I lowered my heart rate from 90 to 73 in a minute

Last weekend, when I was recovering from a migraine, I checked my blood pressure and pulse:

100/59 with a heart rate of 90

Before… 100/59 with a heart rate of 90

My heart rate was up, for some reason (this was just after noontime), and my pulse seemed a little off. 100/59 might seem awesome, but it seemed a little low to me.

So, I did my breathing and checked again:

95/66 with a heart rate of 73

After – 95/66 with a heart rate of 73

I was able to bring my heart rate down to 73, which felt better, and I raised my “bottom number” on my BP to 66, which actually felt better.  I don’t want my blood pressure to get too low, and I can bring it up with my breathing.

So, I did.

I made the mistake of not checking my bp and pulse while the migraine was setting in. I’ll need to remember that later, so hopefully I can head it off at the pass… before the stabbing pain sets in.  Who knows? Maybe I can head off the other symptoms at the pass: light sensitivity, noise sensitivity, sensory issues, balance, dizziness, etc.

In any case, this is probably a good thing to do on a daily basis, no matter how I’m feeling. It might save me a lot of hassle – and it’s definitely easier and cheaper than dealing with medication.

Getting off coffee — After the migraine subsides

So, this is interesting. I did something to my system over the weekend, and I came down with a horrific migraine yesterday afternoon. It was the worst one I’ve had in quite some time. I’ve had some of those where you go blind in one eye and the world is spinning and you feel like you’re going to throw up, but I don’t remember the headache and weird feeling and light sensitivity ever being as bad as they were yesterday.

Holy crap.

I really didn’t expect it at all. My weekend was going really well. I was cutting back on the coffee and eating a more substantial breakfast of oatmeal and fruit, along with more fruits and vegetables throughout the day, getting more exercise (I rode the bike a long while on Saturday and Sunday and went for multiple hikes in the woods, up to the top of a nearby hill in our local conservation area), and drinking more water. I felt fantastic, with a lot of energy. I also got some roasted dandelion root tea, to try out as a substitute for coffee. I drank some on Saturday afternoon. It was nothing to write home about, and certainly not a reliable substitute for coffee. But it was worth a try. It was in the coffee aisle at the grocery store, after all.

But I woke up to a screaming migraine after my nap on Sunday afternoon. Couldn’t stand the light, head throbbing, sick to my stomach, feeling dull and drugged. Usually my headaches are just there, but this one was intrusive. Holy crap, whenever I moved, it just thrashed me. Up around an 8.5 – 9 on a scale of 1 – 10. I had a bunch of things I wanted to do on Sunday afternoon, but all I could do was sit in a dark room with my sunglasses on, soaking my feet in a hot mustard bath.

I had half a cup of coffee, ate a banana and a piece of chocolate, took a couple of Advil, and drank water (how’s that for performance enhancement?) and I started to feel better. Not as sensitive to light and not as sick. Still not great, but better than I had been. You do what you have to do.

I suspect this was partly about cutting back on coffee… increasing my exercise… changing my diet… and drinking that tea. All that change was abrupt, even if it was in a positive direction. I have a tendency to overdo things out of enthusiasm, and I think this was one of those times. I’m nervous about the MRI, and my anxiety is really rising. So, to calm myself down, I do things that give me the sense that I have some control over my life — changing my diet, exercising, trying new foods, cutting out coffee.

I’ve done some reading over the weekend about migraines, and they can be triggered by a bunch of things, including changes to diet and activity – check, and check. I know that exercise tends to start a headache with me, and I did start to get a bit of an ache while I was riding the bike — both days. But it’s usually just a headache, not the nausea, crazy feeling, and intense sensitivity to light that had me walking around the house with all the curtains drawn and wearing my sunglasses because even through the curtains, the light was too bright.

So, I did a number of things differently than usual, and I learned my lesson. I need to take things slowly — gradually — not dive in head-first, as I tend to do. Impulsiveness plus anxiety equals — surprise!

And not a good surprise, either. Right now, I’m fighting back more throbbing pain, keeping the blinds drawn, and reaching for the Advil. I don’t want to take the Imitrex, because I don’t know what it will do to me, and I have to be “on” this morning.

