Blah… blah… blah…

Maybe it’s just the summer, but I haven’t been getting much of anything done, lately. My fire to accomplish at work has faded considerably, and I’m sort of slipping into the doldrums. I’ve been starting out the day with exercise, which is good… but a funny thing is happening, now that I’m waking up more in the a.m.  It seems that that old edgy drive has dulled considerably, and while I’m not as prone to hounding myself over every little detail, I also don’t feel particularly called to Get Things Done.

Is this what it feels like to be “normal?” To not have constant agitation? To not be perpetually on edge over some indeterminate goal? I wonder…

Well, anyway, at least I have been sleeping more, lately. I’m learning how to relax. It sounds odd to me, to say it, but I have had to learn how to relax — doing deep breathing, teaching my body to let go of the tension it’s holding, counting breaths, letting my muscles relax, allowing my body to be supported by the bed, when I lie down to sleep. Such a simple, elementary thing… that I couldn’t do very well at all, until a few months ago.

Well, at least there’s progress…

Actually, come to think of it, I have been getting a lot done — just not in that old frantic-stressed-harried way that used to drive everyone around me nuts. I’ve been doing some reading on neurofeedback therapy, trying to get it straight in my head — the different brain wave patterns, etc. I suspect there may be ways to do this on my own, without needing to seek out expensive therapists who don’t take my insurance. Well, we’ll see.

I’m not feeling particularly driven to pursue it. It would be interesting to know more, but I can wait. There are lots of other things I can do to occupy my attention quite well — some of them having to do with making a living, which is something I mustn’t neglect, no matter now relaxed and un-motivated I am.

Now, if I can just find a way to get the intense ringing in my ears to stop. It’s been particularly loud and obnoxious, and it’s been going on for days, and it’s driving me nuts.

I probably just need to sleep.

I’ll see….

Sleep mask + earplugs = magic

I actually slept for seven hours last night.

Amazing.  I haven’t slept that long without being completely and totally exhausted/depleted/at the end of my rope in quite some time.

I’ve been sleeping in the guest bedroom for the past few nights, so I can sleep through the night without being woken by my partner sitting up late reading, snoring, coughing, or otherwise being human. The only problem is, the guest bedroom has a great view of the back yard, and the back yard is surrounded by trees, and those trees are filled with lively birds that love to awake and sing-sing-sing at 4 a.m. I typically wake up around 4:30, when I sleep back there. I may be able to sleep uninterrupted all night, but the morning is a problem.

So, sleeping in the guest room isn’t necessarily the most sleep-conducive thing to do, unless I go to bed at 8 the night before, which is out of the question. My body just won’t do it. Nor will my mind.

But last night, I had to do something to take the edge off my exhaustion. I haven’t been sleeping very well at all for weeks, now. I have been getting 5-6 hours a night, which is just murder on me, because it coincides with some intense deadlines at work. Not only does the exhaustion take a toll on my cognitive functioning, but it also erodes my mood. Whereas I’m usually pretty “up” and can-do, and my outlook on life is quite open and ready for just about anything (within reason), when I’m over-tired, my mood just spirals down, and I end up in very, very bad places, where no amount of reason or motivation will drag me out.

I noticed it especially last night

I was really feeling good all day, until late in the evening, when I was going to bed. All of a sudden, I was melancholy and blue, feeling sorry for myself and feeling lonely and afraid and overwhelmed. I just couldn’t handle much of anything, and I started to get mired in that sad-sack poor-me swamp from which no good things come. I was starting to get intensely depressed and feel like there was no hope for me at all.

I started to think about my family and how we just don’t connect. I started to think about my new therapist and get down about how the relationship I have with them is an artificial one and no matter how I may feel we’re connecting, they are essentially a professional consultant, and — for my own sake — I need to keep the relationship somewhat arms-length. I started to think about my old therapist, and wonder how they’re doing.

I was spiraling down into that place I’ve often “gone” in therapy… that place where my old therapist loved to “camp out” and plumb the depths of my past, to see what terrible hurt had been done to me. And just as it used to make me really uncomfortable to delve into all that — not because I’m afraid to explore the places where I’ve been hurt (I’m only too happy to do that at times), but because they were making flawed assumptions and reaching inaccurate conclusions about what caused that depression, what was pulling me down, what I needed to deal with.

I can think of many, many instances where I spent a whole hour hashing and rehashing crap that was dragging me down, only to get all turned around and more frustrated… then I had a good night’s sleep, and everything was miraculously all better.

Seriously. I’m not just making this up to make the psychotherapists of  the world feel inadequate. The main problem wasn’t that someone was mean to me when I was ten. It was that I hadn’t been sleeping.

Fortunately, I recognized that I was going there, last night, as all the thoughts and fears and regrets tumbled around in my head like puppies in a basket.

Thankfully I had the presence of mind to notice it AND do something about it

“This is ridiculous,” I said to myself, as I sat in the bed with my journal, ready to write some maudlin entry about the day. I had had such a great day — clipping along, getting things done, making good progress… only to crash at the end. I could tell very clearly that I needed to sleep, and I knew that I needed to do something about being woken at 4 a.m. by exuberant birds.

So, I pulled out a sleep mask and earplugs I picked up a couple of months ago. I had tried to use the earplugs before, but they felt strange in my ears, and I hadn’t tried again. Last night, I was beyond caring how they felt in my ears, and I fit them in as far as they could go. I also found an extra fan and turned it on low — to circulate the air in the room and to drown out background noise. Then I pulled on the sleep mask, laid back, and counted my breaths that were echoing loud in my ears.

One of the problems with wearing earplugs with me, is that it makes the tinnitus louder. I have constant ringing in my ears, which gets almost deafening when I stop up my ears. It’s the craziest thing, and it drives me nuts. But last night, I was in no mood to care. I just laid back, focused on my breath, and dropped off to sleep.

And wonder of wonders, I actually slept till nearly 6 a.m. A record for me lately.

And I’m feeling great. Really ready to take on the tasks ahead of me today and make some good progress. That’s a good thing. Because today is D-Day for this project. Deadline Day. And I have to be sharp. Dullness is not an option.

Tomorrow I’m going to try the sleep mask and earplugs again. Little by little, I’ll work my way back to being able to sleep. And take care of all these little niggling sleep-related problems as I go. It just amazes me, how much a good night’s sleep does for my mental health and overall performance. It’s like night and day.

Sleep matters

When I’m overtired, I become moody, can’t focus, have problems with thinking tasks, become over-reactive, and I have a tendency to melt down. It gets ugly pretty quickly, and then I have to work double-time to make up for what I’ve said and done and try to repair the havoc I’ve created around me.

But when I’m rested, I’m happy, hearty and whole, and no matter what life throws at me, I can handle it. I’m a productive, positive partner and team member, and people love to be around me. No obstacle is too much for me, when I’m rested. And no event I’ve experienced is too big to overcome.

Which makes me wonder how much unwarranted exploration I’ve indulged in, during past therapy sessions, when I was trying like crazy to understand why I was so depressed and down… why I was struggling so. I overturned all kinds of rocks and plumbed the depths of my aching soul… and was unable to come to terms with just about anything I found there.

But magically, when I slept and had enough rest, suddenly it all became clear. And I could not only deal with what I found, I was also able to use it and change it and shift it and have it be an asset, not a liability in my life.

And I wonder how many other folks have similar issues to mine — psychotherapy clients struggling with lots of stuff not just because of the nature of the events, but because they haven’t slept well in weeks, if not months and years… and psychotherapists themselves being thwarted in their work because the person across from them is physically incapable of a positive, healthy outlook on life.

If I were a psychotherapist…

One of the first things I’d do in dealing with my clients, is find out how they’re doing physically. I’d find out of they’ve been sleeping, how they’ve been eating, if they’ve had much exercise. I’d find out what their physical health is like, find out when they’re at their best and when they’re at their worst, and try to schedule time with them when they were at (or near) their cognitive peak — or at the very least, avoid seeing them when they were at a low point.

I wouldn’t waste anyone’s precious time, processing their “stuff” when they were over-tired or hadn’t been eating or exercising regularly. And I wouldn’t agree to see someone who wasn’t taking care of themself. I suppose I would start out with a new client who wasn’t in the best of condition, but if they persisted in neglecting their bodies and not getting enough sleep, I would drop them like a hot potato. Sure, they would be a natural source of unending revenue, but if I only took clients who were likely to need my help till the end of their born days, I’d be a pretty crappy therapist.

Most of all, I’d focus on the sleep thing. Especially if someone had sustained a TBI. Sleep deprivation makes you crazy, overly suggestible, unpredictable, and easily manipulated. Spy/intelligence agencies have known that for years, and they’ve used it to their advantage. But getting enough rest each night is one of the primarly building blocks of good health. If you don’t care about your health — mental or physical — then how much you sleep shouldn’t matter. But for me, it matters a whole lot.

And I look forward to getting more of it.

