Not myself, this past month or so

I hate to admit it, but for the past month or so, I haven’t felt like myself. That is, the self that I had come to know myself to be, over the past years… the self I had trained myself to become — and to notice.

I’m not whining about it. I just need to go on record, so I remember it later. Not all is hunky-dory, and I’ve spent an awful lot of time masking all this and keeping myself from thinking too-too much about it. That’s counter-productive. I hate hearing myself talk about what’s wrong, but I need to be aware when things are not ideal, so I can do something about it.

I haven’t got time right now to chronicle everything I am doing to address these issues, so for now, I’m just going on record.

Lately, I’ve felt like things are unraveling… starting back in September when my PCP died, and the only doctor I ever felt comfortable with was gone forever.

Then in October came the announcement that the company I work for is being acquired, and all the assumptions and plans I had about my future (going back to school, getting my degree, staying on there until I could finally retire)… that all became incredibly tenuous.

Then in November my neuropsychologist tells me that they’re retiring this coming spring, and the one working relationship I’ve ever had with anyone who didn’t make fun of me or treat me like there was something wrong with me when they simply didn’t understand, suddenly got an expiration date.

The car needed a couple thousand dollars of repairs over Thanksgiving, and my bank started warning me that I was low on funds.

And then in December I find out there will be layoffs, and I and my group barely missed being cut. Someone I really depended on for advanced technical support got laid off, so now I’m sorta kinda hung out to dry, in one respect.

It’s just been a heck of an end of the year.

At least my spouse and I are reasonably healthy (aside from some nasty colds — knock wood), and we’ve had no other calamities. But piece by piece, some of the main supports I’ve been relying on, have been removed.

I guess it’s time to find new ones.

And it’s been strange. I haven’t really felt like myself for over a month. I’ve been a lot more on edge, blowing up more at my spouse, getting confused and disoriented at work. At Thanksgiving time, I was balancing between completely losing it and letting off very controlled bursts of angry steam. And while I’ve rarely been a real Christmassy kind of person, this year especially I just haven’t been in the mood. The weather has been strange, but after the absolutely sh*tty winter we had last year, I don’t care that it’s going to be warm and sunny on Christmas Day. That’s this Friday, and, well, it can come and go, for all I care.

I just don’t feel like myself. Nothing seems worthwhile, and in all honesty, the only thing that brings me total satisfaction is trapping the mice in my basement. I rigged up several traps on a little ledge where I’ve seen them run in the past, and I’ve caught four of them, so far. I have a feeling I’ll be trapping all the mice in the neighborhood, by the time all is said and done, because my garage is not very well sealed, and I’ve seen them come in through gaps in the trim. Right in front of me. Brazen.

Well, now those little brazen bastards are getting dead. And while I do feel pang of quasi-Buddhist regret that I’ve taken a life, I do NOT feel regret that these creatures aren’t running amok through my basement. I figure, I’m releasing them to their next incarnation — just speeding up the cycle of life for these rodents.

It’s not the death that appeals to me. It’s the yes-no, success-failure, instant gratification of seeing that at least something I’ve done is working. It’s basic. It’s primal. And I’m managing to successfully defend my castle against at least some maruaders.

I just wish I felt more like myself, instead of being shaky and tired and disoriented and prone to error. I’m spaced out, a lot of the time, I feel like I have more on my head than I can handle, and while I’m sure things will be fine and I’ll be able to handle whatever comes along, it’s still tiring, and I feel like I’ve lost my mooring.

Maybe I have. Maybe I have.

I just have to get it back, I guess. It’s now officially winter, and I’m ready for it. I just want to hibernate, go underground, and maybe that’s what I’ll do, more or less. The last several months with the company change have been very chaotic and unsettling for myself and everyone at work. It’s next to impossible to make any plans, and nobody knows what the criteria are for deciding who stays and who goes. Nobody can give us any clue, either, because that might tip their cards, and everyone might just take matters into their own hands, and then the deal might fall apart.

