Holiday Party TBI Hell – Glad that’s over

It’s not all cheery sh*t

I just got up from my nap, a couple of hours ago. I lay down about 1:30 and woke up at 5:30 or so. Four hours… sweet. I really needed that nap. I have been feeling really off for the past several days, and going to that Christmas party for work last night was no picnic.

For the record, I friggin’ *hate* Christmas parties. Holiday parties. Whatever. They seem like an exercise in vacuousness… you stand around and interact with people you work with, just for the sake of interacting… I don’t get it. The only reason I have anything to do with the people I work with, is because I work with them. It’s structured. We all have a reason for being there. We collaborate and we coordinate and we reach goals together. But socially? I would probably have nothing to do with any of these people, and they’d probably not know what to do with me, anyway. Seriously, the only reason I have any contact with these folks — like my family — is because we are connected by something larger than ourselves.

Oh my God, parties bore the living crap out of me. Especially big ones where everyone is milling around “having a grand time”. Not only are people drinking, which slows them down and turns them into the equivalent of walking mossy stumps, but the things these stumps choose to “discuss” bores the crap out of me. There’s nothing to it. Nothing. Nada. Zilch. They just talk for the sake of talking, to get a certain reaction out of others. To be witty. To be clever and whatnot. That’s nice for bonding, in a way, but the primary bond I feel with these folks has to do with getting stuff done. It doesn’t involve socializing. Not voluntarily, anyway.

Socializing “for fun”? How tiring. Seriously.

Bah humbug. Or is it really that? When I think about it, it’s not that I lack holiday cheer — I feel quite grateful and, well, stable, this holiday season. I am on good terms with my family, I don’t dread having anything to do with them, and despite having no money for presents at Christmas, I’m going to think of something. I’ll manage.

The thing that gets me, is how hard it is for me to be in large groups of people in large spaces with unstructured interaction. The company party last night was in a very large venue with lots of visual stimuli. There was a lot to see and do, and there were hundreds and hundreds of people, most of whom I did not know — and I didn’t care to hear their conversations, if truth be told. It was loud — so many people drinking and talking… a rock band playing… the sounds of silverware on plates and glasses clinking and voices getting louder and louder as the evening progressed… I tried to block it out, but I couldn’t. It was all too much.

I got there a little late, which was fine. My spouse had to work that night, so I was flying solo. I found my team… and then found that I just couldn’t hang with them. They were in the center of the big hall, milling around with tens of other people, talking about this and that — nothing, really — and I was starting to feel sick. I hadn’t been feeling well all day, as it was, and my middle ear was totally screwed up with fluid from an upper respiratory infection that went for my ears — as it often does. Nothing like wading into a huge hall of loud people, feeling like you’re falling over, to put a damper on the evening.

So, I ditched my team and caught up with another coworker (who I consider a friend) who had come with another friend of theirs, and we ducked out to get some food and just hang out for a bit. That was okay. But again, the whole social scene… all the things to see and do and take in… for me, it was nothing short of torture. And on top of it, I was wearing a suit, so it was uncomfortable and formal, and I had to keep checking to make sure I wasn’t coming apart in places, as I sometimes do. Nothing like having things unzipped or otherwise disheveled to put a damper on the evening.

The three of us ended up going to some of the different special events that were organized for the evening, and then I caught up with my team at the end. We took a group picture together, stood around talking a bit, then we all headed home. They said they missed me at supper — they all ate together, while I was off with those other friends. I felt bad that I missed them, but at the same time, they love to mix and mingle, and I was feeling so off balance, so “off” in general, that I would have been no fun at all, most likely.

Had I mentioned that I hate big, loud parties?

Anyway, I got home much later than I wanted to, and I went straight to bed. I got maybe 7-1/2 hours of sleep, and when I woke up, I felt like crap. I took care of my errands and did the things I needed to do. Then I lay down for my nap, and 4 hours later, things were looking up. I’ve been drinking a special ginger-honey tea I discovered, so I’m feeling a lot better, but I’m feeling pretty down on myself for not being better able to handle it all, last night. I was actually looking forward to the evening, but when I got there, I realized it was probably a big mistake for me to go, in the first place. I could have begged off, saying I was sick, which was true. But I really wanted to go.

Oh well, at least I went. That’s something. I managed to navigate the evening without awful incident, despite feeling so dizzy and lightheaded and off. I didn’t melt down, in the aftermath. And I didn’t do anything stupid like overstay my welcome and/or say or do anything really dense and regrettable, as I have in other social situations. I kept pretty cool, all things considered, and even though it was awkward and painful for me, and I just didn’t feel right at all, I got a lot of free food out of it, and I managed to complete the evening “successfully” — as in, no fights, no humiliation, no things said and done that can’t be taken back. So, that’s something.

Plus, I got my “inoculation” against later holiday party impulses — next time somebody wants me to come out and party, I’ll be better able to remember why that might not be such a great idea to spend an evening like that. Next time, if my spouse can come, I may go — because they are much more social than I am, and they help to keep me oriented. Then again, I may not. Because both of us actually friggin’ hate company parties, even if they do a much better job of interacting than I do.