A Perilous Relief – The Physical Backdrop(s) of My Risk-Taking Behavior(s)

At the risk of sounding like I’m sitting around feeling sorry for myself, let me tell you about my physical experience. I don’t want pity, I don’t want clucking of tongues, I don’t want you to feel sorry for me. This is just my experience, and I’ve acclimated to it over the years. But I’d be lying, if I told you it’s easy…

To fully appreciate just how my risk-taking and danger-seeking constitute attempts to soothe my overworked physical/mental/emotional system, you’d have to understand just how anxious, sensorily overloaded, and painfully sensitive I tend to be. And you’d have to understand the impact that repeated injuries, including head injuries, have had on my everyday life. I have, in fact, sustained numerous mild traumatic brain injuries since age 7, the experience of which is consistent with my sensory and other physical issues. (See http://www.traumaticbraininjury.com/content/symptoms/mildtbisymptoms.html for a list of mild tbi symptoms.)

All my life, I have had issues with pain and handling sensory input. As a child, I had a hard time differentiating between different sounds, but at the same time, my hearing was very sensitive. I was very attuned to fine details, and I was highly distractable. I experienced touch as pain, which caused many forms of regular human contact to be uncomfortable, even painful for me. I was not very limber, I had trouble touching my toes, and doing exercises like somersaults was difficult. Cartwheels were out of the question. I was an active child, and I loved to climb and play and join in with games, but my coordination wasn’t always the best, and I was often picked last for team games in school.

I loved to play sports, but I didn’t have a very broad range of abilities. For example, I loved to play softball. I loved it so much, that I wanted to become a professional softball player, when I grew up. Baseball didn’t appeal to me, because having a small, white object hurled at me scared the bejesus out of me. I had a hard time judging distance and speed, and the larger, softer softball wasn’t nearly as frightening to me.

There were a couple of problems with my pro ballplayer aspirations, though. The first was, I had a hard time catching fly balls. When my dad would practice with me and hit flies to me, I couldn’t judge the distance to the ball, or I shrank away from it in fear. My preference was to let the ball drop and then pick it up and throw it to another player. But that kind of choice-making in a serious ball game would have cost my team dearly.

Playing the outfield was not an option for me.

Sliding was out of the question. I was to hesitant and too gawky to do it very well. And the pain that came afterwards was inhibitive, whenever I considered sliding.

I couldn’t react quickly enough on the spot to play shortstop.

My coordination issues kept me from being a very good baseman. My reaction time wasn’t consistent, and my ability to catch and tag wasn’t very good. I wanted to play shortstop, but it made me too nervous, and I couldn’t think and react quickly enough to make a very good player at that position.

I made up for all this by throwing myself wholeheartedly into the small range of activities I could do well. I had too much trouble with fielding and reacting quickly to be an all-round good player. What I could do, was play third base, hit, and be a good team captain. Third base was a kind of in-between position that was half-baseman and half shortstop, that let me be in the infield, but in a more marginal position. I was a pretty decent batter, and I also learned I could switch hit. I’m right-handed, so I always thought that I should bat right-handed. But I actually found that I was better able to bat left-handed. It just felt so much more natural to me. Most of all, I was a good team leader — a captain who led by the example of just throwing myself into the game and doing my best at any and all times, even if I messed up, now and then. I think, if anything, my spirit helped the team more than any amount of technical skill.

But still, it wasn’t easy to come to terms with the fact that I just didn’t have what it took to become a professional softball player.

When I was young, there wasn’t really anything like a diagnosis of sensory integration dysfunction or sensory perception disorders, and attentional challenges weren’t yet on the radar. All I know/knew was, I was immersed in a seething cauldron of sensory input and there was really no escape.

I’d like to say things got better when I grew up, but I can’t say that’s so. All I can say is, I’ve gotten used to these problems, which doesn’t make me very happy, actually. But there it is.

Below is a run-down of the persistent physical issues I’ve had to deal with most of my life, and that still plague me intermittently. I’ve tried to be as thorough as possible, so you can get an idea of the scope and intensity of my “sensory landscape.” These issues can range from mild to extreme, and they manifest with varying degrees of frequency. I do not experience all of them simultaneously, but many can appear concurrent with others.

Ringing in my ears (tinnitus)

I have a constant ringing in my ears. I’ve had this as long as I can remember. It used to drive me crazy as a teenager, but eventually I got used to it. It’s a high-pitched whine, not so much ringing — a very thin, reedy, penetrating whine “over” several other deeper tones. It rarely goes away. If there’s no ringing when I wake up, it usually starts by mid-morning. It’s worse when I’m tired and/or stressed and/or have allergies. It’s better when I’m rested.

Vertigo, Dizzy-ness, Light-headedness

I have occasional feelings of being “woozy” and/or losing my balance suddenly. Sometimes it can last for a day or more. Sometimes, when it’s really bad, it lasts for days — nearly a week, in the past. I have to be very careful that I don’t fall, when it’s particularly bad. Holding onto things, keeping myself rigidly upright and intently focusing my attention on something in front of me helps. Tactile activities help me focus — holding onto things, making contact with things around me, like fabrics and curtains, arms of chair, objects held in my hand. It’s much worse when I am tired, and when I have allergies, it’s worse. It gets better when I’m rested, but it usually takes at least a day or so to clear up, even when I am rested.

Balance (Vestibular) details (when they’re at their most extreme)

When I’m experiencing “vestibular challenges,” the whole world spins wildly around me… swaying and shifting. Every time I move, no matter how small the motion, I feel like I’m going to fall over. I cannot move my head without being overwhelmed by waves of nausea that wash over me in progressive swells. When I turn my head this way or that — I never know when, or which way — there is a swooshing sound in my ears that is sometimes accompanied by pressure and pain. My ears hurt me with a dull ache that’s sharp at the center… like thick sticks that have small points being pressed into my eardrums. My stomach lurches, and my head pounds with a sick headache. A whining, whistling, high-pitched roar fills my ears, and through the intense ringing, I hear muffled sounds that annoy me with distraction. Even when I stop and hold still, the sense of imbalance continues, like a bucket of water that’s been swung to and fro, sloshing back and forth for a while, even after it’s set down on a level surface.

Going about my everyday business, I sometimes have a sudden sense of falling that eclipses and overrides all other sensory input in my system. The room spins, my legs become weak, and my head swirls in sickening waves of disequilibrium. The walls seem to move before my very eyes, the floor rolls beneath me, and my body feels like it’s swaying. For as long as the feeling lasts, I cannot think, I cannot talk, I cannot react to anything around me. I cannot hear or see much of anything around me. I’m dimly aware that there are objects or people nearby, but they don’t register. I’m faintly aware that people are talking to me, but I cannot respond immediately. All I can do, is try to right myself, try not to fall, try to fight back the waves of sickening vertigo, and hang on, till the nausea passes.

My condition does not seem to respond to “standard treatments”. I’ve tried ear drops and anti-vertigo medications, and they did nothing for me. I also wish I could just write this off as a simple balance issue and have that suffice. But there’s a whole lot more to my situation, than being off-balance. Vestibular issues are just the beginning.

Coordinated Balance (“Proprioceptive?”) Issues

I also have issues with sensing where my body is in relation to the world around me (“proprioceptive” issues). These tend to kick in most intensely when I’m off-balance. I cannot feel where my body is in relation to things around me, and I bump into objects all the time — corners of tables, sides of counters, chairs I’m passing… I also knock things off flat surfaces, if they are too close to the edge. I have a hard time gauging how quickly my body is moving in any one direction, which can cause me to misjudge distances and be uncoordinated. I fumble at picking up objects, I drop things I’m holding, and I tend to have trouble judging distances between myself and others. I also inadvertently bump or hit people when I’m just trying to reach out to them or move past them. When I’m trying to keep my balance, I tend to (for lack of a better word) “proprioceptively overreact,” which makes me either bump into things and people around me or shy away from them abruptly, neither of which is interpersonally optimal.

Hearing

My hearing is also affected by my simply not being able to pay attention to anything but staying upright and not running into things. I can be so intent on trying to stay balanced, that I don’t hear anything around me immediately. I’ll hear things, but they don’t immediately register. And when they do register, I’m often so far behind in figuring out what’s going on, I get the message turned around and am not successful in responding to what I’m hearing right away. When I’m really struggling to navigate contact with the world around me, it can take a few minutes for sounds to sink in and be processed in my brain. I hear them, but I don’t process them immediately. This can be a problem when someone is talking to me. I won’t hear them for a few seconds, and then when I do hear them, I am so busy trying to figure out what they just said to me that I miss what I am able to hear. This is less than optimal.

One of the most annoying and disorienting auditory aspects of my bad days is the whooshing sound, which comes and goes when I’m “off” — sometimes quickly, sometimes gradually. I can rarely predict when it’s going to happen (although during allergy season it is usually more pronounced). It often takes me by surprise and thoroughly distracts me from what I’m doing. I’m usually so caught up in going about my daily business, I don’t notice the dull roar or the achy pressure or even the whooshing sound until it’s unmistakable. And when I finally hear this whooshing sound, I tend to feel nauseous and dizzy. I seem to associate it with feeling lightheaded and sick on my stomach, and whenever I hear it — whether I’m nauseous and dizzy or not — I cringe. I freeze. My rest of body seems to remember what it feels like to hear that whooshing sound, and it reacts accordingly.

