Two steps forward, one step back… then two more steps forward

It’s still progress

There is progress on the neuro front — slow but steady. I may have found someone I can work with to help me sort out all the issues I’ve been having, but have not been able to articulate that well:

  • constant headaches
  • constant tinnitus
  • noise sensitivity
  • light sensitivity
  • balance issues
  • nausea
  • fatigue
  • muscle weakness
  • twitching in my right hand and thumb
  • tingling and numbness on the left side of my face

All the “usual suspects” of my daily life are getting to be a real pain in my ass, and now that I’m not completely wiped out each and every day by my commute, I have gotten the strength back to actually notice how screwed up things generally are for me, physically speaking.

Don’t get me wrong. My life is good. I love it. I have a good job with a great company, my debts are gone, my house is in good shape, I’m able to read and write more now, than ever before, and it’s great.

The thing is, all these symptoms — some of which have been with me for as long as I can remember — are now much more noticeable, and I would really like to do something about them.

The main thing is, I need to see if they are part of something more serious than just the everyday post-concussive wear and tear. I can definitely live my life with them in the background. I’ve been doing that for as long as I can remember. They don’t make me utterly miserable, when I manage them.

But wouldn’t it be interesting to find out what life is like without them?

That’s the next chapter of this journey, anyway. Still in development.

I haven’t forgotten about my S.O.S. – Sense-Of-Self – work, though. I’m working on a couple of other projects right now that are taking up a lot of my time and attention. I hope to get back to the SOS writing this weekend — and in fact, it would make sense, since my physiological issues and all the pieces that go with that are intimately connected with my sense-of-self. That, and my ability to communicate.

I’m feeling a little discouraged about the communication piece, actually. When I’m writing, things become very clear for me. But when I’m talking, I can’t say nearly the things that I need to say. It’s like I have a vast and ever evolving “ecosystem” in my head, but just a very small window through which the thoughts and ideas and knowledge can actually pass. That’s when I’m talking. Everything gets jumbled up, and even though it sounds like I’m saying things that make sense to others, they do not reflect what I’m really trying to say.

And people who tell me I’m making sense just depress the crap out of me, because I can’t completely express what’s truly going on inside of me, and if they could hear only half of what I want to say, it would put things in a very, very different light.

When I’m writing, however, it’s a totally different thing. Maybe because I’ve spent so much of my life writing and working on that skill, while talking has been far less of a priority with me. That, and when I talk, all the words and thoughts and concepts get jumbled up in my head.

I guess that’s my next thing to tackle — how to communicate effectively by the ways that work best for me, instead of trying to rely on spoken communications. I’ve collected a lot of data about my headaches and other symptoms, which I can share with the neuro, when I see them. And I’m working with my neuropsych to figure out how best to present everything.

It’s all an ongoing process, of course. And I need to not be too rough on myself when I fall short of where I’d like to be.These things can take time. Just gotta stick with it.

Onward….

 

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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….

More rest today

This dog’s already done for the day.

I’m going to do something today I have not done in a long time – I’m taking a sick day. I feel achey and weak and shaky, and my head hurts. This is one of those days when adrenaline alone won’t take me through the day. I just need to step away from the expected and do the unexpected — rest.

I have one phone call in an hour that I need to take, then I’m checking out and I’m doing what I need to do, to take care of myself. At some point, too, I am going back to bed. To just lie there. Read. Sleep. But rest. I may watch a movie later on, but for all intents and purposes, I am out of commission, work-wise, for the day.

It’s a difficult nearly impossible thing for me to do, to sideline myself for even a day. There is so much I want to do, so much I want to read and learn and experience and write about. There is so much that the world offers, just waiting for us to discover it. Granted, it’s not always wine and roses, but even the hard lessons are good lessons, and they all add up to good things.

Those hard lessons, like today, can include the brutal facts that there is only so much I can push myself without adequate rest. Try as I might, I have not been successful at getting more than 6-1/2 to 7 hours of sleep a night… for months, if not years. I recall getting a full 8 hours of sleep some time back, but that was weeks (if not months) ago, and to be honest, I’ve all but given up trying to set that right. I will have to do something about this, and today is a good day to do so.

Not only today… but each day. Getting proper rest, especially in times of transition and change (which for many of us, these days, is all the time), requires a bit of a re-think about lifestyle and schedule. I’m happy to say that for the past two days, I ate dinner before 7 p.m., which needs to be a priority. Eating after 8 p.m. — sometimes as late as 9:30 or 10:00 — and then going to sleep shortly after that, is no way to sustain health and well-being. Over the past year, with the job change and the longer commute, my eating and exercising have gone way off the rails, and I need to turn it around. I need to turn a lot of things around, which is hard work.