I’ve never been a big fan of large groups of people. I’ve always been that way. But throw in the sensory issues that have really exacerbated since my TBI in 2004 — loud noises and bright lights bother me to no end when I am tired, and last night I was tired — along with being even more easily fatigued by all the stimuli and interaction… along with vestibular trouble… and it makes for a really tough time.

I just have to remember that, the next time someone invites me to a big party and I hear myself saying, “Why yes, I’d love to!”

The best part of the party last night, was driving home. Even if I was practically falling over in my seat and I felt like crap and I was afraid I’d fall asleep at the wheel, it was still such a relief to be getting OUT of there. That got me home. And it felt great to be alone in the car as I drove.

That’s something.

New week just around the corner. We’ll see what happens.

More quick responses to loaded TBI questions

More Questions…

Here are some more answers to questions I found in my search stats the other day. It’s a continuation of this post: Quick responses to loaded questions

1. tbi and no setbacks what does it mean? – It means you’re very, very fortunate. More fortunate than many. And you have every right to be happy about it. But it’s a double-edged situation. If you have a TBI and you have no real setbacks, are you actually injured? Do you need help? Do you need special consideration? Does your injury even count?
2. broken bodies shattered minds book tbi and vision loss – This is a tough one to give a quick response to. It’s out of my league. A broken body is a hard, hard thing. It may come back, somewhat, depending on the nature of the injuries, but it can be a long road back. And the mind can be shattered by the experience. Mind and body are so closely connected — break one, and the other can easily follow. Likewise, healing one can help heal the other. Focusing on physical fitness and physical healing can do wonders for the mind. And putting the mind back together can help you see clear to healing the body. But in my experience, the body comes first and then my mind follows. As for vision loss and tbi, traumatic brain injury can result in spots in your vision, double-vision, vision loss, light sensitivity… the optic nerve is managed by the brain, so if that part of the brain is injured, your vision can be affected. See http://www.afb.org/Section.asp?SectionID=93&TopicID=417 or http://www.lowvision.org/traumatic_brain_injury.htm for some info. I’m not sure about how to fix it. I think there are corrective lenses — especially Irlen lenses for light sensitivity — and I think there are therapies you can do. But it’s not something I know much about; aside from being sensitive to light, I don’t believe my vision has been affected by TBI. Although… now that I think about it, when I was seven or eight, I had to get glasses. I looked up at the moon, and I saw double. It could have been a result of my TBI(s) when I was a kid. I really don’t know.
3. how to keep a tbi journal – Journaling has proved to be very helpful for people with TBI. I used to journal a LOT to track my issues and come up with alternatives and solutions. I kept track of the things I needed to do each day, and I tracked how well they came out. If they didn’t come out the way I wanted/planned, I spend time figuring out what I needed to do to have them turn around and be better the next time. It helped me immensely, just to write it down and see what was going on in my life from a distance. It also helped me get in the habit of thinking things through while I was doing them. What I had been writing in my journal stuck with me through the following days, and it made me more present, more mindful. There are a number of different ways you can keep a journal that works for you. You can keep a diary where you write about your life experiences in general. You can keep a journal where you track specific issues. You can even keep a blog, as I do. Whatever works for you is important — and make sure it works for you, doesn’t pull you off track. I kept journals for years, where I simply perseverated on the same topics over and over and over and over and over and over and over again. Looking back, I used up a lot of notebooks and paper, saying pretty much the same thing, day in and day out. This blog is a better way for me to manage things, because chances are someone else will read it, so it keeps me honest. It also keeps me in touch with the outside world, instead of being off in my own private Idaho.
4. tbi and evil – I once heard about a doctor who said that TBI survivors have no sense of good and evil. So much for their medical education. I think that when it comes to “evil” people’s perception of it can be relative. TBI can certainly reduce your inhibition and impulse control, causing you to mindlessly do things that seem evil to others. Or maybe they really are evil. But I’m not sure TBI actually causes people to do evil — I believe it makes them more inclined to do what they already do, but without the impulse control. If someone is already an evil person, an angry person, an aggressive person, TBI can make them worse. If they are a good person, an easy-going person, or an accommodating, gentle person, TBI can change them to seem more evil than they were before. I think it’s really about mindfulness and intention. Paying close attention to what’s going on with you and not giving in to whatever impulse comes up. But does TBI automatically make people evil? I vote no.
5. discipline techniques for children with tbi – This can be quite a challenge, as kids with TBI respond differently to discipline than other kids, and the techniques everyone assumes will work with them, simply don’t. Project LearnNet has a nice tutorial on Discipline for kids with TBI – http://www.projectlearnet.org/tutorials/discipline.html – where they talk about different kinds of discipline styles, which involve different combinations of authority by parents, reward and punishment, arbitrary punishment, and permissive approaches. It’s a really great tutorial, and well worth the read — not only for people dealing with kids with TBI, but for all of us. My understanding about discipline for children with traumatic brain injury, is that you need to be consistent, clear, and not only rely on punishment to keep kids in line. Being positive and focusing on what they should do, instead of what they shouldn’t, is very important.
6. +alarm with finder for tbi patient – I suspect this question is about locating a TBI patient who is prone to wandering off and getting into trouble. I’ve had elderly relatives with dementia who would do that. It’s very scary. There must be some products out there to help. Check with your local Brain Injury Association chapter for tips.
7. tbi screaning for cognition/communication – again, I’m not sure about the screening possibilities. Check with your local Brain Injury Association chapter for tips.
8. adolescents with tbi isolation – That would have been me. It still is me, to some extent. With TBI, you can get so turned around in social situations, and have so many bad experiences, that the anxiety becomes overwhelming, and it’s just easier to keep to yourself. It’s REALLY hard when you’re an adolescent with TBI. I was in the situation where I entered adolescence with TBI issues, so nobody knew me any different, and I was able to make some friends after some effort. I have to say, though, that the effort was often on the part of others. People actively worked to bring me out of my shell — I was more content being by myself. I was incredibly fortunate to have people reach out to me. But when I had a couple more concussions in high school, I withdrew again. Got into drugs and alcohol. Distanced myself from the people who tried to be my friend. Just isolated. It was easier. It was disorienting and depressing to always be surprised by the unexpected. Things just got jumbled in my head, and it was overwhelming. So, I withdrew. “Who needs ’em?” is what I told myself.