Sight

My vision can be affected, too. When I’m off-balance, and I’m not well in-touch with the world around me, my vision gets “re-assigned” to the task of helping me keep my balance. It’s hard to describe, but when I’m “off,” I can visually detect things around me, but I don’t readily process what that means. It’s like with my hearing — I know I’m seeing something, but my brain is too busy trying to figure out how to just keep steady and parse out all the input coming in, to interpret what that something I’m seeing is.

Probably the best quick example I can give of this, is from a time when I was driving through a parking lot, and I literally didn’t see another driver, who nearly hit me, and I didn’t hear him honking his horn at me, until I was nearly out of the parking lot. I was at an office supplies store, and I’d just bought myself a new headset for my cell phone, so I could drive hands-free and still talk on the phone. I try to avoid talking on the cell phone while I drive, but I was hoping that a headset might let me at least be able to accept incoming calls without being a hazard to other drivers.

I sat in my parked car for a few minutes, figuring out how to put the headset together, then I placed it on my head, positioned the mic in front of my mouth, and slowly pulled out into the parking lot. As I was rolling towards the exit, I noticed that a car was pulling out of a side lane just ahead of me. The headset felt like it was slipping off my head, and the microphone wasn’t staying in front of my mouth. My attention was focused intently on the feel of the headset on my head and the mic at my mouth.

As though in slow motion, I saw the front of the other car inch out into my path. I didn’t slow down, but continued to drive towards the exit. The headset felt strange on my head, and I could hardly think of anything but keeping my head straight. The front the other car was rapidly approaching the driver’s side front fender of my own vehicle, but I continued to drive on. I didn’t veer, I didn’t slow down, I didn’t speed up. I didn’t react at all — I just drove on. Only dimly was I aware that I had barely slipped past the front of the other car and avoided a collision. It never occurred to me that I should react in some way. It never occurred to me that I should interact with the other car.

As I continued to coast towards the exit, I could hear a beeping in the distance. The headset on my head continued to bother me with its pressure on my one ear and the feel of the microphone near the side of my cheek. The mic wasn’t pressing against my skin, but I was keenly aware of its proximity. I really felt like I was losing my balance, and I held my head absolutely still to keep the apparatus properly positioned. The beeping continued, and I wondered if someone’s car alarm had gone off. But the sound wasn’t rhythmic or regular, so it must have come from somewhere else.

I looked in my rear-view mirror, and I saw driver of the car I’d narrowly missed yelling and beeping his horn at me and wildly gesticulating, pointing at his head. At first, it didn’t sink in, that he was communicating with me, but when I looked up again, I realized that his behavior was directed at me. And he was furious. The headset kept slipping off the side of my head, ever so slightly, but enough to distract me.

Realizing what was going on around me, at last, I tore it off my head and threw it on the passenger seat beside me. When the headset was off, it was as though the lights went on in a dark room, and someone suddenly turned up the volume on life all around me. I could suddenly see. I could suddenly hear. Suddenly, I wasn’t sitting in an enclosed cell with a headset on, I was driving a car in a parking lot. I got out of the parking lot as quickly as I could, merged into traffic, and went back to work, shaken but grateful that I hadn’t done any damage.

I haven’t used that headset at all, since I bought it.

My vision and hearing aren’t the only senses that get “whacked” when I’m out of sync. My taste and smell do, too. My sense of smell tends to be either all-on, or all-off. It’s very rare that I smell something “normally” and can take deep breaths of scents, like perfumes or foods. If I get too strong a whiff of something, it makes my head spin and really overloads me. And if I’m already off balance, or I’m not connecting well with the world around me, my sense of smell sometimes completely turns off. My sense of taste is even less predictable. It’s muted and vague, and I often judge the foods I like more by their texture, than by their taste.

Touch – Pain

My sense of touch is quite variable — like my sense of smell, either it’s all-on, or it’s all-off. I can literally slam into things, and never feel the impact… sometimes I don’t know I slammed into something until I see the bruises on my leg the next day. But my sense of touch in my hands is very active. When I’m feeling nervous or agitated, running my hands over objects — like the interior upholstery and surfaces of my nephew’s new BMW — is very soothing for me. I’ve always loved satiny fabrics, and when I was a kid, I couldn’t fall asleep unless I rubbed the satin edge of my blanket. I rubbed that smooth, soothing edge so long and so often, I wore a hole in it!

On the other hand, I can experience a lot of tactile discomfort. A simple human touch can feel like a blow to me, and when people put their hand on my arm, sometimes it feels like they’re smacking me. Hard. It’s very strange and difficult to describe, and it makes me very uncomfortable to talk about it, but I experience pain and discomfort from things like clothing, hugs, harmless social touches, and jewelry. I don’t wear any bracelets or extra rings or necklaces, or even a watch, because the contact tends to be very uncomfortable — and distracting — for me.

There are a number of different kinds of tactile discomfort I experience. They are not like muscular pain, but are very much on the surface and localized in my skin surface. Here are some details and descriptions:

Burning – It feels like being burned with a hot coal(s), like embers are laid on top of my skin and are burning down through to the bone. This occurs often on my upper arms and across my shoulders and back. It’s usually worse when I’m tired or have a lot of stimuli coming in on me, and its origin is internal in nature (I’ll call it “autonomic”).

Twisting – It feels like I’m having my skin twisted by two hands having a firm grip on my skin, and twisting in opposite directions (like the “Indian burns” we kids used to give each other). It is mostly on my outer forearms and wrists, and it’s worse when I’m tired or stressed. (Autonomic)

Healing burn – It feels like having second-degree burns that are healing under my skin – not on the surface, not down at the bone, but just under the surface of my skin. This occurs mostly on my outer forearms and wrists, and it’s aggravated by having long sleeves. It’s usually worse when I’m tired or have a lot going on around me. (Autonomic)

Chafing – It feels like being rubbed by by a rough surface – either a piece of rough material, or in some cases, a surface that is a little sticky or ‘grippy’ and pulls my skin a little as it rubs. Some people talk about “sandpaper” type of pain, and this might be close to it, but it’s not exactly. It sometimes feels like a moist, tacky texture being rubbed across my skin. I experience this mostly on the tops of my thighs, aggravated by my slacks. Sometimes I feel it on my arms, and it’s aggravated by the touch of light clothing. (Autonomic)

Prickling – This feels like being jabbed with little tiny pins over an extended area. It’s somewhat similar to “sandpaper” type of pain, but not exactly. It sometimes feels like coarse sandpaper against my skin — not rubbed across it, but held in place, so it irritates me with its presence, but it doesn’t rake. I usually experience this when my clothing brushes my forearms and wrists, also happens without prompting on my upper arms and across my shoulders. (Autonomic)

Blistering – It feels like my skin is blistering and cracking, like paint cracking in the sun, or my lips cracking from being chapped. It usually happens when I am just lying still and trying to relax, like when I’m in bed and trying to sleep. The more I relax and just breathe, the more my skin feels like it’s blistering and cracking and peeling. It happens when my skin is exposed to the air and doesn’t have anything over top of it. It’s much worse when I am tired, but it can happen pretty much anytime. It often takes me by surprise. (Autonomic)

Brushing/Raking – This feels like having my skin brushed/raked/ stroked with a metal-bristle hair brush – the sharp ends pulled across my skin, not pressed in really deeply, but just on the surface, where it irritates and I can’t get away from it. I usually feel this on the tops of my thighs — when my pants brush against my skin lightly. It’s not startlingly painful, but it does hurt. (Autonomic)

Smacking – This feels like being hit hard with an open hand or broad surface – and then the pain scatters out across my skin, as though it were a campfire that had something land in it, and the coals and sparks scattered all around it. It usually happens when someone touches me for a few minutes (an short but extended period of time). Like when my partner put their hand on my forearm when we were driving down to visit family for Christmas. They just laid their hand on my forearm affectionately. It really hurt, and I could feel the pain spreading out around where their hand lay on my forearm. The pain continued, even after they took their hand away. (This is an interactive type of pain, brought on by human contact.)

Banging – This feels like being struck with a blunt instrument – and then the impact reverberates throughout my body. This usually occurs when someone touches me briefly without warning, often in casual conversation, like when my brother-in-law was talking to me at a restaurant one Christmas, and he was harmlessly touching my arm (in a friendly, appropriately affectionate way). This also happens when someone tries to hug me. I have also experienced this when my partner was checking me over for ticks, and they touched the backs of my legs, near my knees. The pressure was very light, but it felt like they were poking me very hard with a blunt object. (Interactive).

Please keep in mind that (thankfully) not all of these types of pain happen simultaneously, and they tend to vary. From one minute to the next, I can go from a relatively pain-free state, to waves of strong physical discomfort. I can be 75% fine one day, and be 15% fine, the next. One type of clothing can be unbearable for me, while others are benign, even pleasurable. And a person’s sudden touch can be excruciating one day, while the next, it can be welcome and enjoyable. “Pain” can also be relative, varying from mildly uncomfortable to downright agonizing. But I differentiate it from “discomfort” in that its degree is different.

