I am usually pretty good at faking at being high functioning. Today is not one of
those days: earlier I was yelling obscenities at the gas pump and was on the
verge of driving away before getting my gas pumped, because the glare on the screen and the screaming advertisements were all TOO MUCH. I'm pretty lucky. I have a "mild" TBI, and I have a lot of resources. I have years of therapy and addiction recovery under my belt, I
have friends who offer support (emotionally, mentally, physically), I have a wife
who is super supportive/patient/willing to help/able to see when I'm freaking
the fuck out and need a life line, and financially, although we have to be
careful we have enough back up that when I need a work-timeout I can take it.
May of 2015 (I think...time lines are all fucked up since
then) I smashed my head. No exciting story, I'm a civilian who was just being "graceful" A
year and a few weeks previous I had smashed my head, again, no exciting story.
Literally the week before this last one I had been saying how I was starting to feel
"normal" again. I
knew this one was different that the rest(seriously, I smash my head on average monthly hard enough to leave a lump, sometimes to leave me dazed for
days/weeks); I had unrelenting nausea and headaches, confusion, trouble with words,
what I refer to as "visual confusion", memory issues, and all kinds
of shit I can't remember. I'm notorious for not going to the doctor, but by mid-week I told my wife it was time to
haul my ass to the urgent care. Great experience: I got a CT scan, and no other physical
examination or testing, and a stack of papers that said "you don't have an
active brain bleed" and "if you have headache, nausea, or confusion
to go immediately to the ER"...which was exactly what I had, and exactly
what I had done. It was a doctor friend that confirmed, "yes, that was a
concussion" since the UC staff
couldn't even be bothered with that.
So, I went on for months waiting for things to get better.
And things some did a little. The headaches eventually went from daily, to almost
daily, and as they improved the nausea improved-these days it a few times a week usually, and not all of them debilitating. The cognitive stuff was
another story though. Whether it got worse, or I just noticed things more acutely/clearly once
the fog lifted I don't know but it got worse before it got better. The "visual confusion" has slightly improved I think just because I've learned to cope with it, rather than IT is better-what I mean by visual confusion is things like I backed my
wife's car into my own because I couldn't "see" my car because I was
looking for hers, or it I'm looking for a pen and I think it's blue I can't see it right in front of me if it actually happens to be black. Up until about a year ago I couldn't remember more than 3 things at once, now if I'm in a controlled environment my short term memory is pretty good. And I still struggle, I mean I was going to bring the laundry basket down with me just now for my 2:30am edit...but I just remembered. My long-term memory had a lot of holes in it; I couldn't remember
things my wife and I had done together, and argued with her about the fact
until she gave me enough cues that the memory that seemingly didn't exist
finally popped back into the file cabinet. My long-term memory recall has improved some, and I've learned that it just takes a lot of cues to pull up the information, and I've learned to coach people on this. My dizziness has improved greatly...until I ride a plane, or get sick, or some fun stuff, but I can recover in days or weeks, and I've gotten more tools to deal with this one through PT.
Some things aren't so great, probably most of all the difficultly modulating stress and my reactions to it (See paragraph 1). Low Stress Tolerance-limited stressors=major flip outs. In addition to the flip-outs my mood swings are not so pleasant...anxiety, apathy, depression. Full-discloure: I've suffered from depression and anxiety since I was a kid, but the levels of major depression I've been hitting since the TBI are rough, especially combined with the apathy. Before I could always get out of bed and manage my Lists for the day, but when the apathy or hard depression hits, it's all I can do to get the have-to-does done (work, feed the dogs)...and for the first time in my adult life there are days when brushing my teeth is just "too much." Let that sink it: Brushing My Teeth Is TOO MUCH. Although memory has improved, especially if I'm in a quiet environment, my focus is still crap (I'm luck if I can ready 3 books a year, and even listening to audiobooks is challenging). Headaches are way better, but they are still easily triggered by stress; reading; concentration; over-stimulation; fluorescent lights; lack of sleep; completely random shit. While I was working full time (up until a few months ago) I had headaches every Monday; like lay me out flat with a head over my pillow by evening type headaches. I think the headaches were a combo of fluorescent light overload, and having to re-acclimate each week to the Brain Mana (see below) shortage. The other major not-so-great is that I can't tune out stuff...I hear every conversation, I see every flash of movement; my filtration system is completely busted so I get overwhelmed in loud, bright, or busy environments.
