I really am very tired…

I’ve been thinking, these past few days, about how many things I’ve blocked out over the years of living with a tbi… I’ve effectively blocked out the fact that I usually have a headache, that I have constant ringing in my ears, that I sometimes can’t make sense of what people say to me, until 10 minutes after they say it…Β  So many things I’ve succeeded at ignoring. Including being tired.

I don’t think I’ve had many full nights of restful sleep since my fall in 2004. I’ve had a lot of job stress and a lot of personal stress… and frankly, it’s worn on me. But I believe a lot of my sleep disturbances have been due to my injury, not just external stress, and I’ve just gotten used to being constantly tired.

Fatigue with TBI is a big problem, and I keep coming across discussions of it.

It’s a theme. For sure.

Of course, it doesn’t help that all of American culture seems hell-bent on adding sugar/aspartame/whatever sweetener to every single form of solid food and drinkable liquid. It doesn’t help that we’re all hopped up on caffeine and pushed to constantly go-go-go. It doesn’t help that our food is full of preservatives and God-knows-what-else. And it doesn’t help that the television and radio and internet are constantly pumpingΒ  us full of stimuli that offer us little in return for paying attention to them, other than their agreeing to go away and leave us alone.

This country is full of over-tired, over-taxed, under-served citizens, 2% of whom are walking around with TBI’s… a lot of whom (myself included) are having trouble sleeping.

About the last thing we need, on top of our already challenged sleep patterns, is a nationwide campaign to keep us awake long enough to spend whatever money is left in our wallets or on our over-taxed credit cards.

<sigh>

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Ruminations of a high-fuctioning mtbi survivor

Okay, so this post is purely self-serving, in that I need to remind myself that I am indeed a high-functioning mild traumatic brain injury survivor, who has managed to build a pretty incredible life for myself and my family, despite my injuries at age 7-8 and three years ago at age 39.

I’m in the job market again, and I’m looking at my job prospecting with a whole new eye — keeping tabs on my stressors and trying to navigate the world of recruiters and headhunters, who are all so incredibly DRIVEN and don’t give themselves, let alone me, a chance to breathe. Take a deep breath, folks. Honestly…

I’ve been talking to headhunters, on and off, for a few days, and they’re starting to make me crazy. All that go-go-go stuff and the constant pressure to schedule something with them… to make it happen… make it happen! Can-do shit and all that. I have to admit, I’m a bit tired of all that pushy crap, and it’s making me antsy and short-tempered. I actually snapped at a headhunter today who was just pushing too hard. People can’t push me hard, anymore. Not anymore. No thanks. Give it a break.

Still, one must work, one must earn money, one must pay the bills… If only I could find a job I could do from home, instead of going out into the world. I’ve been thinking I really need to work for a company that can offer me structure and reliability and some sort of regular schedule. I’ve been in and out of the regular job scene for a while, back and forth to a part-time job and futzing around for the past year or so. I’ve been thinking that I need more than that — more structure, more involvement…

But the more I talk to people in the working world, especially recruiters for technology companies, the more it gives me the willies. And I don’t relish the idea of going back to a 9-to-5 position. Especially if it involves driving an hour each way. Just too much.

Especially since I’m starting into dealing with this TBI stuff. I really don’t want to have to put my diagnostic testing and rehab on the back burner, while I try to figure things out. I don’t have an unlimited amount of money in the bank, so something must be done. But really, I’d prefer to work at home… telecommute. Work remotely. Not have to go into an office.

Better yet, I’d prefer not to have to work at all.

But that’s not really in the cards, at this point. Unless people buy so many of my headache journals that I can retire. Or they purchase more of my writing/research/resource guides. That’s always a possibility. A slim and distant one, but a possibility, no less.

But seriously, folks, there must be a better way for tbi survivors to make a living, than having to schlep into an office and be surrounded by people who neither understand nor care about your condition. I’ve worked with disabled people before, and while our employer did accommodate them, and they were great friends with everyone they worked with, the simple fact is, they had to work like the dickens just to get by “normally.” And while people did help and reach out to them, there was always that undercurrent of pity that makes my skin crawl.

I just can’t bring myself to “play the disabled card” as a tbi survivor. I’m still up in the air about whether I’d even mention it to an employer. I certainly will not mention it to consulting clients. That would totally work against me, I believe.

I just need to keep it to myself, unless there’s an expressed need to let people know what’s going on. I guess it’s all in a day’s work for a tbi survivor… trying to figure out how to navigate the working world. Or the world in general.

