Not myself, this past month or so

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

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

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

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

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

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

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

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

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

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

I guess it’s time to find new ones.

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

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

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

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

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

Maybe I have. Maybe I have.

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

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

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

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

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

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

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

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

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

My new mantra: Screw it. Onward.

What really gets to me, this time of year

And that's what I have to say about that - to some folks
And that’s what I have to say about that – to some folks, anyway.

I had an epiphany yesterday while shopping for supper. My trip to the grocery store was irritating and tiresome. Everywhere I turned, there seemed to be something or someone in my way. From the drivers on the road, to the people in the supermarket, it was like a maze getting around.

This time of year is crazy, and if I’d had better judgment, I wouldn’t have been out, period.  But I was still sick, still not thinking clearly, and anyway, I was on a mission to pick up my lumber supplies to fix my stairs, and I just needed to get up and out of my head, anyway, so what the hell?

Anyway, despite being foggy and disoriented, I managed to find the cut of lamb I was looking for. {Whenever my spouse is away, I make myself a dinner of lamb — cooked in olive oil in a pan with onions, mushrooms, yams, and green beans – and salt to taste. That’s my treat, since I love lamb, and my spouse hates it.} It took me several tries of walking up and down the meat displays, before I finally found the lamb — but now I know where it is for next time. And I found a yam that would work perfectly for just one person.

I forgot other things I needed to get, but after 10 minutes inside, I just wanted to get out.

The trip to the store felt like an onslaught — too much light, too much sound, too much Christmas. Everybody being herded (speaking of lamb) towards additional purchases… even as my bank alerts me with a text that my account is below the level it should be.  All the people milling around… it actually wasn’t as bad as it could be, but for me on that day, with my senses going nuts and this sinus infection messing with my thinking and reaction time, all I wanted was to get out of there.

I finally did make my way to the front cash register, feeling and acting genuinely impaired. I was clumsy and pretty much non-verbal, and the cashier had to remind me what to do with the keypad, which I was poking at like an idiot. I paid for my $5.87 meal, and headed for my car, steering a wide circle around the Salvation Army alms-gatherer, who kept trying to get my attention. I don’t support the Salvation Army, because it’s a well-disguised religious and political organization (some call it a “sect”) that doesn’t tell everyone what they really support. I can’t agree with many points of their agenda, and I certainly don’t agree with them hiding it from people who have a handful of change to drop in the bucket. It really irritates me that the general public (who may not know what they’re all about and may not agree at all with what they promote) is every so sweetly pressured into donating to them by kind-looking people with bells.

I was in a pretty sour / disaffected mood, by the time I was done. And I headed to my car feeling slightly guilty about being so “bah humbug” at this time of year. I really wanted to get into the spirit of things, but I was just so underwhelmed with everything around me, so put off by the onslaught, so tweaked by… seemingly everything. At least I’d parked away from most of the cars, I figured. I was in no shape to be navigating between closely positioned vehicles in the state I was in.

I had just finished putting my food in the back of my car, when another driver zoomed past me into the empty space beside my car. They couldn’t have passed more than 6 inches away from me, and if I’d been feeling better, I would have been alarmed.

But I had  no energy for that. It was just one more irritation to grab my limited attention, so I just dismissed and shrugged it off and got in my car. The other driver put their car in park, and just for the hell of it, I looked over at them with a smile. I was feeling so contrary, I wanted to be pleasant, even in the face of the near miss and my total irritation with everything that had happened that day.

The other driver looked over at me sheepishly, then smiled back. A moment later, they looked over at me again with another quizzical smile, and I smiled in return. Then they got out and walked around their car to mine, and I rolled down the window. I figured they wanted to apologize, maybe, for nearly creaming me, and I was in a defiantly generous mood, so I was about to let that be what the exchange was all about. With so much bullshit going on in the world, these days, the most radical, contrary thing I could do, was be kindhearted and generous to someone who’d nearly taken my legs off.

There really wasn’t any need for an apology, and the other driver sensed it, somehow. They said, “Oh my God – how is it the supermarket?”

I said it was actually fine, that I got in and out in no time. I didn’t even mention the close call. Why waste my time?

They said they thought for sure it would be crazy inside, what with all the cars, but maybe it was everyone shopping in other stores.

I said I thought that was probably the case — that if you knew what you were looking for in the grocery store, you’d be able to get in and out. It really wasn’t any more busy than it is on a weekday night.

We shot the breeze for a few more minutes, then we went our separate ways. And both of us felt that much better. Because we’d actually had a real conversation between two real people — not the kind of superficial, crazy-busy rush and push of the holiday shopping experience. For a few minutes, we’d been able to be real human beings with each other, sharing an experience that both of us couldn’t friggin’ stand, that made us into people other than our best selves. And for those few minutes — all made possible by a near miss — we got a much-needed break from all the B.S. of this season.

And as they disappeared into the crowd, and I pulled away to go home, I realized that my malcontent and frustration and disaffection has nothing to do with Christmas, itself. It has nothing to do with the season or the time of year or the shortening of days or anything like that. It’s not because I’m in a BAD MOOD, or that I feel “bah humbug” about everything. It’s not because I’m sick, or I don’t have enough money, or I hate life or my job or politics or anything else.

