I think something is amiss

It’s not usually this bad

A couple of months ago, I had several episodes that really threw me for a loop. I had a couple of meltdowns and it felt like something in my head “popped”, and then I was numb and dumb for a number of days after that. I thought maybe I was having a stroke, but it didn’t seem like I was having all the symptoms, so I thought maybe it was a migraine. It’s hard to tell with me — I have so many sensory issues in the course of every day, it’s hard for me to sort out the exceptions from the rules.

Over the past several weeks, I’ve had some “jumpiness” in my left cheek, and for several days, a spot on the left side of my upper lip was twitching like a Mexican jumping bean. It was driving me crazy, but it came and went, so I didn’t want to make a deal out of it. Then, last night, I realized that my left hand is more numb than my right – I can feel things and I can move it, and I don’t seem to have any loss of muscle strength, but it feels a little numb, and I don’t have the same level of sensation that I do in my right.

Also, I almost cut the tip of my left index finger off, last week, when I was fixing supper. For some reason (and I never do this), my finger was extended, and I almost didn’t stop myself, as I was bearing down. I cut most of the way through the nail – fortunately at an angle, so it didn’t go into the flesh under the nail. And it freaked me out, because A) I can’t afford to cut off the tip of my left index finger — I need it for working on the computer, which is my bread and butter, and B) it’s very unlike me to not keep my fingers away from the knife while I’m cutting. It’s been years since I had anything like this happen to me.

Then, this morning when I was putting on my socks, I could not raise my left leg up as high as my right one. I just didn’t have the strength. I know I have had different levels of strength in my left and right, and I haven’t been able to lift one knee higher than the other for some time, but I can’t remember if it’s been the right one or the left I have trouble with. And it’s weird how I keep misspelling things.

So, I think I may need to get checked out. The only problem is, I don’t trust the hospitals that are closest to me, and the one my PCP is affiliated with has really sh*tty neurologists. I have dealt with them in the past, and the one in particular treated me like I was hostile, they kept asking about my history of drug abuse, and they basically just went through the motions till they got me out of their office. I’m sure they’re not a total asshole, but that day, they did a great impression of one.

The other problem is that I have gone through whole batteries of tests over basically nothing — just stress. I get diminished when I am tired, and I have been extremely tired, lately. I’m just going-going-going all day, every day, and it’s caught up with me big-time. So, I don’t want to go crying “stroke!” when it’s really just stress and will get fixed with a lighter schedule, more sleep, and taking it easier than I have been.

Fortunately, tomorrow afternoon I’ve got an appointment with a counselor whose office is closer to a nearby city that has excellent hospitals, including the one where I had my MRI and got checked out for possible seizure activity, several years ago. They’ve got an MRI on record with me, as well as an EEG, so they’ll have a baseline and I won’t have to request records from other hospitals. I have my appointment with my counselor at 5, then I’ll discuss the situation with them, and if it really seems like I need to get checked out, I’ll drive the extra 45 minutes to get to the hospital in the city.

I’ll need to prepare for this — make sure I have everything with me that I need — including my work laptop and stuff from home. I’m packing a bag, just in case. And I’m also packing up my cubicle tomorrow, because we’re moving to the new office building on Tuesday evening, so I need to have it all ready to go, in case I’m not in the office on Tuesday.

I just need to prepare. And make sure that my spouse is all set, in case I need to stay overnight, or things run late. Maybe I’ll go get some extra food today, to have us covered.

I’ve got a headache, but that could be anything. I usually have a headache. No surprises there. And concentrating on the thought that something might be WRONG, is not helping me.

I’ll check with my counselor tomorrow. And I’ll see if I can get hold of my neuropsych, too. It’s really hard for me to tell what to do, and how best to do it. I have a lot of responsibilities, and I need to keep up with them, because people are counting on me. It’s almost impossible to tell what’s a product of anxiety and worry and being all stressed out with concern, and what’s the real deal, so while part of me wants to go to the ER and get checked out, I’ve been there a bunch of times over things, wasting precious hours amongst sick people. And when all was said and done, I was told, “Oh, it’s nothing. You can go home now.” I get sick and tired of being treated like I’m malingering or am overreacting. I literally don’t know if what I’m experiencing is a legitimate problem, or not. I have had a lot of neck problems over the past year, which affected sensations on the left side of my body, so maybe it’s just that. It’s hard to know. There’s a lot of competing information coming up in front of me all the time, so how do I sort it out?

Anyway, I think I have a plan. I’m still walking and talking reasonably okay (that slurred speech and sensation of a drooping cheek isn’t much fun, but it comes and goes). I’ll put everything in place for what needs to happen, should I need to go into the hospital. I’ll get myself coverage, and I’ll make sure things are lined up, so I can just take care of business.

