TBI Issues Tracking – How I Keep It All Together

For the past year, I’ve been working regularly at figuring out how to effectively identify and manage my TBI-related issues, both from the past and the present. I was keeping a journal on a regular basis, which was helpful, but there was something missing. I needed another tool to help me keep track of what was going on with me — in an objective and fairly brief way.

In my search for information, I paid a visit to http://www.headinjury.com and found their Journal of Daily Experiences. It was just what I needed! I printed out a copy and started using it, tracking my daily experiences and realizing that there was actually more going on with me than I had believed. Only when I really asked myself honestly if there were certain things going on with me — like irritability and anxiety — was I able to identify and address issues that had dogged me for decades, but I’d never been able to either identify or cope with in a constructive fashion.

I used the form from the website, but I eventually found it was too long for me to make sense of, and it was hard for me to get my head around finding each issue that was giving me problems. I needed something more organized — and something that gave me more space to write in. I had a lot to write, and I was having trouble fitting my words into the space there.

So, I copied and pasted the table on the web page into a word processing document, reorganized it with categories, and I changed the wording a little bit. Since it was in electronic format, I had plenty of room to type in my information. I didn’t run out of room.

I also wanted a version that I could print out and write on. Writing by hand is an important part of my regular recovery (it forces your brain to work the hand-eye coordination parts, as I understand it), and while typing into the word document was easier, sometimes I really needed to write the stuff down. Sometimes I needed to record things without a computer.

So, I created a PDF version — with a nice picture of a head with a brain on it, so I could keep track of my headaches, which are pretty much constant.

I have used my form(s) to record information both about my childhood (to see what problems I had) as well as recording information about my daily life. Both approaches help me a great deal in understanding my situation and formulating approaches. And I have written records of what works (and doesn’t work) for me in my daily life. Tracking my childhood experiences really helped me deal with the emotional baggage of what was a very challenging upbringing, and it helped me put a lot of my “badness” in a context I could understand objectively, without constantly blaming myself for my temper, my outbursts, my perpetual flipping out and beating up on my little brother. There was more going on with me and my head, than anyone knew. And I’ve paid a huge price, my entire life, thinking that my very nature was “bad” or “sinful” or “flawed” or “lazy” or “evil” … when so much of my behavior and performance problems read like classic TBI after-effects… and can be directly traced to them.

I wasn’t a bad seed.

I was injured.

And I never go the help I needed.

That doesn’t change the harm I’ve done over the course of my 43 years, but it does allow me to identify some of the true cause(s) of my problematic behavior and either take steps to make amends, explain myself to the ones I’ve hurt, take steps to make sure I don’t do those childhood things in my adulthood, and/or better understand what was really my fault, and what was TBI-related.

I also currently use the form(s) for day-to-day self-assessment. It may sound simplistic, but just recording my experiences on a regular basis has made a huge difference in managing my symptoms and issues. If I don’t self-assess at least once a week, I actually start to feel like I’m losing my mind… I feel like there’s something wrong with me. I feel defective. I feel useless. I feel like a total friggin’ loser. I don’t always fill out every single piece of the form, but I at least hit the high points, and that helps.

When I look at my issues in light of the tbi’s I’ve sustained, and I see that these symptoms are originating from an injury — not a character defect — it takes a lot of the pressure off. Self-assessing and tracking my issues reminds me that it’s not me that’s compromised (tho’ I must admit I have plenty of flaws that have nothing to do with tbi 😉 — it’s my injured brain that’s the root of a lot of my issues. And since I know the source of the problems, I can get outside myself and take steps to address the issues I come across.

And that makes all the difference.

I’ve uploaded the two files below for your use. I hope they help you as much as they help me!

Daily Experiences Journal (Wide) – Word Document

Daily Experiences Journal – PDF for printing and filling in by hand

There is no shame in asking for help

I was watching an old episode of “Northern Exposure” last night — remember that? the show about the New York doctor who has to work off his tuition in the wilds of Alaska? I watched it religiously when it was on, in the early 1990s, and thankfully it’s now available on DVD through my local library. (Have I mentioned yet, today, how much I love my library — indeed, the whole system they belong to, which lets me request books from all over, even colleges that would normally be off-limits to me?)

