Learning to live again. After TBI

We need better ideas about TBI / concussion recovery

I wrote this  Thursday morning… then I got busy. I’ll post it now.

It’s cold today. It’s a beautiful clear day, and I am off to an early start. I have an appointment with a counselor, who is helping me sort through my day today logistics. I really like this counselor, because they are not focusing on a lot of emotional stuff, rather on what I need to do from day to day to live my life well.

This works for me. TBI can make a person overly emotional in ways that do not make any logical sense. Every little thing can throw you off, for no apparent reason, so taking the usual emotional approaches to therapy is not as effective as a lot of psychotherapists think. In fact, if anything, it can actually be counter-productive in the worst ways ever. Trying to address neurologically-based emotional issues with psychotherapeutic techniques can actually make things harder to understand, emotionally speaking… which is exactly what happened to me, about 10 years ago when I was first actively recovering from my TBI issues.

Not many of my psychotherapists actually knew this, which strikes me as odd, even dangerous. I know it was dangerous for me. And I wish that my neuropsychologist had been more detailed and vocal in their reservations about me seeing a psychotherapist while I was in recovery for traumatic brain injury.

Anyway, that’s neither here nor there, and my life is back on track. And that’s what I want to talk about today.

I’d rather talk about How I got my life back on track.

I have talked a good deal in the past about Sense of Self, and how that impacts your life after brain injury. To me, this is by far the most critical issue in terms of recovering after concussion or brain injury. In fact, I would go so far as to say that it is the main issue in recovery from concussion or TBI. But at the same time, it is one of the least understood and and most underestimated.

Losing your sense of self sets the stage for all manner of behaviors and experiences that impede your recovery. The neuroscience is there, and it states very clearly that added stress impedes learning. And if TBI recovery is anything, it is learning to live again along different lines. If getting your brain back in working order isn’t about learning, I don’t know what it is about.

When the frontal lobe is injured, which is so very common in traumatic brain injury, it causes us to manage our emotions less well, and that can certainly interact with the limbic system. Other individuals, like Ken Collins, stress the importance of managing the limbic system, the part of the brain that is hyper emotional. I totally concur with his assessment. He should know. He’s a long-term survivor, himself.

When we get worked up over things, all of our energy is going into our emotional reactions, rather than figuring out what is really going on, and dealing with what is right in front of us. We can get so caught up in our interpretations of the fleeting meanings of different things, taking things personally, getting insulted and outraged over every little thing, and also being frustrated and embarrassed, that we have no energy left for regular functioning.

And that is a huge problem. Because the brain uses a lot of energy, and that is only for every day regular things, let alone extraordinary and novel situations that demand more of our resources to process.

So cutting down on environmental stress is very important, and that environmental stress also includes our internal reactions to it. Our internal reactions – at least mine – can make everything worse, and if you don’t have a clear sense of yourself,you were not secure in who you are, and you don’t trust yourself… well, that’s a problem.

Not being able to trust yourself, not knowing what to expect, and not having a clear view of where you fit in the world, is incredibly stressful. Self-familiarity, self-trust is so central and fundamental to us, that we don’t even know it’s there, half the time. We just take it for granted, and when it is removed, we can fall into an abyss of severe self doubt and crisis.

To me, the changes that take place in our brain, the abilities that we once had that are different now or maybe completely gone, the different reactions to our situations, and the deficits that we develop are far less less of an issue than the experiences we have as a result. The experience is what turns our situation into a tragedy, a comedy, or just another aspect of life that we need to adjust to.

Think about how much you have changed in the course of your life, even without a brain injury. You are not the same person that you were when you were five years old , 10 years old, 15, 20, or beyond. We change all the time. We change in reaction to the world around us. Our physical and mental abilities shift over time, and it is not catastrophic, but it’s part of a normal and regular development cycle.

But when brain injury shows up, that changes the patterns that we expect in our lives, and it makes it hard for us to know how to live.

Anyone who is alive is going to know what it’s like to be taken by surprise by unforeseen circumstances. Brain injury is no different, although it is on a much larger and more pervasive scale and of a higher order, than – say – a change in the weather, or change and scheduled activities at work or in your social life. Brain injury changes are deeply altering, even if they come from a supposedly “mild” injury. That is an inescapable fact of the injury.

The thing is, this is the sort of change that we can – and should – learn how to navigate. And we do that through adjusting and adapting and getting to know who we are after the injury. People talk about there being a “new normal” after a brain injury and that can be very true. I know it’s been true for me. The thing is, the “new” normal does not have to be dramatically less successful or lower quality than the “old”. If we learn how to adapt, and we learn how to learn our way back to recognizing ourselves, this can all simply be another aspect of her of our lifetime of developments, just as adolescence and early adulthood, and even aging are parts of the normal process.