Like paying my mortgage. For some reason, I had direct deposit set up for one bank account, but not for my house mortgage account. I discovered that yesterday, when I was checking my bank balances online. So, I’m late on my mortgage this month. Fortunately I’m not terribly late, to the point of getting “love notes” from the bank. I set up the monthly deposit to go into my account regularly, so that problem’s solved.

I also discovered that I have $8,000 more in the bank than I thought I did. That’s enough to keep me afloat, if something keeps me out of work for a few months. It’s amazing how much money you can save, when you don’t pay your mortgage 😉 Of course, that $8,000 is all the money I have in the world for a safety net. Compared to the $400,000+ I used to have saved for retirement before my TBI in 2004, it’s sad. But it’s a hell of a lot more than I’ve had for a number of years. So, I am grateful for what I do have.

Oh, this is annoying. I can’t seem to spell. My hands keep typing the wrong letters. I need to take a long, hot shower, then lie down and get some rest. Take care of a few errands, then sleep for a few hours… or more. As much as I need. It’s Sunday. I’ve had my walk in the woods and my breakfast, and it’s turning out to be a perfect day for sleeping. Gray. Overcast. Drowsy. With a breeze blowing in the trees. Nice.

After I get some sleep, I’ll make my list. I’ll type up my symptoms from the past few months, and I’ll print out a copy, in case I need it tomorrow. Everything may be perfectly fine — just stress — but it’s not feeling fine, right now.

Whatever. Time for my nap.

Advertisements

The most magic 30 minutes of my day

Yeah, that’s the ticket…

Yesterday I had a nap. I stepped away from my desk for about half an hour to recharge my batteries. I walked 5 minutes to my car, which was in underground parking quite a ways from my office, put the seat back, put the headphones on, made myself comfortable, and I did my progressive relaxation.

I even got about 15 minutes of sleep in the process.

And when I woke up (which was 2 minutes before the alarm I’d set), I felt amazing. Refreshed. Alive. Human.

Then I collected myself, walked the 5 minutes back to my office, and I got on with the rest of my day.

I have heard it said that naps can disrupt your sleeping pattern, and it’s better to keep yourself awake and go to bed early. They obviously do not push themselves to perform at the level I do, from the moment I wake up in the morning. From the moment my feet hit the floor, I’m in GO mode. I have to be, because getting myself up in the morning is a monumental task that takes everything I have, some days.

Anybody who thinks I can make it through my day on a night’s worth of sleep has obviously never experienced the kind of exhaustion point I get to, around 2:00 p.m. each and every day. It is pretty brutal. By the time the afternoon rolls around, I’ve been going full-tilt-boogie for 6-8 hours. I can continue push through, sure, but I am good for nothing, the rest of the afternoon. Seriously, good for nothing. Even the things that I love doing — and that I push myself to do — turn out to be a waste of time.

Wheels spin. But they get no traction.

But if I can sleep… that is another story.

Knowing that I can sleep later on, and that I’ll be able to recharge my batteries, also makes it possible for me to push harder at the beginning of the day. When I think I’m going to have to pace myself… that my energy stores from a night’s sleep are going to have to last me all day, I hold myself back in the mornings. I’ve just now realized this, actually. When I wake up tired

Today is a completely new day — or so I keep telling myself. I’m a little tired this morning, to be honest. It’s been a long week, and I’m tired already at 7:00 a.m. I will pick up speed later today, when I am working. I’m not going into the office, so I have more time to focus on working, and less to spend driving. I also have more time to spend thinking about my own projects and making some good progress on them — without the pressure of daily performance of way too much work in way too little time.

So, there is hope for me today. I don’t have to be subjected to the upset and uncertainties of all the people around me (I came back from my nap yesterday to find my teammates huddled in a corner bitching and complaining about working conditions.) I can set my own pace and do my own work, without others interfering with their emotional incontinence.

It’s a relief not to be at the office, because the environment there is pretty depressing. It’s just a constant pressure cooker of uncertainty and chaos. When I say “chaos”, I mean there is a total lack of recognizable patterns to anything that happens. That is to say, there is no regular cadence, no regular pace, not much that’s predictable at all, from a day-to-day standpoint. It’s constant interruption and constant uncertainty. It’s not like I need any guarantees in life. But it would be nice to be able to not have everyone around me intent on interrupting my train of thought to ask me questions they can answer themselves.

It’s almost as though they are just stopping by to feel a little relief from their uncertainty.

As a matter of fact, I think that’s exactly what they’re doing — just stopping by to get a little boost to their self-confidence and sense of belonging. Because that’s what I bring to the table — respect for others, the ability to calm people down when they are all worked up, and a certain sense of calm in the center of the storm.

