Tracking sleep

fairgroundThe countdown to my business trip is T-minus-4-days. And in the meantime, I’m taking care of my everyday life as best I can.

I’m seeing the neuro nurse practitioner tomorrow, and I’ll be reporting in about my sleep.

Below is a chart of the numbers I’ve collected for every night over the past month. It shows how many hours I’ve slept, as well as how many hours I napped. And it shows how I stack up, relative to my target time of 8.5 hours.

sleep-log-april-2016

I’ve been falling short consistently, apparently. I’ve been thinking I’ve been doing well, but when I see a chart, it’s clear I have a ways to go. A couple of weeks ago, I was really behind on my sleep, due to work stress and a conflict I had with a friend of mine that really got me bent out of shape. I know I shouldn’t let it get to me, but it did.

I am human, after all.

So, this is all stuff to work on. Things to stay mindful of, and not let it all get to me. And to find ways to calm myself down and chill out, rather than getting wound up and bent out of shape. Maybe I’ll put a printout of the chart beside my bed. Yeah – that’s a great idea for a reminder.

I’ve been prepping for my business trip next week, doing some shopping and also some checklists, as well as practicing my talks for the trade show booth. I’m not feeling a huge amount of pressure, though. If I do a good job, then fine. If not, I’m not sweating it. In a way, I don’t really care about the event. I care about the customers I’m going to meet, and I care about the people I work with, but I’m not personally invested in the company. Not anymore. Not since they’re selling out, lining the pockets of the people in charge, while laying off a lot of people.

So, I’m treating it like a free trip to a part of the country I’d never normally go to. Resorts in warm climates are fine, but I hate amusement parks and places where large crowds gather, so yeah, this will likely be the one and only time I ever go to this place.

One good thing is that I’ll get to see a relative I haven’t seen in over 30 years. They’re living in the area, and I’ll get a chance to catch up with them, which will be nice. That will get me off the hook of hanging out with my workmates, who just want to run wild and party while they’re away from their spouses.

I have no interest in joining them. I see them every day, as it is. I’m just going to do my job, and then come home. I wouldn’t even go to the place, if it weren’t for work. I need my sleep (see above). I need to eat right and take care of myself. I can’t get drawn into their version of fun.

So, I’m hoping my relative can provide some welcome respite from their company. It’s a plan, anyway.

In the end, I’m just looking forward to everything being over. Flying there, doing the job, flying home… and getting back to normal again.

But that all feels like a distraction from what my real focus is — getting enough sleep, so I can keep my health in balance… and also not have to use the sleep medication that was prescribed to me. My old neuropsych warned me away from it, because although it supposedly metabolizes quickly, that’s not true for everyone. And I’m so sensitive to meds, as it is, I can’t imagine my body is going to behave like everyone else’s.

The neuro visit this week is really just a way for me to check in — and check out. They don’t seem very interested in addressing the reason I actually went to see them – my balance. So, I’ll handle that myself. And never mind the pills. Or the procedures. They’re not that helpful, anyway.

I think my biggest frustration is that I go to these specialists in good faith, believing that they are willing and able to assist me. And then they just don’t deliver. Or show much interest in delivering. There are a million possible reasons, but figuring it out is not the best use of my time.

I’ve just got to keep the focus on myself, on keeping my own balance in every way possible, and keeping myself fit and capable as best I can. It’s really the only way my life is going to be as great as it can be.

And that’s my intention, really. To just have a great life — and enjoy it to the fullest.

Getting my body back, too

balance-figuresI’ve been concerned about falling, for some time, now. I get lightheaded and dizzy, and I sometimes lose my balance when I’m tired or I’m distracted (which is often how I feel). I’ve seen a neurologist about possible neurological bases for this, but the MRI didn’t come back with anything meaningful that they could do anything with. Also, I don’t have a condition they can diagnose, so they can’t bill the insurance company, which means I can’t get much in-depth help from them. They need to pay their bills, and if the insurance won’t cover what they’re doing for me – and I certainly can’t cover it all – then nothing’s going to get done.

