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.

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30 thoughts on “84 ways TBI can make your life really interesting

  1. Pingback: Then and Now – TBI Issue Management « Broken Brain – Brilliant Mind

  2. I too have everything you have written. The further frustration is the Media and most People could care less…so we continue to suffer. We read articles about Foundations or deaths of People in “Certain Walks of Life” and yet when we CRY out, yes both ways in voice and pain…our hidden disability is never even heard

  3. It makes me angry that we are just tossed aside sometimes. I hope that we can get more help. I live in New Mexico. This state has a program for people with TBI called MI Via. It really helps.. I am assisted with day to day caregivers, therapy like massage and aquatic therapy. All states should help. this is a good program but we are a poor state the funds will hopefully stay in place. My doctors and therapists are good .My TBI is crappy at times. I act like Stewiw Griffin according to my caregiver… lol I have the majority of these symptoms and its really lonely. I lost all my friends, and my profession too. I have the Lord and He’s the best doctor in the universe. Thanks.

  4. Hi Karen –

    Yes, it is hard to be tossed aside. And it’s hard to lose so much. I wish there were a way that programs that help could be permanently funded by individuals who understand the need. Relying on the government is always tricky. No guarantees. I’m sorry that you lost all your friends and your profession. I truly wish that I could restore that for each and every TBI survivor, but unfortunately I am only one person with my own experience and ideas about what might help. But each of us is so different… So, I suppose the best we can do is find the good in each day, find our comfort and strength where we can, and keep going, keep doing the things we love, and find some joy along the way.

    All the best
    BB

  5. Pingback: TBI Issue of the Day: I feel unsure of myself | Broken Brain – Brilliant Mind

  6. Pingback: Dealing with it all | Broken Brain – Brilliant Mind

  7. Does anyone else have cold flashes or being very cold when it’s a “normal” temperature and everyone else seems to be comfortable or even warm or hot?

  8. I cannot taste on the right side of my mouth. Very few people, in my experience, know anything about TBI, and that includes many in the medical profession I have encountered over the years. I have struggled for 17 years on my own, and as a single mom for the last 11. If not for my son, I’d have left this world long ago.

  9. I’m sorry to hear that you’ve struggled for so long. So many of us do. I have never heard of losing your taste on one side of your mouth, but I can see how that could happen. I hope you can find some peace – in this world.

  10. I have found peace (in this world), and I certainly appreciate the sentiment. I have found my life companion in the most unlikely of places, but I understand that we typically find what we need when we stop looking for it.

  11. Additionally, (I didn’t mean to post that yet) I have found peace here, in the form of a support system of individuals who, for the most part, understand exactly my condition. You all may not be my family, but I’ll take what I can get and reflect my gratitude accordingly. Thank you for creating this community.

  12. You’re very welcome – and I’m glad you find this useful. It can be pretty difficult to find folks who understand this very unique condition. In some ways, folks with TBI are united by our differences — from the non-TBI world, as well as from each other. It’s the *kind* of differences we have, that bring us together, I think… if that makes any sense…

  13. It makes perfect sense. I feel a sense of belonging here that I’ve been lacking for half my life.

  14. My car accident 12 years ago changed my life completely. I have all the symptoms listed above minus 3, but also one very strange one. I am allergic to the cold. I breakout in painful, itchy hives and if my core gets cold enough, i turn grey and get deathly sick. I learned this after swimming for 30 minutes or so. Any ever heard of that one connected with TBI?

  15. Hm. I have heard about cold affecting a person like that. I think it’s called “cold urticaria”. I googled “cold urticaria after TBI”, and it appears that other people have it too. Check it out – you might find some kindred spirits out there.

    I once knew someone whose lungs and air passageways would start to blister if they breathed in cold air. I never heard about them having a TBI beforehand, but it could be. It was pretty wild to learn about this — they had not told me about their being allergic to intense cold until they came to visit — and it was bitterly cold outside. They had a terrible time of things, and it did not turn out well. I haven’t heard from them since.

    So, in answer to your question, I have heard of the condition, but never hear about it being collected with TBI.