So, hibernation (figuratively speaking) might be the best thing to do. Keep everything simple and lay low. Cut back on social media (which I have). Stop reading the news (which I must). Concentrate on what matters most to ME (not the rest of the world). And focus on the basics — eating right, exercising regularly, and doing things that appeal to me and that I love and which also make a constructive contribution to the rest of the world.

I also need to get back to dealing with the logistical issues that come up with me. Sensory issues are problematic — light and sound and touch have been giving me problems. I’m dizzy a lot — almost fell over the other day for no good reason. I’m space-out, foggy, and I feel a split-second delayed, though that could be a symptom of me still being sick. I have problems typing, and my handwriting is a mess. I skip the first letters of words while I’m writing in long-hand, which is a new one for me. My temper is short, I’m getting “snappier” than usual, and I have bouts of intense depression. And lately, the headaches are back, along with the episodes of sudden pain shooting through my head, followed by feeling dull and out of it.

But hell if I’m going to take that Imitrex. F*ck that sh*t. Talk about feeling spaced-out… I feel bad enough as it is, without adding medication to it.

So, I do my breathing exercises and get my head out of a stressed-out space, and it helps a bit. It also helps to ignore it and just get on with my life. But the headaches are getting intrusive, again, and when people like my chiro or my massage therapist ask me about them, it just irritates me, because the things they do for me don’t actually seem to help all that much, but they’re so convinced that those things are The Ticket. It’s nice that they try, and I know they want to help, but there’s nothing that seems to really Work for me. Not these days.

And trying to explain that to them is a pain in my ever-lovin’ ass. People get so sensitive and offended and frustrated when I tell them what they do is not working. No science, no tweaking their approach. Just getting irritated and frustrated — and keeping on doing the same thing as before. So, I quit saying anything. Because even when I try to explain, it doesn’t help.

It’s the classic tension between what appears to be, what people think really IS, and what my experience of things is. And that fragmented collection of disconnects makes me absolutely crazy.

That, and the fact that my weekly schedule is about to change, with my neuropsych seeing me on Fridays at noon, instead of Tuesdays at 5:30 p.m.  Argh! Change! I hate it!  And I hate that it makes me so unsettled. I wish it weren’t so.

But bitching about it won’t change anything. I just need to get on with my life.

My new mantra: Screw it. Onward.

They say it’s the brain, but it’s also the body

It’s ALL connected

TBI can seriously mess you up in the head. That’s a given.

But it can also seriously mess with your physiology.

In fact, out of all the problems I’ve had over the years, the physical issues I’ve had have far outweighed the cognitive ones – if anything, they contributed to my cognitive and behavioral issues.

• Fatigue – bone-crushing, spirit-sapping exhaustion;
• Problems keeping my balance, which messed with my moods.
• Heart rate increase – or decrease, as well as blood pressure changes.
• Light and noise sensitivity.
• Headaches
• Body aches
• Sensitivity to touch, which really messed with my head, as well. Imagine never being able to have human contact… it’s not much fun.
• Constant adrenaline rush that wired me out, something fierce.

When your brain gets injured, it can affect your whole body. Because as we know, the brain is mission control for the rest of the works below the neck.

 

Eggs are great – with a few small exceptions

Aaauuugh! That drip makes me crazy!

Every morning I have my egg. I soft-boil one after I finish my workout, at the same time I make my coffee, and by the time all is said and done, I have coffee and egg (and some fruit or gluten-free granola) for my breakfast.

People are often alarmed to hear that I have an egg every single morning, but my triglycerides are all of 38, and my good cholesterol is 104 (40-60 is the good range, so I’m way above that), so that offsets my LDL cholesterol level of 142. My Chol/HDL Ratio is 2.4, which is well within the 1 – 3.5 range, so I’m good. No harm from those eggs, apparently. If anything, the Omega-3s are helping to lower my triglyerides. I only eat pastured/free range vegetarian brown eggs, sometimes with extra Omega-3s. They seem to taste better than the white eggs my mother always got when I was growing up.