9. tbi rage management – Classic TBI issue. Manage the fatigue and the anxiety and stop telling yourself you’re a broken-ass loser, and the rage may be reduced. That’s what I do, and it works for me.
10. mbti and tbi – Traumatic brain injury comes in various shapes and sizes. Mild (mtbi), Moderate, and Severe. These definitions relate to the initial type of injury, not the long-term outcomes. The BIA website has a page all about brain injury severity at http://www.biausa.org/about-brain-injury.htm#severity. The important thing to remember is that mtbi and concussion ARE brain injuries.
11. anger from a tbi – See Quick responses to loaded questions for discussion of anger and rage. Keep in mind, TBI alone can make you angry. And fatigue, anxiety, confusion, frustration, all that, can make it even worse.
12. is it harder to suffer a tbi at a younger age or an older age? – It’s never easy. But there are differences between the injuries. People used to think that kids who had TBIs would recover better, but now research is showing that this may not be the case. A young brain is still maturing, and traumatic brain injury may affect development. It’s hard to say what the real deal is, but more people are studying this issue, and I would imagine we will learn more in time. In my case, having sustained TBIs both as a kid and as an adult, the concussions/head injuries I sustained as a grown-up were much more impactful, because I am dealing with the cumulative effects of past injuries, and they tend to affect you more if you’ve had ones in the past. I also had more to lose, so the job troubles, relationship troubles, money troubles all made for more serious impacts in my everyday life. But the impacts to me when I was growing up had to do with my development, so I’m sure that those setbacks affected me psychologically as well as cognitively. I think a lot of it depends on the person and the injury, but there’s no one simple answer to this question.
13. husband is a tbi survivor– See these documents:
    • Helping Your Family Member with TBI – section1 
    • Helping Your Family Member with TBI – section2
    • Helping Your Family Member with TBI – section3
14. mtbi online courses – Check out this course: http://www.neuroskills.com/edu/ceumtbi1.shtml to learn about MTBI and get continuing education credits. Also, check out Brain Injury Tutorials – LearnNET from BIA of NY State. They are really, really good, if you want to learn about how TBI can affect kids in school.
15. how do you think after a tbi – Very carefully. Seriously. I’m not being flippant. After a TBI, you have to think pretty carefully, often about things you used to take for granted. It can be a long process getting back, but you have to keep at it. Remember, you’re building up connections where they have either been damaged or they didn’t exist before. Thinking things through, planning activities, and following through are very important.
16. career change after tbi – I kind of did this. I used to do a lot of computer programming, but now I’m doing more general work that involves a wider array of activities. It’s actually better for my career. Staying specialized in that old programming area was not something I could do very well, anymore. I had a few false starts with trying to make it happen — made some poor job choices — until I found this present situation, which is working out much better for me. It’s important to be realistic about a career change. First, can you afford to do it? Second, do you HAVE to do it? Third, what can you do that is going to move you forward, not set you back? I had it in my head for some time that I was going to have to “downsize” my career and do things that were simple for me. But it turns out that I needed to go in the opposite direction – do things that involve more learning for me. One of the saddest things I’ve experienced is hearing a person with TBI telling everyone at a support group that they had to give up the career they loved so much, and they had to throw away all their materials and supplies, because it was out of their reach. I’m not sure that was true. TBI survivors often overstate our difficulties and understate our abilities, so we can make choices that work against us. Keep that in mind, if you’re considering career change after TBI.
17. how long can’t i do things with tbi? – That depends on your TBI and it depends on what you want to do. If you are still healing, then you have to take it easy and rest and let yourself heal. If you’ve been dealing with TBI for a while, and your physical situation has healed, and you’re still not doing things because of your injury, maybe you need to start doing those things. It’s a fine line. On the one hand, no one is in a better position to re-injure us, than we are, ourselves. We can have poor risk assessment skills. We can misjudge situations, and we can overstate our abilities. But at the same time, we can really benefit from trying and practicing things that we want/need to do. Too many times, we are held back by the people who love us, because they are trying to protect us — trying to protect themselves — from another injury. Finding a balance between what you can and cannot do, what you can’t do now but can do later… it’s one of the great challenges of TBI.
18. effects of tbi on schizophrenia – I have no idea. It might make it worse?
19. tbi recovery gunshot – Here’s a great article on this subject: http://main.uab.edu/tbi/show.asp?durki=85704. From the article:
    Outcome After Brain Injury Due to Gunshot WoundIt is difficult to predict what type of physical and mental problems a person might experience following a gunshot wound to the brain. It depends on what areas of the brain have been injured, which varies from case to case. Some areas of the brain may have been spared injury, meaning that the functions controlled by those parts of the brain are unaffected. Because the frontal area of the brain is often injured, many people with gunshot wounds have difficulty with attention, learning, memory, and problem solving. These mental difficulties, along with physical problems (for example, paralysis of one side of the body) can impact the independence of the injured person. It is common following a gunshot wound for the injured person to need some assistance and supervision from family members. Sometimes people are able to return to work and to live independently, but that cannot be guaranteed. Return to driving may be impacted by the presence of seizures.A person can experience emotional problems following a gunshot wound to the brain. In part this may be caused by the area of the brain injury. In many cases, problems with depression are caused by the change in lifestyle for the injured person. The sudden lack of independence and the presence of significant mental and physical problems weighs heavily on some people, leading to depression. In some cases depression was a problem before the injury, particularly among those whose brain injury was caused by a suicide attempt. It is important that people experiencing emotional problems after brain injury receive treatment. In most cases, there is a good response to anti-depressant medication and counseling.So, it seems like TBI from a gunshot wound can be extremely challenging. If the gunshot is from a suicide attempt, you clearly have to address the problems around deciding “I’m going to kill myself.” TBI recovery is never easy, however.
20. tbi brain stem injury disequilibrium after walking – See this web page: Balance Problems after Traumatic Brain Injury – it explains a lot. My own balance problems seem to be related to food allergies. If I eat/drink something I shouldn’t, my inner ear feels like it’s filling up with fluid, and then I have balance problems for days. I’m not sure my brain stem was ever damaged. There doesn’t appear to be damage on my MRI from several years ago. But balance issues are a real problem. With me, they create tremendous stress and anxiety, which in turn exacerbates everything else.