Discomfort is something I can deal with, but pain is something that every fiber of my being seeks to escape. An itch is uncomfortable for me. Fabric sensitivity, even at its slightest, feels painful to me. It’s not just discomfort, which to me to me is just annoying and transitory. It’s pain.

My autonomic pain seems to be exacerbated by the qualities of the things I contact — the chemical makeup of fabrics, the quality of light and sound around me, the intensity of the sensation I have (such as the strength of pressure on my skin from the cell phone headset). It tends to get worse, also, when I’m over-tired or I’ve got a lot of different sensory input to process. I haven’t taken the time to figure out what kinds of textiles or materials give me the most trouble. Some days, everything gives me a lot of trouble. I just kind of go with it, and see how I’m doing, where I’m at, and I adjust accordingly.

My interactive pain tends to be exacerbated and complicated by my vestibular and proprioceptive issues. Being unable to gauge distances from people who are reaching out to touch me (no matter how appropriately), makes it difficult to A) prepare myself for their contact, or B) react appropriately. It is difficult for me to receive hugs from friends and loved-ones when my sensory issues are kicking in, and this contributes to my social awkwardness. I tend to stiffen and get tense, which actually makes the experience worse for everyone — for me, because it heightens my agitation, and for them, because they sense a reluctance from me that is physical rather than emotional or interpersonal, and their contact tends to become a bit more clumsy. Stress and strain tend to sharpen my pain, so when my vestibular and proprioceptive issues are acting up, the startling experience of a sudden physical contact can make even a simple touch extremely painful.

The different types of pain I experience can be helped by things like sleep, immobility, keeping away from the source of irritation, movement, stretching, steering clear of people and physical contact, preparing for physical contact with others, or just distracting myself from the sensation by some sort of activity. Analgesics like Advil are not very effective, although they do sometimes take the edge off things. A hot shower can be very relaxing, and swimming in a heated pool is probably the thing that helps me the most. Depending on the type of pain, and how well I’m rested, sometimes relaxing and being immobile makes it worse. Other times, it makes it better. It all depends how I’m feeling at the time, and how well I can redirect my attention to things other than the pain. I haven’t been able to figure out exactly how best to address this. I usually just think about something else and keep myself busy to keep my mind off it, as there’s really no escaping it, when the pain is in “full swing”.

Touch – Insensitivity

One of the other tactile issues I experience is on the extreme opposite end of the spectrum — lack of sensation. When I’m off balance, and my proprioceptive sense is diminished, I tend to run into things, but I often don’t feel it right away. I sometimes notice a sharp shooting pain when I bump into things, but the sensation disappears immediately, and I won’t know how badly I’ve bruised myself till later. I have also accidentally cut myself and not felt it until some time later. At times, when I have really cut myself deeply, or I’ve bumped myself hard enough to get a deep bruise, I’ve been so intensely focused on what I was doing at the time, I hardly noticed the pain and only realized I’d hurt myself when I felt the blood or saw the bruise later.

I suspect this may have something to do with adrenaline — my adrenaline is pumping so hard, at times, as I try to keep myself together, that it seems to numb me to the pain. I’m not a doctor and I don’t know nearly enough about human physiology, but my experience when I unwittingly injure myself is very similar to when I was injured while playing sports — I’d be so intent on the game and so “adrenalized” that I would hardly notice the pain. Again, I’m no doctor, but that’s how I experience it.


A Perilous Relief – Table of Contents

Basta with the credit lectures!

Here’s a somewhat rambling end-of-day post about something that’s near and dear to my heart — credit cards!

Lately, it seems like I can’t turn on my radio without hearing someone offering help for credit-strapped consumers. Let the record show that my own credit  card debt load far exceeds what the recommended amount is. And there is no way I’m going to pay it off in a year. I don’t care what kind of magical schemes they’re selling. I’m not going to come up with half my annual salary to pay off those balances.

Now (and I apologize in advance for my snarkiness), the popular response to carrying that much credit card debt is a well-conditioned horror. Everyone – from my parents (I quit telling them how much I make and how much I owe about 10 years ago), to the government, to my bank, to my peers, to strangers I stand next to at the post office – is avidly anti-credit-card-debt. Who isn’t? Paying up to 29% APR to people who are prone to cut your available credit without warning and just ’cause they can really sucks.

And our current popular culture is chock-full of gurus, financial “advisors” and online/broadcast marketers who are telling us in no uncertain terms that we need to be credit-free. For the sake of our savings. For the sake of our peace of mind. For the sake of our children (that’s always a compelling reason). For the sake of our retirement. And for three low installments of $129.95 (plus shipping and handling), they’ll tell us just how we can do that in less than a year!

But I’ve had it with all the personal finance pomposity. I’m sick and tired of all those “money people” lecturing me about how bad credit cards are, how much they threaten my safety, how zealouslyI should avoid them. I’m sick and tired of people who supposedly know all about money (and many of them do, because they have an awful lot of it) telling me how I should handle mine. I don’t have an awful lot of it, and I sincerely doubt I ever will — being RICH is just not that big of a priority with me, and any extra money I have, I tend to give away to organizations that are defending the defenseless or spend on occasional vacations and computer stuff… and my house. I’m tired of people who operate at higher financial levels thinking that their rules apply to me, down here in the “pedestrian zone” of personal finance. I’m sick of people preaching budget-budget-budget, as though anal-retentively socking away $25 a week is going to dramatically impact my long-term prospects.

I’ve got news for those folks – in case they hadn’t realized it by now – people like me don’t live by the same rules that people like them do. If they haven’t gotten that simple fact through their thick skulls, either their math isn’t nearly as good as mine – which is frightening – or they don’t have a clue how people like me really live, or they are actively concealing the truth about money management, so they can sell little shreds of hope to those of us whom they assume know precious little… after all, if we were that knowledgeable and smart, we’d be rich like them, right?

Anyway, even if I did put away $25/week for 52 weeks a year, I would save $1,300, which is nothing to sneeze at. And if I earn 5.5% on this amount (compounded monthly) like I do on my ING Direct savings account, after a year I would have $1,336.38. Not bad – that’s the magic of compounding, where every month your total balance (including interest) gets compounded.

But let’s remember, that’s a little over $100/month I’d be putting away. And in these tight times, there are about 1,336 other places I can think to put that money. And like the trickles of water that carved out the Grand Canyon, those places and reasons have a way of seriously eroding my savings. Or it can take just one or two ill-fated twists — like car repairs after being rear-ended in holiday traffic, or veterinarian bills when one of my pets gets in a fight with a stray animal or falls ill.

Now, if I want to be a little more modest — and realistic — and calculate for $25/month, at the end of a year at 5.5% compounded monthly, I’ll have $308.74 in the bank. Great. That should just barely cover the emergency dental work I need that my insurance doesn’t cover.

Note: I used the savings calculator over at Bankrate.com for these calculations.

There are countless sudden low-scale financial crises that can crop up over the course of a year, which are unpredictable, unavoidable, and immediate. Indeed, there have been more sudden extreme needs for cold, hard cash that have cropped up in my life on a regular basis over the past 20 years. Many an event has been as extreme as it has been sudden and unexpected. Car accidents. Medical and dental emergencies. Getting laid off. Health-related relocations to cleaner and safer parts of the country. Family crises that require immediate travel. Veterinary bills. You name it, I’ve probably whipped out the plastic to pay for it.

Never were these events foreseen. Many of them might have looked predictable to the trained eye, but trust me, if I’d been able to see ahead and take steps to avoid them, I most certainly would have. Unfortunately, being human and all, and living in a country that simultaneously doesn’t favor paying a living wage and demands that we all “play our part” as active consumers, the proverbial cards are well-stacked against me and my kind. And make no mistake, the cards are stacked. Anyone who tells you otherwise is sitting across the table from you in the dealer’s seat.

I don’t want to be a whiner and blame the rest of the world for my troubles. I’m big into personal responsibility. But at some point, the gross inequity of power and influence starts to get a little ridiculous. At every turn, the American middle and working classes are constantly prodded to buy-buy-buy… and all the while, our employers keep telling us they can’t afford to raise our pay… and we’re being lectured from every corner about how we shouldn’t borrow more than we earn. It’s a recipe for disaster, mental illness, systemic infrastructure collapse, or all of the above.

The system truly is totally schizoid, at odds with its conflicted self, and seemingly incapable of any sort of sustainable, consistently coherent cultural message. Sure, we’re supposed to be Good Americans by being good consumers. But heaven forbid we be paid what we need to live on, or have access to adequate medical coverage for the procedures and the tests that we are assured are absolutely necessary for us to stay alive and healthy. And God forbid we charge it — or don’t charge it. If someone could tell me, once and for all, what exactly I’m supposed to do, to keep America strong with my wallet, I’d be deeply grateful.