So, I need to take things easy and make change gradually. Not bombard my system like it’s a machine. As much as I like the idea of roasted dandelion root tea as an alternative for coffee, I don’t think it’s going to do it for me. I think it really contributed to the migraine. After the pain subsided to a relatively simple headache of “4” on a scale of “10”, I tried to drink it again yesterday evening. And the headache started up again. So, even if it’s not the sole contributor, it did not make things better for me. Dandelion is a natural diuretic, and it has other properties, too, that are used as home remedies.  I got some to get ready for my MRI on Wednesday, so I can flush out my system and not be poisoned (too much) by the contrast agent. But I just can’t do it.

Well, better I learn now, than later. That’s for sure. I’d rather get this lesson out of the way ahead of time, while I have the time to rest and recuperate. I have a busy day on Thursday, so I need to not get knocked out by the MRI on Wednesday. Most people don’t have problems with it, and they look at me like I have two heads when I tell them I get sick afterwards, but so what? I know what happens to me, and I need to get ready.

So, it’s plain water and healthy foods for me, thank you very much.

Onward.

Seldom recognized – the impact of physical issues after mild TBI

It starts in the brain and moves from there…

I’ve been working on final edits of a book I started writing in 2008-2009, about how sensory processing difficulties affect one’s frame of mind and psychological state. It’s called “The Deepest Day” and it draws from both my own experiences with light, noise and touch sensitivities, as well as vestibular (balance) issues, along with a fair amount of research I did when I was trying to understand what was going on with me… and why I felt so terrible all the time.

Sensory processing issues (or Sensory Processing Disorder / SPD) can have a lot of sources. And it’s often mixed up with autism, ADHD, and other conditions. When I first came across it, I felt like a door had been thrown wide open to a shadowy part of my life. Suddenly, so much was clear.  I did write a bunch back of posts in 2008, 2009, 2010 about sensory issues, and I’ve written a lot more about particular issues, but it all got too overwhelming to think about. I got turned around by all the talk about what it’s all about, the politics of it, the healthcare territorial disputes, and so forth, and I had to take a break and focus on other things. So I stepped away from the research and focused on my daily life. Plus, the proverbial ship of my life was running into some proverbial shoals, so I had to focus on what was in front of me, day to day.

Still, knowing one of the main sources of my distress was hugely helpful, and it made it possible for me to take corrective action that — no joke — has changed my life dramatically for the better.

I’m inclined to believe that my sensitivities are related to all the times I’ve gotten clunked on the head. I have had a number of mild traumatic brain injuries over the course of my life, starting when I was a young rough-and-tumble kid, and from what I read about TBI, sensory processing difficulties often go hand-in-hand with TBI. When I read the “laundry list” of possible symptoms/issues following TBI, all the physical issues read like a narrative of my life. For as long as I can remember, I’ve had sensitivities to noise and light and touch. I’ve also had severe balance issues for a long, long time. I never really understood what was happening with me when I was a kid — or as an adult. All I knew was, the whole world seemed like a hostile, hurtful place.

And for me, it was. When sound hurts your ears and light hurts your eyes — not always to the same degree, and not always in a predictable way — and it hurts when people touch you, the world turns into an ordeal to be survived. And that colored every aspect of my relationships to life and the people in my life.

Looking back now, I realize that people weren’t trying to harm me. They were just doing what people did. And they had no idea how much it was hurting me. If they had, they would not have done it, I’m sure. A lot of people have loved me over the course of my life — they’ve really cared for me and tried to show it in kind and caring ways. But those ways hurt me, because of my sensitivities. And because I didn’t understand the nature of my issues — nor did I know how to address them — every interaction with other people was a struggle to be survived.

When I first wrote The Deepest Day in 2009, I had to walk away from the book. Seeing in words what a usual day in the life could be like for me… it was just too much. It’s one thing to deal with constant pain and discomfort, as well as balance issues. When you’re in the midst of it, it’s just there. It’s just how things are. But when I stepped away from it and looked at everything as an observer, the sheer magnitude of my issues was simply overwhelming. And I had to stop thinking about it.

I tried to write the book in different “voices” — as both a man and a woman. I wrote it as a first-person masculine “I” speaking. Then I changed it to a masculine third-person “he/him” narrative. Then, after studying a number of different books and papers and reading different accounts, it occurred to me that the way people talk about sensory processing disorders seems to differ between men and women. The way people talked about sensitivities with women seemed in some ways to be more alarmist, yet also more dismissive. I have a big problem with the differences in quality of healthcare for men and women, and I believe that starts with how we conceptualize “men” and “women”. So, I rewrote the book in a female first-person voice… then changed it to a third-person “she/her” narrative.