More to come…

How little things get big – balance issues

TBI Vestibular Cascade (click to enlarge)

You know, when I fell in 2004 and smashed my head on the back of those stairs —bang-bang-BANG– and I got up from the fall and sat myself down at the table in the next room to collect myself, I never in all my life thought it would make the kind of difference it has. It’s crazy. It’s not even like I was in a horrific auto accident or I was in an IED blast or I was shot in the head. I just fell down the stairs, right?

Big deal…

Except that it was. It started out small, then turned into a big deal. Who knows what was going on inside my skull at the time? Who knows if there was some swelling? Who knows how many neurons fired so wildly that they died off? Who knows how much protein and other substances leaked out into my brain to fry my connectors? Who can say? The difficulties I experienced were NOT huge deals. Yes, I had a hell of a headache. Yes, I was disoriented. Yes, I was more quiet than usual. But it was just a fall, right?

This is one of the most problematic aspects of mild TBI — the issues that come up may not seem like a lot, at first blush. But cumulatively, and over time, they can usher in a lot more complications that just screw everything up. It’s not so much that I had these significant issues, like not being able to walk or talk or remember my name. The issues were much more subtle, and that made identifying them and dealing with them that much harder. If you don’t know something’s wrong, you can’t fix it, and I had no idea that anything was wrong for years.

In that time, I managed to lose a really great job that was a “no-brainer” for me and looked like a very promising long-term engagement. I managed to make a handful of really dumb job decisions, and I managed to spend just about every penny of my nest egg, to the point where, six years later, I’m just now starting to not live paycheck-to-paycheck, and I’m just now starting to get out from under the huge debt load I acquired over the years.

The thing about mild traumatic brain injury, is that it sneaks up on you. It introduces a hundred little variations to your life, all of which individually would not seem like such a big deal, but together can throw you into a tailspin that some people never come out of completely.

The worst thing is, even when you learn to deal with the tailspin, it’s awfully easy to forget and lose track and end up doing and saying things that get you into trouble. On a certain level, you know it, but you can forget…

Take for example, a simple thing like being off balance. I’m not talking about the kind of vertigo that has people falling over in public places or unable to leave their homes. I’m talking about just feeling off balance all day, every day, and never being able to get away from it far enough to regain your balance – literally or figuratively.

