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Managing TBI symptoms all around

Posted Mar 28 2013 8:00am

Lots to work with

So, I’m headed back out on a business trip again next week, which means it’s probably going to be pretty quiet here for the next 10 days or so. I may get a chance to check in while I’m traveling, but I’m guessing things are going to be busy, so I might not get to check in.

One thing that’s been happening, which I’ve talked about before, is that I’ve been discussing my testing results with my neuropsych, comparing how I am now to how I was before. Back in 2008, when I had my first test, I was in pretty rough shape. I was struggling with a pretty constant sense of overwhelm, I had a pervasive sense that there was something terribly wrong with me, and my mental health was all over the map. I was borderline disabled… and headed in that direction, due — I’m sure — at least partly to the fact that almost all of my friends and associates were living disability-centric lives. By that I mean, they either considered themselves too broken to do much with their lives, or they devoted their lives to comforting and counseling the broken.

But in either case, their focus was on disability, wounding, victimization, and struggle. And in most cases, their perceptions of themselves and others was very similar — they not only helped wounded, damaged people, but to at least some extent, they also considered themselves wounded and damaged.

Sigh…

Anyway, the one exception to that has been my neuropsych, who has never let me get away with settling into a victim mindset, and who has really reminded me on a regular basis of what I really think about life — that it throws us some pretty intense curve-balls sometimes, and sometimes it really roughs us up, but in the end we do have the means and the ability to turn things around for ourselves and no matter how bad things may seem on the surface, we have the capacity to move on and do better.

And that’s been my experience. Truly, it has. They have helped me and offered me encouragement and information all along the way. Granted, I’ve only seen them for an hour a week — and sometimes not even that often. But they really have been a help. Because they’ve been the one person in my life who has not been sucked into the abysmal void of mistaken beliefs telling you that you have to settle for less, which I see all around me, each and every day.

I have been getting better. A lot better. My numbers are remarkably improved over last time. And we haven’t even gotten to the purely cognitive stuff yet.

What has been getting notably better is my overall functionality and my self-perception. The old depressiveness and the overwhelm is down — way down. Anxiety levels, impulsive acting on anger, social discomfort and avoidance, negative emotions, and my general sense of maladjustment are all significantly reduced — often to normal levels.  It’s literally like a light has turned on in my life. It’s like I am a completely different person on paper, and my life has gotten one of those major renovation makeovers you see on HGTV.

And yet, what all has changed? Seriously — what has actually changed in my life?

I don’t have the blindingly intense, constant headaches I once did, and the seizure-like behavior has subsided. I don’t go into anxiety/panic attacks the way I used to, and the anger and sense of confusion has subsided. But other than that, a lot of things have objectively stayed the same. I still have chronic physical issues — the pain, light-sensitivity, noise-sensitivity, balance issues, vertigo, headaches, insomnia, sleep issues, and I still find myself flying off the handle over things that “shouldn’t” get to me. I still get confused over things, I still lose track of where I am and what I’m doing, and I still actually have a lot of the 84 concussion/TBI issues that can make your life really interesting .

So, what’s changed? Basically, a few things have made a world of difference.

First, I am aware of the issues. I know I have these issues, I know that when I am not sleeping well, it affects my thinking and my sensory sensitivities, which makes life more of a pain in my ass. It’s not all this big mystery for me anymore — I’ve spent a lot of time observing my life and seeing what sets me off and what works, and after several years of serious study, I have a pretty good working understanding of what impacts me, and how.

Second, I have stopped fighting the issues. Sh*t happens. That’s just a fact. Especially with TBI. Instead of battling against the things that just are and fighting their existence, I use my energy for simply noticing that – yes, again – the sh*t has happened, and I need to respond to it, instead of wringing my hands and crying poor-me and cursing life for dealing me a crappy hand.

Third, I actively manage the issues. From my observations, I can clearly see that one thing leads to another, and I can tell when I need more sleep, or I need to wear my sunglasses when I go out. I generally know when I’m in rough shape (which is more often than I’d like, but oh well…), and I can then anticipate things going a certain way. For example, when I am very tired, I get clumsy. When I’m clumsy, I drop things. When I drop things, they often make loud noises, which startle me and set me off. So, when those things happen on days when I am tired, rather than getting completely bent over them, I just deal and move on. I take a deep breath, pick up the fork I’ve dropped and get a clean one from the drawer, and I eat my food. If I’m dizzy, I hold onto the side of the counter when I’m leaning over, so I don’t fall. And if I’m sick on my stomach because of fatigue and dizziness, I just move more slowly and eat my food at a more leisurely pace. And I get on with my day.

It might not sound like much — it might even sound very common-sense to a lot of folks — but for me, this is huge. It means the difference between

  • starting out in a really shitty frame of mind, thinking I’m damaged and wrecked and whatnot, and not feeling up to much of anything… which often becomes a self-fulfilling prophecy… and
  • starting out on a note that shows me that I can manage my situation just fine. It’s not ideal, but I can manage. And that certainly helps.

You know, it’s funny — while we were going over my test results, my neuropsych was saying how my physical problems had been really reduced almost to non-existence. Au contraire. Sure, they don’t ruin my life like before, but they are still very much there. They’ve been there for as long as I can remember. I’m just doing a hell of a lot better job of managing them, of dealing with them, of working them into my daily life, than ever before.

Again, being aware of them and realizing how they fit into the overall constellation of my life, how they shade my existence and contribute to things like anxiety and overwhelm and difficulties with thinking and processing information on the spot, has made a huge change. It’s not that I have this identity as a disabled person who cannot do anything much with their life. I have an identity as a human being who can do a lot with what they have, despite the issues that come up on a regular basis. I manage my TBI issues all around, and while it’s not my favorite way to live at times, it still gives my life a unique and very hopeful feel.

It pretty much sucks that I have these issues, and that they show no signs of going away permanently. But at the same time, I usually know how to handle them, so even though they’re there, they don’t have to ruin — and run — my life. They’re just there. Background noise. Oh, well. If nothing else, they are an opportunity to learn.

So, the bottom line is that things aren’t perfect. When are they ever? But I can manage. I do manage. Personally, if something has to be wrong (and part of me think there’s always gotta be something), I’d rather have it be this, than something more terrible that is insurmountably soul-sucking. There are plenty of folks who struggle in pain they cannot identify or address, and I’m not one of them. Not anymore. I struggle, sure, but after years or work, now I can identify the real source of the pain, and I can sure as hell do something about it.

So yeah — onward.


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