Learning to do it anyway

Sometimes it feels like the weight of the world…

Woke up this morning feeling sick – headache, sick on my stomach, foggy… Going back to work tomorrow probably isn’t helping any, but life goes on. There it is.

I’m pretty much in the Emotions/Moods “section” of those 84 ways TBI can make your life really interesting

Emotions/Moods

8. Agitated, can’t settle down – I’m all wound up and can’t seem to get myself to chill to get to bed at a decent hour each night. I’m way agitated, and fidgety and am having trouble focusing in to get shit done.
9. Angerrrrrr!!! – I’m pissed off. At work. At my spouse. At myself. I’m just angry. It’s driving me — it’s driving me crazy.
10. Anxiety – Feeling vague fear, worry, anticipation of doom – Yeah, when I go back to work tomorrow, I have the feeling that I’m going to be so totally screwed by my workload and the “lost week+” that I’ve had away. Not that it’s any different than it’s been for the past year or so, but now the sense of doom is really coming in.
11. Depression, feeling down – My mood has actually been pretty good… but I have to really fight back the depression. It sets in quickly if I don’t stay on it.
12. Excitability! – I get all worked up over stuff, then I come back to it later and I can’t see what all the excitement was about. The worst thing about the excitability is that it distracts me and takes me off-course, so it takes me longer to get where I’m going.
13. Everything feels like an effort – Yeah, pretty much. It feels like everything is a massive effort, and I can’t figure out where to start.
14. Feeling unsure of yourself – Yeah, pretty much all the time, these days. I know better (rationally) and I fight it back, but that feeling is always there… like I never know what’s going to come out of my mouth or what I’m going to do next. Sometimes I get it right, sometimes I don’t, but I’m never 100% sure what’s going to happen.
15. Feelings of dread – Yeah, that. Dread and anxiety. Like I just can’t deal with sh*t.
16. Feeling like you’re observing yourself from afar – This is a weird one, because it’s really like that. It’s like I’m standing at a distance and watching myself do and say things that don’t make any sense to me.
17. Feelings of well-being – On and off. It’s not all bad, all the time. Sometimes I have these sudden rushes of feeling really good, really solid, really sound. It’s a nice break.
18. Feeling guilty – Guilty over what I’ve done and what I haven’t done… what I should have done, what I forgot to do.
19. Feeling hostile towards others – Yeah, this is a tough one. I’m not feeling that great today, and we have a friend staying over, and I have to watch myself to not come across as hostile and aggressive, because they’re pretty sensitive and have a hard time making and keeping friends, as it is. My hostility has nothing to do with them, but they could easily become a target, if I don’t manage this.
20. Impatience – Yeah – what’s taking everything so long?
21. Irritability – Like the hostility, I’ve gotta keep a handle on this. Others shouldn’t have to pay for my issues. It has nothing to do with them.
22. No desire to talk or  move – This one set in when I woke up, and it’s still there. The antidote? Get the hell up and do something. Anything. Just move, goddammit.
23. Feeling lonely – Yeah. That. The consolation I get is that I’m not alone in feeling lonely. Plenty of people do. I also need to focus on the fact of what I’ve got in common with others, and that helps.
24. Nervousness – Nervous about work, nervous about money, nervous about life. Nervous.
25. Feelings of panic – On and off. This is much less extreme than it was several years ago. I’ve learned how to relax. I’ve learned how to recognize the signs that I’m just panicking, and it has nothing to do with actual reality. Breathing helps.
26. Rapid mood swings – Yeah, gotta watch that. I’m sick and tired today, so I know I’m more susceptible.
27. Restlessness – I want to run, I want to walk, I want to jump in the car and drive away. I want to go out and pick a fight. Not my best ideas… and I know it’s just the fatigue, the fogginess, the feeling of being “off” that’s doing this. Adrenaline and novelty blocks out all the distracting what-not-ness that’s swirling in my head. Surely, doing something extreme will take my mind off it. Well, sure – but at what cost?
28. Tearfulness, crying spells – Not so far, which is good. A few days ago, when I was feeling really sick, I had this. Thankfully it passed. Of all the TBI issues that come up, the tearfulness is the worst for me.
29. Feeling tense – Yeah. That. Like I’m wound so tight, I’m either going to snap, or I’m going to shoot straight to the moon. Tense. Really Tense. Black Flag Tense.
30. Feeling vague longing/yearning – Absolutely – for something I want and need, but can’t quite put my finger on. I used to have an antidote for this: daily meditation and breathing. Then I got sick of it and stopped doing it, because I just wanted to get on with my days with out having a lot of ritual and sh*t to do, first thing in the morning.

And as a result of these things, I’m also grappling with the follwing:

Day-to-Day Activities
31. Being overly busy (more than usual) – I’ve got all this stuff I want to do, and it’s piling up. I’m making myself crazy with it.
32. Feeling like you can’t get moving, you’re stuck – And under this pile of stuff, there I am, pinned down and feeling like I can’t move.
33. Feeling like you can’t get anything done – It’s just a feeling, I know, but that’s how I feel right now — nothing is moving, I can’t get anything accomplished.

Geeze. Enough of this. Yeah, things aren’t great right now, but once I get moving, I’m sure they’ll loosen up. That’s the thing that I’ve had to learn, over and over again. I can’t start from where I want to be (feeling great and having a lot of stuff done). I need to start from where I am — even if it’s sick and tired and foggy and aggressive and a bit ragged around the edges.