It’s because at this time of year, especially, I really want to have some real contact with real people, and just put aside all the busy-ness. I want to be able to have a real conversation with another human being about something that is real and genuine. I get upset and disaffected and grumpy about the bullshit. All the commercial crap, all the bogus posturing, all the appeals for financial help at the end of the year. All the nagging and pleading and posing… it just makes me insane. It’s a waste of my time, and I resent the very existence of it.

So, it’s NOT that I’m not in the Christmas spirit. I actually am — very much so. The thing is, I’m in a real Christmas spirit, and I have no patience for people who aren’t willing to be real, and businesses and causes that make themselves out to be something that they’re not. I resent feeling like people are constantly trying to trick me, and I detest all the spin that goes on in the news. I get sick of being lied to, especially at this time of year, and I resent being forced to work harder at my life, because retailers can’t seem to offer anything of sufficient value during the rest of the year, to make their businesses solvent. I’m sick of the deceptive cycles of holiday debt, followed by months of struggle underneath the added burden. And I’m sick of a system that makes it all possible — even mandatory.

I just want my freedom. But apparently, that’s too much to ask. And the sight of the plight of so many people who are trusting others to point them in the right direction, just weighs down my heart.

So my lack of Christmas cheer is actually not a bad thing. It’s a sign that I’m alive and kicking, and I have precious little wish to live less than a fully true life. I have no patience for spin and obfuscation and masking agendas to sign on adherents, and I have no wish to perpetuate it.

If someone wants to engage me in a real conversation about real things, and be genuine and human with me, I’m all for it.

But if you’re just dishing up more steaming B.S. on a silver platter, you’d best keep your distance. To you, I say, “Bah humbug!”

Mixed day. Half day. Full day.

Well, there it is. It’s been a full day, but I got maybe half of what I’d intended done.

Of course I did. I am notoriously bad at estimating what I’ll be able to accomplish in my weekend time. For some reason, I always think I’ll be running at the same pace I do during the week, but weekends take on a pace of their own, so by 3:30 or so, I realize I estimated all wrong, and I settle in to just having a weekend.

Originally, the plan was to run some errands in the morning, mail out some Christmas presents to family, help my spouse get ready for a day trip they were taking with friends, do some work around the house, run some more errands, clean a little bit, take a nap, make some supper, set up the Christmas tree, and get a head start on another job I need to do tomorrow.

That’s almost how it went. Except for half of it. While doing one set of errands, I realized that I needed to run to the big box home improvement store and pick up a piece of lumber to patch a hole in the stairs of my house. I’ve had workmen step into that gap and nearly hurt themselves. And just the other day, another one broke  through the patch I created 10 years ago. I guess 10 years is about the lifespan of that particular patch.

I also needed to pick up some supper, so I ran to the store and got my supplies, along with some caulk. I stopped to ask some employees at the store about where to find caulk, and when they asked me what it was for, I couldn’t get the words out. I could see the pictures in my head, clear as day, but I couldn’t pull up the words “garage” or “trim”. I just stood there like an idiot, gesturing in mid-air with one hand, while I held the 2×6 in the other.

“It’s for outside,” I said. “Outside”. That was the best I could do. The lights were so friggin’ bright overhead, the space was TOO BIG, TOO LOUD, TOO MUCH, and I was still feeling sick — still am, right now.

Fortunately, they just told me where the caulk was (right behind me – d’oh), and they recommended the silicon type. I need to fill some gaps in the trim of my house around the garage doors, because mice keep getting in that way. I’ve seen them slip into that gap many a time, and I’ve had it with them. They’re dead.

I got home in one piece, trimmed the end off the lumber, patched the hole, and then set a bunch of mousetraps in in places where those little bastards tend to show up. When it gets cold outside, they come inside. And until I get those gaps filled (I need to wait till it’s warm and dry before I use it — it’s supposed to get that way, next week), it’s “killing time” for those little bastards.

One place I set the traps is along a veritable “mouse walkway” in my basement. There’s a high ledge along the outer wall where I’ve trapped them before with live traps. Once, I caught four of them overnight. Now I’m not bothering with live traps. They’re dead. Dead, I tell you. The thing is, with my snap traps, if they snap, they can go flying, and then they’ll end up God-knows-where, and I might not find them till I start to smell the little decomposing carcasses. It’s happened before.

So, I got all clever and tied some string between the traps and nails in the overhead joists. Now, if the trap goes off and flies off the ledge, it will just dangle there, instead of flipping into or behind a nearby object where I can’t find it.

Problem solved. We’ll see how that works.

After that, I took a long, hot shower and lay down for my nap, setting the clock for a couple hours later. I must have slept right through the alarm, because no less than 3 hours later, I woke up on my own. I guess I really needed the sleep.

I had a late supper, and then talked to my spouse who lost track of time and ended up staying four hours longer than expected. They’re on their way home. And I am done for the day. Tomorrow’s another chance to start again, which I shall do.

Onward… to bed.