Which kind of sucks.

But frankly, it doesn’t surprise me. I have been steering clear of neurologists for some time. Only after my neuropsych encouraged me to dig deeper, did I agree to try again. And the one they referred me to moved out of state, so that’s that. This one was another good prospect, they thought, but my experience is turning out different from their expectation. No surprises there.

I’m going back in another week to follow up and put this whole thing to rest. All they can tell me is that I’m probably not sleeping enough, which my old neuropsych thought was “preposterous” – but I can kind of see their point. When I’m tired, my brain doesn’t work as well. And balance is very much handled in the brain. So, fatigue could conceivably be a source of imbalance.

Still, there’s no guarantee that I’m going to ever actually catch up on my sleep and feel fully rested. I wear out easily, and I don’t have a life that allows me to get naps when I need them. Not yet, anyway. I’m working on that.

Anyway, I’m not going to get all bent out of shape about it. I’m meeting with a wellness coach/personal trainer at work today. That’s one of our employee benefits – an on-site wellness consultant – so I’m going to take advantage of it. I’m going to see if they can tell me some things I can do to strengthen my overall system, to give me better balance, physically speaking.

Think about it — the body moves as a result of muscles coordinating their movement. And keeping your balance really involves a lot of muscles. I sit and stand — stationary — for most of the day, every single day, so I don’t use those muscles as much. And that’s no good. So, I’m hoping they can show me ways to strengthen, as well as get more flexible — that’s another piece of keeping your balance.

I’m also working on really improving my sense of my own body and where I am in space. I get pretty banged-up from doing yardwork and chores around the house, because I run into things (but don’t realize it), and then I end up with bruises from impacts I can’t recall. I’m so focused on what I’m doing, that I don’t even notice the impacts. So, yeah, there are two things going on there, but I’m thinking that if I can at least improve my sense of where I am, relative to sharp objects and hard surfaces, I can possibly look a little less like I got in a bar brawl, after I’m done cleaning up the yard😉

The way I’m working on that, is by really paying attention to my body during the day – noticing where I’m tense, and focusing on relaxing it. I’ve been watching videos of Systema — a Russian martial arts practice that centers around breathing, relaxation, and body awareness. Some of the things that they do in the videos are amazing — and the folks doing it aren’t these monster-ripped superheroes who overpower their opponents with sheer force. They’re average-looking folks who you’d never expect to be able to do the things they do. Because they know their bodies, and they relax and let themselves just respond to the situation.

I don’t think I’d ever do Systema training, because of all the hits and the falls. I’ve had enough of them in my life, already, and I don’t want to push my brain’s luck. But I did get a book from them a while back about breathing and improving your body sense, and I’ve been reading that on and off, over the past year. I’m getting back to it, now, and it feels pretty good. Just getting a better sense of my body, how it moves, how it feels when it moves… when it’s tense… when I need to breathe… it’s good.

It’s also helping me sleep. I get so caught up in my head, that my body can’t catch a break. So, focusing in my breath and also trying to feel each and every bone and muscle in my body, and relax as much as possible… that gets me into a relaxed state that gets me “down” before I can get halfway through. I’ll start at my toes, and by the time I’m at my knees, I’m out.

And that’s great. I used to do this all the time, then I stopped… and I forgot about doing it. That’s one thing I’m working on, these days — trying to follow through and not drop things before I finish them. Or, if I do get interrupted, make a note of what I’ve been doing, and keep that note where I can see it and remember it. I just remembered another project that I was making amazing progress on… then I got interrupted, and I forgot about it… and I ended up heading in a completely different direction.

Months later, I suddenly remembered it last night, and sure enough — there it is, waiting for me to continue working on it.

The breathing and relaxation stuff is just the same. I’m making great progress, then I get distracted, and I head off in a different direction. And I forget about what I’d been doing — and it ceases to exist for me.