If there’s one thing that’s wreaked havoc in my life like nothing else, it is balance (vestibular) issues. It’s crazy, how much they have affected my life and screwed so much up. Now, I’ve talked to doctors about this over the years, but my problems were never enough to warrant heavy-hitter drugs (and the ones they prescribed to me, like meclizine) didn’t help at all. They just made me foggy, which is about the last thing I need. Comparatively speaking, anyway, my balance problems are “mild” — when considered just in and of themselves. But in the context of my whole life, and cumulatively, they can be a real (excuse me) bitch.

Here’s how the “TBI Vestibular Cascade” plays out with me

* Falls, injuries in the background

o TBI – multiple TBIs, actually

+ Cognitive impairment – not huge, often not noticeable, but enough to be a real pain in the ass that throws me off

+ Behavioral issues – can be a problem, especially when stressed – fatigue feeds agitation which feeds anxiety and irritability, which can spiral into rage in an instant’s flash. Not good.

+ Emotional issues – ditto

+ Functional impairments – like physical issues – sensitivity to light, sound, touch, and of course, being off balance

# Vestibular instability (feeling off balance most of the time)

o Proprioceptive disorientation – not being able to sense where my body is in relation to other things

o Experiential issues – keep bumping into things

o Spatial – see above

o Visual – so busy trying to keep upright, I don’t see things that are right in front of me (inattentional blindness caused by focusing 100% on keeping my balance)

o Taste/Smell – either non-existent or pumped up to 300% because of stress

o Tactile – see above

o Cognition – disorientation stresses me and cuts in on my cognitive resources… just can’t think

+ Learning – and because I’m having trouble thinking, I have trouble learning

* Sensory extremes – examples below:

o Visual – I’m so off-balance that all I can think about is staying upright, which means I don’t see things that are right in front of me, because of inattentional blindness, or perceptual blindness, “the phenomenon of not being able to perceive things that are in plain sight” which is caused by focusing 100% on keeping my balance. I am so busy attending to my balance issues, that I literally have n

o bandwidth left for seeing what’s in front of me.

o Spatial – Ha! When I’m off balance, I have a tough time figuring out where things are. I bump into things, knock things over, break things. Stressor…

o Tactile – see above

o Taste/Smell – When I’m stressed over my balance problems, I can have taste/smell that’s either at 300% or is non-existent. It’s unpredictable. And annoying. Another stressor, depending on the circumstances.

o Experiential – I’m having a really tough time, and I’m struggling to keep up… because I’m struggling to keep upright.

o Learning – it would be nice if I had the bandwidth to learn, but I’m in the process of trying to keep myself from falling over, so I’ll have to learn another time.

o Cognition – with the stressors of physical issues, my cognition is really impacted. I just can’t think. A lot of it, I think, has to do with being so fatigued from my physical issues, that my mental facilities are impacted.

o Sensory inattention

+ Sensory muddling – sometimes nothing makes sense, it’s all a big mish-mash of “stuff” I need to sort through.

+ Misinterpretation of clues – and sometimes I get turned around by all the stuff I’m sorting out, that I misinterpret things that are said to me, or I miss a social clue, like someone stopping talking to me, when I’m having a discussion with them. One would think I’d catch the hint and be quiet/give them a chance to talk, but when I’m whacked from being off balance, it’s really easy for me to miss those kinds of clues.

o Interpersonal social issues – result from the problems I have above

+ Social withdrawal – How many times can I totally screw up social interactions and still stick with it? After a while, it seems like a total waste of time. Really.

+ Lack of communication and interpretation – When I shut down, because I’m having so much trouble balancing, I stop communicating and interpreting what others say to me. I just don’t have the energy or bandwidth.

+ Learning differences and disabilities – As a result of withdrawing and getting turned around so many times (and not just in adulthood, but when I was a kid as well), I’ve learned to learn in different ways. These differences, when not integrated into the world around me, can become disabilities. Not because of me being disabled, but because I’m just different, and others can’t always detect and allow for that.

+ Social development and integration issues – all of the above add up...

+ Social withdrawal – and I figure, “Why bother?” It’s much easier just being off by myself.

* Vicious cycle of continued neglect and compounded physical issues

o Crime and punishment – I’ve had more close calls with the cops because of communication issues than I can count on the fingers of both hands. I’ve also been routinely punished by teachers and other authority figures for “defying” their orders, when I simply didn’t understand. My parents had to step in and save me from some of my teachers, because the teachers weren’t being clear with me, and I couldn’t let them know that I didn’t understand. Now, I’m not mapping all my crime and punishment experiences to vestibular issues, but when you’re so taxed and fried from keeping your balance and you have no energy left for social interactions, it can be an issues.

o Employment/Social functionality issues – see above

+ Financial instability – When you’ve got communication and social interaction issues, and you’re so busy just trying to stay upright that you run out of steam, it’s easy to get into financial trouble. REAL easy.

o Compromised relationships – arising from communication and interaction issues, leading potentially to:

