The TBI/Concussion Energy Crisis – Part 1 of 2

This is Part 1 of a long post that (out of consideration for your time) I’ve split into two parts. The second part is here:

Running on empty?

I’m having my butter-fat coffee this morning, thinking about how I’m going to plan my day. I have some back taxes work I have to do — I need to refile from prior years, because I messed up a couple of times and I need to make it right. Fortunately, I erred to my own disadvantage before, so fixing those errors and refiling will bring in a little extra money, which I can really use.

I had a pretty restful sleep last night. However, I woke up at 5 again, which I did not want to do, and I was pretty stiff and sore from all my activity yesterday. That’s the thing about getting a sudden burst of energy — I want to use it, I want to experience it, I want to feel what it’s like to really move again. So, my body ends up moving more than it has in a long time, and then I get sore.

Fortunately, it’s a “good sore” which is a sign that I’m getting stronger and more active. This is one of those rare cases where “pain is weakness leaving the body”.

I considered getting up, because I would love to have an extra useful hour or two in my day. But I was still pretty tired, so I stretched a little bit, then relaxed with my guided imagery recording, and went back to sleep with earplugs and eye mask. I have light-blocking curtains in my bedroom, but sometimes the light gets in, so I use an eye mask. In the winter when it is cold, I wear a winter cap in bed to keep warm, and I pull it down over my eyes to block the light. But now that it’s warmer, I can’t use the cap. So, the eye mask it is.

Something about the eye mask helps me sleep — it’s a Pavlovian response, I think. I usually use it when I am trying to fall asleep during the day, and it works.  So, I have an ingrained response to relax when I put on my eye mask. And it worked. I got another hour of sleep, and I woke up feeling much more human.

Yesterday I had written about how it’s energy shortages that make me so tired, rather than lack of sleep. Well, let me just say that it’s really both that get me. If I’m over-tired, no matter how many high-quality fats I put in my body, I’m going to run out of steam. And if I don’t have enough high-quality fats in my system to convert into energy, all the sleep in the world isn’t going to fix me up.

One of the things that I think really bites mild TBI and concussion survivors in the ass, is also probably one of the most overlooked — The Energy Crisis. I think that people (especially health care providers) really don’t get how hard we have to work to reorient ourselves and retrain our brains after a mild TBI or concussion. There are so many subtle ways that our regular routines and regular thinking patterns are disrupted, and we can totally miss those subtle disruptions until they balloon in to bigger problems.

One thing after another goes wrong. Sometimes we see it, sometimes we don’t. Sometimes we catch it in time, sometimes we don’t. But so many little tiny things can be so different from before — even just feeling different — that it’s overwhelming. And the end results can be devastating — failing work performance, failing relationships, failing finances… failing everything.

For no apparent reason.

So, we end up either being hyper-vigilant and always on guard. Or we just give up and go with the flow, because who the hell can keep up with everything that’s getting screwed up? We go into either crisis prevention mode or crisis response mode. In either case, our lives are marked by crisis. One. After. Another.

And that is tiring. It is SO tiring.

So, we run out of steam. It can happen from just being overwhelmed by the sheer volume of adjustments — large and small. It can happen from feeling like we’re under constant attack from within and without — which we often are, as our internal systems are disrupted and the “ecosystem” we have been operating in starts to rag on us because we’re not keeping up. It can happen from being on a constant adrenaline rush, just trying to keep up and respond. It can come from crashes from all the junk food we eat to make ourselves feel less pain… to have more energy… or just take our minds off our troubles.  Usually, it’s all of the above.

On all levels, we’re getting hit — our mental, emotional, physical, and spiritual existence is in turmoil. And it takes a huge amount of energy to keep up.

If we don’t get enough of the right kind of sleep, and we also don’t have the right physical support to keep going, our systems short out. I believe this is why mild TBI folks can actually see worse outcomes over the long term, with problems showing up years on down the line. All the little “hits” we take in the course of each day all contribute to our biochemical overload. There’s more and more “sludge” in our system, in the form of waste from stress hormones processing, to buildup from the junk foods we eat to keep going, and that sludge adds to our overall stress levels, causing us physical stress and strain — which then contributes to our mental and emotional instability.

And years on down the line, when we “should be fine”, things really unravel, and we end up in terrible shape, without any clue how or why — and nobody there to support us, because they don’t know why either, and they probably wouldn’t believe us if we told them.

Keep reading here >>

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When everyone gets to feel their limits

Slow down folks – it saves lives

Winter storms have really knocked the hell out of many parts of this country, this year, and as I watch the news and hear about regions with thousands of people stuck on highways, and snow coming down, down, down, there’s a part of me that’s a little grateful for the experience.