So, I lose the benefits I’ve been getting from it. And I lose that part of my life. I slowly drift back to my old ways. I start having the same problems that I had before, and I wonder why I keep ending up back where I started… all over again… when I was making so much great progress.

It’s discouraging. So, I need to do something about that.

And so I shall.

Onward…!

Ha! The extra exercise worked

It's important to keep the right balance
It’s important to keep the right balance

So, yesterday, I exercised twice — once in the morning, and again later in the afternoon at work. There’s an aerobics room at the gym at work, and it’s walled with mirrors. That’s exactly what I need, so when I’m doing some movement, I can work on my form and be mindful of how my body is actually positioned as I move it.

I picked up a lot of bad posture and positioning habits when I was younger, and that’s cost me valuable time later in life when I pulled or strained muscles, due to bad form. And then I had to sit out for a while, till they got better. And by the time they got better, I had forgotten about doing them at all. And I lost more time, till I got inspired to do them again.

So, keeping myself in good form is important. And I had the chance yesterday afternoon to spend about 20 minutes moving and watching myself move, making sure I wasn’t moving in ways that strained my back and hips and knees, and all the other connections that have given me trouble over the years.

I didn’t spend a ton of time on it, yesterday, but it was enough to wake me up, and also give me a bit more of a workout. I had been planning on getting an extra exercise session in, when I got home from work. But to tell the truth, I’ve got to make supper, and I’m so done with the day, by that point, that I just want to make supper, talk to my spouse, and chill out.

So, exercising for 30 minutes during the day is really a good option for me. It breaks up my afternoon, and it also wakes me up.

And last night I went to bed by 10:00 and I woke up close to 7:00 a.m. — nearly 9 hours of continuous sleep. Amazing. Just amazing. I’m still feeling a bit fuzzy and groggy this morning, but the fact that I got that much sleep makes it all the better.

Plus, this afternoon, I have no meetings, so I can do it again. I moved a little bit this morning, to work on my balance, and also get a sense for where my body is in space. With my balance issues — which are the one outstanding remaining danger for me and my physical safety — I have to do something. The neuro I went to see to help me with it, doesn’t seem to take my situation all that seriously. Hell, they don’t seem to take ME all that seriously. So, I’ll just have to take care of this all, myself.

I can probably do a better job of it, anyway, because I know what my issues are. I have no trouble articulating them, because I don’t need to — I’m walking around in a body that’s got movement and balance challenges. I already know first-hand what the deal is, and I don’t have to convince anyone of it.

And that makes it a whole lot easier to deal with.

Personally, I’m sick and tired of people not taking me seriously, not believing me, and dismissing me — or brushing me off with some bogus explanation, because they can’t be bothered to look deeper. Maybe it’s a function of the medical system (I won’t say “healthcare”, because there’s something else driving it than “health” and “care”), which routinely traumatizes and exhausts its members, and then expects them to turn in stellar performances. I have to factor in that I’m dealing with professionals who are A) impaired at a functional level — and have been, since they started med school, and B) honor-bound to flatly deny that lack of sleep, secondary trauma, and the pressures of the insurance companies could have a negative impact on their performance.

So, I have to take it all with a grain of salt. And just use them for what they’re good for — prescriptions, if I need them. IF I want to take them — which I usually don’t. They’re gatekeepers for insurance companies, and little else, from what I’ve seen. Just as many financial advisors are little more than highly compensated sales reps for financial services companies (I know, because I was recruited by a fin svcs company many years ago, and I got an inside look at how things work — and I opted out).

So, all that aside, it feels great to be doing something for myself. I forgot to contact that trainer at work again, to go over some complex movements and strength training approaches. I’ll make a note to do it today. I’m feeling a lot of anticipation about this spring… I think it’s going to be a good one. And an old project I had put aside, years ago, has now suddenly shown itself to be feasible, as a solution to one of the big conundrums I couldn’t sort out before has suddenly become obvious to me. So, that’s a nice thing. Very nice indeed.