On the bright side, it’s great that I’m able to do this for people. On the downside, it doesn’t help me get my work done… and it’s actually keeping me from making progress in my own workload. Other people not being able to manage their own internal state, is probably the biggest hurdle to my own productivity. It’s not that their frame of mind is upsetting me. They are literally keeping me from doing my work, because they keep running to me and interrupting me and hijacking my workflow, to answer questions they never should have had to ask.

Sigh.

Anyway, in another 13 weeks, this is going to cease to be my problem. Oh, hell — if I can get things wrapped up before then, I’ll be free to go even earlier. I don’t have to be locked into a specific timeframe. I have had this July deadline in my mind, because that’s when I’m scheduled to be done with my big-ass project. But I might get things done even before that.

So, there’s some leeway there. And I’ve just thought of a way I can speed things up — some of the stuff I’m depending on others to do for me, I can do myself. They’re not experienced (or actually smart) enough to figure it out. Plus, they friggin’ hate my guts for reasons that are all about their crappy self-regulation, their incompetence, their jealousy, their brown-nosed politicking (which cannot stand the glare of objective scrutiny), and their sad work ethic (or lack thereof — I actually expect them to do their jobs, ogre that I am)… as well as shoddy management which just lets them get away with anything they damn’ well please.

So, the inmates are running the asylum. In a very big way.

And I have less than no confidence in them.

But the happy and sane part is, it doesn’t matter. They can be all pissy and pitch their hissy fits from their corner of the corporate cosmos. I can just work around everyone, and actually get sh*t done. I don’t have to be dependent on them to get their acts together, in order to move forward. And on top of that, I can be sharpening some excellent skills of my own in the meantime.

This task is a huge opportunity, but those idiots are not seeing it. I can see it plain as day, and I can hear the trumpets from heaven loud and clear. Their ineptitude is opening a door for me to step through, and that makes me incredibly happy, now that I think about it. For that matter, I can spend my weekend working on this, and actually get it all done in time for Monday — AND have it be an excellent investment in my future.

So, that’s good. And it’s giving me a big boost. It’s not all a waste of my time. It’s not all an exercise in futility. Far from it. It’s actually a positive thing, and turning it around in my mind to see the opportunity and the door opening a little more to my fantastic future is the first step in the right direction.

As long as my head is clear about this, and I’m rested and energized and keeping my batteries charged, it’s all good.

Later today I will have my nap. My magical 30 minutes to recharge my batteries. But for now, it’s…

Onward.

 

TBI Recovery – like life on the high seas

Avast there…

I’ve heard it said that it takes about seven years of recovery for a person to start feeling “like themself” again after traumatic brain injury. That sounds about right to me. And now that I’ve been at it (actively) since 2007, I’m coming up on seven years — next year.

What a long, strange trip it’s been. From nearly losing everything, to sabotaging job after job, to watching my friends go away, to the relationship/marriage troubles and health issues, to slowly building myself back… it has been a trip. But it’s finally starting to feel like things are stabilizing for me.

When I say “things” I mean internal things. Not external things. Learning to live with TBI is like going to sea and learning to walk across the deck of a ship that’s rolling through all sorts of seas. Between the sensory issues, the focusing issues, the distraction problems, the mood swings, the irrational and literal and rigid thinking issues… if it’s not one thing, it’s another, and just getting used to the idea that this is just how things are, has been a battle in itself.

But that’s the deal. This is how things are. And there’s no sense in trying to tamp it all down and get things to chill, because no sooner does one wave pass, than another comes along.

Walking across the deck… yeah. That’s about the best metaphor I can think of. And it puts me in the mood to read some seafaring adventure stories – Captains Courageous, Treasure Island, Two Years Before The Mast… stories I remember from when I was younger, that I really loved and enjoyed. It kinda puts me in the mood to tie knots with heavy rope… 🙂

And that’s one thing that the seafaring metaphor does for me — it raises dealing with TBI issues from a hindrance and an inconvenience and a problem, to being just part of what I have to deal with on the “high seas” of life. Rather than turning the issues into problems and vexations, it turns my ability to deal with them into strengths and abilities that I didn’t have before. I’ve been deep sea fishing a few times, and I know from personal experience that “sea legs” don’t just happen overnight. It takes time. You have to learn to roll with it. I’ve never been out to sea long enough for this to “take” with me, but I would imagine that I could learn to do just about anything, given the opportunity and time.

And opportunity and time are just what I have, with regard to this stuff.

Today, I’m pretty dizzy and off-balance. I’m also having trouble keeping focused on one thing at a time. I’m working from home today, giving myself one more day to recoup before I go back into the office, and I still don’t have my full strength back. No surprises there – I was flat on my back for a week, and this won’t fix itself overnight. I just feel “off” today — spacey and tired and weakened. I’ll see how it goes, with getting my work done. And I’ll see how it goes, taking frequent breaks to just get my head settled again.

