I’m supposed to be shopping, right now. I intended to get up early and head out to a local department store to pick up the last of the gifts I’m giving. Then I was coming back to deal with one of the cars having a nearly-flat tire. Then I was going to run some last-minute errands, followed by a nap, followed by gift wrapping, followed by making the Christmas turkey, followed by preparing the trimmings, followed by more gift wrapping… and then finally supper.
It sounds like a lot, only because I have it all broken into different pieces. But breaking things up into different pieces and then scheduling each one in its own time slot actually makes it much easier to take care of everything.
Because it’s all got to get done. It’s not like it’s optional. The gifts need to get wrapped, and the food needs to get cooked. The car needs to have sufficient air in the tires, and I have to have my nap. It will all get done… so long as I keep my cool.
Yesterday, I talked about how I need to keep my cool around my spouse when tensions get high. And it’s true. As much because of their cognitive issues, as mine. Last night, I was feeling really rushed, and I was having a lot of trouble keeping my thoughts straight. I have not been good about keeping on my sleeping schedule. My spouse has been especially needy/demanding, this year, and they have also been having more trouble thinking things through, which makes them more emotional and more volatile.
So, to calm them down, I have been staying up later in the evening, watching television, and adapting more to their schedule, as well as their eating habits (I’ve been eating a lot more bread than I should, which is messing me up, because my body can’t handle the gluten/wheat as well as it used to). It’s great for them, but it’s terrible for me. And it wears on me, after a while.
I was feeling really pressured, and I said something that my spouse took the wrong way. They took a lot of things the wrong way, yesterday, for some reason. They’re feeling depressed and isolated and not that great, physically, so that’s an added stresser for them. And they take things the wrong way, getting all riled about things I say and do, which I’m trying really hard to not do wrong.
So, painful awkwardness ensued, and it took most of the evening for things to even out again.
Man, oh man, I cannot wait for Christmas to just be over.
Well, anyway… I’ve got a week and a half of time off ahead of me (oh, except for a few hours I need to work, next week, to balance out my vacation/work schedule). And I need to be especially protective of myself, my time, and my energy, while I’m home. We have a number of scheduled activities we have to go to — doctors and social gatherings and errands to be run — so I need to keep balanced, and keep my system in good shape.
That means exercising as usual, each morning. That means being smarter about what I eat and drink (making sure I drink enough water). That means being firm about the times when I got to sleep, and not being pressured to shift my schedule later, just because I’ve had a nap.
I felt sick all during the Thanksgiving holiday, because I wasn’t keeping on my sleeping schedule. And I don’t want to do that all over again. I’m feeling a little sick, right now, actually. I just have to get everything done. And then do it.
Could be, I have to call AAA to add air to that tire, since it might not be safe to drive on it. But I can easily do that while I’m taking care of everything else at home. I just call them, and they come. Or I may need to change the tire, period. Either way… as soon as I get back from my department store trip, I’ll have the rest of the day to sort everything out. So, onward and upward. I can do this.
I just need to be diligent about it, act like the adult I am, and keep my eyes on the prize — a wonderful week off, when I get to relax and actually do some of the things I never get to do, otherwise, while I have more than one hour of uninterrupted time to focus and concentrate.
Luxury. Pure luxury.
Okay, enough mooning about this. Time to get a move on and get this show on the road. I’m nearly there… I’m nearly there…
The holidays can be tough for anyone who’s got extra difficulties, due to chronic illness. And with TBI / concussion, sometimes the worst thing is being around people who don’t understand what it’s like to have your life turned upside-down by a “mild” blow to the head.
As I’ve said many times, there’s nothing “mild” about a concussion or a traumatic brain injury. That momentary alteration of consciousness means that something “in there” got injured. And no amount of positive thinking or motivation or … consequences… is going to change the functional ability, unless you have adequate time to recover and rebuild your wiring.
You have to keep the stress down, to do that effectively. It takes time and practice and sometimes a bit of luck, to rebuild what you once had. And being pushed and prodded by people who don’t understand TBI or “get” why concussion can turn your life upside-down, doesn’t help with that.
The holidays can be stressful, to begin with. Then you add all the people, the expectations, the increased pace (a lot of us are racing to finish year-end goals at work, at the same time we’re shopping and figuring out holiday party logistics), and money pressures… and it just gets worse. Cognitive reserves that were already in short supply, get even less… and meanwhile, everybody expects you to KEEP UP! KEEP UP! WHAT’S THE HOLD-UP?!
