Getting better… getting worse – life resumes years after tbi

Balance scale
It's all about the balance

Had a great trip down to see family, this past weekend. Truth to tell, I was a bit apprehensive about it all – there was a LOT of driving involved, and multiple family units, some of whom I have not seen in decades (not all of them friendly, the last time we spoke)… all on top of a seemingly unsustainable lack of sleep. Between the driving and visiting and events, there was simply no way I could have gotten 8 hours each night.

And sure enough, I didn’t.

But it all turned out alright, in part because I was prepared for it. I knew I was going to be tired. I knew I was going to be “behind” on my sleep. And I monitored my behavior pretty closely for the duration, to make sure I didn’t get ahead of myself and start down a road that would mess up my whole trip.

Only twice did I get out of hand – once when my siblings kids were disobeying their parents and doing something that was potentially dangerous, and my siblings were not pro-active at all and didn’t get them in line for their own safety. I spoke up sharply, and I think I scared the kids. But it kept them out of danger. And my siblings got a little miffed that I said anything to the kids. That kind of threw me a little bit, because in years past we’ve had a lot of confrontations where I acted out and was pretty aggressive with people around me, and they all remember that — all too well.

So there was the old “vibe” about “BB is up to their old tricks again – they just can’t be trusted in polite company – just a bad seed” that I had to work so hard to overcome in my mind over the years. It threw me for a couple of hours that morning, but then I went to lie down for a nap, had a little rest, and then I got up feeling a little better. But when I joined everyone else, I was still out of sorts, and I had an argument with my spouse that got very tense. They were also on edge, because my family can be very demanding and judgmental and pretty rough on everyone, and my spouse has never been comfortable with that level of harshness in family settings. They think that family should unconditionally support one another, while my family thinks that it’s the family’s duty to find fault with and correct each others’ “flaws”.

So, we had a bit of a squabble that day. We weren’t the only ones, though. My siblings were all having trouble with their spouses, and at various points, they were all split off in different rooms, having “talks” to sort things out.

But at least we did.

So, things actually went okay, for the duration of the trip. And I had some good conversations with family members.

One thing I noticed, however, is that my “flashpoint” is higher than it used to be, but it’s more powerful. The things that used to always set me off with my family didn’t affect me as much as they used to, but when they did hit, my reaction to them was much stronger than in the past. In the past, the discomfort and issues would simmer in the background and be like this sub-text of my experience. Now, however, they just bubble right up to the top and explode. Not as extremely as they used to, when I was a kid, but still…

Just ask my spouse. It’s a wonder I didn’t threaten divorce in the course of our conversation. I thought about it. Seriously. And I was prepared to go through with it. But when I gave myself some time to simmer down and chill out, I saw how ridiculous I was being. I wish I could say I had a good laugh about it, but it bothered me. I knew I was being stupid and ridiculous, but it wasn’t amusing to me. It was bothersome.

So, in the after-hours since getting home late-late-late last night, I’m looking back at the weekend, choosing how I will think about it. I could choose to focus on those two stages of a near-meltdown and think the whole time was ruined by them. Or I could focus on all the really great times I had with people I haven’t seen in years, who genuinely care about me and were very loving and engaging, despite my troubled past.

I feel in a lot of ways, as though my life with my extended family has “resumed”. For many years, I kept my distance from them because I had so many troubles communicating with them, and I felt like I was always getting turned around — and that really upset me. People in my family “knew I had problems” but they didn’t understand why that was, and they often didn’t treat me well. So, I kept my distance. Or when I was with them, I didn’t come out of my shell very well.

I was literally a captive of my perceptions of myself. I felt like I was too “problematic” for them, and they probably picked up on that and treated me accordingly. I sort of have this reputation in my family as being a bit of a loser — plenty of potential, but somehow lacking the moral fortitude to do anything with it. That reputation has dragged me down so very much, and in the past, I didn’t have much hope of interacting well with them, so I never gave myself a chance to just be who I was with them.

That has changed dramatically, however, in the past several years. Working with my neuropsych, they’ve just about convinced me that I’m not profoundly, mortally flawed and an intermittent danger to myself and others. I’ve been learning to give myself a chance around people, engaging with them, striking up conversations and interacting in healthy, productive ways. And I’ve been really gingerly resuming contact with people who I’d steered clear of in the past.

Now, it hasn’t been easy going. It’s been touch and go, and I’ve actually backed off on a lot of social interactions that I once had. I’ve stepped away from a lot of old friendships and acquaintances, to keep myself sane and centered. But sometimes I’ve distanced myself from people just out of laziness. And a desire to withdraw, isolate, and do my own thing without having to work with others. That has not been the biggest improvement in my life.

And yet, it serves its purpose. When it comes time to interact with people, I’m far less depleted. I am aware of my challenges, and I take proactive steps to deal with them. Being aware helps. So long as it doesn’t hold me back. Fortunately, this past weekend, it didn’t hold me back very much, aside from a few blips in the road.

I would like to get to a point where I can freely interact with people, connect, and just have a conversation… eventually building up friendships.  I’m not quite there, yet. I think this is one way I’ve slid back over the past few years, while I’ve advanced in other ways. I think I’ll get there, eventually. Maybe sooner than later. But I’m not quite there yet.  Sometimes I get down on myself, thinking I should be farther along. These things take time, though. It will come.

I guess this is just how it is… Steps forward, steps back. TBI is never easy, and it has its share of surprises. I’ll count my blessings that I had such a good weekend and such a good time with my relatives. Right now, that’s what counts.

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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.