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

Saved from conference call hell… at the very last minute

red vintage phone with rotary dialI just got a notification that my conference call in 15 minutes is cancelled. Glory Be! I really hate conference calls. Especially at 8:00 on a Friday morning. It’s hard for me to hear, sometimes, and I hate having to pay such close attention at the end of the week. I’m wiped out, just running on fumes… and trying to be functional on a phone, this early in the morning is a real task.

But now I don’t have to do it, because the person I’m supposed to talk to has a conflict and can’t find another time till Monday.

Fine with me. Now I can relax and just settle into my work for the day. I have a couple other unavoidable conference calls later today I need to prepare for, and I also have some critical stuff I need to get done by the end of the day today.

I’m so glad it’s Friday. I’ve had a very long week, and I need a break big-time. Last weekend was chock-full of socializing and interacting, and I didn’t have a chance to catch up with myself — or my sleep. I’ve been struggling to keep up with my sleep, getting less than I need. I’ve really been feeling it, so I need to catch up this weekend. Cancel my plans. Just settle in to doing the basics. And give myself some breathing room.

It’s a simple plan with a simple mission. And it works for me.

… onward …

Extra sleep – the key to my future plans

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Then I fell, and everything fell apart.

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

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

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

And so I shall.

Onward!

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

The loneliness of the long-distance TBI survivor

lonelyTonight is a lonely, lonely night for me. I felt it, driving home. I think it’s the change of clocks, the loss of that hour of sunlight, the way my life does not shift along with the time, but I have to adjust myself and my life to fit into that change.

It’s hard.

It feels like everything is dying around me. In truth, the natural world is simply going through its cycles. If I went to Brazil, it would be turning to spring, right now. Maybe, when I am much older, I will migrate south of the Equator, when fall starts to arrive. No more autumns… no more of that. And then I will come back north, when it starts to turn to autumn there.

It’s an idea.

Work is very strange, these days. People are getting attitudes about the merger. It is to be expected. They are also having territorial wars. That is to be expected, as well. My position may be shifted to another group. I was expecting that, to be honest, but I really like my current group, so I’m in no hurry.

I stay later than everyone, because I get in the office later than everyone. Plus, I love the work I do, so it is like play for me. Everything works faster at the office, which is why I am there. I’m happy.

But today I felt lonely. Isolated. Irritated. Like I was falling behind.

I left the office an hour earlier than usual. But driving home, the traffic was terrible. That’s why I leave an hour later than most people. I miss the traffic. It’s better that way.

And while driving home, I was overcome by this intense sense of isolation. Like the whole of life was passing me by, and I didn’t have any meaningful connections with anyone I really felt like I could get along with. Even my neuropsych, whom I have been seeing for 5 or 6 years, doesn’t seem like someone I’d get along with outside of the sessions we have. I just talk to them for an hour, once a week. That’s it. One hour out of 24… one day out of 7. That’s not very much at all.

Plus, that hour with them doesn’t seem to make much of a difference, when it comes to the difficult things in my life. In terms of discussing my work, it’s great. They are very helpful with professional subjects. They support me in ways that nobody else I know can, or does. But when it comes to my personal experience of everything just sucking so terribly, the depression, the upsets, the disconnects, the meltdowns, the confusion, the malaise, the sensory issues… they are really no help at all. They’re worse than no help. They actually hold me back from understanding what’s going on inside. They minimize my experience, dismiss my concerns, and tell me I’m just taking the wrong attitude. I’m fine. My faculties are fine. I’m exaggerating. Again.

If I gave it a lot of thought, I’d blow up. But usually when I meet with them, I am so wiped out from a long day’s work, I haven’t got the energy to fight. So, I leave it alone.

I talk about work. And everything gets better.

Tonight on my way home, I took a detour around the traffic jam through a town where a former friend and I used to meet for breakfast. We had an on-again-off-again friendship, and they did not treat me very well, a lot of the time.But we had some things in common, so I overlooked it.

Until I couldn’t anymore. They were just so obnoxious, sometimes, telling me how much smarter and better educated they were, than I was/am. I wrote them an email saying I couldn’t have anything to do with them unless they treated me better. They answered. But I did not have the courage to read their reply. Years passed before we had contact again. Then we were back in touch for a few months. They had a brain injury from surgery that they went through, and maybe that’s why they treated me badly. I could look past that.

Then they disappeared.

I don’t know what happened to them. I think I will email them now, to see if they are still around.

Done.

Anyway, I think I’m just very tired from this week. That always puts me in a funk. And I have been working very hard, so of course my brain is tired. And when my brain is tired, nothing seems very good.

At all.

So, I’m feeling lonely. Isolated. I have no energy to go out and get connected with live people. This is why TBI is so isolating. We barely have energy for ourselves, let alone socializing. Maybe a solution would be to have all the people with TBI live in a community where we could just hang out… and when we’re tired, we just get up and go back to bed.

Wouldn’t that be amazing. To just go back to bed whenever I’m tired. Impossibly amazing.

But I’m not holding my breath.

People at work tell me to go home. Don’t stay so late. I have done contract work for so long, I’m used to putting in my hours, no matter what. Pushing through. Getting my hours in. Topping off the clock. But nobody else seems to care about that.

So, I left early tonight.

And I got stuck in traffic.

And I felt terrible, all the while.

Maybe I’m a workaholic. That would not surprise me. My work, though, is the one thing that makes my life meaningful and pleasant. It’s a pleasure for me to work. Why would I not? I have no kids. No energy for that. Work fills a need that most people fill with socializing or drinking or drugs. Or their families.

Me? I have my work.

Tomorrow I paint some more.

And then it’s Sunday. And I am OFF. I think. I have some things I need to get done, in order for that to be true. No, I’m not off on Sunday. I have chores to do. Yardwork.

So, I guess I’ll do my virtual vacation thing — where I just decide to let the world go pound sand, and I don’t care about anything or anyone. On purpose. I’m not being mean. I’m just going on a mental vacation.

Because it is lonely. And I feel alone.

And I need a break. From people. From everyone. From it all.

And suddenly, it is fall

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

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

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

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

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

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

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

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

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

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

In what ways?

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

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

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

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

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

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

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

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

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

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

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

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

What to do?

Be patient.

Pay attention.

Be the best person you can.

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

And remember: This is not the end.


concussion-now-whatDid you know there’s a Kindle eBook version of this post? It’s expanded, along with the other posts in this “Top 10” segment.

You can get it on Amazon here$1.99, instant download