Now, on the whole, I’m doing pretty well for myself. Credit card debt notwithstanding, I’m making decent pay. But countless other Americans are not, and that’s what tweaks me to no end. Because we are all — no matter how much money we are making — are under constant pressure, these days, to manage our money better. Money we only wish we had. Money we’re sure we had just a few weeks ago, which has mysteriously disappeared. It’s so maddening. I’ve got siblings whose whole families are working more than one job, each, and they’re struggling. It’s stupid, for such good, hard-working people to suffer so much, and live in constant fear of Losing Everything, while our lawmakers languish in Washington with their cushy benefits plans, pontificate about how to be Patriotic, and vote through legislation they haven’t even read.

What the hell can people at the bottom of the barrel do? On the one hand, our country pats us on the back for being responsibly contributing citizens by spending like crazy… while our political, social, and thought leaders keep lecturing us about doing more with what little we have, and not being such irresponsible, greedy gits. Their pulpits are the television, the internet, the radio, the bookshelves. And they just keep preaching away. Sinner, put down your credit cards! Repent! Come to your senses and lay your burden of debt down…

Indeed, there is a quasi-religious fervor to this anti-credit craze. People are spinning the mortgage lending crisis into a sort of anti-credit virtual run on banks, with all these hawkers standing at proverbial street corners shouting that The End is Nigh, and it’s all the fault of “easy credit”, so zero out your balances, bite the consumer bullet, and “live more simply so that others may simply live” (as though my doing without plastic is going to save Darfur or put roofs over the heads of homeless Katrina victims).

But it’s an overly emotional message they’re sending, and it’s at complete and total odds with the reality many of us live with — that we’re just getting by, no matter how much or little money we’re making, and even if we did rob Peter, it wouldn’t be enough to pay Paul. And then Peter would come looking for us and break our kneecaps with a lead pipe.

And as much as people love to tout the benefits of everyday budgeting and personal money management, for some of us, that level of attention to detail to our pitiful little pile of coins is unrealistic, if not impossible.Again, I don’t want to blame the rest of the world for my money woes, but I actually have had certain issues that prevented me from handling financial complexities in a sustained way. I do the best I can, and I’m learning how to do it better all the time, but back when I fell in 2004, I was about as far from being able to make wise money decisions, as a color blind person is from being able to dress models for New York Fashion Week. Sometimes, you just can’t make good money management decisions, no matter how hard you try. Especially when you’re dealing with a neurological condition that hides your own limitations from you.

Yes, some of us — perhaps more of us than care to admit it — are genuinely challenged, when it comes to handling money with facility and grace. And when I think back on all the screw-ups I’ve made about money, these gung-ho messages about dispensing with credit cards just irk me. They’re just so idealistic, so pie-in-the-sky, so insistent that credit cards can be just gotten rid of, like that.

Now, I don’t dispute that there may be some useful strategies for doing away with debt out there, but how many of them are for real? So much of the marketing is driven by raw emotion — fear – fear – more fear — I have to wonder if folks are able to truly use their heads when they take panic-instigated steps. And in the long run, might not some of those schemes to get rid of debt actually be more trouble than they’re worth? Some of the most beloved schemes involve additional mortgages on your house… and by now, most of us know where that can lead.

So, I don’t know what the answer to all of this is. All I know is, I’m in deep with Citibank, Chase, Discover, Sears, and Bank of America, and that isn’t likely to change anytime soon. I can only hope that someone somewhere on down the line I’m able to dig out from underneath these creditors of mine and keep some of my money for myself. I am very grateful that they hauled my ass out of hot water, time and time again. I’m grateful for the dental work, the prescription drugs, the veterinary services, and the emergency plane tickets they’ve all made possible. And now that they’ve managed to keep me alive and a viable member of society, I can pay my debt to them… like I pay my debts to society in general… gradually, sometimes grudgingly, but with a certain sense of duty and the hope that perhaps the resources I’m putting into them will help someone else on down the line. Someone like the customer service rep on the line who’s asking me when they can expect my next payment.

TBI Survivor Loved Ones – Don’t Put Up With Our Crap!

If you are a friend or family member or a significant other of someone who has sustained a head injury, you definitely have a unique set of challenges. Head injury is a terribly intrusive and disruptive condition to deal with — it can be extremely difficult for the survivor to deal with, and it can be utterly maddening for the people around the TBI survivor.

They got hit on the head, sure, but it wasn’t a bad injury, from what the doctor said. They weren’t even admitted to the hospital! They were foggy and groggy for a little while, but that passed. As far as anyone can tell, they should be back to normal, no problem. But all of a sudden, the person you once knew and loved — who may seem perfectly fine on the outside — is changed. Their temper is shorter. They forget things. They make stupid decisions and don’t even seem to understand how dense they’re being.

Subtle little differences can sneak in from out of the blue, and you sometimes can’t quite put your finger on it. They seem… different. You know they’re the same person they always were. But they’re not quite themself. And no matter how long you wait, no matter how patient you are, no matter how much you try to reason with them or walk them through things, they don’t seem to be getting any better.

Or, you can definitely see how they are different. They fly off the handle over nothing. They freak out over stupid things. They sleep all the time. Or they can’t seem to get to sleep or stay asleep more than 5 hours or so. They complain of constant headache. They complain of that blasted ringing in their ears. They suddenly grow aggressive, even violent, and they just “go off” for no good reason. They can’t seem to keep their act together and they keep getting in trouble with authorities – teachers, bosses, the police. Nothing anyone says seems to make a difference, and they don’t seem to learn from any of their mistakes.

For a loved one of a TBI survivor, standing by and watching someone seemingly self-destruct… or at least struggle terribly with things that used to be easy for them… must be terribly frustrating. And dealing with someone who used to be so sweet and loving, who’s now a pure terror when they’re tired or stressed, can be quite frightening. I, myself, have frightened lots of people I loved over the course of my life, due to my quick temper and a sometimes violent streak. I’ve never struck anyone I loved or lived with, but I have thrown and broken things and given people good reason to feel very afraid.

As a TBI survivor myself, I really feel strongly about what an important role loved ones can play in helping a head injury survivor not only recover from their physical injury, but rehabilitate behaviorally. True, the inside of our heads — our fragile, sensitive brain — has changed permanently, and some abilities we may never get back. Some of our cognitive challenges just can’t be helped. But when it comes to our behavioral issues, something can be done. I’m convinced of it. I’ve managed to overcome some really serious behavioral difficulties, and because of my relative success in this area, I’m able to find and hold down regular work. In this economy, you can’t put a pricetag on that capability. And most importantly, I haven’t done it alone.

Perhaps the number one TBI issue I have, is my temper. The inner storms that come up for no good reason really tear the crap out of me, at times. For the most part, I can keep my act together. 7 out of 10 times, nobody knows what a hard time I’m having dealing with something as simple and basic as dropping something or flubbing up. But it’s the 3 out of 10 times that get me in trouble. And it’s not good.

In my case, I am blessed to live with someone who is  pretty demanding. They are that way by nature — they have very high standards, and they expect people to live up to them. I have been constantly pushed and prodded over the years to improve myself as best I can, to not misbehave, to not be lazy, to not be lackadaisical, to not just give up. They have “ridden me” very hard, over the years, sometimes nagging and nagging and nagging until I thought my head was going to explode. But at the end of the day, when I did what I promised I was going to do, or I finished a job I’d started, or I’d done what I was supposed to do, or even when I’d tried and failed, the fact that they’d stayed on me turned out to be more good than bad.

Their encouragement has sometimes been gentle, sometimes strident, sometimes impatient, sometimes overly demanding. But even when they’ve been too hard on me and have given me all kind crap about things I couldn’t control – like my difficulties with remembering things, or hearing them when they were talking to me, or being slower on the uptake than they expecte me to be.

One of the things that’s made our life together more challenging over the years is that we didn’t factor in TBI in our interactions and my shortcomings. But when they started to learn more about TBI, they started to change the way they interacted with me, and they have been far more helpful than ever.

Once upon a time, they pushed and pushed and cajoled and nagged and cursed and hounded… with different levels of success. Now, they understand that patience and encouragement can go a long way. But they — and I — also know that sometimes I do need to be yelled at, in order to get my attention. Sometimes, I’m being so slow and dense, I can’t “get” what’s going on, unless it’s expressed at the top of someone’s lungs.

I don’t take the yelling personally, when situations are tight. I actually need to be yelled at. Or I’ll miss an important cue, I’ll run over that pothole, or I’ll do something that can get me hurt. The important distinction for me is that the yelling happens before an event, not afterwards, when it’s too late to do anything about it. If someone is yelling at me, because I am being dangerously slow and they’re trying to protect me, well then, please, by all means, yell at me.

For me, it’s important that people not handle me with kid gloves. My brain has been rattled a number of times over the course of my life, and in some ways, I’m really, really dense. I can’t be coddled and accommodated and treated like some victim by the people in my life.  And I also can’t be given carte blanche to just do and say whatever I damn well please, ’cause I’ve had bunch of brain injuries. It doesn’t help the people I love, to let me run roughshod over all of them. And it makes me feel terrible, when they let me do that.