And in the end, we learn…

Some days you nail the holidays, sometimes the holidays nail you.
Some days you nail the holidays, sometimes the holidays nail you.

This trip to see family for Thanksgiving has been chock-full of lessons. I’m still sorting them out. Some of them, I may forget, by the time I get home, so I’ll write them down here, and come back to them later.

  1. Having a perfect life is no guarantee of happiness.
  2. The people who appear to be the most powerful and privileged are often suffering under terrible burdens. Sometimes it’s their very burdens that drive them to be more poweful and privileged than anyone else.
  3. People who are innately talented and sharp, don’t always end up in the best circumstances. People who work-work-work their asses off can accomplish great things.
  4. The people who seem to be the most wealthy, are often very poor in their own hearts.
  5. It helps if you’re attractive and have a ready smile.
  6. People are surprisingly judgmental of others who are simply different.
  7. No matter where you look, there are people in some kind of need.
  8. People dislike having to question their most fundamental beliefs. They’re a whole lot easier to get along with, if you pretend to agree with them — or at least don’t judge them.
  9. Most people I know are very set in their ways about how women should act, and how men should act. Come to think of it, they’re very set in their ways about how “normal” people should act.
  10. It usually pays off to keep your head about you and maintain a cool demeanor.
  11. If you can’t do #10, step away. Give it a few minutes.
  12. Getting enough sleep, drinking enough water, and eliminating regularly, will do wonders for your interpersonal relationships. It’s all about the flow…
  13. Life is short. Be kind.
  14. Sometimes, all it takes to get people back on track in mind and spirit is a long card game.
  15. Winning a hand of cards is restorative. Losing gracefully, four hands in a row, is ennobling. Having a good laugh at yourself being a sore loser is good for everyone at the table.
  16. Many things are awful. But they pass. It makes no sense to let awfulness get hold of you and trick you into thinking it will last forever.
  17. Everything looks easier in hindsight.
  18. All those old resentments I held against my in-laws for having so much more than me, and providing so much more to their kids, now pales compared to the peace I have in my life. They don’t have that peace. Their opulence is not saving them.
  19. My “country hick” insecurities around my in-laws are still there. I still feel like an idiot when I am around them.
  20. However, I have not understood the source of my insecurities, till recently. I thought, for years and years, that I was less intelligent than they, and I was too slow. As it turns out, by the time we reach their home, I am usually exhausted from driving, my sensory issues are out of control, after dealing with my own family, and I am literally not myself. My ears are ringing, I’m slowed down by fatigue, my noise and light and smell and touch sensitivities are all on HIGH ALERT, and I can’t understand what anyone is saying because the television is usually blaring. It’s a total onslaught of sensory overload, which my in-laws have to immerse themselves in, because they are so deeply unhappy as they follow all the rules, and they need something to dull their intense pain.Their coping mechanisms make it very difficult for me to function. It’s not me, that’s the problem, it’s the environment.
  21. My in-laws are trapped in a “perfect” life, doing things they never really questioned, and their difficulties with that are simply too much for them to handle. They’ve decided to be happy, simply being successful and popular, everything looking good on the outside, but deep down inside, being so sad and lonely.
  22. My in-laws cannot accommodate people who are different. They get disgusted with people who aren’t functioning”normally” due to invisible conditions. They don’t understand how people can have limits that are difficult to explain, and you don’t live up to their specific expectation of how you “should” function, they can get pretty mean-spirited. Their intentions are good, but their follow-through sucks.
  23. My parents are surprisingly resigned to getting old and infirm. Well, my father is, anyway. He’s giving up and giving in… I read some things he wrote, and it makes me sad that he’s not fighting it more. He’s got a lot of years left in him, but he’s talking and thinking like he’s going to die before long. His handwriting has gotten noticeably worse over the past year. I think his diabetes is catching up with his brain function. And I’m literally not sure when/if I’m going to see him again.
  24. My family is much better at accommodating individual needs and limitations, than my in-laws. My in-laws think a pill fixes everything, while my family believes community fixes everything. Small wonder. We’re all a bunch of farmland hayseeds, here, and there are plenty of “neurodiverse” people in our midst, due to brain injuries, congenital defects, poor medical care, etc. There are a LOT of “different” people here, so folks know how to handle them, for the most part. And the social rules here are so strict, everybody knows what they should be doing in any given situation, so it makes it possible for people to function, without thinking much about anything. It’s interesting.
  25. Holidays are borderline hell for me. There is TOO MUCH ACTIVITY, and the expectations are too high. It’s TOO LOUD. Too many smells and changes in routine. I dread it. Every bit of it. Including all the parties and social activities. And the holidays are not easy for my spouse, either, who also has sensory issues but is less aware of them.
  26. Both of us struggle terribly, at times, so it’s important for me to keep my act together, so only one of us is going off the rails at the same time.
  27. I am so happy to be driving home today. It’s a full day’s drive, and we’re going to take our time. Get out and stretch. My left hip is killing me. Not enough exercise.
  28. I’m glad we made this trip. And I’m even more glad to be going home.

And now, it’s time for a walk.  A long, long walk, before I get in the car and sit for 9 hours.

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.

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.


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.



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.