+ Abuse, Divorce, Instability, Unemployment, Isolation

+ Health neglect – fatigue cuts in on your ability to care for your health, including detecting when you need help

+ Worsening conditions – can go unnoticed, unaddressed, and communication issues can keep you from seeing a doctor because of the difficulties

+ Re-Injury – fatigue can stop you paying enough attention to the world around you… going faster, going faster… ending up in a jam again

o Trauma Response to Circumstances – what’s more, on top of all of this, you’ve got a physical trauma response (your hyper-alert sympathetic nervous system kicking into overdrive on an instant’s notice, whether or not it’s warranted), which makes things even more… interesting

+ “Normal” circumstances trigger trauma response – even if there’s no immediate danger, the perception of danger can set off your sympathetic nervous system, sending you into fight/flight

# Physical issues > emotional response – you can have an emotional response to physical issues… becoming emotionally overwrought when you’re off balance (this happens to me a fair amount – I tend to start to panic, when I feel myself getting off balance yet again)

# Social issues > trauma response – unsatisfactory social situations can trigger you… like that flood of dread that comes up when you contemplate going to a party, after the last time you went ended in some sort of humiliation or ridicule.

# Interpersonal issues > trauma response – bad interpersonal interactions can also produce a trauma response… like seeing a cop in your rear view mirror and physically re-experiencing the last really unpleasant encounter you had with a “statey”.

Vestibular issues may resolve on the surface, but the underlying experiences that accompanied them before remain, setting up an associational cascade of PTSD-like reactions to the conditions that resemble the original problem.

It’s a lot, I know. But this is all consistent with my own experience. I haven’t gone to the great extremes of incarceration and divorce and bankruptcy, but I’ve been damned close, and the fact that I’ve narrowly escaped so many times makes me believe in a Higher Power of some kind. In fact, the perception of others that all this couldn’t possibly come from something as simple and as “minor” as vestibular/balance issues, is testament to the very human tendency to play down things. And it speaks to why and how mild TBI is so often under-estimated in its ability to disrupt, even destroy, lives.

It’s not that I’m looking for sympathy or to have anyone cluck their tongues over how hard I have it — I think it’s just important to point out the ways in which TBI symptoms can cascade into one another, building up and building up until they turn into serious problems that aren’t easily dealt with.

The key for me is to head these things off at the pass and keep myself from getting too dizzy to begin with.

[x] Stay rested – check

[x] Avoid dairy like the plague – check

[x] When I AM dizzy, slow down and take my time – check

[x] When I AM dizzy, make sure I get extra rest – check

[x] When I AM dizzy, DON’T PANIC – check

Because I know what can happen, if I don’t take care of myself. It doesn’t always progress to the extremes described above.

But I know for damned sure, it could.

Finding balance

Source: Jason Dunn

I’ve been reading the DOD’s new Mild Traumatic Brain Injury Pocket Guide, and really appreciating it.

It talks about definitions of mTBI and common symptoms, and it talks about different approaches to take to treat them. What a breath of fresh air — which is probably not the sort of thing that often gets said about the U.S. Department of Defense.

Included in the topics are:

• Management of Concussion/Mild TBI
• Management of Headaches
• Management of Other Symptoms
• Management of Dizziness and Disequilibrium
• Management of Fatigue and Sleep Symptoms
• Management of Vision, Hearing and Olfactory Symptoms
• Management of Irritability
• Management of Appetite Changes and Nausea
• Cognitive Rehabilitation for Mild TBI Consensus Conference: Summary of Clinical Recommendations
• Driving Following TBI Conference: Summary of Clinical Recommendations

It’s really great to see these pieces of information collected in one place, in a pocket-size format (although on my computer, I look at it full-screen, so it’s not in pocket form for me right now).

I’m particularly interested in reading what they have to say about dizziness and disequilibrium, because that’s been such a big issue for me for so long. Being dizzy has wreaked havoc with my health and mental state more than I can say — I used to have such a hard time staying upright, I’d flip out over every little thing, and I couldn’t talk to anyone, first thing in the morning, while I was trying to get ready for work. I had to focus so intently on what was in front of me, and not falling over, that if anyone spoke to me while I was getting dressed or making my breakfast, I would lose it.

Seriously, I was a friggin’ bear to deal with, first thing in the morning. For years. I feel  sorry for all the folks who have had to deal with me, when my vertigo was at its worst.

Being dizzy and losing my balance didn’t help, back in 2004, when I was standing at the top of some stairs and my spouse called for me to come get something. I had no business standing at the top of those stairs in stocking feet, but I was… and in the space of a minute, I was lying at the bottom of those stairs in a foggy daze, not quite sure how I got there, but remembering quite clearly the BAM-BAM-BAM of my head on the steps as I went down.

Shit.

Anyway, enough dwelling on the past. I’m getting back to balance, I must remind myself.

It never actually occurred to me that it was abnormal to be so dizzy all the time, till I started talking to folks about my recurring intense vertigo a few years back. I had told one of my past doctors about being super-dizzy when it was particularly bad, some time back. They just put me on meclizine, which did absolutely nothing for me at all. It didn’t even take care of the nausea.