Gotta get out of my head and find something to really focus on. Just gotta. I’ve got to get my mind off this headache, this nausea, this fogginess, and all the above-mentioned crap. I’ve got to just get moving and do what needs to be done today. I do have things I need to take care of, and I just need to do them. I’ve had two days to recover and recoup, and that’s been good. Now I need to kick it again and get a move on. No matter how I feel, just do what needs to be done, and then enjoy having done it.

Yeah, it’s turning out to be a beautiful day, so I can get some work done in the yard and hang out with this friend. I will need to watch myself today, to make sure I’m not all edgy around them, so I don’t chase them off the way I have chased off many other people. I just need to keep cool, keep focused on what needs to get done, and do it.

And then sleep this afternoon. Get some rest. And get ready to go back to everyday normal life. Things will take care of themselves, if I’m just honest with myself and keep an eye on myself. This is not rocket science, it’s just life. Everybody has to contend with this, TBI or no. So deal with it, I shall.

After all, it is a beautiful day.

Pay no attention to that drastic mood swing

Probably one of the most annoying things about TBI is the power and speed with which moods can change. You’re going along, doing your thing, and all seems well. But all of a sudden, you’re flipping out – for no reason that anyone can tell.

Our TBI Flies have something to say about this. Meet Jenny, a perfectly normal, nice gal who has a bit of a mood swing problem.

Green seems to think it’s cool that Jenny’s happy again – “so long as she’s happy” right?

Not necessarily. It’s important to understand why folks get bent out of shape with TBI. Depending on the person — and this is not true for all TBI folks — anger can become rage and rage can escalate to violence with the kind of speed that will make your head spin.

Green Fly above seems to think it’s all a convenient excuse for bad behavior. Green obviously doesn’t know a whole lot about TBI-related anger.

You see, anger comes with TBI for a number of reasons, the big one being that pesky constant restlessness that takes over your brain, as though all our synapses were on high alert, looking for a new way to make the connections it was used to making before the injury. That constant restlessness can lead to fatigue — our brain is something like 2% of our body’s weight, but it consumes 20% of our body’s energy. And when we get fatigued, TBI folks can get irritable.

When you get irritable, if you interpret that as that there’s something wrong with you — you’re defective or flawed or a bad person — it can mess with your mind and make you do and say things you would normally not do. It can make you mean. It can make you cold. It can make you aggressive. That sick, sinking feeling that you’re behind and you’re just not going to be able to catch up… that sick, sinking feeling that you’re damaged beyond repair and you’ll never be the person you once were… that sick, sinking feeling that you and everyone around you is completely screwed and you will never be able to dig yourself out of the hole you’re in… that can make people do some pretty desperate things — including lash out at the people around them, doing and saying whatever the hell comes to mind, regardless of any consequences.

When you think you’re damaged beyond repair, you think you don’t have a lot to lose, so you can sometimes do and say things that will cause you to lose the things that mean most to you — love, respect, dignity, grace under pressure — and each episode of high drama chips away at the inner reserves you have, till you end up walking around like a shell of the person you once were.

The people around you may not realize it, however. They may not see any reason to think you’re any different than you were before, and so they react to your outbursts with understandable irritation and puzzlement. And when they don’t factor in what’s going on inside of you, it can be easy to consider them stupid in their own right(s) and treat them like the blind idiots you know they are. They’re so blind, they can’t see what’s going on with you, and they earn your contempt, through and through, by simply treating you like you’re capable of dealing with things like you did before you got hurt.

It’s a vicious cycle that I believe contributes to the downward spiral that can often accompany TBI. Even mild traumatic brain injury can result in this dynamic — sometimes it’s even more likely, than if there was a severe injury, because people outside your head literally cannot tell that there’s anything amiss with you. And they may vehemently deny that you are any different than you were before, or that you’re any different than everyone else around you.

This kind of dynamic is all too common. But it’s somewhat preventable. Keeping chilled out and rested and learning to handle your anger is an important step in this. Also, realizing that everything you feel isn’t necessarily true. And sometimes the things you feel most strongly are the ones that are farthest off the mark. In my case, the more extreme the mood swing, the less likely it is to have merit. The most intense, drastic fluctuations in my moods are clearly neurologically fed, not psychologically justifiable. And the better I am at dealing with the flares of emotion that come out of nowhere — accepting them for what they are, but not feeding them any energy — even ignoring them, if at all possible — the better off I am.

Of course, when I’m tired and stressed, the chances of me being able to do that drop pretty sharply.

So, it’s important to pay attention up front to what’s going on, so you don’t create the kinds of conditions that lead to rage:

• Fatigue
• Frustration
• Telling yourself stories about yourself that convince you you’re damaged and inept and worthless
• Telling yourself stories about yourself that convince you that they are idiotic wastes of space who don’t deserve courtesy or respect
• Continuous stress that you feed, in order to keep the steady supply of stress hormones pumping so you feel “sharp”
• Etc.

Keeping an eye on things can go a long way towards helping. Of course, you can always laugh at yourself, too. Not ridiculing or belittling, but understanding that this too shall pass, and there’s no point in getting completely BENT over stupid shit that is gone almost as quickly as it appeared.