I also experimented with second-person “you” storytelling, putting the reader directly in the shoes of the main character. But that felt too strained. So, now I’m rewriting it in a neutral gender (very similar to this blog), so that readers can make the main character any gender they want, and experience the book in the way that makes the most sense to them.

Anyway, gender and healthcare aside, the book is finishing up nicely, and looking closer now, I can see how close I was to being done, back in 2009 before I stepped away. It was just too much for me, I guess. And I also needed to do something about those issues.

I have done something about the issues, since then, and it’s made all the difference in the world. I will be the first (and possibly only) person to tell you in writing and for all the world to see that when it comes to TBI, sensory processing issues can be a massively complicating issue which completely mess with your head in ways that can easily be mistaken for psychological issues. In fact, sensory issues do produce psychological issues, but in a way that is hidden and hard to diagnose by the folks who are looking at your state of mind.

Healthcare providers and psychologists just don’t seem to be trained to deal with sensory processing issues, and like me, a lot of people can end up going down psycho-drama ratholes, looking for emotional or relational sources of psychological disorders which in fact have a physiological basis. That whole mind-body thing…

And when you are working with a psychologist who has a poor relationship with their own body… then things can really get clouded.

Because chances are, they’ve trained themself out of even remotely considering their physiology, when it comes to their psychology. Dealing with their body is not “safe territory” so they avoid it because their own fears and anxieties keep them from conceptualizing clearly and cleanly.

That doesn’t make our physical experience any less impactful. If anything, it just heightens it. And The Deepest Day really brings that home for me. Just thinking back to how off balance I was, how nauseated I was all time time, how turned around and dizzy and in pain I was… and then you throw in the light and noise sensitivity on top of it, and whammo — you’ve got yourself a potent recipe for a messed-up head.

Personally, think that TBI recoveries are impeded by physiological issues more often than most folks can guess. Here’s a “mind map” I created of the issues, back in 2008. It’s still relevant today.

How one thing leads to another

How one thing leads to another – click the image above to see the whole map

Those physical problems add stress to our systems, and when stress is in the mix, it makes it more difficult to learn. TBI recovery is all about learning and re-learning how to live your life effectively, and if your ability to learn is impeded in any way by environmental stress, well then, you’ve got yourself a prolonged timeline for recovery — if you have recovery at all.

That’s what was happening to me in the years after my fall in 2004. I was having more and more problems that were more and more stressful, and although my neuropsych says that my actual functional capabilities were not completely wrecked, and my difficulties arose from the way I was conceptualizing and relating to my injury and life situation (I’ll rant about that later), the stresses around the experience were adding up in ways that made things increasingly worse over time.

The impact of my injury was disproportionate to my actual injury, and after searching high and low like a possessed person for years, I can tell you exactly why that was, how it happened, and how I dealt with it all to get where I am today — happier, healthier (for the most part), and more functional than ever before in my life.

The Deepest Day is a start to an extended conversation we all need to have about the real causes of difficulties after concussion/mild traumatic brain injury. Or any brain injury, for that matter. Stroke. Aneurism. Encephalitis. Whatever. It’s all related, it all directly impacts our experience as human beings, and our Sense-Of-Self. Clinically, our injuries may not be noticeably impactful. In terms of scientific measurement, they may not even register. But something is happening, and that something really matters. For us, for the ones in our lives, and everyone who is even peripherally impacted by our difficulties (including the countries we pay our taxes to).

The longer we ignore or downplay this, the longer we make it possible for people to suffer. The more we deny the connections, the more we guarantee that this problem will persist — for us all.

Finishing what I started… in 2009

It’s been over 5 years, since I started the book I’m finishing right now. It’s about sensory issues,and how they affect my life each day.

It’s my hope that this book will shed a little light on what it’s like to be acutely sensitive to light, sound, touch, and how it feels to have your balance severely impacted.

It’s a full-spectrum experience, and it’s not much fun.

Sensory issues have been a real problem for me, ever since I was a kid. And only in the past six years or so, have I actually been able to get my head around them — and do something about them. Food allergies were a big culprit. As well as stress.

Of course, when you’re not aware of what’s stressing you, it makes things even more stressful — a self-fulfilling prophecy, if ever there was one.