It’s amazing, what 9 hours of sleep will do for you. I’ll have to try for this again… and again… and again…

Onward.

How may I dismiss you? Let me count the ways…

blah-faceI read something really bothersome this morning – so bothersome, it’s tweaked my last raw nerve and put me in a mood.

It’s an article entitled “Top Ten Psychosomatic Symptoms” and apparently, it takes ~1 minute to read.

That should have been the first red flag. Nothing good can come of a diagnosis “aid” that takes 60 seconds to read.

Lo and behold, here are the top 10 symptoms created by your mind when the brain “attempt[s] to throw a person’s consciousness off guard by inducing physical changes in the body, in order to prevent the person from consciously experiencing difficult emotions, such as rage, sadness, and emotional distress.”

Oy. Here we go… all the ways that we’re not actually suffering from a real illness. The following may be all in your head:

  1. Chronic Pain Syndrome – not real pain… you just don’t want to deal with your emotions
  2. Fibromyalgia – odd… I thought it was settled, that it’s a real thing.
  3. Carpal Tunnel Syndrome – because repetitive stress injuries… nah, not really a thing.
  4. Gastrointestinal syndromes – maybe you should just try to relax
  5. Migraine headaches – apparently, the top-trending medical issue on Twitter is a chimera
  6. Frequent need for urination – because yer innards would never shift south and put pressure on your bladder, now would they?
  7. Tinnitus and Vertigo – okay… clearly the person writing this has never dealt with this crap on a daily basis… for years. I invite them to walk a mile in my shoes.
  8. Allergic phenomena – ’cause, like, our world is completely hypoallergenic. Not.
  9. Skin rashes (Eczema, hives, acne, etc.) – okay, possibly…
  10. Eating disorders – it’s been a long time since I read a more gross oversimplification

So, that’s the Hall of Shame for today, folks.

Be glad you don’t have the author for your therapist.

I sure am.

I’m already missing that hour

time-for-changeToday is a work day for me. I’m painting the ceiling in my bathroom that has gotten a bit gray from mildew. It’s not awful, but it’s not pretty. So, I’m scraping off the crusty stuff and putting a couple coats of mildew-killing paint on it.

So far, so good. I got a later start than I originally intended, but I’m making progress. There’s something about Sunday that puts me in a state of revolt, if I’m expected to do work of some kind.

Then again, it also pushes me to get the job done quickly. And take frequent breaks. The fumes from the paint are a problem for me today. They haven’t always been, but I’m tired. I think my resistance is down.

So, I’m taking a break for a little while. Maybe I’ll go for a walk in the woods, while I can.

By the time I get back, the first coat will be dry, and I’ll be able to finish the rest.

I just wish it weren’t getting dark at 4:00.  I’m not ready for this. Complain, complain, complain. The fatigue talking again.

It’s not too bad, though, all in all. I’m flying solo today, as my spouse is on a business trip. That frees me up to rattle around and make all the noise I like. It also makes things otherwise very, very quiet. Both things are fine.

I do miss them, but it’s nice to have a day to myself, now and then, to get things done and not worry about the racket. When I am tired and my balance is off (which has been the case for several days, now), it’s hard for me to concentrate on what I should be doing AND keeping upright AND keeping the noise to a human level.

When I’m in fine form, like today, I can end up crashing and smashing a whole lot of stuff. It’s startling, to say the least. I don’t envy anyone who has to deal with that😉

Anyway, while it’s still light, I’ll go for a walk. It will air me out and clear my head. I won’t be able to use the shower for about 24 hours, so that means I’ll shower at the gym at work tomorrow morning. Ah well… it keeps things interesting.

But I could really use another hour of daylight today…

Onward.

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

It's ALL connected
It’s ALL connected

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

But it can also seriously mess with your physiology.

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

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

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

 

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.

Migraines have been under control

trepanning - migraine relief?
Fortunately, I have a better solution than this!