Today was no exception to my routine. I rode the exercise bike (sometimes I lift weights – but today is a rest day for me), then made my breakfast. I really like the ritual of it all… especially running cold water over the hot egg, setting it in the egg cup, and clipping off the top with a quick chop of a butter knife. I get my salt and pepper and hot sauce, and I scoop out the first part of my breakfast carefully, so the runny yolk doesn’t drip down the side. And then I eat. Very carefully. Taking my time. Adding more hot sauce as I work my way down to the bottom of the shell. What a neat little package, an egg is.

One thing about eggs that I hate, is when they run, splatter, or drip. That happens pretty regularly, and it makes me nuts,  because then everything gets sticky, and I cannot stand sticky things. Must be a sensory thing with me. Especially lately. For some reason, my hands are really sensitized to everything they touch. And touch is a big way I both navigate my world and also soothe myself when my nerves are frazzled. When I am off-balance, my sense of touch allows me to right myself. It’s extremely sensitive, and it’s what I rely on, when I’m on sensory overload, with my hearing screwed up by tinnitus, my eyesight focused on straight lines so I don’t fall down, and my sense of smell and taste practically non-existent. If my sense of smell and taste are almost nill, and my hearing is stopped up by tinnitus, and my vision is engaged with keeping my balance and making sure I stay upright, then that leaves my sense of touch to keep me connected with the rest of the world.

Plus, when I am stressed out, I tend to “stim” — or “self-soothe” — to calm myself down. Touch is a big part of that. I will either wring or rub my hands or run my hands over nearby surfaces. Once, I was visiting relatives and I was completely whacked out by the long drive, the sensory overwhelm of travel, not to mention fatigue from the drive, and I went for a ride in someone’s new BMW. I hopped in the back seat, and immediately started running my hands over all the surfaces. Leather interior. Soft and smooth and clean. Nice. My spouse had to explain to the driver (who was watching me curiously/weirdly in the rear-view mirror) that I’m “just really tactile”. And that was that. I felt like I couldn’t resist running my hands all over everything around me. It was incredibly soothing.

Yes, being able to directly contact the physical world around me, balances me out — in more ways than one.

So, when things are sticky or slippery, it makes me anxious. And few things make me more anxious than runny eggs that have escaped the container they’re supposed to stay in.

Runny eggs on a plate of bacon, eggs, and hashbrowns, are welcome. I can deal with that – so long as they stay on the plate.

Runny eggs dripping down the side of the egg cup are not.

Runny eggs splattering on the counter where I’m eating… makes me want to snap. Throw something. Break something. I don’t. But I sure as hell feel like it.

So, it’s always a balancing act, when I’m eating my breakfast. I need to be very careful, to keep the egg from dripping and splattering, and when I get it right, it’s beautiful. When I don’t, it’s yet another opportunity to practice keeping my wits about me and not losing my temper.

So, either way, I get what I need.

It’s just not always pleasant.

Anyway, it’s Sunday, and I have a lot on my mind. A friend of mine hit their head a few weeks ago, and they’ve really been struggling with behavioral issues since then. All over the map, emotionally and logistically. Forgetful. Impulsive. Explosive. They’ve been struggling, and they’ve been telling everyone to leave them alone so they can heal, but I’m not sure they even realize how they’re supposed to be healing, and from what. They’re clearly in stress, and their system is telling them to GO-GO-GO, even while they just need to slow down… stop. Catch up with themself.

I need to write to them. I’m not sure if it’s going to help, but I need to at least try.

Oh, and I also need to call my Dad, since it’s Father’s Day. I kept forgetting to get his card, last week, and it’s probably not getting to him till tomorrow.

But most of all, I need to to take a break. I intended to do that yesterday, but it ended up being a git-er-done kind of day. I did a lot and rested a little. Today I’m supposed to meet a former coworker who is starting their own company, and they want to get my opinion on a software program they’re designing. I’m going to take a rain-check on that. I really need to get back to center. Take a break. Get some more sleep. I think I got about 8 hours last night, but I’m still feeling wiped out. Still dizzy. Last week was a huge week for me. And this coming week is not going to be small, either, what with the finalization of my new job coming through. (Oh yes – I accepted the position, in case I hadn’t mentioned it.) And then I need to give notice to people who are really depending on me being THE ONE to handle certain key responsibilities through the end of the year.