It’s not so very different from some days when I wake up after days and weeks of not getting enough sleep, and I have to work at my peak level. It’s not so very different from some days when I’m off balance and foggy for no reason that I can tell at all. It’s not so very different from dealing with the light and noise sensitivities, the headaches, the malaise… it’s not very different from that at all. And the emotional impact it has — the frustration, the short temper, the anger, the temper flashes from a very short fuse — that’s very similar, as well.

It’s all part of life on the high seas.

Of course, it’s easy for me to say all this, years on down the line after my latest concussion injury in 2004. At the very start, when nothing made sense and I was dealing with so many, many issues that I didn’t recognize and didn’t realize were a problem, the whole business made me sick. Literally. Like being out at sea for the first time, I was in a constant state of nausea and disequilibrium. I felt stupid, I felt like an idiot, and I felt so incredibly defective because I couldn’t regulate my emotions or my behavior. Everything was falling apart around me, and I didn’t know why. And not knowing made it even worse. Not knowing that I didn’t know…  that was the worst thing of all.

So many times, I look at the stats for this blog and I see people searching for “concussion now I’m dumb” or “does concussion make you stupid”. And I remember so well what it was like to feel so stupid, all of a sudden, and not know why nothing was working for me anymore. I seriously didn’t have a clue. I knew I had hit my head. I knew I had gotten hurt. But I had no idea the effects could be as big and impactful as they turned out to be. I thought it would all clear up in a matter of a few days.

How wrong I was.

What I didn’t realize was that each time my head bounced off those stairs, connections in my brain got twisted and frayed, possibly even severed. What I didn’t realize was that those connections had taken a lifetime to put in place, and now that they were disrupted, I was going to need to practice and practice and practice, rehearse and rehearse and rehearse… doing many of the things I used to do so easily, but now had to learn to do in a slightly different way. I almost wish that the differences had been obvious — things like walking and talking. But it was really the little things, like learning and managing emotions and remembering details, that had been disrupted. And those disruptions were even more upsetting, because they weren’t something that others could see or often even detect. The only one who could tell a real difference was me… And inside, I was a torn-up mess.

Of course, years on down the line, I can look back with some perspective and understand what was going on. But at the time, before I learned all I have in the past 6-7 years, I had no perspective. I had no information. And I was going nowhere fast. No, correction — I was going somewhere fast — down, down, down. I’m just lucky that I noticed something was wrong before I went over the edge and lost everything.

Not everyone is as fortunate as I am. Not everyone manages to get it as quickly as I did. A whole lot of people struggle in silence and tell themselves to just push on through… never getting the help they need. And that’s a terrible, awful waste. Not everyone understands that the high seas they are on, are going to always be there… that once you’re on the TBI / PCS  ship, you’re not getting off. You may have some calm days, you may have some serene days, but you’ll also have fog and shoals and doldrums… and the storms will always come up again — you can bank on that.

Not everyone is stuck for all time with post-concussive issues, and thank God for that. But for those of us who are, probably the best thing to do is just settle into the daily routine of sailing the high seas… get your sea legs… and get ready for adventure. You never know, you might just come across some treasure, along the way.

Ahoy….

i have a tbi and i am tired of being stupid

Just feeling broken tonight...

Somebody searched on that yesterday, and found their way to this blog.

Can I just say, it seems like a LOT of people are doing that, lately… So many people with TBI feeling dumb, and saying so.

I’ve been feeling pretty dumb, myself, lately. I know I’m not a complete idiot, but I have been feeling dense, not quite with it, sort of stupid, on and off a lot, over the past weeks. I try to talk myself out of it, but it only goes so far. I know I’m tired, and that has a lot to do with it, but I still feel… off. Can’t seem to get right.

And yes, I have to say I agree with the person who found their way here the other day…

I also have a tbi and i am tired of being stupid

It’s so weird. I have all these coping mechanisms, I have all these tools I’ve learned to use, I have some regular support, and I know a lot about TBI and what it can do. But I still feel stupid. Dumb. Dense. And I don’t see it changing. There’s a part of me that always feels like I’ve lost parts of who I used to be, and I can’t seem to get them back. All I know is, they used to be there, and now I can’t find them anywhere.

Oh, well. What can I do? I guess I just have to keep finding out, each day, who else is “in here”. And see how far I can go with that.

But I still really resent the loss of those parts of myself, the loss of the sense that I’m a “real” person, and the loss of confidence that I’ll ever get back what has since shattered.

What’s done is done. Too bad. But geez, what I wouldn’t give to just have a sense of being 100% again. Just once.