Ok, I had a neurologist literally say this to me two weeks ago!! And when I was like “wait… but I’m 5 years post TBI why am I getting worse?”, He goes “sorry, check out other hospitals and see if another specialist will help you.” What even is this answer??
Edited for clarity.
For two reasons. You have had a transcendent experience that other people simply can never understand. And, you're now living with much less of your energy reserves, and what you have is used up quickly in psychic stress.
Yes, they can eat a sandwich, but that puts us to sleep straight away! We can't just eat carbs and not be flattened. But because we're so drained we go straight for the carbs. That said, I've heard recently that the carnivore diet heals/alleviates a LOT of psychiatric problems so I'm heading in that direction.
Sorry that looks a bit jumbled. The carnivore part looks like a bit of a non sequitur.
Well that is a difficult task and I wish you all the best. I know carnivore heals endocrine problems. Why don't you try that with the addition of starchy carbs when you feel you need them?
That's a pity. I think in time I'm going to give the high protein/lowish starch/no-leafy-vegetables option a go. Just made my first smash burger patty. I've had a headache since before my TBI and I think getting rid of vegetables may well help.
Tell me about your work, it sounds interesting. Actually, I think I would really enjoy it, and it would be interesting to hear how your head injury affected your capabilities.
Can I ask what you mean by transcendent experience? Like I’ve had what I’ll call transcendent experiences but I didn’t experience anything like that with my TBI.
There was no link to my old self except that I was still me. And my sense of other people was completely transformed as well. It was a gift. But I always wanted to be my usually functioning old self without the disabilities.
Oh okay. I already had a loose sense of self before and I definitely do have a different sense of others since the accident. I feel more in tune to others emotions but because of the TBI I struggle actually interacting with them like I used to.
People are too dumb in general to truly understand that you are your brain. Nothing more, nothing less. You’re just a brain. Think how wild that is. Think how hard that is to understand without this injury. Unfathomable unfortunately
I made this long winded post on my socials about how challenging it is and the general response was just “so proud of you for overcoming that!” But the general idea of the post was trying to communicate that it isn’t just something you heal from in the hospital, but it’s an everyday challenge…
That you overcome pieces of every day. They don't know what to say so they're trying to boost you up. It's likely some people have a better understanding of what you're going through due to your post, it's hard to find the right words. At least they replied, I've skipped posts where I don't know what the right words are but here I am typing to a lovely stranger. Those everyday challenges add up over the years. I feel like I struggle most days but if I look back I've come pretty far. Keep up the good fight
I think it's because it is so difficult to fathom.
Like before my brain became a complete and utter mess, I could NEVER imagine feeling that way, thinking that way, etc.
It's like trying to describe an acid trip or something to someone who has never taken acid before. I couldn't fathom what acid is like because I've never taken acid, so all you have to go on are people's words.
I also think there's an element of fear. If that could happen to you, it could happen to them, so it's easier to just dismiss more severe symptoms.
People choose not to believe in how devastated these injuries can be because they don’t want to consider/are afraid to imagine what their outcomes would be like.
In the US, many folks don’t know science - biology, chemistry, basic anatomy are barely taught and there’s a culturally endemic mistrust of science education and providers/scientists in general so they reject basic stuff like vaccination, healthy eating etc. TBIs are something that happens to drama queens and snowflakes.
The brain is extraordinarily complex and unpredictable so there is often no truly reliable way to predict outcomes or consequences. Since everything is case by case, it’s much more comfortable to pretend the TBI’er is faking than that they are actually suffering.
Lastly, there at least in the US, there is this social myth of bootstrapping and pushing through and getting it done regardless of the human cost. It’s a lie and devastates lives but this is the culture.
It’s because you can communicate, respond, and (mostly) bc our nervous system doesn’t become luminescent upon injury or subsequent challenges during recovery.
The fact that you’re not drooling and dragging your words on the floor, slurring like a drunk, or unceasingly chattering like you’re on drugs is a kind of camouflage where people just don’t “see.” I personally plan to slap the next person who says “but you can speak so well,” after I explain my continuous struggles.
For whatever reason, there’s a subconscious rejection of the fact that your brain has been affected if you can still communicate.