Summary: Controlled breathing seems to be helping me control my headaches, especially my migraines. After years and years of having constant headaches, I believe I’ve found a way to control them. This is good news, because constant headaches are no fun, and they kept me from really living my life.

I’m happy to report: My migraines have been under control – The headache part, anyway. Last week, I had a weird couple of days, where I was definitely altered… very strange feelings, colors brighter and higher contrast, everything feeling like it was moving in slow motion… I didn’t take any meds, because I didn’t have a headache, and I wasn’t actually sure if it was a migraine, or if it was just one of those things that comes up.

I will occasionally have bouts of dizziness (well, not occasionally… more often than that). And I will have my bouts of clumsiness and feeling spacey. Especially when I’m under pressure, feeling emotional, or I haven’t slept, it can be a problem, and with the last days of my current job winding down, all three of those boxes get checked off.

So, I just let it ride. And Saturday evening (after my nap, ironically), the headache set in.

But to be honest, it wasn’t nearly as bad as it has been in the past. Certainly not as bad as when I was cutting back on my coffee and went through that miserable withdrawal that lasted for days. And I actually have been feeling pretty good, without the constant headache. I think I must be doing something right.

The thing that seems to have moved the needle, is that I’m actively working with controlling my heart rate and blood pressure with controlled breathing. I can bring my heart rate down from 93 to 73 in a minute, using my technique. And I practice this on a regular basis, sometimes because I need to, sometimes out of curiosity.

It seems to be helping my migraines.

Now, the thing to be careful of, is thinking that one thing leads to another, when there could be other issues happening, too. I have also drastically cut back on caffeine, which supposedly helps headaches. That’s ironic, because I always heard that caffeine will help a headache, and to be honest, the times when I have been really struggling with the pain, having some dark chocolate or a bit of strong coffee really seems to help. If nothing else, they make me feel human again. I’ve also been exercising more regularly — at the very least, riding the exercise bike for 15-20 minutes each morning, and usually lifting light weights to boot. That could certainly be helping.

The thing is, I couldn’t exercise regularly for a number of years, because the headaches were keeping me from it. Nowadays, I still do get little headaches when I exercise, now and then, but when I do my controlled breathing and relaxation, they go away. Pretty amazing, really.

This is how it goes for me, these days:

Exercise: I get on the exercise bike and ride. I set the resistance to about medium, because I don’t want to overdo it. I’ll bump up the resistance and push myself, now and then, but when I do, I will sometimes get a little headache… which in my experience can turn into a big one — and big problems for the day. I back off on the resistance and check my pulse on the handlebars (there’s a pulse monitor there). If it is really high, I will control my breathing and bring it down. And the headache goes away.

Emotional Upset: My spouse and I have always had a “fiery” relationship. Our discussions sound like all-out fights to people who don’t know us. Our actual disagreements literally make other people run away. It wasn’t a problem for me, when I was 15 years younger (we’ve been together nearly 25 years), but in the past years, I’ve been getting more upset by these kinds of exchanges, and I’ve noticed a connection between the upset I feel and screaming headaches that come on — especially migraines. Sometimes I get so upset, I get an 8-out-of-10 headache (complete with light sensitivity, noise sensitivity, sensory issues, balance problems, dizziness, and nausea) that lasts for days. So, I need to find a way to deal with it. Now, when I get upset and I feel something coming on, I immediately “disengage” and focus on controlling my breathing. Sometimes I will go to a dark room and block out all sensory input. I can usually feel my blood pressure and heart rate going way up… but after a little while (maybe 15-20 minutes) of slowing everything down, I can “rejoin the living” and have a logical conclusion to what was probably a silly argument, to begin with. And no headache to speak of.

It’s pretty cool.

And it’s a relief.

Because now I feel like I can live my life without being in constant fear of headaches and migraine symptoms, etc.

Of course, there’s the other host of symptoms that come with migraine. Like feeling like my left side is carved out of a block of wood. But that’s also diagnostic. It tells me I need to take better care of myself, rest, get something decent to eat, and take the pressure off.