Some of my own challenges have been:
Remembering what I’m supposed to do at work. I’ve forgotten a bunch of stuff I was supposed to do – and I even forget to write it down.
Dealing with depression. It comes and goes with me. This year, it seems to be coming more than it’s going.
Keeping cool with my spouse, when tensions get high.
Staying on my exercise routine.
Eating sensibly, and not “stuffing my face” with all kinds of candies and cookies. I’ve done well in terms of candy, because I can’t have chocolate (sets off migraines with me), but I’ve eaten more bread and cookies than I should.
Getting enough rest, and keeping on my regular sleep schedule. A tired brain is an irritable brain, and boy, do I get irritable when I get tired. I’ve had a hard time keeping on my sleep schedule, these past weeks, and I really have to concentrate on getting that sorted out when I’m off work next week.
Not pushing myself too hard. It’s easy for me to push. I know how to do that. But while it used to work okay when I was in my 30s, now that I’m past 50, it’s just not the same. I need to remember where I am… and act accordingly.
Basically, keeping myself together during the holidays is like an extra part-time job. It helps that I haven’t spent a lot of time socializing with friends and family. That takes the pressure off. But for many, many other people, they don’t have that option. And my heart goes out to them.
Still and all, it will be over soon enough. Just a few more days till Christmas, then another week till New Years (which isn’t much of a holiday for me, anyway). Then I can get back to my regular life.
This holiday season has been quite different from past years. Both of us were too sick to travel for Thanksgiving, so we stayed home and ate turkey in the peace and quiet of our own company. It was nice. No yelling, no screaming, no wild flurries of activity and trying like crazy to catch up with family members we haven’t seen in a few years.
There really wasn’t enough time to do everything — and my side of the family has a bad habit of trying to cram everything into a few days, which is exhausting and disorienting and sets us both up for a whole world of hurt, when we travel on to the rest of the family.
We were also a lot shorter on energy, this year, than we’ve been in the past. My spouse’s mobility issues — severe pain and limited range of motion — make it next to impossible to get around easily, and the impatience of others doesn’t help. It’s not a total disability, but it’s a significant limitation, which others cannot seem to understand. My spouse looks and acts perfectly normal when sitting down and chatting, or talking on the phone. They’re not obviously cognitively impaired. So, somehow that gets into people’s minds that they’re really not that bad off.
And that’s a problem, in itself. Because then people expect unrealistic things of you, and they don’t treat you very well, when you just can’t keep up with the frenetic pace.
Anyway, that’s only half of the problems we avoided by staying home and keeping to ourselves, this year. The other half, is my anger, fatigue, frustration, and bad behavior issues, which have been flaring up, now and then. I seem to have a shorter fuse, this year, than in the past. I think it’s really due to my work situation, which is mighty “dynamic”, these days. There are layoffs pending in the not-so-distant future. And while I feel pretty confident about my own situation — not only am I getting along with my new colleagues better than just about anybody I know, but I’m also feeling really strong about my professional prospects.
I’ve come such a long way, in the past 10 years. It’s pretty amazing. 10 years ago, I was pretty much of a train wreck — spending money left and right, completely out of control with my behavior, my anger, my self-management.
And I had no idea why it was — or that it had anything to do with TBI.
Now I know better. And now I’m doing better.
It’s just other people’s “stuff” I need to deal with. There are a lot of worried, anxious people, and that makes them difficult to handle.
But for myself, my prospects are looking good, so I’m not worrying about it. Main thing, is taking care of myself, doing the best I can, and not letting the world around me bring me down.
So, I’m finally getting into the holidays. Dealing with them as they come… and getting my shopping and decorating done, a little bit at a time. It’s taking a few weeks longer, than in past years, but I’m not worrying about it. At least it’s happening. And the way I’m doing it all — measured and gradual and not stressing about it — really makes sense for where I and my spouse are at, right now. This time is one for me to be reflective and slow down, not get caught up in everybody else’s dramas. They can go on without me. I’m fine where I am.
Just by total chance, a week or so ago, I found myself talking to someone who had a stroke in 2007. Unless they’d mentioned it, I never would have noticed. They’d had four months of recovery, then they got back into their life. And while we didn’t talk that long about it, I got the impression that they hadn’t gotten any help with really understanding their situation after their stroke.
When they ran into their neurologist at the hospital, a few months later, they got a tip about how certain things they were doing were just not very helpful at all. Things like beating themselves up, because they weren’t doing a good job at something… things like getting angry and upset about stuff going wrong in ways that were directly related to their stroke… The neurologist gave them some insight into what was happening with them, and a better way to deal with it.