So, how do you do that? How do you learn your way back yourself? For me, the secret has been all about routine. Predictability. Establishing set ways of living my life on a daily basis, so that I can and do learn to recognize my reactions and my experiences experiences, familiarizing myself with this new person I have become. There are certain things I cannot do the way I used to. I cannot program with the same complexity that I used to. I cannot simply jump in and learn new computer programming languages like I used to. I cannot push myself for hours upon hours upon hours of sitting in front of a computer, without paying the price four days after. I have to more actively manage my temper, I have to more actively manage my energy levels, and I cannot under any circumstances deviate from my eating plan for extended periods of time. Maybe a couple of days of eating more junk… but I cannot go longer than a few days off my diet without really feeling it.

I also cannot spend as many hours doing One Single Thing as I used to. I have to pace myself. But that’s not necessarily a bad thing. In fact, if anything I would say that it’s been long overdue. So, not all of the changes are bad, and not all of the adaptations are worse than my life originally was. It’s just change to me now, just like changing my job, or moving to another location.

In some ways, adapting to a brain injury can be easier than adapting to a new job, a new place of residence, or other life changes. I think that brain injury offers that those other changes don’t, is steadiness. It offers a new kind of predictability, if I watch carefully and study my situations. And it gives me the opportunity to really shape the outcomes with my own choices and my own behaviors.

In terms of other kinds of changes, I have to adapt to other outside shifts, whereas with brain injury it’s very much an internal process. And while the motivations and choices of other people may sometimes mystify me, inside my own head I have plenty of opportunity to get to know myself, learn about how my system works now, and adjust. I don’t always get that same opportunity with other people and outside situations, but I do have that with myself.

In the end, brain injury recovery is not a simple, straightforward thing. It’s complicated, and it’s different for each person. At the same time, it does have certain benefits and advantages that I probably never would have realized, had I not gotten hurt. I’ve had a number of concussions in the course of my life, and each one taught me something different. I’m not saying I’m glad they all happened, but if it has to happen, I might as well get something out of it. And I have.

Ultimately, we all need to make our own choices, and we all need to find out that’s our own paths. It’s not necessarily for me to tell you how to live your life, but I can tell you what works for me. And I can tell you what I have learned to be essentially true about the nature and experience of brain injury and recovery.

The main thing I’ve learned is: brain injury recovery is not 100% impossible, the way people have said for many years. It also isn’t what people seem to think it is. We might not regain every single faculty and ability that our brains used to have, but we can still develop other skills and other abilities that will help us to recover our quality-of-life, and bring genuine happiness — even where we were miserable before. It’s not about making the brain do exactly what it used to do. It’s about recovering your dignity, recovering your independence of thought, and regaining your self-respect. There’s more to that than brain function, and there are more ways to achieve it then by making your brain do exactly what it used to do in exactly the ways it once functioned.

I can’t say this often enough or stress it strongly enough – brain injury recovery is possible. I am doing it. I have done it. It is an ongoing process, and I will probably never stop doing it. But I have made more progress in the last 10 years than my old neuropsychologist had ever seen in 40 years of brain injury rehab work. I’m living proof – walking, talking, working proof – that it is possible to put your life back together and regain your sense of self, even if everything you once had feels like it has been taken away.

Anyone who says differently – that brain injury recovery is impossible – has not been looking in the right places, or hasn’t been talking to the right people.

When more stuff falls apart

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

I’m back.

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

So, I help out.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Onward.

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.

And now winter has arrived

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

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

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

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

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

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

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

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

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

Just. Fantastic.

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

Quiet days… busy days

road leading to mountains I’ve been head-down on my day-to-day life, lately.

And that’s a good sign.

I’ve got a lot of things going on in my life that keep me focused, that wake me up, that make me feel like I’m actually alive again.

It wasn’t always this way. Used to be, I felt like I was constantly in a fog. Not going anywhere, not able to do anything.

Now, it’s pretty much the opposite. And my main challenge is getting enough sleep.

I’m exercising every day, either riding the exercise bike and lifting weights in the morning, or doing heavy lifting sorts of chores around the house. It’s incredibly good for me, and I miss it, when I don’t get my heavy lifting time in.

It’s all part of keeping things going, keeping things sorted out, keeping things stable. Especially myself.

And life is good.

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

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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.

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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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