Anyway, I’m going to finish the book, at last. It’s not long. It’s about just one day. I need finish it, once and for all. I don’t want to complain. Just explain.

Because I know I’m not alone in this.

Two steps forward, one step back… then two more steps forward

It’s still progress

There is progress on the neuro front — slow but steady. I may have found someone I can work with to help me sort out all the issues I’ve been having, but have not been able to articulate that well:

  • constant headaches
  • constant tinnitus
  • noise sensitivity
  • light sensitivity
  • balance issues
  • nausea
  • fatigue
  • muscle weakness
  • twitching in my right hand and thumb
  • tingling and numbness on the left side of my face

All the “usual suspects” of my daily life are getting to be a real pain in my ass, and now that I’m not completely wiped out each and every day by my commute, I have gotten the strength back to actually notice how screwed up things generally are for me, physically speaking.

Don’t get me wrong. My life is good. I love it. I have a good job with a great company, my debts are gone, my house is in good shape, I’m able to read and write more now, than ever before, and it’s great.

The thing is, all these symptoms — some of which have been with me for as long as I can remember — are now much more noticeable, and I would really like to do something about them.

The main thing is, I need to see if they are part of something more serious than just the everyday post-concussive wear and tear. I can definitely live my life with them in the background. I’ve been doing that for as long as I can remember. They don’t make me utterly miserable, when I manage them.

But wouldn’t it be interesting to find out what life is like without them?

That’s the next chapter of this journey, anyway. Still in development.

I haven’t forgotten about my S.O.S. – Sense-Of-Self – work, though. I’m working on a couple of other projects right now that are taking up a lot of my time and attention. I hope to get back to the SOS writing this weekend — and in fact, it would make sense, since my physiological issues and all the pieces that go with that are intimately connected with my sense-of-self. That, and my ability to communicate.

I’m feeling a little discouraged about the communication piece, actually. When I’m writing, things become very clear for me. But when I’m talking, I can’t say nearly the things that I need to say. It’s like I have a vast and ever evolving “ecosystem” in my head, but just a very small window through which the thoughts and ideas and knowledge can actually pass. That’s when I’m talking. Everything gets jumbled up, and even though it sounds like I’m saying things that make sense to others, they do not reflect what I’m really trying to say.

And people who tell me I’m making sense just depress the crap out of me, because I can’t completely express what’s truly going on inside of me, and if they could hear only half of what I want to say, it would put things in a very, very different light.

When I’m writing, however, it’s a totally different thing. Maybe because I’ve spent so much of my life writing and working on that skill, while talking has been far less of a priority with me. That, and when I talk, all the words and thoughts and concepts get jumbled up in my head.

I guess that’s my next thing to tackle — how to communicate effectively by the ways that work best for me, instead of trying to rely on spoken communications. I’ve collected a lot of data about my headaches and other symptoms, which I can share with the neuro, when I see them. And I’m working with my neuropsych to figure out how best to present everything.

It’s all an ongoing process, of course. And I need to not be too rough on myself when I fall short of where I’d like to be.These things can take time. Just gotta stick with it.

Onward….

 

Doctors: They’re just so far away from us

It’s hard for me to know what to say to doctors, and how to say it

In preparation for seeing a new neurologist in the beginning of next year, I’ve been listening to some physician podcasts, lately. It’s my latest “thing” I do when I have some free time to listen. I need to better understand doctors and how they think and talk, so that I’ll be better able to communicate with them, if I end up seeing them.

The podcasts are usually pretty short and I can get at least 20 minutes in, during lunch or while I’m doing busy work at the office.

I don’t really have that much time to listen to podcasts or watch videos, in general, because it seems to take me longer to “get” what’s going on, than I expect. And it’s a little discouraging to listen and expect myself to understand immediately, but have to either back up and listen again, or just let it go.

I think it’s harder when I can’t see someone talking. Watching videos, it is easier for me to get things. But again, it takes up a lot of time, and it’s a bit discouraging to feel like I’m falling behind.

Anyway, today is my last full day of work before my Christmas and New Year’s vacation. I’ve got a few things planned for next week… but not much. Most of what I’m doing is taking care of myself with my support group — seeing different folks who can help me in one way or another — and resting. And doing some work on the projects I have going. This is going to be a good time to get away from my routine that has me on-the-go all the time, and do some deeper thinking than usual.

Should be good.

