

head with brain opening and question marks coming out

Continued from Part 1

From The Toronto Acquired Brain Injury Network.

My comments are in bold like this.

Emotional/Behavioural Changes

Impulsivity and disinhibition

A person may lose their ability to control their actions or their speech. This problem often goes hand in hand with lack of awareness, and the person may not be aware of breaking any social rules or etiquette. There are strategies that can help to improve the situation, and prevent a person from developing unacceptable behaviours through habit.

BB: The first thing that we need to know, as we recover, is that we're breaking social rules. We may not be aware. And while the people around us may not be comfortable "calling us out" on our behavior, it's important to do it. And it's important to persevere in convincing us that our behavior is just not good. Because we may literally not know. We may also resist accepting that fact. But brain injury and "bad manners" often go together - and if you  never realize you're behaving badly in the first place, it's impossible to fix it.

Emotional Lability

This describes a person’s tendency to laugh and cry very easily and to move from one emotional state to another very quickly. Loss of control over emotions means the person may express their feelings inappropriately or at the wrong time. This can be very tiring and embarrassing for family members to deal with, but in time a person can begin to re-learn emotional control.

BB: I am not a fan of emotional lability. Nor is anyone around me. It can be embarrassing and stressful, and it can make things worse. The best thing to do, for me, is find some humor in it. Over time, this can sort itself out and become more manageable. In the meantime, you just have to make the best of it -- and remember to not over-react to every emotional storm that comes along.

Self-centredness

Someone may become self-centred. For example, the person may not show any interest in family matters and only be concerned with their own needs. Brain injury can affect a person’s ability to judge how someone else is feeling. The person may also become used to the huge amount of attention they receive while in hospital.

BB: Recovering from brain injury requires you to become self-centered, in my opinion. You have to pay attention to yourself in new ways. You have to get familiar with yourself again. But it's easy to get too caught up in yourself, and that can distance others. Ultimately, the thing that's saved me, time and again, is getting past myself. Learning now to be less self-centered. It helps me with depression, it helps relieve my sense of being disconnected from others. Putting others first... that's been a big benefit for me.

Apathy and poor motivation

Lack of motivation, or apathy, is a direct result of injury to the part of the brain that controls emotion, motivation and forward planning. Over time, lack of motivation can lead to social isolation and lack of pleasure. For example, a person may show no interest in hobbies enjoyed previously, or they may not get out of a chair all day. To help, activities can be broken down into small steps to avoid overwhelming the person.

BB: This is a big one for me. Most of the time, I just don't care about much of anything at all. Seriously, I don't. And so many things I've started... well, they've just fallen apart and went nowhere, which made me feel like a total loser who wasted everyone's time. My motivation generally sucks. I wish it didn't, but then again... a lot of times, I just don't care, one way or the other.

But yet, I need to keep moving. I need to stay productive. I need to keep myself from falling into "disrepair" and ending up feeling worse than I already do. Life has always been painful for me. It hasn't been a long exercise in glee and joyfulness. It's been awkward and uncomfortable, and I've been in multiple kinds of pain for as long as I can remember. 

But something in me needs to keep moving. I find motivation where I can get it - generally not from the things that other people get motivation from. Just staying alive. Feeling like I'm doing something productive with myself. And constantly coming around again to take another shot at what I want to do.

Motivation is a tough one for me. I guess I've just developed habits around getting stuff done, and they work for me when I have no motivation to do anything, at all.

One thing that keeps me motivated, is doing things for others. Serving others. Being available to others to help, so they can have the best life possible. That motivates me, I guess. It's probably my biggest one. The rest of the things -- money, success, fame -- nah, I'd rather do something useful that benefits others, to be honest.

Depression

Depression is a very common emotional reaction experienced in the later stages of rehabilitation—often when a person realizes the full extent of the problems caused by the accident. This can be seen as a good sign: the person is aware of the reality of the situation and is coming to terms with the emotional consequences. “Healthy” depression can be worked through in time, as adjustments are made. If a person feels emotionally blocked and unable to move on, professional counseling from someone who understands head injury may be helpful.

BB: I never gave much thought to this before, probably because I've always been depressed, and it's nothing new for me. When I was in high school (I had a handful of mild TBIs in the course of three years), I went through a period that was utterly, completely black. Literally. I couldn't see anything, at some points. Everything was dark for a little bit, and my vision wasn't working.  Fortunately, it seemed to happen when I was sitting down. But the emotional darkness was the worst. I just felt like I didn't even exist, and I didn't care, one way or the other. 