But I don’t think I started this post to bitch and moan about my job situation… where was I? Oh, yes, now I remember: ruminations of a high-functioning mtbi survivor. That means I’m supposed to focus on my strengths, I suppose πŸ˜‰

The oddly conflicting fact of the matter is, being a high-functioning tbi person can make things all the more difficult, because if you don’t “present” like a tbi person (like me), it can be pretty difficult to get people to take your limitations seriously. I’m having a getting-to-know-you meeting with a counselor who’s seeing a friend of mine, who’s really struggling with my newly discovered tbi status. This counselor knows a bit about tbi, and they don’t think I look or act like a tbi survivor, whatever that may be like. So, I need to sit down and explain things and hopefully elucidate my situation.

I’ve invested a whole lot of time and energy in making sure that nobody, but nobody, realizes I’ve got a disability, and now I have to sit down and explain to someone how my front is often just a front, which makes me a fraud and a fake, I suppose, on a certain level. I’m not nearly as smart as I pretend to be. Or as quick. Or as inspired. I just do a great job of imitating someone who is. Or maybe that makes me a highly resourceful survivor extraordinaire, who just doesn’t want to miss out on life and sucks at self-assessment, so they can’t see that they’re not quite as smart/quick/inspired as they think they are.

It’s all very confusing, and I’m not helping myself any, right now. I’m actually very tired. And stressed. And worried about these interviews I have coming up over the next few days.

Just remember, on the internet, nobody knows you’re a dog…

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Straight to execution…

Way back when, at one of my first technology jobs, my boss (the company owner) chided me for “jumping straight to execution.” He wanted me to spend more time researching a new program — learning to use more of its features in a lot of different ways — before I started using it.

It rankled me, that he was trying to “hold me back” and not give me my head, so I could just jump right in. But now, when I look back, I realize that this has been an ongoing pattern with me — and it appears to be directly linked to my TBI after-effects.

I do tend to jump right into things without thinking them through completely, up front. It’s a huge drawback, and seems to stem from my diminished self-assessment abilities, which don’t tell me enough about my limitations… not to mention a lack of impulse control.

It really upset me, when he told me I should be forging right ahead with things… But now that I think about it, that was a really important piece of information for me to have. And I’m grateful to him for passing it along to me, so I can benefit from it.

I’ve been waking up early a lot, lately

This morning I woke up at 5:00. That isn’t very early for some people, but is early for me, especially since I didn’t get to bed till midnight, and I need 7-8 hours of sleep to be fully functional. I’ve been pretty tired, lately. Needing to catch up on my sleep. But try as I might, I can’t seem to get myself to bed before midnight, and I can’t seem to sleep past 5 or 6 a.m. I do what I can to get naps in during the day, which helps, but it’s been a long time since I had 8 solid hours of good, sound sleep. That’s what I’ve traditionally needed, ever since I was a kid, but it hasn’t happened for a while.

This is really nothing new, actually. I’ve been waking up at 3 a.m., on and off, for the past three years or so. Since I fell and whacked my head at the end of 2004, I haven’t been able to really sleep the way I want to. I either can’t get to sleep before midnight/1 a.m, and/or I can’t sleep past 6 or 7 in the morning, and/or I wake up throughout the night, and/or I wake at 3 a.m. and can’t get back to sleep. All told, I’m lucky if I get 6 hours of sleep a night. I can’t remember the last time I had a full 8.

I’ve often resorted to just getting up at 3 a.m. and busying myself with things I meant to do the day before, but didn’t get around to… then hoping that I’ll wear myself out and get back to bed for an hour or so of additional sleep before my day officially starts at 8 a.m. That’s worked for me in the past, but as often as not, I find myself caught up in the little “asides” I pick up, and I don’t get back to sleep. Then I spend the rest of the day worn out and frazzled.

I’ve become increasingly accustomed to being tired all the time. It’s not such a bad thing… unless I think about the impact it may be having on my health. It certainly doesn’t help my headaches any.

Speaking of which, I have another one today. I’ve been pretty much headache-free for a few days — that is, I’ve been at a .5 or 1 level, instead of the usual 3-4 level (on a scale of 1-10). Today it feels like a 3, for starters. In the upper occipital area — back of my head, around the middle, near where my skull starts to curve around towards the top. I’m not entirely sure if the headache is due to stress and strain and thinking too much (I started doing that at 5:30 this a.m., when I realized I couldn’t get back to sleep and started fretting about things like work and jobs and paying the bills)… or maybe it’s muscular. I did go to the gym yesterday and had a good workout. I’m sore, now, including my shoulders and neck, so that could have something to do with it.