Like it or not, there are sides of me that need to be disciplined, that need to be kept in check. And they need to be called what they are — unacceptable — by the people who are affected by them. Including myself. There are certain sides of me that need to be called out and stopped, before they do damage. My temper is hot and precipitous and often flares up with out my realizing how or why or that it’s in the process of happening. And when I’m going off over something that doesn’t warrant my level of rage, I need to be told to be quiet. I need to be told to calm down. I need to be told that my outburst is not appropriate, and I need to step away and calm myself down before I can be around other people. I need to be called on my crap, and I need the people around me to refuse to accommodate bad behavior.

There really is no excuse for bad behavior. There are plenty of reasons for it and my TBIs have not helped, but there’s no excuse for letting myself get out of hand and stay that way. Left unchecked and unstopped, temper tantrums, yelling fits, being snappy and course and crass and obnoxious is disruptive to everyone, hurtful to others, and it’s embarrassing to me. After all, I have to live with me, too. It’s not just about my loved ones. It’s about me having to look myself in the eye every morning when I get up. It’s about me being able to hold my head up, having self-confidence that comes from knowing I can manage my behavior, and having the pride of knowing I’m in charge of my own fate, even if my brain doesn’t always cooperate.

But I need help managing. I need help from my partner, who constantly amazes me with their patience and their intelligence and their willingness to stick with me — as well as their strength in keeping me from running roughshod over them. I need help not only with encouragement, but also being pushed to see what all I’m capable of, to see how far I can go in life, and to keep tabs on my inner situation as I go. And my partner has given me that regularly over the yeras.

Most of all, they’ve helped me by keeping me honest, by refusing to tolerate my bad behavior, my laziness, my eagerness to just give up. They have “kept on me” about so many, many things that I wanted to just let drop. They have prodded me to do right, when I wanted to just quit or do wrong. And they have flatly refused to put up with my crap, threatening many times to leave my ass if I didn’t get my act together and stop being such an a**hole.  They have told me in no uncertain terms that the tone I was taking was verbally abusive, or that I was frightening them, or I was getting out of line with my snarky comments. They have yelled at me, cussed me out, made me sleep in the guest room, refused to cook me dinner, given me the silent treatment, taken away my credit cards, and nagged-nagged-nagged me till I did what I was supposed to do, anyway. And I have never once doubted that they loved me, and they were doing all of that not because they were mean-spirited or wanted to hurt me, but because we both have standards to live up to, and they weren’t going to let me off the hook that easily.

Now, sure, there have been plenty of times when I’ve railed against their behavior. I’ve moaned and bitched and fussed over their demanding streak, and how hard on me they could be. I’ve wept bitterly and angrily over things they’ve said and done, and I’ve yelled back plenty of times. But in all honesty, I have to credit them and their unwillingness to tolerate my TBI-induced stupidity, aggression, and stinkin’ thinkin’ for much of my success.

And I also have to credit myself. Because frankly, I wouldn’t be with this person — and I wouldn’t have stuck with them for 18 years — if I didn’t have standards of my own. If I didn’t agree with them about the range of acceptable behavior, and what is and is not allowed in our marriage, I wouldn’t be able to tolerate their level of demanding-ness. Rather than finding their standards annoying and aggravating, I find them good and positive reminders of things I already know, but easily lose track of.

Of all the things that make successful TBI recovery possible for me, standards of behavior — and the enforcement of those standards — are some of the most important. Understanding that some kinds of behavior are good and allowed, while others are not, is key. Having a code to live by. Having a set of internal guidelines. Agreeing upon rules about what is and is not okay. And submitting to the discipline of being policed — both from within and without — is key.

And my partner has played a huge role in all of this. If they had been inclined to hold back and not engage with me… to be the silent suffering type who just let me go off as much as I liked, and didn’t challenge me… to put up with my crap and then go talk to friends about how hard I was to live with… to not face me down and make me behave myself — or else… to do like so many people I know, who don’t understand what’s going wrong and don’t want to make waves and piss other people off, so they do nothing besides take the brunt of their loved-ones’ anger/rage/temper/sharp tongue… If my partner had been like that, I would not be as well-off as I am today.

Now, make no mistake — my life is no bed of roses. I’m really struggling, these days, with job stuff, learning difficulties, job performance issues, and extreme fatigue. I’m almost beside myself with frustration and agitation, and I am having a hell of a time sleeping. But I have no doubt that all these things would be catastrophic for me and my career and my living situation, if I didn’t abide by very strict guidelines about what is and is not acceptable, what is and is not okay to do/say/outwardly express. If I just cut myself slack, or if I lived with someone who suffered silently while I went off on tears all the time, I probably wouldn’t be here.

I’d be in jail.

Or on the streets.

And I would be alone.

I’m not kidding, and I’m not being facetious. I don’t say any of this lightly.

So, it may sound a bit overly controlling to some, and it might sound like borderline BDSM, but discipline is one of the biggest keys to my success. I’m not advocating loved ones of TBI survivors being strident harpies who give no quarter and drive their brain-injured loved ones to the brink of madness with an unending string of impossible demands. But there is something to be said for demanding that people do/be/talk/relate better than they are at the moment — and better than they think they can.

Ultimately, I think that we are all capable of far more than we think we are. And the first step towards being/doing/living better, is refusing to be/do/live worse than you have to.

And my ears are ringing

My tinnitus has been driving me nuts, lately.

I just needed to mention that, because it’s one of the most constant aspects of my life experience, and it’s one of the most neglected.

I went to see a neuro once, in hopes of sorting some of this stuff out, and when I asked them about the ringing in my ears, they shrugged their shoulders and said they didn’t know what it might be.

This makes me crazy!!!

Isn’t tinnitus one of the biggies that go along with TBI?

Isn’t TBI a neurological condition?

Aren’t neurologists specialists in neurological conditions?

Why the shrugging of shoulders? Because it’s not posing a danger to my life and limb, or because the neuro is/was clueless about it, or because they have no “cure” for it, so they’re not interested in learning more?

I don’t get it.

I constantly come across people talking about it. Okay, so it’s not life-threatening (that I can think of), and it’s more annoying than anything else, in some cases, but it’s such a part of my life, it seems disproportionately dismisssed.

Enough cursing the darkness. Here’s a candle:

Tinnitus Evaluation and Management Considerations for Persons with Mild Traumatic Brain Injury at http://www.asha.org/members/aud/TinnitusTBI

I haven’t read the whole thing yet, but it’s a start.

And here are Google search results on head injury/brain injury/tbi and tinnitus.

Happy reading, for those afflicted like me.

Is it me, or is there a constant ringing in here?

I mustn’t forget to mention my tinnitus.  That constant “ringing” in my ears — which is usually more of a high-pitched whine, like a mean-ass mosquito on steroids — has been with me ever since I was a teenager.

It used to drive me NUTS when I was in high school. I couldn’t get away from it. I distinctly remember standing in my bedroom around freshman year, staring at my alarm clock, trying to get my mind off that ringing-whining-high-pitched-humming. I tried putting my hands over my ears. That only made it louder. I tried plugging up my ears with my fingers. That made it louder still. I tried humming and holding my breath. Nothing worked.

I thought for sure I was going to lose my mind… But eventually I just gave up fighting it and decided to ignore it. Listen to what else was going on around me.

That actually helped. If I reminded myself that the ringing was in the background and I didn’t need to pay attention to it, I was able to think about other things. Distract myself. Pay no attention to it. What else could I do? It wasn’t going away. It was always there.

I thought for the longest time that I had caused it by listening to loud music too much. What loud music? I didn’t even have my own stereo with headphones until I was a senior in high school, and then I didn’t listen to much music other than Neil Young, which isn’t all that loud. I did play the radio loud in the car and I turned up my clock radio, but logistically there was no way that I was subjecting my ears to tremendously loud sounds.

The whole tinnitus thing has baffled me for a long time, until I realized that it can be caused by head injury. Hallelujah! I mean, not as in Thank God, but as in, I’m not crazy, and I’m not the only one.

I’ve tried many, many things over the years to stop the ringing, all to no avail. So, I made peace with it, and I put it to good use. Now, I use the ringing as a barometer for how I’m doing. The louder the ringing, the better the chance that I’m over-tired or stressed or fighting off an infection of some kind. When my sinuses are acting up, I can have more ringing, but it’s usually fatigue and stress and an over-taxed system that sets me off.

So, when the ringing gets to be too loud to bear, I take myself to bed. Or take a break. Or just stop doing all the busy work I’ve been using to get my mind off the fact that I’m exhausted, and I’m not doing well.

More attention for the invisible disability – TBI

Over at New York Brain Injury Lawyers, there’s a great post, Brain Injury The Invisible Disability

I’ve copied and pasted a fair amount of the post here (their content is indented), and I’m going to add my editorial commentary to it, as well.