It was good that they chanced upon their neuro. It’s just too bad they didn’t get that insight sooner, so they could relieve some of their suffering — maybe even prevent it.
But they were amazed that I’d been able to find help with my own brain injury. They asked a number of questions about how I recovered, how I got myself back, how I retrained myself in certain ways. They seemed downright amazed, that my path for the last 8 years had even happened.
And it left me both happy and grateful that I found this path… and sad and frustrated that they hadn’t — that thousands upon thousands… maybe even millions upon millions of people hadn’t.
Here’s the thing that gets me about brain injury recovery — there is so much that’s known, there are so many tips and resources and a wealth of information available about what happens to the personality when the brain is injured. But there doesn’t seem to be any uniform or standard way of communicating that to people. And so, we suffer. We really, really suffer. And it’s not just the brain-injured folks who suffer — everyone around us, especially our loved ones and those who are a regular part of our lives, joins us on the big proverbial float in our Pain Parade.
It’s actually pretty bizarre, if you think about it. TBI happens 1.7 million times a year in this country, alone. Actually, according to the CDC,
So, the 1.7 million number (which has been used for years, now) actually looks low. Add to that the numbers for stroke (nearly 800,000 Americans have a stroke each year, and 130,000 of them die from it), and other kinds of acquired brain injury (anoxic, for example, from losing oxygen to your brain), and you’ve got in the neighborhood of 3+ million Americans who have experienced a brain injury.
That’s just in this country. And that’s not counting all their family members, co-workers, community, and extended social connections.
Brain injury is a thing. It’s a big thing. And yet, somehow, we can’t figure out to tell people who’ve just had a brain injury, what’s happened to them, what they might experience as a result, and how they can take steps to recover?
This makes no sense.
And it makes me angry. Because a lot of people are suffering needlessly. Really, really needlessly. Just having the most basic information about brain injury helps so much. Finding out what happens during concussion or stroke — and then things to NOT DO (which medical professionals know about)… as well as WHAT TO DO — many of those things are simple and straightforward, and they all help a person make sense of their situation and chart a path forward.
Maybe it’s professional caution. Doctors don’t always know what to expect, and in any case, every brain injury is different, so every type of recovery is going to be a little different. Or maybe it’s lack of time. Or maybe it’s because doctors delegate education and training to rehab and therapy folks, who presumedly have a more extended working relationship with brain injury survivors. Maybe they want to limit their liability, in case their promises don’t come true.
Regardless of why that is, the fact remains, there’s a huge, gaping hole in the support of brain injury survivors — TBI, stroke, ABI, you name it — that seems only to be filled by people in the business of doing so. And from where I’m sitting, that’s a huge problem, because the profit motive becomes the most important thing. First and foremost, if you have to make money to survive, you’re going to focus on making money. And then you end up making a lot of choices that you wouldn’t necessary make (or have to make) otherwise.
So, the care you provide is necessarily compromised.
And the slippery slide begins… and continues.
Where does that leave the survivors? Or the people around them who struggle to understand what’s happening? Where does that leave the wider community who has lost the full participation of someone who is important to others, in large or small ways?
It leaves us nowhere. In no-mans-land. In limbo. Uncertain. Without a clue. And eventually, without hope.
A lot of lives are irreparably trashed, because of lack of support — even the most basic explanation of what’s happening… simply because someone couldn’t figure out how to explain a brain injury to the survivor, as well as to their immediate circle of family and friends.
How ironic, that advertisers can figure out how to explain and sell the most inane crap to just about anybody with a pulse, but nobody can figure out how to explain something as important as the logistics of brain injury to the people who desperately need to know.
I just had to reset my Twitter account. I forgot my password, and I did that thing where you have them text you a 6-digit pin so you can reset your password.
I got the text on my phone, which was in another room, charging. And just to see if I could do it, I looked at the 6 digits and tried to commit them to memory. Then I walked in the room where my computer is, and I was able to put in the digits with no problem. 880-765. Just so.
Woot! That is so amazing. It might not seem like much, but seriously, this is a big deal for me. Not only does it mean I don’t have to be slowed down by having to write down (relatively) short strings of digits, but it also restores a part of myself that I was always really proud of — being able to remember strings of numbers.