Anyway, the show was about knowing how to ask for help. Swallowing your pride and accepting the help that others offer. It was a great episode, I believe from the fifth season. A bunch of people in town were in situations where they needed a little (or a lot) outside help, and they were eventually able to see past their own pride to either ask for or accept assistance from others.

Having a brain injury (even a “mild” one) that leaves traces of impairment can be devastating, in and of itself. All of a sudden, things don’t work the way they really should (I’m not going to pretend that I think my memory issues and emotional volatility and mood problems and cognitive issues are absolutely okay — they’re really problematic, at times, and a lot of the time, my life would very likely be a lot less complicated, if I had all the functionality available to me, had I not been hit on the head so many times). All of a sudden, the world gets turned upside-down, and very little seems to work like it once did. It can really lay a person low, losing faculties and abilities that you used to once take for granted. And it can really do a job on you, when your difficulties are not immediately apparent to others, but you’re dealing with them, all the same.

Things like slower cognitive processing — figuring out what someone just said to you and how you should respond… constant crazy-making ringing in your ears… wild mood swings and sudden temper outbursts… sleep disturbances… the whole raft of issues and challenges that can accompany mTBI, may be well-hidden from the outside world, but that doesn’t make them any less real or any less difficult to deal with.

Things get even more complicated by the fact that it’s your brain that’s been affected. It makes it harder to figure out just WHAT is going wrong, and how, and when, and what you’d like to do/see/feel/experience instead of what’s going on inside and around you. It can make it harder to even see that there IS something wrong, and you can spend a lot of time (like I did, for several years after my last fall) walking through the world in a kind of daze, wondering what they hell is wrong with you and why you’re having so many problems with such simple things.

That’s where help from other people comes in. That’s where assistance offered from others really comes in handy. I’ve had years and years of experience dealing with my head injuries, and much of that time has been spent trying to go it alone and do things myself. I’ll do it myself! was my battle cry for most of my life, especially during childhood. It was so hard for me to figure out what was going wrong, what the cause was, and what should be done about things, that conceptualizing it in a way I could explain to others — and then effectively communicating it to others — was an almost insurmountable task. So, I ended up taking on a lot by myself, and I really muddled through my life, one day after another… for decades.

But when I finally started to put two and two together, and I realized that many, many of my difficulties could be traced back to my head injuries — my behavior and my life experience changed dramatically either immediately after the injuries, or they went downhill very precipitously within months — it became all the more clear to me that I did need help. That I had limitations. That there are parts of me that don’t function the way I want/need them to. And that I couldn’t go it alone anymore.

So, I started asking for help. In small ways, then building up to larger and larger ones. I have to admit, I still have a lot of trouble at times asking for help, in part because of my pride, in part because I sometimes have a really difficult time knowing whom to ask and what to ask for. But I am learning that if someone offers me help, it’s often best to accept. And not only for my sake — for the sake of others, as well.

Asking for and accepting help isn’t just for you. It’s not just for me. It’s not just for the benefit of the person who needs assistance. It’s for the person who wants to help, too. It’s for the person who sees another human being in need, and wants to reach out and lighten their burden. It’s for the person who longs to make a valuable contribution to life, who longs to pitch in, who longs to be of use. I’m one such person — I love to help other people, and I love to contribute to their well-being. It’s been that way all my life, and I’ve actually gotten in trouble for being “too helpful”.

Helping others is a need I have. It’s a need I feel compelled to fill. And I know for a fact that others share that same need. We want to be valued. We want to be included. We want to be part of the solution and help overcome others’ problems. We want to pitch in. We want to be part of something bigger than ourselves. We want to be the best people we can be, by helping others to do the same.

So, accepting help from others doesn’t just help me — it helps them, too. It includes them in my life. It makes them part of something good. We all need that.