One thing I’m going to be working on, is collecting my info for this new neurologist I’ll be seeing. I’ve been intending to see a neuro for about a year, now, and finally it looks like I’m going to connect with one. I have high hopes about this… but I don’t want to get myself too caught up in hopes. I’ve had things go wrong before, so I have to factor that possibility in.

Anyway, it will be good for me to just collect all this info, anyway, so I have it to talk to any and all of my doctors later on. I haven’t really discussed my headaches in-depth with my PCP — they told me to go see a neurologist, anyway.  It will be good for me to collect my info in one place… also for myself.

I tend to just disregard what’s going on with me, because there is so much going on, on a given day. And I’m kind of resigned to it all — the vertigo, dizziness, feeling sick to my stomach, always having a headache, the ringing in my ears, the noise and light sensitivity, the joint and muscle pain… it’s all one continuous “cloud” of background noise for me, and I just live my life in spite of it. I don’t let it stop me. It slows me down at times, but it doesn’t stop me. And I use it as a barometer to make sure I’m not overdoing it. More pain, more noise… that means I’m overdoing it and I need to rest. So, it can come in handy.

But some days, it just feels like too much, and I’m not all that sad about the idea of not living forever. “Eternal rest” sounds pretty friggin’ good to me, some days. Not that I want to kill myself (I haven’t felt that way in a few years, which is a positive development). But I don’t mind the idea of this whole “deal” not going on forever.

Other days, I manage to deal with it… and I have hopes for things changing for the better.

If only I felt like I could effectively discuss this all with a doctor. I really don’t.

Talking to doctors has never been my strong suit. Conveying the right information in the right manner has always been a challenge for me — I either gave them too much information, or not enough. Either way, I often end up looking a bit dense and malingering, like there’s not really anything wrong, so what the hell am I taking up their time for? Listening to the physician podcasts, I’m struck by how specialized their language is, and how differently they describe and conceptualize things. They have their own language, and with their own language, comes a different way of thinking about things — very, very different from how the rest of us think and deal with things.

Going to the doctor is like going to a different planet, sometimes. It’s a foreign place that often doesn’t seem to have anything to do with my everyday life. Doctors are often so removed from the flow of regular everyday life, with their entire systems being reshaped by medical school, their thought processes shaped by specialized terminologies and ways of looking at situations, and their social status being separate and apart from “the sick”.

They deal with extreme cases all the time, so of course they have to protect themselves. They’re human, just like us, and the medical school system seems to crank out professionals who are doctors first, and humans second. And if they never have any physical problems of their own… well, how can they really truly understand the situations of the people they’re working with?

It’s very odd. And it’s also perfectly understandable.

But even though I understand it, it still bothers me. Yes, I get how the stresses and strains and secondary trauma of medical training produces individuals who are pretty far removed from their patients, in terms of thought process, language, and deep understanding of the human condition, but it’s still pretty depressing. And I get very anxious when I think about trying to explain myself to the next neuro I see — if that ever materializes at all.

Who knows if it will? But whatever happens, I still need to track my symptoms and keep decent notes, so that if it ever happens, I’ll have something useful to convey.

Well, anyway, gotta get to work. The day is waiting.

Onward.

 

 

Back from my 2-day reboot

Ahhhh… that’s more like it.

I just got up from a 2-hour Sunday afternoon nap, feeling like I’ve gotten the reset I’ve been needing.

My parents came to visit over the weekend, and we three really good days together. I took Friday off, and we hung out, roamed around my area, spent some time on Saturday with friends they’ve never met, who are more like extended family to my spouse and me, and made and ate good food.

I tend to really dread their visits, because there tends to be a lot of tension with my spouse, who doesn’t see eye to eye with them, politically or socially. This time there was some tension, but I spent a lot of time alone with my folks, while my spouse slept or did other things, so we didn’t have too much overlap.

And the times when there was tension, we managed to diffuse it pretty well.

Overall, I handled things pretty well. Both my spouse and my parents are very high maintenance, so I have to actively manage their activities. I have to manage my spouse, keep them relatively calm and not panicked, jump in and help them with different physical activities, and make sure they feel like they’re involved. And I have to manage my parents, because they have a tendency to pick up tools and start to cut and trim and “fix” things that don’t actually need fixing, which leaves more work for me to do later.

In the past, we’ve had a non-functioning bathroom faucet for several months, because my father decided to fix the drip without having a seat wrench.