I can also remember the 16-digit number of the credit card I use most frequently (no, I won’t be sharing it here). I can remember the security code, as well as the expiration date. The numbers all have a recognizable pattern to them — certain repetitions of sequences of numbers that I only recently recognized. Years ago, I would have noticed those sequences and repetitions of patterns right away, but I’ve been using this credit card for quite some time, and it only recently occurred to me that I was looking at a string of numbers that’s actually pretty easy to remember. So, that’s huge progress for me — not only the remembering, but also being able to see the bigger picture of the overall pattern of the entire number.
Back in the day, just a few years ago, I would have been unable to remember 6 digits in a row. I couldn’t even remember 4 digits. Anything more than 2 or 3 was a stretch for me. It was a big loss for me. Even though it seems like a little thing, not being able to remember more than 2 or 3 numbers — in today’s PIN-driven world — puts a big crimp in your ability to just live your life. It’s a problem. Everywhere.
For work, when I login remotely, I have to put a PIN into the login screen, and that used to not be a problem. Once upon a time, I could glance at an 8-digit PIN and punch it into the computer with no problems. Then I hit my head in 2004, and that stopped working. It was a real problem, because I was working on highly secure systems, and a PIN was required every time I logged on in the morning. I used to get so flustered about not being able to remember the digits, but needing to write them down and then punch them in, one at a time. I also had to really take my time, because I would literally forget what numbers I’d just put in, 2 digits ago. I got so upset. I used to be able to remember 8+ digits at a time. But that went away when I fell in 2004.
I’m still working on remembering my digits. I’m still working on my memory, period. And my progress has been “uneven” to say the least. Every now and then, though, I get a clear view of how I’m improving. And it’s not just some flash-in-the-pan exception, but something I can do over and over.
Like remembering my credit card number – all 16 digits, along with security code and expiration date.
Like remembering a unique 6-digit PIN that I’ve never seen before.
Like remembering to do things (and buy things at the store) that I would normally completely forget.
It’s a process, to be sure. It takes time. It takes practice. But all the hard work is paying off in a very big way.
And that makes me very, very happy. Just gleeful, in fact.
I’ve been thinking a lot about this holiday season – and all the ways that it’s associated with light. Most of the “big” traditions I know about feature light of some kind, and no wonder — this time of year is when the days become longer, and we literally can celebrate the return of the light. It’s a physiological thing, as well as a psychological and spiritual thing. And it’s well worth celebrating.
I celebrated yesterday by walking deeper in the woods than I have in a long time. Once upon a time, when I first moved to this place, I was out in the woods for most of my waking hours every weekend, rain or shine, good weather or bad. I guess I’ve always been drawn to the forest — it was the one place I felt at home when I was a kid, and there’s something really calming about being in the woods. When I was younger, I wanted to be a forest ranger, until my guidance counselor talked me out of it because it wasn’t “practical”.
Anyway, now I get to be my own forest ranger, and I don’t have to worry about government funding cutting me off from my livelihood, so it’s not all bad, the way it turned out. And yesterday I got a good reminder of the things that matter most to me in my life — clean air, fresh water, room to roam, and friendly, like-minded people also sharing the paths.
And I couldn’t help but think about how — for years after my concussion/TBI in 2004 — I couldn’t go into the woods. I just couldn’t. There was too much stimuli there for me. It was either too bright or too dark, or it was too quiet or it was too loud. I got tired so quickly, and when I did, I got confused and anxious. And the idea of interacting with anyone I came across on the paths, was out of the question. I panicked anytime I had to interact with someone who was out for a nice quiet hike like myself. I also got turned around and lost very easily, and since I have never had the best sense of direction to begin with, I would spend hours just trying to find my way back to where I wanted to go. I told myself I was “exploring” but the fact was, I was getting lost and had to keep walking to find my way back.
And half the time, I couldn’t remember where I’d come from. Even reading maps was impossible for me. Especially reading maps.
So, I quit going into the woods. I gave up my forest. And things were very dark and dreary for a number of years. The crazy part was, I told myself it was by choice, not something I was stuck doing, because I was so trapped in anxiety and sensory overwhelm.
What changed it? I think just living my life. Working with my neuropsychologist to just talk through my daily experience. Also, doing my breathing exercises — and exercising, period. And practicing, practicing, practicing some more at the things I wanted to do, until I could do them pretty close to how I wanted to. And learning to not be so hard on myself for being different now than I was before.