Getting better… getting worse – life resumes years after tbi

It's all about the balance

Had a great trip down to see family, this past weekend. Truth to tell, I was a bit apprehensive about it all – there was a LOT of driving involved, and multiple family units, some of whom I have not seen in decades (not all of them friendly, the last time we spoke)… all on top of a seemingly unsustainable lack of sleep. Between the driving and visiting and events, there was simply no way I could have gotten 8 hours each night.

And sure enough, I didn’t.

But it all turned out alright, in part because I was prepared for it. I knew I was going to be tired. I knew I was going to be “behind” on my sleep. And I monitored my behavior pretty closely for the duration, to make sure I didn’t get ahead of myself and start down a road that would mess up my whole trip.

Only twice did I get out of hand – once when my siblings kids were disobeying their parents and doing something that was potentially dangerous, and my siblings were not pro-active at all and didn’t get them in line for their own safety. I spoke up sharply, and I think I scared the kids. But it kept them out of danger. And my siblings got a little miffed that I said anything to the kids. That kind of threw me a little bit, because in years past we’ve had a lot of confrontations where I acted out and was pretty aggressive with people around me, and they all remember that — all too well.

So there was the old “vibe” about “BB is up to their old tricks again – they just can’t be trusted in polite company – just a bad seed” that I had to work so hard to overcome in my mind over the years. It threw me for a couple of hours that morning, but then I went to lie down for a nap, had a little rest, and then I got up feeling a little better. But when I joined everyone else, I was still out of sorts, and I had an argument with my spouse that got very tense. They were also on edge, because my family can be very demanding and judgmental and pretty rough on everyone, and my spouse has never been comfortable with that level of harshness in family settings. They think that family should unconditionally support one another, while my family thinks that it’s the family’s duty to find fault with and correct each others’ “flaws”.

So, we had a bit of a squabble that day. We weren’t the only ones, though. My siblings were all having trouble with their spouses, and at various points, they were all split off in different rooms, having “talks” to sort things out.

But at least we did.

So, things actually went okay, for the duration of the trip. And I had some good conversations with family members.

One thing I noticed, however, is that my “flashpoint” is higher than it used to be, but it’s more powerful. The things that used to always set me off with my family didn’t affect me as much as they used to, but when they did hit, my reaction to them was much stronger than in the past. In the past, the discomfort and issues would simmer in the background and be like this sub-text of my experience. Now, however, they just bubble right up to the top and explode. Not as extremely as they used to, when I was a kid, but still…

Just ask my spouse. It’s a wonder I didn’t threaten divorce in the course of our conversation. I thought about it. Seriously. And I was prepared to go through with it. But when I gave myself some time to simmer down and chill out, I saw how ridiculous I was being. I wish I could say I had a good laugh about it, but it bothered me. I knew I was being stupid and ridiculous, but it wasn’t amusing to me. It was bothersome.

So, in the after-hours since getting home late-late-late last night, I’m looking back at the weekend, choosing how I will think about it. I could choose to focus on those two stages of a near-meltdown and think the whole time was ruined by them. Or I could focus on all the really great times I had with people I haven’t seen in years, who genuinely care about me and were very loving and engaging, despite my troubled past.

I feel in a lot of ways, as though my life with my extended family has “resumed”. For many years, I kept my distance from them because I had so many troubles communicating with them, and I felt like I was always getting turned around — and that really upset me. People in my family “knew I had problems” but they didn’t understand why that was, and they often didn’t treat me well. So, I kept my distance. Or when I was with them, I didn’t come out of my shell very well.

I was literally a captive of my perceptions of myself. I felt like I was too “problematic” for them, and they probably picked up on that and treated me accordingly. I sort of have this reputation in my family as being a bit of a loser — plenty of potential, but somehow lacking the moral fortitude to do anything with it. That reputation has dragged me down so very much, and in the past, I didn’t have much hope of interacting well with them, so I never gave myself a chance to just be who I was with them.

That has changed dramatically, however, in the past several years. Working with my neuropsych, they’ve just about convinced me that I’m not profoundly, mortally flawed and an intermittent danger to myself and others. I’ve been learning to give myself a chance around people, engaging with them, striking up conversations and interacting in healthy, productive ways. And I’ve been really gingerly resuming contact with people who I’d steered clear of in the past.

Now, it hasn’t been easy going. It’s been touch and go, and I’ve actually backed off on a lot of social interactions that I once had. I’ve stepped away from a lot of old friendships and acquaintances, to keep myself sane and centered. But sometimes I’ve distanced myself from people just out of laziness. And a desire to withdraw, isolate, and do my own thing without having to work with others. That has not been the biggest improvement in my life.

And yet, it serves its purpose. When it comes time to interact with people, I’m far less depleted. I am aware of my challenges, and I take proactive steps to deal with them. Being aware helps. So long as it doesn’t hold me back. Fortunately, this past weekend, it didn’t hold me back very much, aside from a few blips in the road.

I would like to get to a point where I can freely interact with people, connect, and just have a conversation… eventually building up friendships.  I’m not quite there, yet. I think this is one way I’ve slid back over the past few years, while I’ve advanced in other ways. I think I’ll get there, eventually. Maybe sooner than later. But I’m not quite there yet.  Sometimes I get down on myself, thinking I should be farther along. These things take time, though. It will come.

I guess this is just how it is… Steps forward, steps back. TBI is never easy, and it has its share of surprises. I’ll count my blessings that I had such a good weekend and such a good time with my relatives. Right now, that’s what counts.