Took me a few months to get the seat wrench — I kept forgetting to look for one — and then took me a little while to figure out how to properly use it and fix what my father broke. I felt pretty stupid wrangling with that simple tool, but there it is. What can I say? I’d never used a seat wrench before, let alone looked for one at the local hardware store.

My mother has a green thumb, and she loves to prune and dig and rearrange plantings, which is great, so long as she’s supervised. Once, she “went rogue” with a clipper and pretty much denuded one of my spouse’s favorite plants — one they’d been given for their birthday.

So much for the prized birthday present. That was a sore spot for months, because the plant in question was a centerpiece in our home and became a constant reminder of the havoc my mother can wreak, if left unattended with a clipping implement.

This time, I was “riding herd” on all three of them — parents and spouse — because my parents are starting to slip a little, mentally and physically, and my spouse has been increasingly unreasonable, hyper-sensitive and aggressive… and I didn’t feel like dealing with yet another Clash of the Titans, like we’ve had in prior years. In years gone by, they’ve practically come to blows.

And that blows.

But this time, we kept peace pretty well, and we left things on an up note, when all was said and done. My dad got to fix something that needed fixing. My mom got to plant some perennials we’ve been meaning to plant, and my spouse got to sleep almost as much as they wanted to, as well as spend some valuable time with our friends on Saturday.

Coming off the weekend, I’m feeling pretty good about the whole experience. My parents are utterly exhausting — they are go-go-go, non-stop, all the time. They’re like sharks. They never stop moving, and they can never sit still for longer than an hour. An hour is long for them. In the past, I’ve completely melted down with them, because of the constant activity, the constant movement, the frantic pace they keep up. It’s generally too much for me, and it sets off all my issues — irritability, light sensitivity, noise sensitivity, sensitivity to touch, distractability, fatigue, anxiety… you name it, they set it off.

But this time I did well with them. I kept up. And when I felt like I was starting to wear thin, I stepped away for a little bit. I went to bed early. I took breaks from them all, now and then, and I was pretty good about watching what I was eating. I ate more than I should have, that’s for sure, but it was all healthy food, so that’s something.

Yes, that’s something.

At the end of it all, I’m feeling like I did a good job of handling myself and the challenges of the past three days. I had a lot of trepidation and anxiety about how I would handle things, because in the past things have been very tense, there have been a lot of fights and tension, and for days afterwards, my spouse would go on and on about the things that my parents did and said “to” them.

But we’re all slowing down, and none of us has the old intense edge we used to. My parents have pretty much “gotten” that they don’t have the answers to everything, and now their priority is on enjoying the time they have with the people they love. Their friends and peers are getting sick and dying. Members of our family are going through very hard times. And it’s like they finally got their heads screwed on straight with their priorities in life.

That’s a relief.

And my spouse has lost a lot of their hell-bent momentum, since they got really sick about seven years ago. They’ve also been declining, cognitively, so they’re less able to kick ass and take names like before.

Basically, everyone’s decline is working in my favor. I hate to say it, but it is.

And now, as I look back on the non-stop action of the past 2-1/2 days, I feel a great sense of relief and relaxation that my parents have returned home, and I can get back to my regular life.

Of course, “regular life” means going back to work to deal with all the bullsh*t at the office, the politics, the jockeying, and all the stupid-ass competition between co-workers (who should really be collaborating, except that they don’t seem mentally capable of doing that). Well, that’s tomorrow.

Right here, right now, I’m getting my act together, figuring things out, and pretty much settling into what’s left of my weekend. It’s been a good couple of days, it’s reset my priorities again, reminded me where I come from and where I want to be heading in my life, and it’s good.

It’s all good.

 

 

 

 

Bright – a snapshot

Yes, bright

It’s an achingly bright day. Looking out the window, my eyes are skewered by sunlight. Brilliant shafts seem pierce through my eyes and into my brain. My temples pulse and throb, and I drop my eyes. Too much — it’s too much for my pupils, which have been focused on indoor sights since 5 a.m. The headache I was hoping I’d escape today suddenly surges up, going from a “2” to a “6” in a matter of seconds. I say a little prayer that the ache will subside, then I abandon that hope. Clinging to that faint promise in the past has wasted many a day for me.

I’ve had my back to the windows for hours, now, and it’s hard to believe that after days of murky skies we could have this much light, this early in the day. But there it is — sunlight. A lot of it.