Some things aren't so great, probably most of all the difficultly modulating stress and my reactions to it (See paragraph 1). Low Stress Tolerance-limited stressors=major flip outs. In addition to the flip-outs my mood swings are not so pleasant...anxiety, apathy, depression. Full-discloure: I've suffered from depression and anxiety since I was a kid, but the levels of major depression I've been hitting since the TBI are rough, especially combined with the apathy. Before I could always get out of bed and manage my Lists for the day, but when the apathy or hard depression hits, it's all I can do to get the have-to-does done (work, feed the dogs)...and for the first time in my adult life there are days when brushing my teeth is just "too much." Let that sink it: Brushing My Teeth Is TOO MUCH. Although memory has improved, especially if I'm in a quiet environment, my focus is still crap (I'm luck if I can ready 3 books a year, and even listening to audiobooks is challenging). Headaches are way better, but they are still easily triggered by stress; reading; concentration; over-stimulation; fluorescent lights; lack of sleep; completely random shit. While I was working full time (up until a few months ago) I had headaches every Monday; like lay me out flat with a head over my pillow by evening type headaches. I think the headaches were a combo of fluorescent light overload, and having to re-acclimate each week to the Brain Mana (see below) shortage. The other major not-so-great is that I can't tune out stuff...I hear every conversation, I see every flash of movement; my filtration system is completely busted so I get overwhelmed in loud, bright, or busy environments.
I met with a fellow "mild" TBI sufferer
yesterday and we discussed our symptoms, many the same. We talked a lot about the over-stimulation, and exhaustion that comes with it, and she had a great way of describing it. I've forgotten the term she used but I immediately came up with my own, "Brain-Points" or "Brain-Mana" (#MagicTheGathering). So the premise behind Brain Mana (let's call it "BM" cuz I'm a child) is that there are different activities and events that require
more brain energy (Mana) than others, and after a TBI you have very limited BM (Think Richard Simmons and the Deal a Meal diet plan..we're on a VERY restrictive
diet here!)
On a good day (well rested, low stress, no wake-up-headache) I might have 15-20 Brain Mana. However throw a few wrenches in the works, hell drop the whole toolbox cuz once things go to shit its a like getting caught in an avalanche, then there's a lot less BM to help me navigate the day. If I have to drive somewhere then I'm dealing with sensory overload and require high attention/focus=5 points of Mana, if traffic sucks, make it 8 BM. If I go to grocery store which means lots of sensory input/overwhelm, and fluorescent light=4 BM. Now if in the previous example this were a good day I've just used a major allotment of my BM, and I still have to cook, work (and since I'm in health care I have to fully present for my patients, fill out medical records promptly and correctly=20 BM right there), do some blogging, be present for my wife, oh, and I was hoping to read that book that's been on my shelf for the last 3 months collecting dust. Throw in a physical, mental, or emotional stressor and my world goes to shit in a Napalm extravaganza, and I'm starting the day with a fraction of the BM...this can be things like our dog dying last weekend, breaking my foot in September, getting the flu...these thing lead to magical moments like yelling at the gas pump! The more stressors, the more navigating basic Activities of Daily Living become completely overwhelming and insurmountable-much like Lucy in the chocolate factory.
Traumatic Brain Injuries aren't just a "little headache" for a few days. Even mild TBIs can be permanently life altering. Sadly, we have a long way to go in brain care, and diagnoses...and understanding. Even being able to write a few paragraphs, or even sentences takes hours because I can't maintain my focus, or because what I thought I typed is actually "word salad." Again, I'm lucky because I do have a lot of resources, and I've been able to implement a lot of coping strategies in spite of the overwhelming lack of support from the medical professionals I've seen.