Therapy + TBI = Disaster

"My therapist told me the way to achieve true inner peace is to finish what I start. So far today, I have finished 2 bags of M&M's and a chocolate cake. I feel better already"

I’d like to propose something controversial here that probably won’t be well-received in psychotherapeutic circles. I’ve said it before, I believe, but I’m going to say it more emphatically now. Someone recently commented on another one of my posts, right when I’ve been thinking about it a lot, so I’ll say it again:

Therapists/mental health counselors (without a strong grounding in neurological information) are about the last people who are able to effectively deal with mTBI. And in the early stages of recovery, seeing a therapist to “figure things out” can do more harm than good. Much more harm than good.

It’s unfortunate, and I hate to say it, but I believe it to be true, based on personal experience with therapists and with friends/acquaintances who are therapists. What I’m about to say comes from years and years of observation, and no matter how seriously therapists may question my point of view (after all, I might be mentally impaired), I still believe it and I stand by it.

See, here’s the thing — TBI seriously screws with the functioning of your brain. Even a “minor” concussion and shear and shred axons and synapses and all those connectors that you’ve built up over the years to learn to live your life. Plus, it releases interesting chemicals into the brain that kill cells. Don’t be alarmed – the brain is a marvelously resilient organ that ingeniously figures out how to re-route connections, recruit other parts of the brain to do the jobs of parts that can’t do it anymore, and generally adapts to changing conditions in ways we are only beginning to recognize and understand.

The thing is, in the early stages of injury (and by early, I also mean the first couple of years after the incident — TBI is a gift that keeps on giving 😉 ) your brain is still trying to figure things out and it is organizing itself around a new way of needing to live your life. Generally folks with TBI don’t have a full and complete understanding of how they’ve been impacted and how it’s affecting their life – we just thing that the world has suddenly gotten all screwed up for no apparent reason. So, our brains are floundering and confused and not quite sure how to find their way out of the messes we’ve gotten into.

And the reorganization that normally takes place as a natural part of recovering from an injury — the reorganization of our brains along certain lines, so that we can resume some level of functionality — can be a bit haywire. The “plastic” brain is a lot like modeling clay. If you press it into a certain mold and leave it there, it will assume that shape and become like its environment. If you leave a lump of it lying on a table and walk away, when you come back a week later, it will be hardened into a chunk that may shatter if you drop it. If you stretch it into lots of thin, haphazard shapes and you leave it that way, it will harden into those thin and haphazard shapes.

So, when your brain is coming back from an injury and it’s looking for different ways to reshape itself, it can get all pulled in a gazillion different directions, because in the aftermath of TBI, things can be crazy and confusing, and we can come up with all sorts of skewed perceptions of ourselves. And if those perceptions are not questioned, challenged and corrected, they can harden into “truth” — which leads us even further down an erring path — into yet more trouble.

Hm. So, the crazier things get, the crazier you feel, and you wonder if you’re just plain losing your mind. You feel depressed and confused and out of sorts, and you don’t know why. So, you do the “logical” thing and you seek professional help. Your friends and family applaud you, because you’ve been getting harder and harder to deal with, and it seems like you have “emotional problems”. (Well, duh – emotional lability and impulse control are often “bundled” with TBI, as a neat little package of insult, injury, and humiliation for everyone involved.)

The only problem is, the therapist you start to see doesn’t know jack about TBI, and they come from the camp of “repressed memory” and how an unhappy childhood marked by long-forgotten/denied/overlooked abuse and neglect is to blame for adult issues. They believe with all their professional soul that most people are walking around in life cut off from their emotions, and that the true path to happiness is to connect with your inner hurt, name your pain, confront the things you are avoiding, and learn to love your demons.

There’s only one problem — none of what they say actually applies to you. The issues you have didn’t start until after your traumatic brain injury, and prior to that head injury, you were a reasonably happy and functional person with their share of troubles, but no “ticking time bomb” of forgotten abuse and neglect to throw you off course. They think that like certain childhood abuse survivors, you have been in denial most of your life, until you reached a certain point in your life when you had “advanced” enough to confront the challenges of resolving a difficult childhood… and they’re going to help you do just that — get in touch with your repressed memories, love the shadow, dance with your demons, and ultimately come to accept and love yourself, no matter what.

Great.

What they don’t realize, however, is that your brain is still recovering, still changing, still modifying itself to the world as it now is (rather than as it was before your injury). It’s volatile and highly subject to suggestion, and you’ve been wrestling for so long with not knowing for sure what’s going on with you or how best to deal with it, that your system is highly tweaked and on an emotional hair trigger. They think you’re in need of emotional “tough love” — but what you really need is some good regular exercise, a daily routine to take the guesswork out of your life, and extra patience and rest.

So, they push you. They challenge you. They test your limits. They try to get you to open up to them… pushing and pushing to get you to “admit” what’s going on inside of you, when internally, you’re in storm of emotion that’s neurologically based and totally inexplicable from a purely psychological point of view. They think you’re in denial and resisting necessary change, and you’re sitting there, week after week, looking at them like they’re from another planet, wondering “What’s wrong with me?!” and getting more and more confused and depressed by the week. You take it out on your friends and family, who have really had it with you, by now, and pull even farther away from you than before, thinking you’re just not trying hard enough.