  16. My most troublesome, everyday problem is my memory. I joke with others that the best thing about memory issues is that you meet new people every day. Seriously though, it is soooo frustrating living your life always forgetting things. I setup people (without memory problems) around me to remind me about the most important and urgent daily items. I write down a good portion of my day ( it doesn’t help my handwriting is terrible). I make up ridiculous rhymes to try to remember others names. Even with these protocols in place, I still screw up a LOT. I really have to thank my extended family, my kids, my wife, and God for me still having a job, my sanity, and a life. By my life, I mean that I am glad I haven’t taken mine. I have been very close to giving up on myself but those around me haven’t and I love them. That love has given me hope. Even if others leave me, God still loves me. He can give you hope and that can help you hang on for the next hour. I know from personal experience that hope can help you to hang on for the next minute. Thank you brokenbrillant for this blog. It is a great outlet and tool for post TBI survival.

  17. Thanks Corey – it sure isn’t easy, is it? But we all can find ways to hang in there and find reasons to keep on – family or faith or work, or just curiosity to see what will happen the next day. Sometimes that’s the thing that keeps me going — like you, I have such widespread memory issues that life literally feels like it’s all-new, from one day to the next. I’m fortunate that I’ve found people (like you) who can help with that. The most help comes from people who don’t judge me for forgetting, and who don’t treat me like I’m “retarded” or stupid or defective for forgetting things. I just tell myself, there is so much for me to pay attention to, right here and now, that my brain is too busy to think about things other than this moment.

    To some it might sound disorienting and frightening, and in the past it has been for me. But I have found a way to make peace with it — and that is by really focusing on the present, focusing on the here-and-now, and getting everything out of this moment that I can. There are so many things that turn out differently than I plan — when people tell me to do a better job of planning my future, I just have to laugh (silently to myself), because they apparently don’t know what it’s like to forget simple, basic things… they must not know what it’s like to go from one day to the next being surprised by things that turn out totally different from what I’d planned, because I forgot or overlooked something.

    I can’t blame them for not getting it, I just have to realize that their guidelines don’t necessarily work for me. And letting go of their guidelines and following my own, so I can have the best life humanly possible, has been a great help to me. Truly, it has. Instead of constantly focusing on the future and what my professional goals are and how I want to achieve this, that, and the other thing, I look at my life a day at a time, or a week at a time, and I focus on what will “feed” me and do more than just get me through. I look for the things that really bring joy to my life, the things that bring meaning and purpose and wholeness to my life and the lives of those around me. There is so much more to life than a handful of professional goals, the resume, the title, and all the ambition that goes with it. There is a lot of love and support that we can miss out on, if we are focused on “big picture” things to the exclusion of what’s in front of us.

    Ironically, having my memory “shot” and having it end up like Swiss cheese has taught me this. I’ve had to let go of a lot of old ways of doing and thinking and planning — and I’ve had to learn to keep it simple and really give thanks for the good that’s right in front of me. I’ve also had to learn how to “forgive myself” for my shortcomings — they’re not my fault, but it feels like I’ve failed myself, my loved ones, my co-workers, when I cannot remember things, or things get out of whack because of something I’ve overlooked. My days and weeks are full of those kinds of experiences, so I’ve had to learn how to adjust and ask for help and apologize when I’ve screwed up.

    Before I found out that TBIs were the culprit in my cognitive/behavioral/functional issues (no, it wasn’t lack of motivation or lack of willpower), I never asked for help, I never asked for directions, I never asked for clarification, and I certainly never apologized when I screwed up. Now that’s pretty much impossible for me to do, because I see how that held me back. And I also see how no one has ever held it against me, when I’ve asked for assistance when I truly needed it, or I apologized when I was truly sorry for something I did (or didn’t do).

    It is certainly a long row to hoe, that’s for sure. But one day at a time, one moment at a time, it all comes together. And when I focus on what I have – a quiet Sunday afternoon when I can just relax to the sound of raindrops falling… the love and support of family and friends… a home I’ve worked really hard for… enough health and strength to get me through the day, and enough motivation to keep building up my health and strength… then all the things I don’t have cannot rule my life anymore.

    My mother used to sing a song about how “it depends on how you look at things…” When times get tough, I sing that song to myself, to remember. Because it’s true. So much really does depend our perspective.

    I wish you well and hope that you can keep a positive outlook — just hang in there and keep going. Things get better — and even if the things themselves don’t get fixed, we learn new ways of working around them, and life goes on.

    En-Joy yourself today!

