Why complain?

I’ve been thinking a lot about my work with my neuropsych, lately. My work has gotten past the basic survival stuff, where I’m just getting my head around what is going on with me. I’ve gotten to the point where I’m looking beyond my immediate issues and focusing on the big picture, to where I can make a difference in my own life — and possibly the lives of others.

I’ve always had a deep need to make difference beyond my own individual life, and so often my issues have gotten in my way.  Susceptibility to distraction and short-term interference… the anxiety that would come up and completely turn me around. And of course the anxiety is fed by the cumulative effects of that “TBI Cascade”:The Downward Spiral of Agitation and Fatigue

It doesn’t always happen like this, but the fact that it has happened in the past, makes me susceptible to anxiety about it happening again.

I think that’s the biggest thing hanging over my head – it happened before. Is it going to happen again? The fatigue, the confusion, the agitation, the busy-ness, the frustration, the pain, the distractability, the failure to understand, the failure to be understood. Anxiety over all this actually makes things worse, and it can be a real killer.

One of the ways that my neuropsych has helped me immensely is by helping me think through how to handle these things. The main thing they’ve accomplished is convincing me that I can handle these things. That I do have the resources and the capability to deal effectively with these problems. Before (as in, just about all my life), I would let them get the better of me, and I would get so turned around and upset by what happened — and the prospect of it happening again — that I would be completely thrown off track. Not good. Not good at all.

It didn’t help matters at all that people around me all treated me like the things that I had done and said in the past defined me in the present and also determined my future. What a load of crap. I see that now, but when I was 10 years old, being browbeaten by my father for being “stupid” and screwing up all over again, I couldn’t see that. The adults in my life couldn’t see it, and I certainly couldn’t, at that age. I mean, part of me knew they were all wrong about me, and I wasn’t stupid and retarded and mentally ill, the way they said I was. And I constructed a private world inside me (not unlike Marwencol) where I could be safe and act out in my own mind the kinds of scenarios where I was safe and secure and could be fully functional.

I had a very lively imaginary life, when I was younger. It was the one place where I could be safe and normal, and nobody gave a crap about the things I messed up. Nobody ever gave up on me in my imaginary place, they always gave me the benefit of the doubt, and I was always treated with respect and high regard by the imaginary personalities I invented  and interacted with behind closed doors.

Even up till the time when I started my neuropsych rehab, I was engaged with this imaginary world. I would have some great conversations with people in the car, driving to and from work. Some people talk to themselves. And I guess I was, except that my conversations were always directed towards another person who I imagined was there. That person would always be attentive and respectful and treat me like an intelligent individual. I didn’t have to constantly prove myself to them. Maybe I was talking to my “better angels”. But at least I was interacting. Some people don’t even bother to pretend. They just shut themselves off and don’t even try. Or they find solace in playing roles in the outside world that someone else invents for them. They aren’t really there and the roles aren’t really them, but they find solace in them, and they are able to function in the world as a result.

It’s like I was role-playing for life.

But anyway, back to complaining… I have to say, after working with a neuropsych for the past three years, I have found my physical issues to be much more manageable. Fatigue can be managed by just being realistic and mindful about my energy levels. And the pain has been greatly alleviated by reducing stressors in my life (not to mention exercising more and seeing a network chiropractor regularly for several years). So many of my really BIG physical issues — tinnitus, pain, balance problems, sensory sensitivities — arise from fatigue… when I manage my fatigue with common sense and responsible choices, many of them let up. And so many of my cognitive issues arise from the physical issues that arise from fatigue, so having a way of dealing with the fatigue and sleep problems and energy levels, that I get to solve a bunch of different problems by handling that core issue.

So, where does complaining come in? Well, basically, it comes into play when I am feeling hugely sorry for myself, and I am thinking that I can’t do anything about what’s going on with me. I tend to complain when I am over-tired and in this mindset that I am “stuck” with whatever bad situation is in front of me. Instead of doing something about it, I belly-ache and whine and moan about this, that, and the other thing.  And nothing gets done. Nothing changes.

Which is completely contrary to the truth of what is possible. The truth of the matter is that I do have the ability to change things. I can make different choices in my life that lead to different outcomes. I needn’t stay stuck in how things are, when they don’t serve me and my goals. Of course, in order to see that things don’t serve me, I need to know what goals I have, what I intend to accomplish, and how to bring that into being.

It’s all management issues. And when I get overwhelmed and tired and forget what I’m about, it can be all too easy to fall back into complaining-mode.

But why complain? Really? I have more power than I realize, to effect the kinds of changes I want to see in my life. We all do. The problem is when I/we get too fuzzy and foggy and overwhelmed with minutiae to develop a clear idea of what those changes can/should be.

That’s where long weekends like this come into play — an extra day to rest and rethink my life. I do a lot of rethinking on a regular basis. I have to back out of the busy-ness of the day-to-day and remind myself of what I want to do with my life, as a whole. It’s not just about what I want to accomplish at work, not just what chores I need to get done, what tasks I want to check off my to-do list. It’s about something much larger and more important, more lasting, more enduring, and ultimately more impactful, than just taking care of stuff that needs to be done.

Why complain, when I can create something far better?

Why indeed?

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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.