The moon last night was wild and full, bathing every inch of open space with rich, silver light. And now the sun has taken over — even brighter. The clouds of yesterday have given way to a pale blue, cloudless sky, midwinter shadows of bare trees stretching across the space filled by moonlight only 6 hours before.

I rest my warm wrists on the cool edge of my laptop. I’ve been writing since 6 a.m., and after more than two hours of intense focus, I’m due for a break. I feel good. I’ve had some thoughts and insights that made sense to me, but I don’t want to overdo it.

I need a walk. Not a long ramble through the woods, over hill and dale, but a quick jaunt down the road and back. Just enough to stir the blood. Just enough to warm me up. Sitting for hours at a time makes me feel sluggish and cold, and it’s too nice a day to feel that way for long.

I look up at the window again, squinting my eyes slightly to keep the spears of light from skewering me like before. After a few moments, my gaze acclimates. I catch sight of my neighbor doing some yardwork, and the rattle and clank of his tools carries across the way on a brisk wind that tugs and pulls playfully at the tops of the trees. Leftover leaves are at last tugged from the branches of bare oaks and maples, the light roughness of their scuttles across pavement just barely audible above the sound of the wind and my neighbor’s rattling ladder.

I look back at my laptop and click the “save” icon, watching it flash, then turn grey. That means my save was successful. Another few clicks, and the machine is hibernating till I return.

From my walk.

Out in the bright light of day.

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.

 

Beyond ye olde comfort zone

So, yesterday was interesting. I ended up not having to help a friend with the event they were dj’ing, but I did have to dog-sit for one of their buddies. And it turned out okay, actually. I got a few hours of my life back, and I also got to hang out with a pretty cool dog. I went for a couple of walks throughout the evening, and I even got 4-5 hours of good solid work done on this project.

The crazy thing is, I actually was able to start work on my project, once I got past the hangup about not being in my usual comfort zone, where I have hours and hours of uninterrupted time to work. I had this dog to take care of. I had to take it for a couple of walks (then wash off the dust and possible poison ivy each time we got back). I also had to make sure it wasn’t digging in the trash, which this dog loves to do. I was definitely not un-interrupted last night, and I had to keep an eye on things in ways that I usually don’t.

And yet, it didn’t stop me from making real progress. It was an added factor to deal with, but I dealt with it and it turned out fine.

I also slept like a rock last night — must have been all that walking, especially the midnight walk on an amazingly bright night. I think that “super moon” is happening this weekend, and outside at midnight, even with the overcast sky, there was a glow that lit things up like I haven’t seen in a long time.

I also haven’t been out walking at night in a long time. The last time I was actually outside walking around was several years ago, when the neighbor’s dog kept circling their perimeter going crazy crying and whining and barking like there was some wild beast out there. Turns out, there was — we have some large-ish, potentially dangerous predators in the woods of this area, and one of those creatures had been wandering into our neck o’ things, coming after the neighbors’ chickens. After the neighbors got rid of their chickens, they went away, but for a while it was a little dicey going out at night. I found out the easy way — shone my flashlight into a clearing in the woods, and saw two bright eyes looking back at me, more than a foot above the ground.

Definitely not a possum. I backed away slowly and went back inside. We haven’t heard tell of any of these creatures around, lately, but for some reason, I just stopped going out for night-time walks.

Last night was different, though. The dog had to be walked. He’d been drinking water all evening, and nature called. Plus, he was all rested from sleeping for hours, so he needed to be worn out so I could get some sleep. Beautiful walk on a beautiful night, and not terribly much traffic. Anyway, you can see people coming, so you just step off to the side, signal you’re there with your flashlight, and then move along when they’ve passed. In some ways, it’s actually safer than the daytime, when you can’t always see them coming.

Oddly, the mosquitoes didn’t make me crazy. Normally, they do, but I was so relaxed yesterday evening, it was crazy. Just so relaxed and feeling great — even though I was short on time, and my hours of working on the project ultimately turned out to be a bust because I had gone down a wrong path of thinking, and I’d persisted in this wrong path for hours. The only thing I really achieved last night, was figuring out what NOT to do. But in the end, that’s fine, because I needed to figure that out, anyway. Better to make the mistakes now, than later. I don’t have a lot of time later.