Your therapist thinks you’re making great progress, getting in touch with your feelings and emotions, letting them come up and processing them. But you’re sinking farther and farther into a morass of emotional confusion, volatility, self-doubt, even desperation. Of course, this is all helping to create repeat business for the therapist who is “helping” you, and they can add even more diagnoses to the insurance bill, so what do they care? (Okay, in fairness, I’m sure that not all therapists are interested in creating repeat business, but any time you combine “care” with making a living, you get into gray areas and tricky territory.)

You’re increasingly worried about your emotional and mental health, and that’s keeping you stressed. You’re not sleeping well, which is taking a toll on your ability to self-regulate — your ability to do, well, everything. You’ve got all of the following TBI after-effects in abundance:

emotions, moods, agitated, can’t settle down, anger, anxiety, feeling vague fear, worry, anticipation of doom, depression, feeling down, excitability, everything feels like an effort, feeling unsure of yourself, feelings of dread, feeling like you’re observing yourself from afar, feelings of well-being, feeling guilty, feeling hostile towards others, impatience, irritability, no desire to talk or  move, feeling lonely, nervousness, feelings of panic, rapid mood swings, restlessness, tearfulness, crying spells, feeling tense, feeling vague longing/yearning, etc…

And according to your therapist, it’s all due to mental health issues. Not brain issues. Emotional ones. It’s not your body that’s the problem. It’s your soul. You’re screwed.

Your brain is getting a steady stream of messages from your therapist and from yourself about “the way things are” — which is that you’re screwed up and in need of some serious intervention — and it’s causing your very plastic brain to re-form itself along the lines they’re suggesting. You feel like you’re getting worse, so your therapist dials up the intensity … and tells you all the drama is good — you’re “feeling things for the first time” (which is total, utter crap) and you’re acknowledging the difficult-to-handle aspects of your life (which really only emerged after your TBI). It throws you into even more of a tailspin, and before you know it, you’re planning on breaking up with your partner/spouse/lover, you’re riding the roller-coaster of withdrawal on one hand and aggression on the other, and you’re more and more convinced that you can’t live without your therapist, who is the one person who will sit in a room with you for more than a few minutes, as you’ve effectively chased everyone else away.

Anybody else have this happen to them? It happened to me, and looking back, all the advice from my friends and family about getting professional help from a licensed psychotherapist, was about the worst I could have gotten — and followed. It almost cost me my marriage, it turned my life into an extended experience in chaos, and the only reason I managed to escape the bogus-psychotherapy merry go round, was that I ended up seeing a truly well-meaning but neurologically clueless psychotherapist who scared the crap out of me because they had connections at a local mental hospital who could have me committed (against my will) at their say-so. A narrow escape, but an escape no less.

In fairness, I do believe that a lot of therapists are well-meaning and they are acting on the information and the training they have. But too often that training does NOT include a neurological element, and/or they decide that the awful ills of the world have psychological roots.

Another thing that makes it difficult is that a lot of therapists have mental health issues of their own. A lot of my therapist friends got into therapy because they were helped by counselors, themselves. While I applaud their eagerness to help others, it puts up a huge red flag for me. Because the nature of their mental health issues — incest or eating disorders or some other awful trauma — caused them to distance themselves from their bodies at a fairly early age, and they have grown up living outside their bodies. My therapist friends are by and large antagonistic towards their own bodies. They don’t really exercise, and if they do, it’s “gentle stretching” or yoga or something really non-challenging. They are not on friendly terms with their own physical selves, which closes their minds when I suggest that exercise and taking care of your body (as if your life depends on it, which it does) is key to mental health.

It’s all “mind over matter” for them — and I’ve witnessed the same mindset in other psychologists and therapists I’ve met. Not physically vigorous. Not physically healthy. Sitting all day in small rooms, gaining weight, losing muscle tone, planning on knee and shoulder replacements to repair the damage that their sedentary lifestyles have done to their bodies. And complaining all the while about stupid little things that a little exercise would make seem inconsequential.

Good grief.

Anyway, I’ll quit ranting, now. It’s a beautiful day, and thank heaven I remembered I need to move money into my bank account to cover a monthly autobill. Just to wrap up, when it comes to deciding whether or not you really need therapy, consider your neuropsychological state, and make sure you don’t get stuck with someone who doesn’t have a clue about how neurology can make you a little crazy… but that passes with time, and with the proper training and reinforcement for what your life can really be like.

‘Cuz if you aren’t crazy when you start seeing them, regular visits can make sure you really get there.

Caveat emptor.

84 ways TBI can make your life really interesting

Some time back, I compiled a list of possible issues TBI can introduce into your life. I combed through a bunch of sources and then put them all together, took out the duplicates, and came up with a list of common complaints related to traumatic brain injury. I’ve refined the list over the past couple of years, and I’m sure there are more issues I’ve missed, but this is what I’ve  been working with, thus far.  These apply to mild, moderate, and severe. And a lot of them are problems I have dealt with on a regular basis throughout the course of my life.