Looking at the Pocket Guide, I see that pharmacologic treatment has not been shown to be effective in chronic dizziness after mild TBI. A ha! There it is — a possible explanation for why meclizine works for friends of mine who have vertigo, but it does nothing other than make me even more numb and whacked than I already am.

Of course, at the time I was seeing that doctor (I have since moved on – they were a bit too pill-happy for my likes), I didn’t know about my mTBI issues, so I was just another medical mystery that they shrugged their shoulders over and sent away with some comment about how I’d just have to wait it out.

Interestingly, I’ve never been examined specifically for dizziness and disequilibrium. With me, it tends to come and go — it’s worse when I’m tired or I’m fighting off a cold or I eat something with dairy ingredients in it. And of course, I’m often just peachy keen in the dizziness department when I go see my doctor.

So, I’m kind of on my own in this. But reading further, it looks like I’ve been doing the right things for this. They recommend:

• Perform neck stretches — I do this, especially in the shower in the morning, when I can get really hot water on my neck and shoulders. That makes stretching easier. I also stretch before going to bed, which helps me relax and get to sleep.

• Modify activity and change positions slowly — I’ve had to do this by default. I learned the hard way a bunch of times… moving too quickly and changing positions quickly when I’m dizzy is a recipe for extensive bruising, not to mention panic.  Both are less than optimal.

• Change sleep position — I started sleeping on my back a lot more,  a few years back, and it seems to help. But there’s nothing like just rolling over and going to sleep.
• Perform vestibular rehabilitation exercises — I do my morning workouts, and I’ve been adding more balance work to the mix. I have been doing this crazy-hard move (sometimes holding onto something while I do it) — I stand on one foot, and raise the other leg up, with my knee bent. Then I bend over and touch my left hand to my right toe, and vice versa with my right hand and my left toe. Not only does it really work my legs, but it’s also incredibly difficult for me to do. I’ve gotten to the point where I can do it without hanging onto something, but it’s still hard. I may be fooling myself, but I seem to be able to tell a difference in my balance, since I started doing this.

I’d like to add to this:

• Keep yourself from getting sick and congested (my ears really do a number on my balance, when I’m congested)
• Avoid dairy (or other foods you may be alergic to). When I cut out dairy, it cut my balance issues by 2/3. No kidding.

I still have issues, now and then, but they’re not constant, so I notice them immediately and I do modify my behavior. I avoid standing at the tops of stairs for too long. I also pay extra attention when I’m going down stairs or doing other balancing type activities. I also don’t go running around out-of-doors, climbing on rocks and jetties like I used to. (What a loss that is — I used to love to climb and jump and hop from rock to rock, but my better sense has prevailed in that — somehow, not getting hurt again is worth the cost.)

Yeah, taking steps to avoid problems has become a more regular part of my life over the past couple of years. Maybe I have a better appreciation of the risks I run. That’s certainly true. And I’ve also gotten in the habit of doing things that will help prevent future injuries, not just avoid them. Like working out. And working on my strength and flexibility.

Balance for me seems to be as much about muscle strength, coordination, and mindfulness as what’s going on in my wiring/inner ear. The stronger I get, thanks to my workouts, the more balanced I feel. I’ve notice myself becoming more coordinated than I was before. I’m sure it’s a combination of things, not just my brain/wiring. But I have been noticing an improvement.

Of course, there’s always the occasional flare-up — sometimes out of nowhere, for no reason that I can tell. But as long as I keep an eye out and I pay attention, I have a chance of staying upright — and doing things that will keep me that way… or at the very least, keep me from falling over.

Well, I sold my bikes

A number of years back, I bought a couple of really nice bikes — one road bike for the kinds of long trips I used to take, one hybrid that was more for riding on bike trails in the countryside or at the beach.

But after having them sit in my basement for years on end, I couldn’t take looking at them anymore. So, I sold them to some very appreciative folks who I am certain will give them good homes.

When I bought them, I had every intention of getting back into riding regularly. My schedule was freed up, and I had a lot of motivation. But I discovered that when I rode, I was pretty distracted by all the visual and audible input around me. And riding on back roads made me pretty nervous.

So, I stopped riding. Promised myself I’d try again later… But that never materialized. I could never seem to get past the anxiety of riding, the distractions of the road, and the potential danger of traffic around drivers who weren’t paying attention.

Letting them go was probably one of the harder things I’ve done in the past few years. But now that it’s done, I feel a certain sense of relief. I can now walk down into my basement without looking at the bikes and thinking, “When will I get back out there?” I can go on vacation without having to ponder the pros and cons of bringing a bike with me. I can do a lot of things now, without that extra consideration to noodle over.

And that’s fine. Because as much as I wanted to believe that I was going to get active in that way, fact of the matter is, my life has changed and I’m better off doing other things. And frankly, even if I was fine with riding on roads and being out and about on a moving bicycle, I probably still wouldn’t do it. Because I’ve got lots to do, and less time than I’d like. I just don’t have the hours to spend on back roads, anymore.