    Best
    BB

  18. This is the first time I have seen your blog. It is very imformative and I really like it. I have a lot of clients who will find it very useful and will be able to relate. I look forward to following your blog. Thank you – heidi

  19. Thanks very much, Heidi – I hope your clients do find something useful here. My main message, I guess — in addition to the info about the details of dealing with TBI on a daily basis — is “you’re not alone”… and someone else actually understands.

    Have a great and happy New Year!

  20. I agree with you. Isolation and feeling misunderstood are so prominent with every case I see! I run several TBI groups and they have formed such a close family. It is the best group I have worked with my whole professional career. So many of them were in a fog for so long not knowing what was happening in their life.

    I hope you had a good 2012 and wishing you a wonderful 2013 filled with abundant

    Joy, Peace, Contentment, and Good health…..

    May these gifts guide your path through 2013 and May there be better understanding of TBI!

    Heidi

  21. I’m having problems with my sight… and I might have sent this to you alredy?

    I agree with you. Isolation and feeling misunderstood are so prominent with every case I see! I run several TBI groups and they have formed such a close family. It is the best group I have worked with my whole professional career. So many of them were in a fog for so long not knowing what was happening in their life.

    I hope you had a good 2012 and wishing you a wonderful 2013 filled with abundant

    Joy, Peace, Contentment, and Good health…..

    May these gifts guide your path through 2013 and May there be better understanding of TBI!

    Heidi

  22. Hi Heidi,

    Yes, I believe you already sent it, but thanks for sending it again. I wish the same for you — All the best to you and yours in the new year!

    BB

  23. I was in a four car collision in Feb. of 2008. For a year, I didn’t know I had a brain injury. I just knew something was horribly wrong with me.I was diagnosed in 2009. At least the monster had a name. I worked as a department head in a nursing home until 2012. I lost my job due to the brain injury.I have been working to re-purpose my life. It is so difficult and frightening. There should be more support and understanding. Because I look normal, people expect me to act normal. Ours is often an invisible injury. Getting people to understand why our facial expression is one of disinterest and why we can’t tolerate stimuli coming at us from all directions, and why we can’t be more organized and why we get angry easily – and the list goes on and on…..is a challenge. I know what it feels like to get lost two blocks from my home. I know how it feels to not recognize someone that I have seen every Tuesday for the past two years. I know the anxiety I endure as I, an award winning author, search for my words. I have a new blog. It is 90% finished. I welcome you to check it out. It is a work in progress. It will explore some of my coping strategies. I hope to connect visitors to support and information concerning TBI. I want to bring awareness to the public about TBI through my blog,www.startinglifeinthemiddle.com

  24. Thanks for writing – sorry to hear about your accident. What you describe sounds so familiar to so many – not knowing what was wrong… just that something WAS wrong… and then dealing with things like people misunderstanding you and having those little “bugaboos” like losing track of where you are and not recognizing people anymore. And searching for words… it can be very disorienting, but things can get better. Just don’t give up. Glad to hear that you are starting a blog – more voices talking about TBI is so important. And as an award-winning author, I’m sure you will have a way with words.

    Stay strong and keep up the good work. I look forward to reading what you share in the future.

  25. It is nice to have some people who can relate to this experience. However, mine was 20 years ago and I though that I was “over it.” I have had low blood pressure for 5 years the doctors were stumped. My MRI results were overlooked as I went though all this cardiac testing… Now the MRI has become the source of excuses to put me off work and driving. I am frustrated and making myslef sick over this new disability status. I am too proud to be broken and this denial drove me… I knew I was different, special but in a good way right?

  26. You’re right – you are making yourself sick. Rather than focusing on what you can’t do, try focusing on what you CAN do. Yes, you are special in a good way. It wasn’t denial that was driving you – it was/is a genuine desire to improve, which you obviously have. Now you have a different challenge — one that can be overcome just like any other.

    Low blood pressure might be a sign of autonomic nervous system exhaustion. If you’ve been pushing yourself through fight-flight for 20 years, that sounds about right. Meditation and controlled breathing at 5 seconds per inhale and 5 seconds per exhale will balance out your fight-flight system and restore balance — which also helps you think better. If you have time on your hands, use it constructively. This is an opportunity for you to “Reset” and precious few of us get that chance — even if it’s involuntary.

    Seems to me the universe may be trying to tell you something. Rather than fighting it and resenting it and letting it make you sick, maybe work with it and see what else is possible for your life?

    Good luck! Hang in there. It’s never over with TBI, but it can get better.

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