I also really paid attention to the times when I saw signs of more functionality — like when I started going on hikes again, after years away from them. Like when I was able to read an entire book, after years of only being able to read short papers — and not understand much of them at all. Like when I gave things my best shot, and found them turning out pretty darned close to how I intended — sometimes even better.
Taking the edge off my anxiety, giving myself a break, focusing on things that were bigger and more significant than my own petty concerns… those helped. Those brought light to my life.
And it continues to get better.
When I think back on how I was, just five years ago, it amazes me. I was so trapped in a dark place, confused and not knowing what was wrong with me. I didn’t understand what was holding me back, I didn’t understand what was stopping me from just living my life. I didn’t understand how confused I was or what I was confused about. I couldn’t discern the different issues I had, because it was all just a dark blob of problems that pulsed like a nebula of hurt and pain and confusion. When I think about how things are now — with so much light and so much more possibility… it amazes me.
There are answers out there, if we look… if we know to ask. There are solutions out there, if we take the time to be clear about what the issues truly are. There is hope out there, when we are willing to take a chance, have some courage, and move on — move on.
As the days lengthen and we roll towards the spring (I know, winter is just now beginning, officially)… as we take this holiday season to step away from the everyday grind and do something different with ourselves… as we try to imagine what else is out there for us… let’s all remember that as dark as it gets sometimes, the night does pass. There is always dawn and a new day, just around the corner.
I had my doctor’s appointment the other morning, and it went pretty well. I got some antibiotics for the infection that has been bothering my ears and making it hard for me to keep my balance, and I gave my doctor the holiday card my spouse told me I needed to give to them. It was a good call – and I picked out a good card, because it really touched my doctor a lot. They didn’t want to let on, but I could see it meant something. I mean, if you think about it, doctors spend their lives trying to help others. They have their limitations, like all of us, but in the end, their whole reason for doing what they do is to help people.
I have been taking my meds for the past few days, but I’m still having balance issues. I’m going to keep on doing it, and hope for the best. I really don’t want to go back, though. It’s just more opportunity to get put on more meds — which my doctor tried to do, when I told them about the balance issues. They tried to put me on meclozine / antivert, thinking that would fix what was wrong with me, but I told them no, because that stuff just makes me feel rotten and weird and dense, and it doesn’t do a thing for my vertigo. It’s supposed to fix the nausea thing and supposedly make me feel less dizzy, but it’s an antihistamine and the side effects whack me out.
Drowsiness and tiredness and that weird spacey feeling that antihistamines give me, is just not worth it. So, I told them not to prescribe it. Even if they had, I wouldn’t take that stuff. Like I need more crap in my system…Anyway, I can always take Dramamine if it comes to that. I’ve taken it for seasickness and it seemed to help me. At the same time, it still make me feel weird and “off” and the fishing trip I was on was a lot less fun because of it.
Anyway, I had been planning on “having the talk” with my doctor about not being a risk-taker, just having a hard time sorting through the myriad little “issues” I have on a daily basis. For any doctor who is reading this, please take note: TBI can introduce a whole host of physical issues, from noise sensitivity to light sensitivity to touch sensitivity to pain to ringing in the ears… a whole host of physical issues that can cloud the overall picture of one’s health. And that’s not even the mental health issues, like depression and anxiety, which can make everything seem 1000x worse than it really is… or it can make everything seem like it’s nothing at all. This obviously has implications for patients with TBI being able to accurately self-assess their level of well-being. And it’s helpful to address that aspect of our experience.
The only problem is — and I realized this when I was driving to my dr. appointment and was thinking about the best way to broach the subject. I thought about how I would approach it, how I would introduce the topic of my not being a risk-taker, but just a person who struggles with sorting through all the stimuli of each day… and I considered (based on past experience) what my doctor’s response would be.
I’m glad I did think it through, too, because it gradually dawned on me that if I talked about my issues the way I was, my doctor would try to prescribe me something. Or prescribe tests. Or try to DO something, instead of just understanding and thinking things through and letting that inform their approach with me. They tend to jump right into action! as though that will solve anything right off the bat. Sometimes it does. But in some cases, you don’t need a procedure, you need comprehension and understanding and a slightly different way of approaching things.
Knowing what I know about my doctor, after seeing them for a number of years, I really think that if I’d “had the talk” about my issues, I might have ended up fending off a slew of prescriptions and tests — they’ve already tried to get me CT-scanned and/or X-rayed over sinus issues. I mean, I’m sure they mean well, but I am notexposing myself to a bunch of radiation over a sinus infection. Seriously… It’s just not going to happen. Not unless I am in serious danger.