And hard work requires rest. Additional stress requires adequate recovery time, and I have not been providing myself with the latter. It’s all out of whack, and I feel so very different now, than I did 18 months ago. Little by little, I feel as though I’ve been drained by both my environment and the choices I’ve made in response to environment challenges. And I know I’ve got to turn things around, or I’m going to have some serious health consequences. No job is worth that, quite frankly. I’ve watched loved ones die early deaths because they pushed themselves too hard and didn’t take care of their health. I have no interest in following in their footsteps — although my behavior over the past years says something quite different 😉

Anyway, I find it really interesting how we can get into certain situations and fall into routines with the people around us, that really undermine our health and happiness. At work, everyone shares in this overwork ethos, pushing each other to do more, work harder, party more, work longer, and stay caught up in this whirlpool of activity. It’s like a collective addiction that everyone gets swept into, spinning us around and getting us to the point where we’re just happy to keep our heads above water. This is not a high-performance model, from where I’m sitting. When your criterion for success is not-failing, well, that’s no criterion for success. That’s just a formula for maintenance and survival.

What I want is something entirely different. And that difference is what I’m going to focus on today. Just taking myself out of that crazy spin-cycle is a start. And really focusing on the type of work experience I do want to have, is a next step. Ultimately, I believe that in addition to workplace culture and internal and external criteria for success, the quality of experience you have at work everyday, is a big determiner of how satisfied and fulfilled you are at work. I disagree with the business thinkers who proclaim that every worker is responsible for his or her own happiness in the workplace, and that each and every one of us is capable of making a purse out of a sow’s ear.

Look, sometimes a shitty workplace environment is just that — and no matter how ruggedly individualistic a person may be, there’s no avoiding the fact that some workplace configurations simply do not work (no matter what the furniture salespeople told you). My workplace configuration is sheer hell for anyone who needs to sustain concentration more than 10 minutes at a time. And it’s sheer hell for anyone who doesn’t need to know the details of their co-workers’ lives and work in blow-by-blow detail. It’s hell for anyone who places productivity at the top of their list.

What I hear happening in many corners of the business thinker world, is the focus on the empowerment of the individual — to manage themselves (and their boss) as well as their workload, workspace, and work/play time. That’s all very well and good, but too often it seems to devolve into an abdication by senior leadership from their positions of leadership — by stepping away from “micro-management” roles, they seem to step away from leadership, as well. What’s worse, a lot of them seem unwilling to accept responsibility for the decisions they make which so dreadfully affect those who report to them, as though failure by their minions to adapt to their capricious and theoretical approaches were a sign that we had done something wrong. It’s all backwards, like the out-sourcing fad of ten years ago. It’s based on a sheet of numbers and a concept that sounds great to MBA folks. But in practice, it simply does not work. And we’ve seen that, up close and personal, over the past decade.

Now yet more ridiculousness is being pandered about “empowerment and engagement” — probably originating in some MBA think-tank filled with academicians who are so specialized, they metaphorically see no connection between eating habits and constipation — being either nutrition experts or upper GI experts of colon experts or sphincter experts, and never the gaggle of experts shall meet (except at some annual conference when everybody sits in rooms listening to motivational speakers, until they go out and get drunk together each evening). Supposedly, each employee is responsible for their own survival, and they need to build a system of “supports” at work that benefit first their boss, then them, in the eternal quest for efficiency and productivity. Each individual is responsible for their own engagement level, and if you’re not fully on board with everything that’s decreed and devised by upper management, then it’s your own damn’ fault for not properly managing your energy and/or your time. And if you should find yourself overwhelmed by an unstemmed workflow, and completely exhausted by the deluge of interruptions and changes in direction by executive management who are in love with the latest MBA-related fad, then you’re not “fully embracing change” and resisting the “creative chaos” of the modern dynamic workplace and rapidly evolving job market.

It’s just so lame. I’m not seeing any self-criticism, any introspection, any brutal honesty about the ways that management overwhelms and undermines and generally sabotages the workforce with a basic unfamiliarity with what it takes to get the job done. Everybody is so busy being important, that coherence, integrity and basic workability go right out the window. But at least people are quoting the Harvard Business Review, and that’s what really matters, right?

But wait, I’m supposed to be resting right now. Not venting. Have to say, though, venting is taking some of the pressure off my head, and I’m starting to feel a little more human. I’m still exhausted, still weak, still shaky and in pain, but lo and behold, my headache is a little less brutal than it was 45 minutes ago.

So, I have one more thing I need to do for work, then after that I am done for the day, work-wise. I’ll probably go back to bed to read and rest and take it easy, which I haven’t let myself do in a number of months — and certainly not on a weekday. I can’t remember the last time It’s been over a year and a half (December, 2010, when I was deathly ill) since I last interrupted my weekly routine to just take care of myself and not push through feeling like sh*t. I usually just push through… Put my discomfort out of my mind and just muscle on through.