Bottom line is, I figured out a way to manage my migraines, and I’m pretty happy about it.

A good night’s sleep… and a new direction

zelinsky-eye-info
Eye-opening info on the visual systems and the brain-body connection – click to read this

I had a very taxing day, yesterday. In the midst of telling my manager that I was leaving (and having them freak out, albeit in a professionally muted way), and also trying to get work done, so that I can wrap everything up for folks before I go, I had the constant interruption of people stopping by or sending me messages or emails or whatever, so that they could find out what was up… process… congratulate me… etc.

Everyone has been really great about it. Of course, we’re only in the early stages of grief.

Denial… Anger… Bargaining… Depression… Acceptance.

We’ve only gotten to the first stage (though I know everyone handles loss differently, so the order can be mixed up), and I’m expecting anger, bargaining, and depression to ensue before long.

As long as I’m prepared, that’s the main thing.

The issue is, all the interruptions, all day long, the emotion, the storytelling — getting the sequence of things correct, so that I’m telling a consistent story and don’t sound like I’m lying to people — it’s exhausting. Trying to focus, while people are all worked up and want to talk… good grief, it’s tiring. And by the end of the day, I was wiped.

Which is part of the reason I burned supper… then had a minor meltdown when my spouse started yelling at me… then got all bent out of shape about that signalling the permanent end of my marriage, because I just couldn’t take being yelled at when I’d had such a demanding day…

I felt a nasty migraine coming on, and retreated to my bedroom with the lights off and focused on my breathing and slowing my heart rate, to head the migraine off at the pass. It worked. And my spouse came to find me to talk things through because it made no sense for me to go to bed angry. And then I went downstairs and watched “Happy-ish” which is my new favorite show, because there are so many parallels between the main character and myself.

In the end, we finished the evening on a much more normal, loving note. I got a good night’s sleep and woke up to a glorious day. Glorious! as my elderly aunts used to exclaim, when I was a kid.

I miss those venerable elders. I miss them a lot.

Anyway, while reading The Ghost In My Brain, I found a lot of similarities to the author’s experience and my own — the nausea that sets in when people are talking to you… the balance problems… the fact that driving is actually okay, when you’re not cognitively drained (it’s actually a relief)… preferring blurry eyesight to glasses that make objects sharper, but don’t address the full spectrum of vision issues… and having everything be in slow motion when talking, because there are all sorts of additional processes that need to take place in the background, while you’re working through what someone is saying to you… and then there’s the trouble planning.

The author talks about how he had regular appointments with a Dr. Miller to work through daily logistics with TBI, and he was often not 100% sure he was supposed to be there. I used to do that all the time with my neuropsych, for a number of years. I was pretty sure I was supposed to be there, but I wasn’t 100% confident, so I just went — and if I was supposed to be there, then that was cool. If I turned out to be there on the wrong day, I was prepared to turn around and go home.

Fortunately, we always had appointments on Tuesday afternoons, so it was consistent. If it was Tuesday, then I’d go to their office and wait in the waiting room. Sometimes I would sit in the waiting room for quite some time, if I got there a little late. I wasn’t sure if I should go knock on the door, or if they would come out to find me. Eventually, I got in the habit of knocking on the door — the thing is, I now realize, I would avoid it, because it hurt my ears when I knocked. Driving an hour through evening rush hour traffic really took it out of me, so my hearing was on HIGH. I’d just suck it up, though, and knock. The discomfort of the knocking, though, was actually preferable to the auditory shock of hearing their door open suddenly. It always startled me, because they have one of those noise-dampening brushes across the bottom of their door, and it makes a really loud noise when it opens.

At least, it’s loud for me.