If you or someone you love might be having some TBI issues, here are a few things that I have found helpful:
1. If I'm going to be around bright light or fluorescent light wear UV blocking glasses (yellow safety glasses work for me, or if you can have the financial resources visit a Irlen Institute test center https://irlen.com/find-an-irlen-test-center/
2. Earplugs for noisy places (Keep them in your pocket)...bar, grocery store, restaurant, party, etc.
3. Be cautious with caffeine, especially if the injury has increased/caused anxiety.
4. Have lots of quiet time...plan lots of quiet time. It is NECESSARY, especially after outings/work/concentration requirements.
5. Leave overstimulating situations...have a buddy who can help you exit or be an external monitor to say, "you're looking a little twitchy, it's time to go home!"
6. Challenge the brain/create new pathways: Soduko, learn a new language or instrument, take classes, draw, sculpt, new hobbies!
7. Eat regular meals, get lots of protein and hydrate.
8. See a PT trained in Vestibular Rehab to deal with dizziness/vertigo.
9. Ask for help.
10. Be upfront about TBI issues when it is safe to do so. Shame is stupid.
On a good day (well rested, low stress, no wake-up-headache) I might have 15-20 Brain Mana. However throw a few wrenches in the works, hell drop the whole toolbox cuz once things go to shit its a like getting caught in an avalanche, then there's a lot less BM to help me navigate the day. If I have to drive somewhere then I'm dealing with sensory overload and require high attention/focus=5 points of Mana, if traffic sucks, make it 8 BM. If I go to grocery store which means lots of sensory input/overwhelm, and fluorescent light=4 BM. Now if in the previous example this were a good day I've just used a major allotment of my BM, and I still have to cook, work (and since I'm in health care I have to fully present for my patients, fill out medical records promptly and correctly=20 BM right there), do some blogging, be present for my wife, oh, and I was hoping to read that book that's been on my shelf for the last 3 months collecting dust. Throw in a physical, mental, or emotional stressor and my world goes to shit in a Napalm extravaganza, and I'm starting the day with a fraction of the BM...this can be things like our dog dying last weekend, breaking my foot in September, getting the flu...these thing lead to magical moments like yelling at the gas pump! The more stressors, the more navigating basic Activities of Daily Living become completely overwhelming and insurmountable-much like Lucy in the chocolate factory.
Traumatic Brain Injuries aren't just a "little headache" for a few days. Even mild TBIs can be permanently life altering. Sadly, we have a long way to go in brain care, and diagnoses...and understanding. Even being able to write a few paragraphs, or even sentences takes hours because I can't maintain my focus, or because what I thought I typed is actually "word salad." Again, I'm lucky because I do have a lot of resources, and I've been able to implement a lot of coping strategies in spite of the overwhelming lack of support from the medical professionals I've seen.
If you or someone you love might be having some TBI issues, here are a few things that I have found helpful:
1. If I'm going to be around bright light or fluorescent light wear UV blocking glasses (yellow safety glasses work for me, or if you can have the financial resources visit a Irlen Institute test center https://irlen.com/find-an-irlen-test-center/
2. Earplugs for noisy places (Keep them in your pocket)...bar, grocery store, restaurant, party, etc.
3. Be cautious with caffeine, especially if the injury has increased/caused anxiety.
4. Have lots of quiet time...plan lots of quiet time. It is NECESSARY, especially after outings/work/concentration requirements.
5. Leave overstimulating situations...have a buddy who can help you exit or be an external monitor to say, "you're looking a little twitchy, it's time to go home!"
6. Challenge the brain/create new pathways: Soduko, learn a new language or instrument, take classes, draw, sculpt, new hobbies!
7. Eat regular meals, get lots of protein and hydrate.
8. See a PT trained in Vestibular Rehab to deal with dizziness/vertigo.
9. Ask for help.
10. Be upfront about TBI issues when it is safe to do so. Shame is stupid.
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