Brain injuries can affect people’s compulsive nature and decision-making skills. It is a very sensitive area of personal injury law and quite rightly so. Brain injury varies greatly from person to person because each person’s injury allows for differing affects due to the location of the damage.

I love it that they start out on this note. It’s interesting how, of all the people who talk about brain injury, the people who seem to be the most sensitive to the issues and complexities are attorneys. Lawyers tend to get a bad rap, but in the big wide world of brain injury blogging and generally available information, I’ve found their sites/blogs to be some of the most helpful. Indeed, some of the most reliable and insightful and encompassing (as in, approaching the complexities of the situation without succumbing to the temptation to oversimplify) pieces of truly useful information (at least, for me) have come from lawyers. So, my hats are off to them — the ones who use their powers for good instead of evil, of course 😉

A traumatic brain injury is potentially one the most devastating disabilities. It not only affects the person suffering from the injury but can turn whole families upside down.

Amen to that. TBI does turn families upside down. It sneaks into the most secret and obscure places of one’s life, and it not only causes the affected brain to do and say things it wouldn’t normally say, but it often masks its effects by blinding the TBI survivor to the true nature of their words and deeds. I cannot stress this enough. We live in a society that lusts after self-determination and stigmatizes anyone who “can’t help themself” from doing or saying bad/inappropriate/embarrassing things. Our society is founded upon the idea that everyone has the ability to make themself and their world over in exactly the fashion they please. But though this may hold largely true, sometimes other factors come into play that are beyond our control. And that includes brain injury.

The range and severity of problems arising from a brain injury will vary significantly from person to person because every person’s brain injury varies in the extent and location of the damage. Some of the affects of a brain injury are not immediately obvious and only become apparent as time progresses.

Again, good information. It is so true that the range and severity can and will vary from person to person. No two bodies are alike, and no two brains are alike. It’s just impossible for them to be identical, as they are shaped by events and circumstances and body chemistry in unique and individual ways. So, the range of our injuries will vary… and the severity of our problems will, too. After all, the severity of our issues depend on not only the scope and nature of our injury, but also upon our own personality makeup — how we respond to different circumstances — as well as environmental factors. Things like jobs that allow us little flexibility in our daily schedule, financial difficulties that add stress to our experience, living environments that are intolerant of our shortcomings, and any number of other factors like the food we eat and the amount of sleep we get, can and will affect the degree to which we are impacted.

What’s more, some affects are not immediately obvious… subtle changes in mood, shifts in attentional ability, our cognitive capacity, our processing speed… these things aren’t always immediately detectable to the outside observer. What’s more, changes can take place over the course of one’s life, due to hormonal fluctuations and body chemistry changes.  The brain changes with age, just as the body does, and events like puberty and menopause (male and female), which alter the body’s hormonal makeup, can cause brain changes, as well, which can cause issues to arise that weren’t there before. If the part of the brain that is affected by a certain hormone was injured, and a scar develops, but that hormone remains relatively stable in the body over the course of one’s adult life… then it starts to fluctuate later in life, it could trigger some unexpected activities.

The following are pointers to look out for in a persons make-up if you feel they may be suffering from a brain injury after a nasty knock or have suffered a serious injury.

Note from BB: Keep in mind that even a “mild” brain injury, such as a hard bump or sudden impact or “whiplash” from a car accident (or even head-banging at a rock concert) can cause shearing of the connectors in the brain/brainstem, which can have the following affects. One of the biggest misconceptions about traumatic brain injury, is that it would have to be an open wound or something really dramatic, like losing concsciousness for hours or going into a coma, to cause problems. Trust me, you don’t have to teeter on the brink of destruction to be severely impacted by brain injury.

Cognitive changes
A brain injury can cause cognitive changes which affect the individual’s ability to learn new things, to work and to be able to interact socially.

So true! Some examples of this, from my own experience, are:

  • I have a hard time learning new things from books, because my short-term working memory has been compromised. If I’m reading something that’s new, and I divert my attention from it for even as short as a few seconds, I can completely lose the new information — and have to go back and start from scratch again.
  • I also have difficulty with sustained attention — I just can’t study the way I used to. I used to be able to study for hours and hours, and at the end of a long weekend of non-stop reading, I would have a new treasure trove of information to work with. Now, I’m lucky if I can last an hour with my reading.
  • I have difficulties at work, because I get so tired and I tend to space out when I’m fatigued. I find myself, sometimes, just sitting in front of my computer, staring at nothing in particular, or surfing around just for the sake of relieving my over-taxed brain. It’s not productive, but it’s unconscious, and I’m usually not aware I’m doing it, till I’ve done it for a while.
  • Social interaction is a tough one for me, because I have difficulties following people’s conversations at times, and I feel really self-conscious. I also get tired, being around people, and I find I cannot go into places I used to go fairly freely before 2004 — crowds have always distressed me somewhat, but since my fall in 2004, I’m even less tolerant of the noise and hubbub. Also, I have found myself isolating a lot more, over the past few years, and I’ve had trouble managing my emotions and words in social situations, which makes me even less inclined to venture forth.

Lack of insight
Individuals with a brain injury can have great difficulty seeing and accepting changes to their thinking and behaviour. The individual may deny the effects of the injury and have unreasonable expectations about what they are able to do.

I’ll say. Immediately after my 2004 fall, when my job had fallen apart, and I was in the process of quickly depleting my $250,000+ nest egg, I decided I was going to become a financial planner. Talk about a lack of insight! Not only did I not see that I was having an impossible time completing the self-paced work-at-home coursework — in 18 months, I managed to complete only 1-1/2 of the 6 courses, and I got a C on the one I did complete, which is totally out of character for me! But I also was oblivious to the fact that I was mismanaging my own funds so badly that I was quickly running out of money, when I could/should have been making money on it (after I prematurely cashed out of my shares — I walked away with $143,000 instead of the $700,000 I could have had, if I’d just managed to hang in with that job another 18 months — 18 months!!! — I put the money in my checking account that earned no interest and was open-season for my spending). I was doing a piss-poor job of managing my own money and planning what to do with it. What in the world made me think I could be a financial advisor/planner for anyone else? That’s easy — classic p0st-TBI lack of insight. Sheesh!

Memory problems
There may be problems in remembering people’s names, passing on messages, or recalling details read in a book or a newspaper. They may forget what they are doing from one session to the next. Memory problems may cause the individual great difficulties in learning new things.

Oh, please, don’t even get me started on this. If I don’t write down something in the moment, I might as well wave good-bye to it. I am, this very morning, trying to catch up with things I forgot to do over the past three days. If I lived alone or I was with someone who was less interactive and invested in keeping me on track, I would be lost. And quite possibly homeless and jobless, as well.

Poor concentration
A very common outcome is an inability to concentrate and to become easily distracted from what they are doing. This is usually because they are having difficulty concentrating.

Yes, yes, yes. My concentration comes in fits and starts. I found, right after my fall down the stairs in 2004, that I couldn’t concentrate to save my life. I was just flitting from one thing to the next, and I was utterly unable to learn the new skills I needed, in order to keep my job. Of course, I had no idea that I had been brain injured at the time, so I told myself — and everyone else — that I had chosen not to learn the things I needed to learn. I didn’t want to/couldn’t admit (or even see) that it wasn’t that I’d chosen to dig my heels in… I literally couldn’t. Because my concentration was totally shot.

Slowed responses
An individual with a brain injury may now be slower to answer questions or to perform tasks and may have difficulty in keeping up in conversations. Their capacity to respond quickly in an emergency may also be diminished.

Yeah, this is a problem. And it can be pretty scary, too, when you’re in an emergency situation. This has impacted me a number of times.  A couple of  times over the past ten years, in fact, I have had to help friends who were having strokes, but both times, I couldn’t seem to put two and two together. I couldn’t seem to figure out what was going on, and it’s lucky for them that there was someone else there, in both instances, who could see what was happening and come up with an appropriate response. The feeling of being turned around and not being able to respond quickly in such a life-threatening situation is scary enough at the time, but afterwards, it can really haunt you. It’s certainly haunted me. In fact, my inability to respond to a number of emergency situations — some of them life-threatening — was one of the things that “raised a red flag” with me and told me something was just not right with how my brain was working.

Responding to questions and keeping up with conversations is very important when you’re dealing with authority figures and law enforcement, I have found. One of my recurring issues with regard to my TBI is run-ins with the police that nearly went sour, just because I wasn’t following what the officer was saying to me. You have to understand, I’m a very law-abiding citizen. I believe the law is what makes our society livable, and I make every effort to obey it. So when I mess up, go faster than I should, miss a stop sign, or take a left turn too closely, and I get pulled over, I am genuinely confused, because I certainly did not intend to screw up. And my confusion makes it harder for me to focus on the situation, as well as follow the officer’s directions. I have nearly gotten into physical confrontations with cops because of my confusion and frustration and short fuse. I knew better, but my brain failed me at the time when I needed it most. This is probably one of the suckiest things about having a brain injury (or, in my case, several) — it keeps me from being the kind of person I desperately want to be, and from living the kind of life I am determined to live.