Here’s the list, broken down by category:

Behavioral
1. Impulsiveness
2. Aggression (verbal/physical)
3. Raging behavior

Communication
4. Trouble being understood
5. Trouble understanding
6. Trouble finding words
7. Trouble communicating in general

Emotions/Moods
8. Agitated, can’t settle down
9. Angerrrrrr!!!
10. Anxiety – Feeling vague fear, worry, anticipation of doom
11. Depression, feeling down
12. Excitability!
13. Everything feels like an effort
14. Feeling unsure of yourself
15. Feelings of dread
16. Feeling like you’re observing yourself from afar
17. Feelings of well-being
18. Feeling guilty
19. Feeling hostile towards others
20. Impatience
21. Irritability
22. No desire to talk or  move
23. Feeling lonely
24. Nervousness
25. Feelings of panic
26. Rapid mood swings
27. Restlessness
28. Tearfulness, crying spells
29. Feeling tense
30. Feeling vague longing/yearning

Day-to-Day Activities
31. Being overly busy (more than usual)
32. Feeling like you can’t get moving, you’re stuck
33. Feeling like you can’t get anything done

Mental
34. Altered consciousness
35. Aura or weird reverie, trance
36. Trouble concentrating
37. Trouble making decisions easily
38. Trouble reading
39. Analytical skills suffer
40. Trouble telling what’s real or not
41. Being easily distracted
42. Being forgetful, can’t remember
43. Nightmares
44. Worrisome thoughts

Physical – Eating
45. Food cravings
46. Eating less / more than usual
47. Heartburn / indigestion / upset stomach
48. Losing weight

Physical – Head
49. Headache(s)
50. Stabbing pain(s) in your head

Physical – Hearing
51. Hearing music others don’t
52. Ears ringing (tinnitus)

Physical – Pain
53. Backache or back pain
54. General body aches
55. Joint painf or stiffness
56. Neck pain
57. Touch feels like pain

Physical – Sleep
58. Waking up too early
59. Being fatigued / tired
60. Difficulty falling asleep
61. Waking up during the night
62. Sleeping too much

Physical – Vision
63. Trouble seeing at night
64. Being sensitive to light
65. Double/blurred vision
66. Spots, floaters,  or blind spots

Physical – Sensations
67. Your skin feels like it’s crawling
68. Feeling like you’ve gained weight
69. Sensitivity to cold
70. Sensitivity to noise, sounds
71. Smelling odors / fragrances that others don’t smell

Physical – General
72. Feeling dizzy / have vertigo
73. Your heart races or pounds
74. Hot flashes or sudden feelings of warmth
75. Losing consciousness / fainting
76. Metallic taste in your mouth
77. Muscles spasms or twitching
78. Muscle weakness
79. Seizures
80. Nausea
81. Sexual desire feeling “off”
82. Skin breaking out / acne
83. Hands or feet swelling
84. Vomiting

Now, some of them might look like they are duplicates — #3. Raging behavior should be grouped with #9. Angerrrrrr!!!, right? I’ve actually split them up because one is behavioral, and one is emotional/mood related. Just because you’re angry, doesn’t mean you’re going to have raging behavior, but anger can still be a significant problem.

One thing that struck me, as I was compiling this list over the past few years, is how many of the symptoms are physical. It almost doesn’t make sense. You injure your head, you hurt your brain, and your body starts acting up? Where’s the sense in that? Well, considering that the brain is like the command center of your body, I guess it does make sense.

The other thing that has jumped out at me, as I’ve considered this list over the years, is how the non-physical issues can often arise from the physical. Being dizzy all the time can really mess with your head, and it can make you cranky and mean and short-tempered. Likewise, having constant ringing in your ears can shorten your fuse and make you much more temperamental. And chronic pain has a way of depressing the heck out of you.

Now, not everyone with a TBI will have these issues, but lots of people will have one or more of these problems, and lots of them can come and go over time. It’s just one more handful of pieces to the puzzle that is TBI. A big handful, actually.

Better today… of pain and ptsd

Well, I got to bed by 10:00 last night, and I was able to sleep through till 6:30 or so, which is an improvement over what I’d been able to do over the last weeks.

I’ve been kept up by anxiety over what my neuropsych evaluation is going to reveal — that’s coming up this week — me being terribly afraid that I had given wrong information or I just couldn’t think my way through certain things… I’ve been second-guessing myself for days and days, wondering if I answered as accurately as possible… of if maybe I’m more crazy than head-injured… or that my head injuries have led to some sort of mental illness that’s invisible to me because of my anosognosia… or maybe I’m just on this wild goose-chase that will end up being all for nothing.

I try to be level-headed and logical about this and remind myself that my neurpsych has been doing this for many years, and they have certainly seen worse cases than me. But still, not being able to be a full participant in the process and being a subject of examination and enquiry… well, that makes me uncomfortable, and even if I do trust the doctor. I just don’t know what to expect, and I cannot manage my wild rang of emotions, if I don’t know what I’m managing for.

Fortunately, I do feel better this a.m. — not so much pain, not so much tenderness. I got a bit of a massage yesterday p.m., and it really, really helped. Even if it was painful at times — I don’t care. Short-term pain for long-term benefits. I’ll take the pain in the short-term, if it will help me feel this much better in the a.m.

I still have discomfort when I move – especially in my hips and lower back. And my elbows are still sore. And my thighs are still tender. But I can push up my sleeves, so they’re not chafing my wrists, and my body isn’t screaming so loud I can’t hear myself think.