There’s a pronounced ringing in my ears, too — it tends to accompany my stronger headaches, if I’m at a 3 or higher. It’s a hollow, high-pitched, whining ringing that’s constantly in the background. If I thought about it, it would be maddening. But I’ve had most of my life to get used to it, so it’s just there…

But back to my sleeping patterns. Sleep disturbance is a common after-effect of a TBI, and when I look at my sleeping patterns in terms of my most recent injury, it all makes total sense. Although I sustained a TBI when I was 8, I don’t think that sleep disturbances weren’t a part of my life till I was injured in 2004. Even when I was 10, I was able (and eager) to go to bed by 9 or 10 p.m. and I could sleep through till 6 or 7, no problem.

After getting 8 hours of sleep a night, come hell or high water, ever since I was a kid, all of a sudden in 2004-2005, I just couldn’t manage to sleep through the night, and it made me crazy… until I resigned myself to it and just tried to adapt with afternoon naps. I’ve been an avid Saturday/Sunday afternoon napper for many years, even before my patterns were disrupted. But in the past three years, it’s become a really necessary part of my weekly routine.

Of course, three years ago, when I was waking up at 3 a.m. every night and unable to catch up on my sleep, I blamed job stress. Certainly, that could have something to do with it, but I was stressed before my injury, and I wasn’t up in the wee hours every single day. Not like I was after the fall. And after I left that job and had less stress in my life, I was still hassling with sleep disturbances.

I’ve been looking around online for resources on sleep disturbance. Over at http://www.tbihelp.org/sleep_disturbances_following_tra.htm, they say:

… It is generally accepted that sleep is usually regular and predictable. For instance, when a person is about to go to sleep, neurons within certain parts of the brain (e.g., the brainstem, thalamus, hypothalamus, and basal forebrain) become more active and prepare the person for sleep. Other areas of the brain then become involved, and seratonin is released, which facilitates the sleep process even more.

When the brain is injured (the severity of the injury does not appear to matter), the person’s sleep/wake cycle often becomes disrupted. Thus, many people who have sustained a brain injury experience difficulty getting to sleep, maintaining uninterrupted sleep, and subsequently remain quite tired during the day. Even those with mild TBI report sleeping difficulties. It has been found that when these individuals do sleep, their sleep is lighter, and less restful, where they often awake during the night. When a person is not getting enough sleep at night, they often become excessively tired during the day, and frequently experience depression. Unfortunately, while there are some studies that demonstrate particular sleep disturbances following TBI, there have not been any large studies that investigate the different ways in which such disturbances impact upon other areas of a person’s life (e.g., cognitive impairments, psychological functioning).

The article may be found at:Drake, A., & Bradshaw, D. (1999). ‘Sleep disturbances following traumatic brain injury’. Brain Injury Source, 3, Brain Injury Association: Alexandria, Virginia.

Since the article dates back to 1999, I suspect there have been larger studies about how sleep disturbances impact the lives of TBI survivors (not to mention their family members and employers).

Then again, other more recent studies report the need for more studies… Hopefully there will be more work done on this. I’ll need to check more recent brain injury research for updated information.

Other links about TBI and Sleep Disburbance:

It’s encouraging to see that researchers know this is an area that needs more exploration… and calling for more studies about sleep disturbance after tbi. As the “Sleep Disturbances after Brain Injury” site says:

Problems with sleep are another poorly understood, but absolutely central problem after brain injury. As serious of a problem as overattending fatigue can be, if the injured person doesn’t start the day refreshed, it can be debilitating.

I’ll say! When I had my fall in 2004 and went back to work A) without having a clue that I’d been injured, or to what extent I’d been affected, and B) never getting adequate sleep to keep up with not only my healing but also my day-to-day experiences in a highly stressful job, the results were personally and professional catastrophic.

Not only could I not cope with the day-to-day demands of everyday activities, like keeping up with my chores, cleaning, taking care of the house, doing yard work, etc… but I couldn’t keep up with my workplace responsibilities. I became increasingly hostile to people around me, I became insubordinate to my manager(s), I lashed out at co-workers without provocation, and I frankly scared a lot of people at work with my temper and my intensity.

Everything around me became that much more “amped up” with me, and I had a very hard time both moderating my reactions to people and regulating my pro-active behavior. Eventually I had to leave… though nobody understood exactly why I’d imploded. Least of all, me.