I'm not sure that it had anything to do with realizing how messed up I was. I didn't realize those blows to the head had any effect on me at all. I just felt awful. Whether it was the mTBIs or just being a teenager, is anybody's guess.

Someone asked me once, if I had a history of depression. I said, "Of course," and they seemed sad. I didn't mean to make them sad -- just tell the truth.

Anxiety

It is natural for people who have had a traumatic experience to feel anxious afterwards. Individuals may experience a loss of confidence when they are faced with situations and tasks that are difficult to cope with. However, problems can occur if difficult situations are continually avoided, or if those caring for them encourage dependence rather than independence. Talking about fears and worries is very helpful. Learning ways to stay calm under stress can also reduce the effect of anxiety on everyday life.

BB: I know this one all too well. And what most people don't realize, is that anxiety isn't just about the injury itself. If anything, the injury is just a small part of the total anxiety-generating stuff. Insecurity and instability builds throughout the course of your recovery (because some recovery is invariably happening, even if it doesn't seem like it), as you walk into different situations that you feel should be OK, but then you screw things up -- many times without even realizing it -- and it happens over and over again. Everyone around you is afraid to say anything, because you might A) blow up, B) cry, C) fight them on it, D) feel terrible. Everybody's walking on eggshells, so you never get the information you need to recover sufficiently, or adjust your behavior and adapt to situations.

So, people just basically leave you to your own devices, which is a terrible idea, because it leaves you alone with the very thing that's causing you problems -- your brain. And the anxiety builds over and over and over, because you can't get the help you need to adjust and recover -- and regain your dignity.

Small wonder, that we start to avoid situations. Sometimes it's just easier to not even bother, than get dragged across the hot coals of embarrassment all over again.

Inflexibility and obsessionality

Examples of this behaviour include: unreasonable stubbornness; an obsessive pattern of behaviour such as washing or checking things; or fear of possessions being stolen. The person can lose the ability to jump from one idea to another, and becomes “stuck” on one particular thought. This type of behaviour is often made worse by anxiety or insecurity, so it is helpful to reassure the person and and redirect their attention to more constructive ideas and behaviour.

BB: You never know if the stubbornness is unreasonable or not. There may be a very good reason for it - but nobody's asking the right questions, so you end up looking "unreasonable" to people who might be able to help you, if they just took a different route or opened their minds.

Getting stuck on an idea or a frustration is a big problem for me, to this day. If I'm tired, I can get "stuck in a loop" where I'll keep arguing about the same point, over and over and over again, making everyone around me absolutely nuts with frustration. And they don't know how to get me out of it. 

It's impossible to argue with me at those points. Best thing to do, like they said, is redirect my attention in another more productive direction.

Save

Save

Save

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

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

Save

Save

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.

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.

Knowing when to get out

Gotta know when to make a run for it

I can’t believe it’s Sunday, already. Seems like it was just last Tuesday.

I’ve been pretty tired, over the past week – lots going on. Plus, I’m working out in the mornings again, so that’s making me more tired, on top of everything else that’s going on.

So, I need to factor that in, whenever I go about my business and interact with others. I need to track where and when I’m doing not-so-well, and take steps to correct my situation, when I see/feel myself going awry.

Like this morning. I got to bed late, last night, because I lost track of time in the evening and I had to run out and buy supper late. So, we ate late. And we watched a movie that kept me up till midnight. And true to form, I woke up at 6 a.m. — so, I’m operating on 6 hours of sleep.

Not great. I’m feeling sick, and when I got started this morning, I made the mistake of getting into an extended discussion with my spouse about things that need to be done. I only wanted to make a cup of coffee before I went out on my morning walk. But within minutes, we were both sparring, and the conversation rapidly spiraled downhill, with my spouse perseverating, accusing me of perseverating, followed with angry accusations from them, and finally petulant tears.

I didn’t help matters any, by finding fault. And in the end, I managed to get out for my morning walk and work off the aggravation.

Lesson learned. When I am over-tired and not feeling well, I need to just excuse myself and get out of an angry conversation as soon as humanly possible.