I tried the Arnica yesterday. i can’t say I noticed an immediate effect, but I’m going to keep trying it — 4 tablets dissolved under my tongue 4 times a day, for a few days. I’m going to take it again after I finish my cup of coffee. (I’ve heard that you have to be careful taking homeopathic remedies when you’re eating or drinking. It’s my understanding that the remedy needs to be the only think you can taste… or I could be wrong.) I’m not off caffeine entirely — that would be too much. But I am cutting back. I only had one cup yesterday, which I think helped me sleep.

This arnica experiment is definitely going to be totally screwed up by my other changes I’m making. In a “real” test, the only thing I would change would be taking the arnica, not getting more sleep or changing my diet or getting more exercise. But dude, I’m in pain, and I need it to stop, so I can get on with my life.

Thinking about the role that pain has played in my life, I think there’s a definite trauma aspect to it. I have friends who specialize in treating trauma, both in medical and psychological environments, and they talk a lot about it. They also love to tell me I’m a “trauma survivor” — having had a whole bunch of accidents that left me progressively more impaired, as the years went on, along with the social, interpersonal, and physical after-effects of my impairments that haven’t helped me get by in the world.

And since I have a history of trauma — physical, as well as psychological — I have to admit I do show signs of PTSD.

Over at Wikipedia — http://en.wikipedia.org/wiki/Posttraumatic_stress_disorder — I found this (note: my comments are in italics):

The diagnostic criteria for PTSD, per the Diagnostic and Statistical Manual of Mental Disorders IV (Text Revision) (DSM-IV-TR), may be summarized as:[1]

A. Exposure to a traumatic event – multiple head injuries over the years, along with other accidents and fights/clashes with people that threatened my safety
B. Persistent reexperience (e.g. flashbacks, nightmares) – I’ve had lots of them over the years… where do I begin?
C. Persistent avoidance of stimuli associated with the trauma (e.g. inability to talk about things even related to the experience, avoidance of things and discussions that trigger flashbacks and reexperiencing symptoms fear of losing control) – some things I just will not talk about… you can pump me for details till the cows come home, but I’m not talking about certain things that have happened to me, unless I can know that it’s not going to ruin my life, if I do
D. Persistent symptoms of increased arousal (e.g. difficulty falling or staying asleep, anger and hypervigilance) – well, yuh, I’ve had more restless nights and being jolted awake at 3 a.m. with my heart racing and my body soaked in sweat… than I care to think about
E. Duration of symptoms more than 1 month – try months and months… sometimes years later, after the initial event is over
F. Significant impairment in social, occupational, or other important areas of functioning (e.g. problems with work and relationships.) – just ask my friends, family, and co-workers… just ask my 17 former employers

Notably, criterion A (the “stressor”) consists of two parts, both of which must apply for a diagnosis of PTSD. The first (A1) requires that “the person experienced, witnessed, or was confronted with an event or events that involved actual or threatened death or serious injury, or a threat to the physical integrity of self or others.” The second (A2) requires that “the person’s response involved intense fear, helplessness, or horror.” The DSM-IV-TR criterion differs substantially from the previous DSM-III-R stressor criterion, which specified the traumatic event should be of a type that would cause “significant symptoms of distress in almost anyone,” and that the event was “outside the range of usual human experience.” Since the introduction of DSM-IV, the number of possible PTSD traumas has increased and one study suggests that the increase is around 50%.[48] Various scales exist to measure the severity and frequency of PTSD symptoms.[49][50]

Now, this is all pretty thick stuff for me to get into. Personally, I don’t feel like I can take on much more to process, other than just dealing with my own pain… but I have to say, the pain is worse, when I’m feeling the after-effects of some past trauma. When I’m dealing with people who have really physically hurt me in the past — like adults who used to really knock me around — or I’m interacting with people whom I have hurt in the past because of my bad behavior and poor social integration.

When I think back on being a kid, I remember a lot of pain, both from internal sources and from without. My pain issues date back to fairly early childhood – I was not a very limber kid, and I had a lot of difficulty doing things that other kids could just do, like touching toes and climbing and jumping and doing cartwheels and such. I had a lot of trouble with my balance, and I couldn’t do a somersault until I was about 5 or 6. I can’t remember exactly how old I was, but I do remember the day I did my first “real” somersault — I didn’t fall off to the side, but was actually able to just roll right over and keep my balance. When I tried to stretch and extend, like other kids could, it was very painful for me. But I kept trying, and I just forced myself to stretch and extend… until the pain was too much, and I had to stop… which was usually far short of where I wanted to be.

I wanted so much to participate, to take part, to be a part of what was going on. I hated being on the outside, not able to do what other kids could as easily as they could, so I pushed myself — very hard. There was a lot of pain, but that was just the price I paid for being able to be a part of what was going on.

The other source of pain was from the outside. I was raised by parents who didn’t know how to relate to me. I tended to get over-stressed and over-extended with all the stimuli going on around me (including the pain), and they tended to discipline me. Grab me. Jerk me around. Take hold of my arms and pull me to where I was supposed to be. It was excruciating, and it was shocking. My memories of childhood are full of instances where my mom would grab me out of the blue — I wasn’t following what was going on, and I didn’t understand what she wanted me to do, so she would yell and/or grab me and pull/push me to where I was supposed to be. With my sensitivities, it was like just being pounded out of the blue, time and time again. I could never prepare for it, I could never brace for it. And I didn’t really “get” why it was happening, a lot of the time.