One of the things I was figuring out last night is a program I need to use to complete this project. I have been terribly resistant to figuring it out and learning the system, for some reason. I’m blocked, and I don’t know why. That little voice in my head that tells me, “You can’t” has been working overtime — in every single aspect of this learning task. It tells me:

  • I can’t find the time to work on this.
  • I can’t figure out how to work all the features.
  • I can’t find all the different pieces I need to put together.
  • I can’t learn the advanced functionality.
  • I won’t be able to change the things I need to change.
  • I can’t come up with a decent end-product.
  • I can’t hold my own, and I will be treated like a fool and an idiot when people see the product of my hard work.

Yes, this voice has been very busy — like so many mosquitoes buzzing around my head, distracting me and annoying me and stinging me.

Last night, though, I finally buckled down and dove into the starting parts of learning this process, and once I got going, I wasn’t bothered by that voice and all its little BS messages that are designed to just get me to stop what I’m doing and take a break and give myself a hiatus from… living my life.

The mechanics of this are fascinating. This voice-thing seems to get “triggered” by a biochemical state — a combination of excitement and anxiety and uncertainty, which my mind apparently interprets as DANGER – RUN AWAY!!! When that particular mix of emotions ramps up, my mind seems to shut off and immediately starts looking for the nearest escape route. It’s like my mind thinks I’m in a fighter jet that’s headed right for the side of a mountain, and it hits the eject button, getting me out of “harm’s” way.

The only thing is, I’m not actually in any danger. There is no threat — either immediate or distant. It’s just a feeling I have that comes from the circumstances around me, that my mind decides means something that is simply not true.

My neuropsych loves to tell me that it’s a psychological thing, being connected to how I think about things and what I decide things mean. Personally, I think there’s something to that — and yet the whole process happens way before any psychology has a chance to engage. It’s a physiological thing to me, mainly, which hijacks my abilities to reason and see clearly. My mind doesn’t even have time to interpret what’s going on, but my body jumps into action immediatamente. No time to think – just react. Get the hell out! Go! – Go! – Go!

So, what’s making a different to me in this? What’s helping me get past it?

Well, first, really practicing being cool is helping. Just staying impassive in situations that test me, watching what is happening, and really working at keeping my cool — no matter what.  I decide how I want to be in situations that test me, and I treat them like tests… like training… to help me learn to be cool. It doesn’t always work — like with that meltdown a couple of days ago — but when I am in my right mind, it can work.

Stopping the escalation is an important part for me — it’s critical, really. Taking a break and allowing all the biochemical drama to subside, is such an important step with me. It gives me back control over my life and my experiences in life, and it lets me just be myself, instead of a collection of mindless reactions to what’s happening around me. When I escalate just because I’m all fired up, I stop being myself. I start being a reaction. I don’t want to be a biochemical concoction. I want to be a human being. I want to be me.

Of course, until I realized that I could actually chill out the process and stop the madness, that was well nigh impossible. But realizing that I can do this — that I can stop the escalation and let the biochemistry settle down before it bursts into flames, has made all the difference in the world. It’s been revolutionary, really. It’s like I’ve turned this page, and nothing can get to me — provided I am rested and am paying attention to what’s happening around me.

And when it comes to paying attention, one of the things that has helped me a whole lot, is something that wouldn’t seem that big of a deal — paying attention to my breath and relaxing. Relaxing cuts down on my stress levels, which takes the edge off my sensitivities, which can be extremely distracting. In fact, I would have to say that my sensitivities to light and sound — which get much worse when I am stressed / tired / pressured — are a huge source of distraction to me. And they set up a feedback loop that’s a little like putting a microphone in front of a speaker — not good.

Stress makes me more sensitive. Sensitivities distract me and make it harder to attend to what’s going on . When I cannot attend as well, I cannot monitor my internal state as well, which often results in me not realizing that I’m getting more and more stressed, and I’m about to blow…

But when I can take the pressure off and just relax and settle into what’s happening in front of me, with the people who are with me, things get a lot better. And I get a lot better. Because I can pay attention to what’s going on with me, instead of the flurry of activity all around me that is distracting and pressuring and bothersome and so often ends up in a meltdown — whether it’s internal or external.

And when I can manage that, I can get beyond my former comfort zone – and have every zone be a comfort zone. This was unheard-of, just a few years ago. And I suffered for years and years as a result. But now things are turning around. And it’s good.

So, anyway, that’s the deal for today. I slept till 8:30 this morning. Unheard-of in recent history. Must be all that walking yesterday. Note to self: go for more walks today.