Time to move on.

And it’s fine.

Seeking balance

Every morning I get up and exercise. I don’t always want to, but I do it anyway. As I’m working out, I often have to run through a whole list of reasons why I am doing it, why it’s a good idea, and what I will gain from the experience. I’ve made an agreement and a contract with myself  to do this each morning — in part, to avoid having to go on medication for my trouble waking up in the morning, in part, because it just feels so good to have exercised… after the fact.

One of the big payoffs that I promise myself I’ll enjoy, is improved balance. I have always had vestibular problems (which might have contributed to my falls when I was a kid?), and on and off, I still have trouble with dizziness and lightheadedness. I’m regularly concerned with the threat of additional falls or accidents, due to my intermittently poor balance.

Exercise, it’s my understanding, helps with balance, by strengthening the muscles we use to keep upright. (Especially strengthening the muscles of the pelvic floor — the muscles that keep your internal organs vertical, as well as connect the parts of your pelvis/hips.) It makes sense to me.  I’ve heard that the elderly become more prone to falls if they are weak, so strengthening the muscles with some basic exercises — like I do in the morning, each day — can go a long way towards keeping you stable in a vertical position.

I recently came across the blog Balance Chicago, which talks about vestibular rehabilitation. I will be checking them out, from time to time, as losing my balance is one of the most hazardous things that can happen to me – especially if I’m at the top of a flight of stairs or I am doing something physically strenuous. Falling is a major cause of head injuries — and my most serious TBIs have been due to falling. Out of trees. Down stairs. While playing sports…

But physical balance is only one piece of my puzzle, albeit a very important one.

Just as important to me are emotional and mental balance.  Exercise helps me work out my agitation, first thing in the morning, and it helps me train myself to pay attention to what I’m doing for extended periods AND focus on my form, which also contributes to impulse control. And when I have focus and can manage my attention properly, I find myself more emotionaly and mentally centered.

That’s especially important, this time of year. Thanksgiving is coming up, and with it comes a shift in my daily activities. This could really throw me, if I’m not properly prepared, because I rely on my routine to keep myself stable and sane. Additionally, at the same time that my major support, routine, is being disrupted, more demands are being made on me, in terms of activities and more social interaction. Without proper preparation, it’s a recipe for disaster.

And the fact that I never adequately planned or prepared in the past, is probably a big reason why the holidays in general have been so challenging and traumatic for me.

This year, I’m doing it differently. Together with my spouse and my neuropsych, I am spending a fair amount of time planning and prepping and thinking through the trip out of state to see my biological family. I am walking myself through the days, ahead of time, seeing where I can fit in my exercise routine… checking the weather for the area I’ll be in, so I can tell in advance if I need to take rain gear or not, and I can tell if I’ll need to really motivate myself to get out of the house, first thing in the morning. Next Thursday through Sunday look all clear — a good thing — with highs in the 40s and 50s. So, the weather should not be a discourager for me.

This makes me so happy! 😀

The shift in schedule is also causing me (yet again) to see how important regular routines are for me — and to realize that not having a regularly scheduled time with a psychotherapist is a problem that needs to be solved. My last therapist always had me in the same time slot, with rare exceptions. That was much more doable for me. The next therapist I see needs to make a regular appointment for me. That’s non-negotiable. Well, to a certain point… within reason, of course.

Again, balance is important.

Anyway, one of the other things that’s been in the back of my mind is that this Thanksgiving weekend is the 5-year anniversary of my fall down the stairs of the house I’ll be visiting. I lost my balance at the top of a very steep staircase, and I went down hard, hitting the back of my head on the steps a number of times. And from that point on, my life changed in subtle but rapidly worsening ways, till it was almost too late before I realized something was terribly, terribly wrong with me and my life.

It upsets me so much, that I lost so much — a critical chunk of time out of my promising career, my retirement nest egg, my savings, my credit… and I almost lost my marriage in the process. My inability to parse out what was going on with me caused a lot of things to deteriorate terribly around me, and I’m just now starting to battle back. But I’m battling. And I’m getting back. I’m making amazing progress…

And I need to remind myself of that. Because if I don’t, I get out of balance again, and I start focusing on all the things I’ve done wrong and have messed up.

I don’t want to do that. I want to have a good mix of positives and negatives. I want to be able to see all the amazing progress I’ve been making, over the past few years. And I need to measure my success by new measures that recognize the hidden difficulties I have, and accurately assess my true progress.

I have another appointment with my neuropsych tomorow, who is helping me think through my plans for the holidays. I’m unbelievably fortunate to have this person in my life, and I’m glad that I can help them, too, by doing as well as I am. They’ve told me that I inspire and encourage them, though I’m sometimes not sure why they would say such a thing.

Well, it’s not for me to decide what they should or should not think of me and my progress. It’s just nice to have someone who can objectively understand my issues and truly appreciate my progress — to balance out the people can’t, won’t, and don’t.