I’m convinced that lack of sleep exacerbated a lot of issues I had, and not only made me more difficult to deal with, but also prevented me from healing adequately. Not getting enough sleep pushes me to the point where I had ongoing difficulties navigating the social landscape at work, and my self-confidence was pretty much shot, as a result. The emotional fallout from that has been intermittently devastating, and it’s still causing me grief, trying to figure out how to integrate into the working world in a positive way — meeting the needs of my clients, as well as my own physical demands.

Yes, sleep disturbances are a huge problem for me. I’ve been plagued by them for over three years, now, and it’s a huge pain in my neck. But knowing that they can be traced back to my TBI(s) helps tremendously. Now I can explain it to myself and the people around me. Now I can put it in terms that actually make sense to other people.Now I don’t feel quite so helpless and alone anymore. And that makes all the difference in the world.

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A good day… sort of… I think…

Today was a good day.

I think.

So far, anyway.

I’m actively looking for work, right now, after taking a little over a month off for the holidays. I’m finding that dealing with people — especially co-workers — during the holidays is just too much for me to take, these days. I can’t stand the hurried pace, the rush, the frantic-ness of it all, not to mention all the issues that people at work have around their families, their emotional issues, their holiday trauma-drama… It’s just so tiresome, and my coping skills could really use some improving. So, until I get/feel better this time of year, I’ve taken to checking out from Thanksgiving through New Years.

This is the third year I’ve done this. I’m a consultant, so I can adjust my schedule accordingly — work like a dog for 10-11 months, bill all the hours I can get my hands on, then take the last month of the year off. It works for me. It’s much better than getting overloaded in December and then acting out. That just wasn’t working with me. Plus, after my re-injury at the end of 2004, I just had to quit the the holiday season wholesale, to take care of myself (and spare the world from my outbursts and social uneasiness).

In the months after my fall over Thanksgiving of 2004, I became increasingly non-functional in tight spots at work — with no clue why. I became a real problem at the office, what with my temper flaring and socially inappropriate outbursts around co-workers and my concentration shot to hell and my impulse control and emotional extremes all over the map. Unfortunately, I didn’t know why it was happening to me… all I knew was, I couldn’t function around those “a**holes at work” anymore (I won’t tell you what they thought about me!), and I had to make some choices. After enduring a grueling year of real struggles with myself and others, I realized at the end of 2005 that it just wasn’t working, that combination of holiday stress and my mental/emotional situation (tho’ I didn’t realize I was dealing with a TBI at the time).

So, I decided to just quit. Take the time away from the office. Stop working. And it was great!

I have to admit, I was pretty nervous, when I first “dropped out” at the end of 2005. I am a workaholic by nature, and the longest I’d ever gone without work in nearly 20 years was 2 weeks. So, being away from an office and a client for longer than 10 working days was a whole new thing. But it was a good thing. And when the New Year came around and I had brand new clients in 2006, I realized the sky wasn’t going to fall if I wasn’t working 51 weeks out of the year. So, I did it again in 2006. Took six weeks off between Thanksgiving and New Years. And I did it again this holiday season.

Now I’m back in the job market, looking for clients. Sending out curriculum vitaes. Quoting hourly rates. Hob-nobbing and networking and schmoozing, oh my! I’ve had some good nibbles, but I’d be a lot happier if things were nailed down.

That will come. Some of my leads are very strong, and I’m feeling positive. I never mention TBI when I deal with clients. That’s not the sort of thing I feel comfortable telling people as a consultant. As a full-time permanent employee, it would make sense to tell my employer that I’ve got this disability, since the ADA was created to protect people like me/us in such a situation. But as an independent consultant, there’s just no way I’ll ever breathe even a hint about my TBI background to prospective clients.

My job is to make their lives easier, not more difficult, and throwing brain injury into the mix is not something that makes their lives easier… or my life, for that matter.

Still, a part of me pines for a full-time job that lets me be protected by legislation passed to help people like me. I’d love to be able to show up at an office and know that there are laws in place to keep me from being preyed upon, persecuted, exploited, and treated like a second-class citizen by ignorant boobs. It might take some of the pressure off.

Maybe if the independent consultant gig gets too dicey, I’ll look for a gig like that. But for the time being, while I’m still of sound mind — well, mostly, anyway πŸ˜‰ — and body, I’ll keep billing at my professional services rate and retain my freedom.

Today was a good day. So far. Good progress.