Not gonna happen for them.

They really should have planned and prepared better. But that falls into the category of “not my problem”.

Onward.

Thorough TBI Recovery – One complete experience at a time

Soak it all in — all over again

So, I’ve been thinking about TBI recovery a good deal, lately. I go in fits and spurts — I’ll go for months, not wanting to think at all about TBI recovery, then I’ll go for months thinking almost exclusively about it.

Now I’m back to thinking about it, and I’ve reached a somewhat different conclusion about what makes for a good recovery, than I had in the past. Just so you know, I speak from my own experience, but what I’ve found could just as easily apply to others, so use what you can, and ditch the rest as needed.

Basically, I’m now of the opinion that recovery from brain injury is very similar to growing up all over again. When we are infants, our brains are undeveloped in terms of physical and social and emotional ability, and we spend the next several decades working on those abilities. Some of us continue to learn and grow, continuing the learning process well into advanced age.

Some of us decide that once we’ve “got it down”, we don’t need to learn anything else, and we prepare to retire, hit the golf links or bocci ball turf or shuffleboard alleys. I think that given the prevailing culture, which has long told us that once you get to “a certain age”, your brain just doesn’t learn new things as well anymore (that old dog new tricks line), a lot of us automatically mentally head for the retirement home, at a certain point in life. A lot of actually start moving in that direction early on.

Those folks are often the ones who believe that you have what smarts you have, and you don’t ever develop any more. These folks have a “fixed” mindset. Versus the folks who believe that nothing is set in stone, and we’re always learning and developing new skills and abilities. These folks have a “growth” mindset. Carol Dweck talks about this in her book Mindset, which I haven’t read yet, but I hope to within a few months (maybe weeks).

Experiencing a brain injury is a bit like growing up all over again. It’s like going from an adult to a child, in some ways, where you have to re-learn all sorts of things that you used to know “cold”. For people who aren’t oriented towards growth and change, this can be devastating. It’s also problematic that brain injury can blind you to alternatives and options and keep you in a very limited frame of mind that is addicted to things being “fixed” and set and stable.

The problem with needing things to be “fixed” and set and stable, is that it just doesn’t happen that often. And when it does happen, it doesn’t last. So, you have to keep adjusting and adapting… whether you like it or not.

If you want to get back to being and functioning like an adult, you have to do that. There’s no other option — you’ve got a renovated brain, so use it or lose it.

I’ve come up with a new idea for how I can “use it” and make my TBI recovery more complete. Now that I am able to read books again (I read half a book on the plane while I was traveling for business), I find that I am also able to write again. I used to love to write stories — short stories, even full-length novels. Looking back, they were not very good, and the benefit was really more for me than anyone else. But they benefited me a great deal. In fact, I think that writing really helped me recover through a number of TBIs in the course of my life. It soothed me, and I also believe it developed my brain to see the world in wider ways.

It also opened me up to the idea of having new experiences and seeing them as “fodder” for my muse. I was able to have a whole lot of experiences that would have normally thrown me off, if I had not looked at them as “material” for my writing later on. I stayed open to experience, because I believed my purpose in life was to have those experiences and then write about them later.

Ultimately, I didn’t become the published author I always longed to be. But I did develop a practice that let me make sense of my world in ways that were meaningful to me. And I did develop tolerance for difficulty and frustration. Because, well, that was just part of life, and if I was going to be a good writer, I needed to be exposed to as much of life as I could be.

Now I see that my writing really helped me create positive neural connections, over the years. And the fact that I could not read or write for close to 10 years, really explains why my mind became so fixed, so narrow, so brittle. I wasn’t exercising my “mental muscles” and I was losing what I was not using.

I’m ready for that to change, now. I’ve been writing about my experiences on this blog since 2007, and now I can expand what I write about to include more than what’s in my head. Adding what’s outside of my head, what’s right in front of me, what I am experiencing in my senses, with the same excitement and joy I felt when I was much younger… these are things I believe will help me recover even more.  I miss it, in fact. So, why not start again?