Time to change that.  For today, anyway.

overwhelms and

84 ways TBI can make your life really interesting

Some time back, I compiled a list of possible issues TBI can introduce into your life. I combed through a bunch of sources and then put them all together, took out the duplicates, and came up with a list of common complaints related to traumatic brain injury. I’ve refined the list over the past couple of years, and I’m sure there are more issues I’ve missed, but this is what I’ve  been working with, thus far.  These apply to mild, moderate, and severe. And a lot of them are problems I have dealt with on a regular basis throughout the course of my life.

Here’s the list, broken down by category:

Behavioral
1. Impulsiveness
2. Aggression (verbal/physical)
3. Raging behavior

Communication
4. Trouble being understood
5. Trouble understanding
6. Trouble finding words
7. Trouble communicating in general

Emotions/Moods
8. Agitated, can’t settle down
9. Angerrrrrr!!!
10. Anxiety – Feeling vague fear, worry, anticipation of doom
11. Depression, feeling down
12. Excitability!
13. Everything feels like an effort
14. Feeling unsure of yourself
15. Feelings of dread
16. Feeling like you’re observing yourself from afar
17. Feelings of well-being
18. Feeling guilty
19. Feeling hostile towards others
20. Impatience
21. Irritability
22. No desire to talk or  move
23. Feeling lonely
24. Nervousness
25. Feelings of panic
26. Rapid mood swings
27. Restlessness
28. Tearfulness, crying spells
29. Feeling tense
30. Feeling vague longing/yearning

Day-to-Day Activities
31. Being overly busy (more than usual)
32. Feeling like you can’t get moving, you’re stuck
33. Feeling like you can’t get anything done

Mental
34. Altered consciousness
35. Aura or weird reverie, trance
36. Trouble concentrating
37. Trouble making decisions easily
38. Trouble reading
39. Analytical skills suffer
40. Trouble telling what’s real or not
41. Being easily distracted
42. Being forgetful, can’t remember
43. Nightmares
44. Worrisome thoughts

Physical – Eating
45. Food cravings
46. Eating less / more than usual
47. Heartburn / indigestion / upset stomach
48. Losing weight

Physical – Head
49. Headache(s)
50. Stabbing pain(s) in your head

Physical – Hearing
51. Hearing music others don’t
52. Ears ringing (tinnitus)

Physical – Pain
53. Backache or back pain
54. General body aches
55. Joint painf or stiffness
56. Neck pain
57. Touch feels like pain

Physical – Sleep
58. Waking up too early
59. Being fatigued / tired
60. Difficulty falling asleep
61. Waking up during the night
62. Sleeping too much

Physical – Vision
63. Trouble seeing at night
64. Being sensitive to light
65. Double/blurred vision
66. Spots, floaters,  or blind spots

Physical – Sensations
67. Your skin feels like it’s crawling
68. Feeling like you’ve gained weight
69. Sensitivity to cold
70. Sensitivity to noise, sounds
71. Smelling odors / fragrances that others don’t smell

Physical – General
72. Feeling dizzy / have vertigo
73. Your heart races or pounds
74. Hot flashes or sudden feelings of warmth
75. Losing consciousness / fainting
76. Metallic taste in your mouth
77. Muscles spasms or twitching
78. Muscle weakness
79. Seizures
80. Nausea
81. Sexual desire feeling “off”
82. Skin breaking out / acne
83. Hands or feet swelling
84. Vomiting

Now, some of them might look like they are duplicates — #3. Raging behavior should be grouped with #9. Angerrrrrr!!!, right? I’ve actually split them up because one is behavioral, and one is emotional/mood related. Just because you’re angry, doesn’t mean you’re going to have raging behavior, but anger can still be a significant problem.

One thing that struck me, as I was compiling this list over the past few years, is how many of the symptoms are physical. It almost doesn’t make sense. You injure your head, you hurt your brain, and your body starts acting up? Where’s the sense in that? Well, considering that the brain is like the command center of your body, I guess it does make sense.

The other thing that has jumped out at me, as I’ve considered this list over the years, is how the non-physical issues can often arise from the physical. Being dizzy all the time can really mess with your head, and it can make you cranky and mean and short-tempered. Likewise, having constant ringing in your ears can shorten your fuse and make you much more temperamental. And chronic pain has a way of depressing the heck out of you.

Now, not everyone with a TBI will have these issues, but lots of people will have one or more of these problems, and lots of them can come and go over time. It’s just one more handful of pieces to the puzzle that is TBI. A big handful, actually.