Likewise, I’m not going to raise a red flag that my doctor is going to treat like an invitation to charge. They’ve got a bit of a fight-flight predisposition, and the last thing I want is to have to try to explain and fend off their headlong charges and attacks against what might be vexing me, when all I really want is for them to temper their responses with a little more knowledge. I can easily see them ordering a bunch of tests and prescribing a bunch of meds, in the interest of helping me… and all the while, I just get sucked into the medical system with more crap on my chart to fuel the standard-issue medical responses that pathologize and (over)medicate my condition… when all I really need is some understanding and consideration. All I really need is for people to slow down… but knowing my doctor, that’s not going to happen anytime soon. At least not with them.
So, I didn’t have “the talk” with my doctor, and I’m a little disappointed in myself. At the same time, though, I’m glad I thought it through carefully ahead of time. In a way, I feel like I may have dodged a bullet from a weapon that I had trained at myself. I unloaded the weapon and put it down, and now I’m feeling a bit better. What I really need to do is speak up, in the course of conversations, when I feel that things are going too fast or my doctor says something that doesn’t sit right with me. Sometimes I can speak up and defend myself quickly, other times I can’t. I’m working on that. The times when I don’t speak up, I feel terrible afterwards, so that’s more impetus for me to practice speaking up.
That was something I did do on Friday — I spoke up about the meds and the tests and the assumptions my doc was making. They seemed a little peeved that I was questioning their judgment, but you know what? It’s my body, it’s my life, and I need to do what I need to do. Provided, of course, I’m not putting myself in danger.
Anyway, that’s one example of things not working out as planned, and it being okay.
Another example is last night, when I decided to go to bed early, then I got caught up in going on Facebook “one last time”. I swear, that thing is a massive time-sink, and I have to be careful. By the time I got to bed, it was over an hour later, which just sucks. Oh, well. I’ll just have to nap today. I had planned on doing some last-minute Christmas shopping, but the other thing that’s happening is that we have company from the party last night. Rather than driving home, we had someone stay over, which is fine. But now I need to be social and hang out, instead of running out to the mall. That’s annoying to me. But come to think of it, I actually knew that we might have company staying over, so I’m not sure why I was thinking that I was going to run out, first thing this morning, and take care of that. More annoyance — this time with myself.
Oh well — tomorrow is another day, and I can probably get all my shopping done early in the morning before the crowds hit the mall. I pretty much know what I want, and there’s not much of it, so it will keep things simple. Plus, having less time to spend on it really focuses me. Even if that doesn’t happen, and I get stuck in the crowds, and the lines are long, and I get trapped in the holiday crush, I can always check Facebook while I’m standing on line.
So, yeah – plans. I have them. We all have them. And when they don’t go the way we expect them to, then it’s up to us to decide how we’re going to handle them. I can get worked up and bent out of shape. Or I can roll with it and come up with another course of action. I can get annoyed at this, that, and the other thing, or I can just let it all go and see what happens. When I’m tired (like I am today), I am less able to just let it all go. When I am stressed (like I am over my job, even though I am off on vacation for a week and a half – the residual stress is ridiculous), it’s harder for me to just BE.
I’ve noticed an increasing level of intensity with me – I’m starting to lose my temper again (though inside my head, not out in the world around me so much). I’m starting to react really strongly to little things… like I used to, before I started exercising regularly and doing my breathing exercises. I’m noticing a change, and I’m not liking it much — especially the parts where I’m not rolling with changes as well as I would like to. Things are starting to sneak up on me again.
So, it’s back to using the tools I was working with before. Despite my good progress, I had gotten away from the exercise and the breathing for a while, in part because I just got so uptight over doing it each and every day like clockwork, and also because I just needed to let it all sink in for a while. I was working really hard on my technique and also my regular practice, and it got to be just another chore that didn’t have much sense to it. I just hit an impasse with it — maybe I had too many ideas and my head was spinning, maybe I had too much experience that I needed to just get used to… in any case, I needed a break.
So, I took a break. And I must admit it was a pretty big relief to not “have” to do the sitting and breathing every morning. All of a sudden, I had extra time, and ironically, I felt like I could breathe. I was still doing intermittent breathing throughout the day, when I felt my stress level increasing, but I didn’t have a daily practice.
Still, I do feel like I need to get back to a bit of that again. I’ve had my break. Now I need to try it again to see how it helps me… pick up where I need to — maybe where I left off, or maybe somewhere else… Just do what I need to do to get myself back on track and take the edge off this intensity, which has been building and is starting to drag me down.