I wasn’t able to explain my “bad” behavior to them, and they didn’t seem much interested in finding out if I was having problems, or if I was just a bad kid who needed discipline. I think, because of their religious orientation and the role that my very religious grandparents had in our lives, they “went with” the religious explanation that I was a “sinner” and that “sin” or the “devil” had taken hold in my life, so I needed to be disciplined to stop my acting out.

So, they did. I got called a lot of names, when I was little, because I couldn’t keep up cognitively or physically — spaz, space cadet, bugger, doofus, spastic… that was my dad. My mom preferred to call me pathetic or disgusting or asinine (asinine was her favorite). I was actually shielded from their wrath a lot, because I didn’t understand till I was 7 or 8 or 9 (?) that they were actually talking to/about me. I thought they were just saying what they were saying into the blue. It didn’t occur to me, till I had been in school for a few years, and other kids were calling me names, that my mom and dad were calling me names, too.

Actually, come to think of it, it didn’t occur to me that my mom was calling me names, till a few years ago. Somehow, being mistreated by my mother is a lot harder to take than being mistreated by my dad.

Even when they showed affection, my family’s hugs and touches were extremely painful. My family — for whatever reason — loves to give big, hard hugs, and it hurts like crazy when they do! I don’t know what it is that makes them think it’s okay to just throw their arms around someone and squeeze so hard… or maybe they can’t really feel it, themselves, so they have to have hard hugs and forceful contact, to even tell someone is there. My grandparents were hard huggers, and my mom was/is, too. She loves to reach out and grab people as a sign of affection, which is a double-whammy — I don’t want to shut her out, but I cannot take the force of her contact. Just over Thanksgiving, she was walking by me, and she reached out and grabbed my arm as a sign of affection. And when I was getting ready to drive home, with the weather being as rainy as it was, she got scared for my safety and she just threw herself at me and hugged me really hard, which really hurt.

I still haven’t figured out how to tell people that when they touch me, sometimes it feels like they’re pounding on me. It’s embarrassing, it’s troubling, and I dread people knowing just how much pain they’ve caused me. Being in pain is bad enough, but then “spreading it around” by telling others about it — and telling them there’s nothing they can really do, but keep their distance — is just awful. I’ve done it before, and it’s awful. Awful to be pushed out to the margins. Awful to be forced to push people away. Awful to have to hold them at arm’s length and never let them close, without pain.

Thinking about growing up in constant pain, raised by people who repeatedly hurt me terribly, is definitely not easy to take. I have to tell myself my parents weren’t fully aware of the effect that their behavior was having on me, and that if they’d known what it was like for me when they grabbed me or hugged me, they would not have done it. I have to tell myself that they had no idea, that they were innocent. Believing that my parents would intentionally harm me, is more than I can process right now.

But it’s probably worsening my pain, to hold back from that belief. Now that I’ve been away from them for a whole day, I’m starting to relax, and I’m starting to be able to adddress my pain. I think when I was in the midst of it all, I was so shut down that even if I’d been in terrible pain — which I may have been — I wasn’t aware of it. I was up in my head. I was too busy talking. I was too busy trying to stay out of arm’s reach of both my parents.

I rarely notice until days after the fact, but when I am in the midst of family at holiday/Thanksgiving time, I hold as still as possible for long periods of time — both as an attempt to not draw attention to myself, and to keep myself from acting out when I get stressed. When I’m stressed, my brain stops working really fluidly, and I end up needing to take more time to explain myself. But when things are all wild and woolly, like at my parents’ place at Thanksgiving, I don’t have the time to fully explain myself, and I end up hurting people’s feelings from a poorly told joke, or an attempt to josh around with others, and then I start flashing back to all the other times I said/did things that people took the wrong way.

Yes, I hold very, very still during the holidays… both for my own protection and that of others.

And it probably doesn’t help my pain — because of my rigidity and my disconnection from my body.

And it doesn’t help my PTSD. Because I go back to that place where I’m on auto-pilot, where I’m just keeping my head down and keeping moving, where I’m just doing what’s in front of me, and not aware of whether or not I’m hungry or tired or anxious or stressed. And when I’m not aware, when I’m just soldiering through (as I do so well!), I tend to push myself even harder — do more stuff, take on more tasks, be more manic, be more forceful, be harder on myself and add more things to my to-do list — and that cuts in on my sleep, it cuts in on my rest, it cuts in on my physical well-being.

And I have pain. Lots of it. Tearing, ripping, screaming, shooting, chafing, burning, crazy-making pain.

So, in a way, the pain is like my barometer for how I’m doing, stress-wise. It tells me if old stuff is coming up that’s making me do things and make choices that aren’t healthy. It tells me if I’m falling back on old patterns, letting my fears and anxieties and old hurts stop me from living my life. It tells me if I’m tired — and it tells me that I’ve let myself get over-fatigued and ill-nourished.

It’s an objective measurement of how I’m doing psychologically and physically. And it gives me a great “excuse” (in my mind, when a simple reason won’t suffice) to step back and cut out all the shit I’ve got on my plate… focus in, take care of basics, talk over my issues with my therapist, and make sure I get plenty of rest. It tells me, loud and clear and in no uncertain terms, that I’m totally f’ed up, and I need to stop doing what I’ve been doing, and just take a break. Take care of myself. Have a long, hot shower. Take care of myself. Now.

Unless I do, I’m going to stay in pain. That’s just the way it is. And it’s my choice.

In a way, pain is my friend — but only because it’s my mortal enemy.