I’m on good footing, right now. For now, anyway. And I’d like to bump up my progress just a little bit more — with complete experiences of all my senses, keeping my whole person engaged — body, mind, spirit, heart — in this thing we call life.

This seems a positive way forward. So, onward.

TBI – Background music for all I do

So, life is treating me well, these days. I have so much going on, it’s crazy, but at the same time, I don’t. I have so much to do, and so much to accomplish. But at the same time, all this activity is only related to a handful of “primary purposes”  — my job, a side project, and my general health.

Each of these has a ton of details associated with them, and I have a tendency to get “lost in the weeds” — getting swamped by details, and getting down on myself, and losing time and energy to my head-case dramas. But then I take some time away, reset, and come back at things with renewed energy, and everything feels better. Not only that, but I’m functioning better, as well.

The thing I can’t lose sight of is the TBI issues that are the “background music” for my life. Much as I would like to forget about it, the problems that come up because of fatigue, confusion, losing sight of the big picture, and getting distracted by a hundred different passing things, are all things I have to keep in mind and actively manage. It does me no good to push and push and push for weeks on end, then crash at a critical point and lose ground. I need to move forward steadily, giving myself plenty of intervals to rest and reset.

I look around me at all the people who seem to be able to go and go and go without tiring, and I feel like I’ve been left behind. I have to spend so much time recovering from my days and weeks, that when everyone else is out and about, connecting and networking and “making the scene,” I am at home, keeping under the radar and out of sight, with limited exposure to anything but dinner, my spouse, and a handful of pre-recorded television shows.

I do work a lot, and some nights I’ll work late. But that is a rare occurrence. And I usually pay for it, for weeks after. I’m still paying for a couple of late nights I pulled last week. The fatigue doesn’t hit me right away. It usually takes a week to get to me. But then it hits me hard, and I cannot make it through the day without a couple of naps.

Crazy. And crazy-making. How I would love to be able to push through like everyone else around me, and keep up that wild pace.

Then again, I look at the people who are keeping up that crazy pace, and I have to ask if their lives are really that much better than mine. Sure, some of them are wildly rich and successful, but are they really happy and do they actually feel connected with what they are doing? I’m not sure they are. If they are, then that’s great and I’m happy for them. But I have to wonder if they’re satisfied with what they’ve got. I wonder if it’s enough.

I don’t want to get into a “sour grapes” mindset here. People have the lives they have. They have the lives they make. I have found what works for me, and what doesn’t. Comparing myself to others who seem to have more, doesn’t help me. It just holds me back and makes me feel badly about what I have. It also makes me question my own direction, which is not helpful.

I need to stay steady with my own direction, and always remember the context I am working in — susceptible to fatigue — which leads to light- and touch- and noise-sensitivities — which leads to even distractability — which leads to irritability and flurries of unproductive energy — which drains me — which leads to me feeling like crap and having a bad attitude — which adds to my stress and fatigue — which makes me want to drop everything and toss it aside and go back to something easier and less stressful.

I’ve been through that cycle countless times in my life — countless. It’s the hallmark of my existence, really, leading me to end up nearly 50 years of age without anything near the level of accomplishment I could have, feeling like I’m so far behind others my own age (and younger). If nothing else, it sharpens my resolve to pick myself up and get back in the game, whenever I stumble or fall. That regret, that embarrassment… it’s great impetus to really do something useful with my life.

Most of all, it’s great impetus to actively manage my issues with fatigue and all my sensory issues. It’s great impetus to keep eating right and getting enough good sleep, to actively manage my issues and keep myself honest through it all.

I spent the other day pretty much like a zombie. Dead-tired and zoned-out and not good for much… just reading the news and walking around the office and avoiding answering my emails before and after work. A lot of good that’s doing me and my plans. I took some naps, and I quit eating junk. I’m getting better now. And I know I can do even better than that.

So, I am. It’s a new day. I have a weekend ahead of me when I can really kick it with one of my projects. Things are happening that are just fantastic, and I need to remember that.

It’s all looking up — and when I keep my head on straight and manage and stay honest and true, good things get even better.

Onward.