So, the next time someone offers you help, whether you’ve had a TBI or not, please accept their offer (within reason of course). The next time you’re struggling, and someone offers to help you out, let them. Let them carry something for you. Let them help you complete something you started. Let them come to your assistance. Let them hold the door open for you. Let them be of use to another human being. When you accept help from another person, you don’t make yourself weaker. You make yourself stronger.

And that’s how it should be.

Headaches? Really…?

Okay, this is weird. I just realized I usually have a headache. And I have, for many years. I can’t remember ( 😉 if this used to be the case when I was a kid, or if it’s relatively recent, given my 2004 (re)injury.

I’ve been going through the different symptoms and after-effects of TBI listed on various websites, thinking about whether I’ve got any of them. And I do. Headaches are listed, but for some reason I never thought that I had a lot of headaches. Just to make sure, I did a quick check to see if I had one. Sure enough, I do. I have them just about every day.

I’ve been tracking my headaches for the past couple of weeks, and if I don’t start the day with one, I often end up with one by mid-morning or early afternoon. They can start in the back of my head, then move around to the left or right side… or start at the crown of my head, and then move down to the back. There could be more going on there… I need to check with my doctor about this.

Now, you may be thinking (and part of me agrees) that concentrating on headaches can bring them on. Certainly, tension can play a part. But the sharp stabbing pains that shoot through my skull now and then, are not something I can (or do) make up. And I have noticed them for many years. Tension only explains so much.

There could be other issues, I suppose. Serious health concerns that scare the living daylights out of most folks. But it’s good to check this out and see what’s really going on.

Then I can actually do something about it.

Interestingly, this brings up more issues of self-assessment with me. How could I have headaches on such a regular basis and be so clueless? Certainly, my pain threshold is higher than most folks’ I know — I credit years of strenuous activity and rigorous athletic training for that ability (tho’ perhaps it has more to do with my TBI than training). And I’m pretty good at blocking out things that don’t serve me.

But ignoring headaches for three decades? Or has it just been three years? That’s a bit eerie. I had come across a book over at Google Books called Women With Visible and Invisible Disabilities that talks about how some female TBI survivors don’t identify the pain they’re in… I’m wondering if that’s true for male TBI survivors, as well — if it’s particular to head trauma, that people lose the ability to tell if they’re in pain and if so, how much pain they’re in.

It’s oddly difficult for me to self-assess my own pain level. I just can’t tell, from one day to the next, how uncomfortable I am. And I’ve learned not to pay attention. I had some issues with chronic pain, about 15 years ago, and I guess I got in the habit of just not paying attention to it. Also, I’ve been physically active all my life, so I’ve usually been in some sort of discomfort from sore or pulled muscles, and if I focus too much on the sensation, it just drives me crazy. Frankly, some days the pain I feel in my body is so complete and consuming, I have to block it out, to function properly. Analgesics don’t help. Even prescription drugs don’t do the trick. So, I just think about other things.

Still, it’s unsettling to think that I’ve had headaches, all these years, and never realized it. Just as it’s unsettling to think that I’ve been cognitively impaired since I was 7 or 8 years old, and I never realized it — nor did anyone around me.

I’ve been plagued by this nagging sense of deep-seated uncertainty, ever since coming to terms with the idea of living with a TBI — and not knowing it all these years. The very idea that something so profound can be going on with me, and I never realized it, has been deeply unsettling and has caused me to question just about everything I have assumed about myself and my life. It’s caused all sorts of insecurity in me and the people close to me who are coming to terms with my situation, as well… probably thinking (too), “How could this have been the case, all these years, and we never guessed?”

I’ve also been hounded by a pervasive sense of betrayal, that my parents never got me the help I needed. True, 35 years ago, there wasn’t a whole lot people knew about the brain, and my parents didn’t have a lot of money when I was growing up, to pay for specialists and tutors and the like. But the fact that people just never acknowledged or addressed my TBI… and I was never afforded the opportunity to face it and come to terms with it and adapt accordingly… well, it’s a little much to take, right now.

But it’s a new year and a new start. I can’t sit around feeling bad about water that’s long since flowed under the bridge. I can find my own answers and devise my own course of treatment. Figuring out that I actually do have headaches is a step in the right direction.

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