Things change. Plans change. What we think we can do is often very different from what we can do, which is also different from what we DO do. Life has a way of changing directions on us when we least expect it, and the only constant is change. So, I need to work on my flexibility and chill-ness, so I don’t end up ship-wrecked over every little thing. Yeah… I need to work on that. And so I shall.
My walk in the wood yesterday has reminded my body that it is out of practice going on hikes. I am really sore – in pain – and I feel cold today.
Time to get moving. I was up early this morning, feeling energized and like I had a mission in life. It was good. The forgiveness I offered myself yesterday seems to have lightened my load. And now I’m rarin’ to go. I just need to make sure I don’t over-extend myself, as I often do, when I have a burst of energy. I need to be intelligent about this. Smart. Practice my zazen, and chill out my autonomic nervous system.
I spent a little time sitting this morning. Sitting and breathing. Getting my heart rate down. It was racing since I first got up. I’m better now, having done some reading and research online, after doing my morning exercises. I really do feel good, mentally and emotionally. So good, I didn’t notice the soreness or the cold till now.
There’s only one thing to do — a couple of things, actually. Get moving. When I am stationary for a long time, I get stiff and sore and cold. If I am up and about, I loosen up, and I warm up. I realize that I’m being stationary here while I’m writing this, but I did just get up to make myself a cup of hot tea and get some fruit to eat. So, I’m not completely ignoring my physical needs. I’m just postponing them..
First, I have to have a little more to eat and drink. Then I can go out for another walk. Not a really long hike, like before, but a walk down the road and back, just enough to stir the blood and get me out of my head.
And then I can take another nap later.
I have to make sure I don’t get side-tracked, though. I have things I need to do to get ready for this coming week, and the better job I do today, the easier it will be on me tomorrow. I have been having a lot of trouble with Mondays, getting swamped because I’m tired and I haven’t planned properly for my week. Then I get caught up in all sorts of drama on Tuesdays and Wednesdays, and by Thursdays I’m wiped out. That’s no good. I need to be fully functional on Mondays, and not get burned out before Wendesday is even finished.
God, my hands are cold. The feeling doesn’t bother me, but not being able to move my fingers well enough to type, does bother me. About ten years ago, I suddenly stopped being sensitive to the cold. Before that, I was a total wuss when it came to the cold — if I wasn’t warm, I didn’t feel like I could ever get warm. Then, all of a sudden, one day I was shoveling my driveway, and I realized — Hey, I’m not cold anymore. Took off my hat and gloves, and felt fine. Felt great, actually.
Ever since then, cold weather has not really freaked me out like it once did. But now I get into the situation where I can get too cold and my body can stop cooperating with me, because it’s … cold.
Funny — I thought people were supposed to get MORE sensitive to cold, as they age. I seem to be going in the opposite direction. I’ll give it time. Who knows what will happen in another 20 years?
Oh, well. At least I’m aware of it. I’m not running around all paranoid about being defective — I’m just different than I used to be. And it’s not like I’m damaged or anything. I just have a different sensitivity to cold than I used to. And I need to check in, every now and then, to make sure my hands and feet are still moving well. So I don’t stand up and find myself on my face. Or I can keep typing.
Or better yet, stop typing (for now). I’ve said all I need to say for now, and it’s time to DO something about it.
I’ve got a big trip coming up next weekend — I’m taking nearly a week to go see family in several states… kind of a follow-up trip to make up for not having been there for the holidays (I was sick and couldn’t travel). There will be lots of driving, lots of activity, lots of interacting with relatives I haven’t seen in many years. There will be a family reunion with relatives, some of whom care about me, others of whom couldn’t care less about me. There will be time with siblings as well as aunts and uncles and cousins. All together in one big melting pot for the weekend.
This is coming on top of some very busy times at work. I’m a bit apprehensive, because I’ve been tired and I’ve had trouble sleeping, and I am concerned that it might affect my ability to deal with my family. I also worry that it will affect my ability to deal with my spouse, who is not a big fan of most of my family. We come from very different backgrounds, and my spouse is not always the most open-minded individual when it comes to differences.
I know I shouldn’t stress over this, but I am a little bit. I have to get a bunch of things done for work before I go — it’s really BAD timing, but there it is. My workload is just crazy, these days, and it will be until mid-September. Then it will probably pick up again through the end of the year. It’s hard to believe July is almost over. August is so packed, it might as well not even exist. Just busy, busy, busy all around.