It’s the only way. My spouse has their own neurological issues, which they cannot seem to see, and when we are both tired — like at 6:00 a.m.– and I’m trying to get out of the house for my walk, while they are trying to get me to spend some time with them, it’s a volatile situation that’s just no good.

The crescendo develops in a few predictable ways.

First, I am tired, and when I am tired, I am more irritable.

I’m more likely to get tweaked over every little thing. Something as minor as the sun peeking up over the hill behind my house can set me off… let alone getting sidetracked from my activities by my needy spouse. Plus, when I’m tired, it’s hard for me to think and I am less coordinated, so that irritates me all the more.

Second, to wake myself up, I often use anger.

I discovered this little “trick” about 20 years ago, when I had to get up at 4:00 each morning to drive my spouse to work. I would drop them off and then head over to my job… and as I was driving, I’d start to nod off. I discovered that if I made myself angry about things, it woke me up. And it did it quite effectively. So, I have been doing that for many years, and while it’s effective, it’s also a bad habit I need to break.

Third, my spouse loves to wrangle when they are tired, too.

So, the two of us can rapidly escalate to the same-old-same-old nagging and grousing we’ve been doing for years. When I was 10 years younger, it didn’t bother me as much. But now, it’s just a pain in my ass. And a total waste of time.

And I know better.

So, I need to do better. I got myself out of the house without indulging in more drama. I didn’t go back and try to smooth things over, when the tears of frustration started to flow. I just walked away, because I’ve been pulled into that many, many times. It’s just my spouse’s way of trying to pull me back in, and it never ends up well — for me, anyway. They’ll be fine. They’re just worked up, and they need some time away from me. Just like all the other times, we’ll reconverge later in the day, and things will be fine. I’m not getting into it, just getting on with the day.

I’ll take a quick nap around noon to recharge — and another one later in the afternoon. That will keep me going.

And I’m not going to engage. Because I don’t feel well, I’m fatigued, I’m behind on my sleep, and I still have a lot to do before the next week starts.

Lessons learned — yet again.

ONward.

 

Crushing. Just crushing. And yet…

The week ahead of me is one of those one-foot-in-front-of-the-other types of weeks. I can’t think too much about things, because inside my head, it’s a swirling mass of panic, rage, fear, anxiety, frustration, and a whole lot of other stuff that has no business coming to the surface.

I’m working my ass off, keeping positive and moving forward. It is a herculean effort, and when I think about how f*cking hard I have to work, to keep myself on track, I’m actually really proud of myself.

Because how things are on the outside is nothing like how they are on the inside.

And to all appearances, I’m succeeding, I’m doing well, I’m holding my act together.

While inside, I’m absolutely dying — or bordering on aggressive rage.

One thing that TBI has taught me, is how to not get sucked into the turmoil that seethes beneath the surface. There is *always* turmoil beneath the surface with me. I walk around looking quite calm and collected, while inside I’m anything but that. I know the chaos is there. It’s like having a Tasmanian devil creature living in a sound-proofed back room of my house. From the street, you can’t see it, you can’t hear it, and you’d never know it’s there. But inside my house, I know it’s there. And even though I can’t hear it tearing around shrieking and howling and slamming into the walls, I can still feel the thud-thud-thud of the creature throwing itself around.

It’s there. I’m not sure it’s every going to go away. And yet, I don’t have to let it out of its room. I don’t have to let it into the rest of the house. I can live my life, sliding food under the door now and then to keep it satiated and a little calmed down. I can go about my business, taking care of that side of me, to make sure it doesn’t get too wild, too out of control. I know it’s there. I’m not sure it’s ever going to go away. The confusion, frustration, fear, anxiety, panic, anger…

Whatever. I have a life to live, and I have tools in place to keep me balanced and steady, no matter what.

In a way, learning to manage my own internal state is helping me manage my external state. It’s pretty depressing, sometimes, thinking that this crap may never go away. But when does it ever — for anyone? We all have to deal with it. We all have to handle it.

It’s crushing. It’s demanding. It sometimes feels like too much.

Then I realize there’s more to the picture. There’s the amazingly beautiful weather today. There’s the wonderful day I spent with my spouse, yesterday. There’s the camaraderie of my coworkers waiting for me. There’s the calm I feel as I settle in for a good night’s sleep on the weekend, when I don’t need to set my alarm. There’s all the amazing beauty and inspiration I find from so much of life.

Yes, it can be crushing. And yet… there is more.