NOT the bad experiences, where people are killed or maimed or otherwise injured, but the experiences where everyone gets to find out what their/our limits are, and we all have to slow the heck down.

That part I really enjoy — the forced patience, the not-going-anywhere-fast conditions, the curtailed mobility… for once, I am not the only one who is forced to improvise, to get through the day. I don’t revel in the discomfort of others (well, maybe a little bit). It’s just that for once, I’m not the only one in the room who has to think through and re-think every danged thing I do.

You know, it’s funny — I’m so functional on a daily basis, and I do such a thorough job of covering up my issues around people who have no clue (who are the people I can’t afford to show/tell, because they don’t deal well with any sort of differences of ability)… I often end up tricking myself into “buying my cover”. I tend to be so focused on what is in front of me, blocking out any distractions around me, that I don’t even notice the things that would make other people absolutely insane in a relatively short period of time.

Seriously, I can be incredibly focused. My former boss actually mentioned this on my last performance review — that I blocked out distractions and got a shit-ton of work done (they didn’t say “shit-ton”, but it was implied, and it was quite true).  But that focus also keeps me from noticing the busted-up things that need to get fixed: my injured neck and shoulder that refuse to heal up, the headaches I develop anytime my heart rate goes above 120 (I’ve been tracking it for the past couple of weeks at the suggestion of my neuropsych).

And then there are the things that never seem to go away. The vertigo and nausea that seem to follow me everywhere, the constant ringing in my ears, the chronic aches and pains that never exactly go away, just move around to different places. Fatigue, sensitivity to light and noise and touch, insomnia, attention issues, emotional lability, panic/anxiety, anger spikes, raging behavior, confusion, difficulty understanding, trouble hearing, slowed processing speed, limited short-term working memory, balance, vertigo issues, difficulty reading and learning new things, nystagmus, tremors. And so on…

If I paid attention to them all, I’d never get anything done.

I’m so focused, I don’t even notice when I get hurt. Like the big-ass bruise that showed up on the back of my right hand yesterday. You’d think I’d remember hitting my hand that hard, while I was doing some work the other day. It’s at a really tender spot on my hand, too — where the tendons/ligaments are close to the skin, and it hurts like hell when I knock my uninjured hand against something.

That’s the kind of injury you’d think I’d notice. But no, I have no recollection of having hit my hand, and for all I know, I didn’t even notice when I got hurt.

This has happened many times, before — bruises typically show up on my legs and arms after I work, and I’m not surprised. I’m a bit of a bull in a china shop, that way, so I expect to get banged-up. I always have, and I figure I always will. But not being able to remember when it happened… that’s a challenge. How the hell am I supposed to explain that to doctors, when they ask me what happened? The worst case scenario is that they think I’ve got some serious mental illness from past trauma, where I block out the experiences (some of my therapist friends of years gone by ran that one on me), and they think I’m living in an unsafe environment.

Please. It’s not that. I just can’t remember.

I’ll have to make a note of this and discuss it with my neuropsych. That, along with the patterns of developing headaches after exercise and raising my heart rate.

But I digress.

The point is that I have really changed how I live my life, to work with all these issues I’ve got. In the past, before I started my TBI rehab, my life was really run by all my issues, and I just accommodated them and lived in a very limited state. I let my emotions run me, and I didn’t deal well at all with all the “details” of my neurologically varied life. Everything ran me — through my emotions. The anxiety was out of control, I battled through each day with constant headaches and dizziness and pain, I struggled constantly with the ringing in my ears and the memory problems, and I was frankly just grateful to get through the day.

Over the past 5 years or so, since learning about TBI and getting a much better understanding of my situation and what I can do about it, my approach has changed. I do what I can, I accommodate what I can, I address what issues I can, but I don’t let them stop me. I do what I can, learn what I need to know, and just keep going. And that means a laser focus that shuts out everything that might distract me from my ultimate goal.

My ultimate goal can be as simple as getting out the door and on my way to work on time. Or it can be as dramatic as launching a new business venture that has a lot of promise.

But even with all my focus and intention and intensity, I still have to take things slower than I’d like. I have to slow down and think things through much more thoroughly than ever. I’m much more deliberate than I have ever been. I realize now that the impulsiveness that I always thought was “freeing” is actually keeping me from really living the best life possible. And when I don’t slow down, I pay the price for careless mistakes. Pacing myself has turned out to be my secret weapon in getting my act together and getting on with my life.