But it’s a good thing. It beats the alternative. I’ve become a key contributor on some important initiatives, so that keeps me going and it gives me a sense of belonging to something bigger than myself. And I have to keep that in mind. It’s another way of looking at it — it’s a good thing, that going away for a few days is a problem. Because if it weren’t I’d be in trouble.
Likewise, if I think about the upcoming trip with my relatives, one of the reasons it promises to be so full, is that so many people want to see me. They want to talk to me, to find out how I’m doing, to tell me about their lives. They want to share a lot with me, and they don’t realize how overwhelming it can be for me. Over-stimulation has resulted in me going temporarily deaf and blind — I was with extended family members who were very high-strung, and there was so much going on, my system just shut down, and for a short time (maybe 10-15 seconds), I couldn’t see or hear anything. Everything just went silent and black. I came back (of course) and felt dazed and confused. I suspected it might have been some sort of seizure, but then I got checked out, and everything seemed to be fine, actually. So, it was probably just the overwhelm.
Thinking back on that day, which was about six months before I figured out the TBI connections to the difficulties I’ve had in my life, I can think of a number of things that made it more difficult, overstimulating and overwhelming:
I was extremely anxious about a lot of things — if I was wearing the right sorts of clothing (people around me were much better dressed than I, and I felt self-conscious in my jeans and t-shirt).
I was pretty brittle and inflexible in my expectations for the day — I wasn’t going with the flow, and when the group kept changing plans, I got increasingly uptight.
I wasn’t eating properly — I wasn’t eating the same sorts of foods I normally did.
I wasn’t resting enough — I had been pushing myself to go-go-go, the whole time, and I was very fatigued.
I wasn’t exercising enough — I wasn’t exercising at all, actually. I hadn’t been taking the walks I needed, and I hadn’t been working out regularly the way I have been over the past couple of years.
I wasn’t wearing my sunglasses — Big problem on that very sunny day. The brightness only exacerbated everything else, adding to my anxiety and stress.
I wasn’t in command of my thoughts and my reactions — I was being pushed and pulled in a million different directions, and I wasn’t driving the car of my own mind. I was letting everyone else decide for me how to think, how to talk, how to behave. I was trying to fit in and do the right thing so I wouldn’t be as conspicuous (and embarrassing) to my extended family/in-laws. The result was that I stood out even more, I was less able to participate, and I lost it (literally) for a short while that day.
Looking back, I can see how I’ve really come a long way in the past 4 years. I’m nowhere near where I used to be, and I have to remember this as I prepare for this next trip. My anxiety levels have decreased dramatically since I started exercising on a daily basis. And my whole world view has changed as a result. My neuropsych has been a huge help, keeping me honest and realistic — in a good way. They don’t let me get away with the old “stories” about how debilitated I am by my TBIs. They don’t let me easily jump to conclusions about being incapable and incompetent, just because I happen to be human. And they don’t let me make excuses about poor choices I’ve made and things I’ve done. They don’t beat me up over it, but they also don’t let me write myself off with some easy excuse about being impaired.
And that’s quite a feat to accomplish. Because I have a lifetime of experience of reaching the “logical” conclusion that there is something wrong with me, and I am less capable than I actually am. I’ve had plenty of people telling me there was something wrong with me. I’ve had plenty of people “protecting” me from myself. I’ve had plenty of people ditching me or taking me off tasks when I didn’t perform as expected.
It was all a crock, but when you hear it often enough and everyone seems to agree, it starts to sound like the truth.
But it’s not. It’s the farthest thing from the truth.
The real truth is that I have the tools and the experience and the proper mindset to approach this coming weekend in a stable, productive frame of mind. I’ve managed equally — if not more — challenging situations quite well, and I’ve come away a better person as a result.
I know from experience that I don’t have to bury myself in work in advance, trying to keep my mind off things. I don’t have to run away from it, drive myself with all sorts of stress that takes my attention off my anxiety. I can rest and relax and also get good exercise in advance. Eat well and take care of myself, and remember that I’m going to meet and greet people who actually love and care for me, even if they don’t always agree with how I live my life and vote.
That might actually be the hardest thing to handle — that anyone could actually love and care for me. That all my injuries and my issues and my supposed shortcomings might not matter nearly as much as I think they do. It could just be that I have a great time when I go on this trip. It could just be that the only over-stimulation is actually in my mind. And that if I can tame that, all the rest will come naturally to me.