On the less dramatic side, with regard to being slower to respond to questions and finish tasks, it can take me forever to get my head around things I’m being asked. That drives my family nuts, and I have a tendency to try to cover up my cluelessness and slowness, so I don’t piss them off. But when I really want to get something, I’ll make them slow down. I also have to be ready to remind them that I am a bit slower than they expect, and they need to not get so upset with me about not following as quickly. Sometimes, they yell at me because I’m “being difficult” when I’m just a lot slower than I’d like to be.

I also often have trouble keeping up with conversations. I can’t tell you how many times people have started talking to me, and I haven’t had a clue what they were saying… for about a minute into the conversation. I tend to have to replay conversations later on, to see if I got what just happened. Socially, I’m fortunate that I have a lot of really gregarious friends who do most of the talking. I just sit back and let them do most of the “work” — and they’re fine with that. Either that, or when I’m in a conversation with someone that I’m just not following, I’ll actually just echo back what they’re saying without fully understanding what they’re talking about. I will appear to agree with them (which they like), but I’m actually just rephrasing what they’re saying. This makes me very popular (people like to be mirrored and they love it when other people agree with them!) but it doesn’t do much for my own sense of self.

Problem-solving
Individuals with a brain injury might have difficulty solving problems and planning and organising things they have to do. They may encounter trouble with open-ended decision-making and complex tasks need to be broken down into a step-by-step fashion.

Oh yes… breaking things down. Can I tell you, my life is filled with detailed step-by-step instructions about how to do the simplest things. When I need to organize my busy day, I fill my planner with the different things I’ll need to do, in the order that they need to be done, and I walk through them in precisely that order. I cannot tolerate changes in routine — it makes me nuts and freaks me out. I desperately need predictability and routine, because backing up and re-configuring my day is a recipe for disaster.

Irritability
Individuals may also have a very low tolerance for frustration and can become easily agitated and may lose their temper quickly.

Yes, yes , yes. Never forget that fatigue factor. Being tired not only makes it harder to think, but it makes it harder to manage emotions and modulate your expression. The thing with me is, too, that my TBIs have made me look more impassive and stoic on the outside than I feel on the inside. So, I may be seething with frustration on the inside, but I look perfectly fine on the outside, so people around me cannot judge my level of frustration — until I blow up.

Another thing that ‘stokes my fires’ is the pain that I’m often in. I have a lot of pain in my body that isn’t helped by drugs or much of anything other than rest. When I’m fatigued, I’m often in extreme pain, which just adds to my irritation level.

Irritation is a huge problem — for me as well as others, because I never, ever want to hurt the people I love, but my irritability gets the better of me all too often. And I have to live with myself afterwards.

Socially inappropriate behaviour
People with a brain injury may no longer know how to act or behave in in social situations. This can be incredibly difficult for families to understand and cope with, particularly as they may no longer recognise their loved ones and not understand their behaviour.

I have screwed up social situations so often, that now I just tend to keep to myself and I don’t respond unless others address me first. Some of the many things I’ve done that have landed me in hot water are:

  • Talking too loud about sensitive issues
  • Forgetting that I promised to keep a secret, and telling the world — in front of the person to whom I promised I wouldn’t tell
  • Behaving in ways that women felt were too familiar or encroaching or sexually intimidating
  • Behaving in ways that men (including security guards and police officers) considered threatening, and triggered an aggressive response from them
  • Coming across like I was making fun of or deliberately embarrassing family members

I really, really hate this aspect of TBI, especially, and it makes it easier for me to just keep to myself. It’s tough, because I want to be social — who doesn’t? But I do it so poorly, at times, that I feel it’s my responsibility to shield others from my ineptitude.

Communication
A wide range of social skills may be affected by an a traumatic brain injury including the ability to have conversations, to interpret and respond to social cues, to show interest in others, to use humour appropriately, and to regulate the volume and tone of voice.

Uh, yah. See above for how my TBI affects communication issues. I generally don’t initiate conversations, and I’m terrible at sustaining them. Good thing I live with very social people who can run interference for me. I usually don’t stray far from them, as I tend to get into trouble with people, when I try to initiate and sustain conversations. At times, I just don’t know what to say. I’m like a little lump of clay that isn’t able to create impressions on others, but can be impressed upon by others. I generally stick with just responding to people’s cues, but even then, I’m often totally lost, and I simply don’t follow. I also am often strangely devoid of interest in other people. Oh, certainly, on a grand cosmic scale, I do care a great deal about what others experience/think/feel, but personally, in my injured brain, part of me just doesn’t care. I want to care (I think), but I just don’t. I’m sorry, world. I just don’t.

I also don’t always use humor appropriately. I usually think I do, but then I find out from others that I don’t. Heaven help me — and everyone around me, who has to put up with my sense of humor when I’m tired.

Regulating my tone of voice is a constant challenge, which is another reason I keep quiet so much. I often use the exact wrong tone – I’m too loud in quiet situations, or too quiet when I’m talking about important things… I sound angry when I’m just riled up… I sound deadpan/stoic when I’m really worked up. In some cases, people I live with have been very afraid of me because my tone was a lot more intense and sounded “hateful” and aggressive, when I was just having a lot of trouble articulating, and I was scared half to death over something. I’m hoping that my family members will learn that my tone doesn’t always match my inner reality, and cut me some slack.

Depression
Depression in an individual with brain injury is a very common emotional consequence that usually comes some time after the injury. Signs of depression include lack of motivation, loss of sexual drive, sleep disturbance and tearfulness.

Okay, here’s one of my pet peeves — interpreting neurological processes with emotional ones. Lack of motivation is not necessarily depression-related, nor is loss of sexual drive, sleep disturbance, or tearfulness. There are a host of neurological reasons why all these can occur, and the fact that they’re commonly lumped together under “depression” tells me that there are probably a lot of people walking around with neurological issues that could be possibly addressed with occupational therapy or other coping mechanisms, but they’re being medicated, instead.

Unraveling neurological issues from psychological ones is in the Top Ten Things I Hope to Promote in This Blog. Calling our neurological, TBI-related issues “psychological” ones and addressing them with drugs just empowers the pharmaceutical companies, not the people who have to live their lives. Don’t get me wrong — I have nothing against a quality pharmaceutical solution. But too often pills are pushed as a solution, when they just add to a problem — like Prozac making certain people suicidal.

Mis-diagnosing neurologica/TBI-related issues as psychological ones and inappropriately medicating patients actually works against the pharma companies, as well. It makes them suspect, when the real culprits are lazy/mis-informed/biased/idiotic psychiatrists/therapists/doctors and it prevents good science and good medicine and good psychotherapy. I want good pharmaceuticals as much as the next one — but I want their power used properly and for good, instead of lazy-assed evil.

Headaches
There are multiple sources of head and neck pain, both inside and outside the head. Headaches arising from a brain injury can be caused by a number of reasons.

When don’t I have a headache? Rarely. Of course, one of the neuros I’ve seen over the last year tells me they’re stress related, and if I just relax and exercise more, they’ll go away. Hasn’t worked so far… Hasn’t ever worked.

Visual problems
Vision and visual functioning is often adversely affected by brain injury. Some of the more common visual systems problems include double vision, rapid eye movement and near-sightedness.

Can’t speak to this much, aside from rapid eye movements I sometimes get when I’m overtired.

Hearing problems
Hearing problems can occur for a number of reasons, particularly when the inner ear and/or temporal lobes have been damaged.

And let’s not forget tinnitis — that constant ringing in the ears. True, it can be more neurological than auditory, but it’s hearing-related. For the record, I have — and always have had — constant ringing in my ears. Sometimes it’s louder than others, but it’s always friggin’ there.  It used to drive me nuts when I was a teenager, but I have since acclimated to it. Now I use it as a barometer of my physical condition — louder means I’m having issues of some kind — stress or fatigue or what-not. It’s actually a useful gauge of my physical well-being. Provided I can tolerate the constant high-pitched whine.

A traumatic brain injury is often called the invisible disability. As there are frequently no outward physical signs of a disability, effects such as fatigue, lack of initiation, anger, mood swings and egocentricity may be seen simply as bad personality traits by others. It is easy to see why a traumatic brain injury can be such a devastating disability, especially when the disability is not obvious to others.

Indeed. In fact TBI is often a double-hidden disability, as it’s so often hidden from the survivor, themself. It’s a real conundrum, let me tell you. Society has so many biases against behaviors and problems that can come with TBI, it can be all but impossible to get people to consider you injured, rather than bad. The real challenge, from where I’m sitting, is learning to detect and live with my own disabilities, find my strengths, and ultimately, finding peace in myself, no matter what the rest of the world has to say.

And if I can get through the day without doing any harm, so much the better.

TBI can be a devastating experience, both during and after — in the short and long-term. But if you can get past the trauma of it and learn to deal with it substantively, it doesn’t have to ruin your life. And the pieces that have been broken, can sometimes be put back together again. Ultimately, the brain is a fascinating phenomenon. We all have one. And the challenge — for us all, at this time — seems to be learning how to use it properly.


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