But the slower pace still makes me nuts. Some days, I don’t want to have a list of things to be done, and check it frequently to see what I’m supposed to be doing. Some days, I don’t want to have to think through every little thing and weigh the pros and cons. Some days, I just want to wing it and see what happens.

Unfortunately, I often discover that “winging it” sends this little bird into the engines of a passing plane. Not good. And not just for me.

So, I learn — and re-learn — the best way for me to do things. Even though it makes me nuts, it’s worth the effort and inconvenience.

But it gets lonely, for sure. Some days, I feel like I’m the only one in the room who’s not “getting it” immediately. I have to ask my coworkers to repeat themselves. I participate in conversations at work that I feel like I should understand, but I’m not getting all the details. And the details that others seem to grasp very quickly, I’m still muddling over in my head, which is painfully apparent when I am speaking up later in the meeting, after everyone has moved on, but I’m still stuck on earlier details. It’s embarrassing. I’ve got more professional experience than all the folks in the room combined, but I can’t seem to access it nearly as quickly as they can.

Great.

The thing that sucks the most, is that addressing this shortcoming is almost impossible. Because later on, I can’t remember the exact details of what all happened, and I can’t explain the situation very well to the one person who could help me. It’s very unclear. And I get all garbled and turned around, when I try to explain to my neuropsych. So, I suspect they don’t really appreciate the depths of my difficulties… because I can’t seem to articulate them in a way that makes any sense to them. They seem to think that I’m overreacting, that I’m getting overly emotional about things, or that I just have a poor self-image. In some ways they do get that I have issues — my accounts of road rage and picking fights with police officers is a pretty clear tip-off. But in terms of work, I just can’t seem to express what’s really going on with me with my processing speed and comprehension problems, and how much of a problem it is for me.

So, I need to come up with a better way of handling this — not only rely on my spotty, Swiss-cheese memory (such as it is) to relate my experiences, but actually write down what happens, when it happens… and give it to my neuropsych to discuss when we meet. That way,  I can record what happened at the very time it happened, so I’m not showing up babbling and blubbering and fumbling around the disorganized filing system in my head, looking for relevant pieces of information.

Yeah, I’ll find a better way to address this with the trained professional who can help me.

But it’s a tough one, because I swear to God, we could meet for two hours a day, every day, and I would never run out of issues to discuss and address… but I really need to check in with someone who actually believes in me (without some ulterior motive or hidden agenda), like they do. Seeing my neuropsych every other week is an essential boost to my self-confidence, and if I spend all my time talking about the sh*t that gets in my way, I’ll never have any positive feedback about the things that are going right, that I’m handling well.

I really need that bi-weekly boost. Because it is so disheartening to live this life, sometimes. I’m just a shadow of the person I used to be, and I’m not often a fan of the person I’ve become. I used to be so sharp, so quick, so bright. And the people who knew me “back when” whom I still keep in touch with, seem a little surprised at my present plodding state of mind, when our paths cross every few years or so. It’s disheartening, to say the least. I know I should be smarter and sharper and quicker and funnier. I used to be. But now I’m not even sure if I remember how I used to be.

It’s very “Flowers for Algernon” — like at the end of the book when the mentally challenged guy who took the meds to help his brain, is losing the positive effects of the drugs and is going back to how he originally was. It’s kind of like that for me. Only I’m not going back to where I used to be, and I don’t much effin’ care for this experience.

It’s like all of a sudden aging — and realizing how quickly you’re going downhill.

Sigh.

Anyway, I don’t want this to turn into a pity-party. I get tired of hearing myself complain on the inside of my head about the things that don’t go right. This winter, I’m not alone. I haven’t been the only person who’s been slowed down, and it’s kind of uplifting to see that just about everyone around me has to take things slower. And in fact, because I’m accustomed to taking things slower — walking more carefully on slippery snow and ice, taking my time at intersections, and being more methodical in my snow-moving and rain and wintry mix techniques — I’m actually able to move faster and better than a lot of normal people around me, when weather conditions get tough.

For once, I’m the one who’s sitting pretty, just taking care of business like this happens every day.

Because for me, it does. The slower pace, the more deliberate actions, the mindfulness and caution… yeah, this is old hat for me. And because I’m plenty practiced at taking it slow, and it infuriates me a lot less when things aren’t going exactly according to my plan. It doesn’t ruin my day like it does for so many others who can reasonably expect things to always go smoothly for them.

So, in that respect, dealing daily with all the additional stuff I have going on, is actually helpful, in trying situations.

But I could do with fewer trying situations.

Couldn’t we all…

Well, enough of my belly-aching. It’s time to get on with my day and see what’s coming down the pike.

Onward.