Anyway, all the discomfort aside, I’m considering following up with a neuro-rehabilitative optometrist to see if I actually have vision issues that are making my symptoms worse. After I was hit in the head with the rock when I was 8 (a year earlier I’d fallen down a flight of stairs and temporarily lost the ability to speak), I developed double-vision (diplopia, I think it’s called). I was taken to an eye doctor who prescribed reading glasses, and I’ve worn them ever since.

In recent years, I’ve actually opted for not wearing my glasses whenever I can. It’s more comfortable for me. My glasses help me see things in the distance just fine, but I prefer to do without them. Sometimes I will even drive for short distances without my glasses (if no one is around and the road is empty and runs straight ahead). I have been thinking it’s because I just can’t stand having them on my face… but now I’m wondering if maybe they are actually making it harder for me to see, because they are not allowing my eyes to get the kind of light I need to get.

Reading The Ghost In My Brain, I am finding so many similarities — especially with how vision and balance are so closely connected — that I think it makes sense to follow up with my vision. Just get my eyes checked out for that other aspect. Apparently, there are three ways our eyes help us — regular straight-ahead vision, peripheral vision, and then connections with sleep-wake cycles, balance, hormones, neurotransmitters, posture, etc.

And I wonder if maybe so many of my logistical problems — which I have never been able to articulate well to anyone, because they make no sense to me or anyone else — might have to do with vision issues. From the time I was 8. So, for over 40 years. If this is true, and my visual systems have been impacted, then it makes a lot of sense why I perform so high on visual-spatial tests. I’ve had to develop more abilities to offset the deficits I got from those TBIs. Add to that even more blows to the head, and you’ve got yourself quite a recipe for a very interesting life.

Additionally, I’m looking into the Feuerstein Method, which is a way of “learning to learn” — finding your strengths to offset your weaknesses, and restoring functionality that I really need to have, but which has eluded me.

My neuropsych has been incredibly helpful to me, in terms of helping me sort through all the psychological clutter, helping me retrain my executive function and beefing up my gist reasoning. The thing is, they take that approach, which is psychological, and the physiological aspects fall by the wayside. At least, that’s how it seems to me. And anyway, I do a really poor job of communicating everything that’s going on with me, at times, because I have a long drive to get to them, at the end of usually challenging days, and I’ve been so stressed out over the years with all my old sh*tty jobs, that I haven’t had as much bandwidth as I’d have liked to.

I do a danged good impression of someone who’s got their act together. Because I have to. If I don’t, I can lose my job. I can lose my house. I can lose everything, and my spouse will lose it all, too. So, keeping up the appearance of being on top of everything is my top priority.

Of course, that can backfire, because then you can’t always reveal the areas where you need help, when someone is there to help you.

But anyway, that’s another blog post for another day.

Right now, I’ve got some new lines of inquiry to follow, and that’s super cool. I also have some exercises I can do to help me — Designs for Strong Minds (the site of the rehab person who helped Clark Elliott retrain his brain) has a bunch of exercises at http://www.dsmexercises.com/, and I went ahead and paid the $13.99 for the full suite of exercises. It’s easier and quicker than trying to piece things together for myself. Plus, it’s a deal, because individually, the collections of challenges are $9.99 each.

Even the most basic ones pose some issues for me, although I’ve been scoring 87% or better. A number of my choices have been lucky guesses. I won’t be happy until I can score 100% without doubts. Then I can move on to the next batch. There are exercises for NASA rocket scientists, and other pattern matching things.

And that reminds me about my Dual N-Back training I used to do regularly. I need to try that again. I was doing Dual N-Back training when I was learning to juggle. Now I know how to juggle, and I wonder if my Dual N-Back training is “sticking” as well.

New tests for a new day.

Interspersed with lots of rest.

I’m pretty happy about the progress I’ve made in my life, relative to where I was 10 years ago. Relative to where I believe I could be — and should be — I’m not happy. I know I can do more and I know I can do better. Getting there is the challenge.

And it finding out if I have vision issues that can be fixed, could be an important next step.

Onward!

To medicate or not to medicate

Choices, choices

I’m doing my leg lifts a little differently this morning. I’m going slowly, and I’m not holding onto something for balance, unless I need it. I’ve been having balance problems, lately. Or rather, my usual balance problems have been more of a problem, lately. I’ve almost fallen a number of times in the past few months — while standing up from a table and having to catch myself before I hit my head on the table and/or a nearby chair and bookcase… while starting to walk down a flight of stairs… even while just standing.

So, after talking to the neurologist and my neuropsych and making an effort to notice when I’m dangerously off balance, I’ve realized this is actually an issue. And I need to get it checked out.

So, I’m going to get some autonomic system testing done. I know that it’s been an issue with me, lo these many years, and I need to collect some actual data about it, rather than relying solely on my own observation — which tends to be spotty, because of my Swiss-cheesey memory. If I don’t write things down, it’s like they never happened. And I can’t always take the time to write everything down.

It would just start to get a bit hypergraphic, methinks.

Anyway, over the weekend, I also took some Sumatripan (generic Imitrex), which did knock out the migraine I felt coming on. But it also left me feeling drugged and dopey. I felt “off” all weekend, like I had chemicals in my system. It wasn’t like I was looking for that. I will take meds when I have to. The thing was, I was definitely feeling “synthetic” for a few days. Monday I started to feel better, but Sunday it was like I was in a druggy fog.

I can’t remember if I took the migraine meds before or after I had my dizzy spell, but as it turns out, dizziness is one of the reported side-effects of Sumatriptan. And when I looked at the list of side-effects with my neuropsych yesterday, it turns out that it’s probably not a great idea for me to be taking it, due to possible effects on my autonomic system.

See, here’s the big issue I have with meds: They are dispensed from on high, and unless I have access to someone with an advanced database of indications and contraindications, as well as sensitivity to my situation and an understanding of how things might affect me, I’m pretty much a guinea pig for finding out what’s going to happen with me. And doctors (in my experience) routinely prescribe things that they don’t fully understand. They figure they’ll have me try it out and see — essentially turning me into a science experiment.

I’m extremely sensitive to medications, but nobody seems to take that seriously. Meds disrupt my attention and concentration with the feeling they often give me. Unless I am completely laid out by illness, such as bronchitis or some other major infection that I can’t fight off on my own, the cure can be worse than the illness it’s supposed to fix.

I need to figure things out up front as much as possible, not just find something that’s worked for other people, give it a whirl, and then have my life disrupted by exciting discoveries.

Not when I can take another route to dealing with things.

So, as for the autonomic testing, both the neuro and the neuropsych are thinking I could take a pill to deal with the situation. Please. Another medication? If there is any way on God’s good earth that I can find another way to strengthen the underlying structure of my system, and build myself up that way, I’ll do that. I mean, seriously. Say I do go on a med for my balance. Is that going to help me strengthen my body to maintain balance better? People often have falls — especially later in life — because their systems are weakened, they don’t have the muscular control to catch themselves, and their reactions are slowed. If I use a pill to fix my issues, then where is the incentive to strengthen the underlying “framework” that keeps me upright?

The direction I want to take with the autonomic testing is NOT pharmaceutical. It’s structural. I don’t want additional chemicals coursing through my veins, when I can offset the issues I have with strength and balance exercises, eating right, and getting adequate rest. I need to approach this systemically, not have an intervention which may actually weaken me.

It’s pretty irritating for my neuropsych and my neuro to be so pill-happy. I’ve been on this rehab quest for about 7 years now, and my neuropsych says they’ve never seen a recovery like mine. Okay, out of all their other patients, how many of them are on medication?  I’m not. I refuse to be — especially for things that I can address and strengthen myself — or compensate for (by strengthening other aspects of my neurology).

It’s frustrating and alienating for them to be so eager to prescribe meds. Maybe they just want a quick way to relieve suffering. That impulse is noble, but the pharma aspect of it doesn’t sit well with me.

Anyway, we’ll see. I know where I stand, and I can’t let them bring me down.