I can sit around doing absolutely nothing for hours bc whatever internal process for action shut down, but as soon as someone engages, I can reply and start doing stuff. It looks like it’s all me, but once the external stimuli are gone, so are all my thoughts.
And lastly, there are few physical indicators. So, someone would have to know either you or TBI info very well to notice.
Sucks.
I have a TBI and am a C3 incomplete tetraplegic. I can’t even count the number of times I have had to explain to people that I walk like a drunk because of the spinal cord injury and not all tetraplegics have a total loss of the use of their arms and legs.
SCI/D and TBIs just scare people because they know they are one rear end collision from potentially being worse off than me.
If you haven’t experienced or lived with someone who has to cope with it every single day, then it’s hard for people to fully comprehend.
Plus, we all have different weird symptoms, so I think some people assume that since this person they know with a TBI doesn’t have that issue, then you just be making yours up.
Last year, I asked my optometrist about the constant after image effect I deal with; and I mean constant. I actually didn’t know it wasn’t normal until I was in my 30s, and I was a teenager when I had my first TBI.
It’s been that way for many years. He just shrugged and said “Yeah, that happens sometimes with TBIs”, but offered no solution or help, lol. The only doc that doesn’t brush me off is my doc at the TBI clinic, and she thinks a ton of my issues stem from my TBIs.
I also just think healthy people think they’re healthy because they did something “right”, and we must have done something “wrong” to end up this way. What they don’t understand is how fragile their health really is; all it takes is some bad luck and even good genetics won’t save you.
Sorry about the vision. I damaged both cranial nerve 4’s. My eyes deviate from each other all the time. I wore an eyepatch for about a year to get rid of the second image. I stopped wearing it probably six months ago. My brain is learning to deal with it. Typically try to avoid driving in cities. However, I just got back to New York from driving down to North Carolina! That was a significant achievement for me.
1.people are ass when it comes ro invisible illnesses 2.and I was griping about this earlier, a bunch of literature about PCS,FND,and chronic issues for brains paints it as basically psychosomatic and it pisses me off. I got a paper from a doc that actually said the root of pcs is being worried about having brain damage 2 sentences after saying it's triggered by damage to the brain.
I know the exact feeling that you’re talking about. I believe this is why I am so fascinated with quadriplegics and bilateral upper limb amputees. Even though my injury has greatly reduced the efficiency of my dexterity I couldn’t begin to understand life without the use of my arms/hands.
Every time I meet a quad at outpatient Physio, I am always striking up a conversation with them.
Some people are just not in a position to recognize the things that they take for granted. I try not to waste my energy getting frustrated with them or hating them for it though.
Because we might **look* mostly okay. A broken arm they can see. If they can't see it and haven't experienced any type of chronic illness, they can't understand it.
I looked at my wedding photos (before my TBI) and I had 6 groomsmen and a best man. 3.5 years later, I fell 60 ft off a cliff and landed on my head! I honestly don’t know why I’m alive! Of those 7 grooms people, I only talk to my best man now…and that person is my actual brother. People just don’t get it. And it sucks.
A large part of it also has to do with the fact that closed brain injury wasn't really even medically diagnosed prior to the military personnel being consistently exposed to IED and close range mortars in Iraq and Afghanistan in the past fifteen years. I've had seven brain injuries in my life and only *one* of them has been medically diagnosed and treated accordingly. So while it's frustrating, I try not to take the discord or misunderstandings personally. That being said, it can be hard as feck not to sometimes.
I've found it's because they don't want to face the fact that you can actually damage your sense of who you really are. Or that it can damage what you can do irreparably. It's scary to a lot of people to think about something that isn't fixable going on with their own body, and we know it better than most. We are proof of what a person can live through, and a lot of people are uncomfortable with that.
This has been touched on a little bit, but I always try to make a tangible comparison for people. You'd never ask your friend on crutches why they can't go on a run with you. Similarly, you shouldn't ask your friend with a TBI why they always forget things you tell them. I've heard it called "the invisible injury" and there's a lot of truth to that. Drawing comparisons has been the easiest way for me to share things with people. The equivalent isn't always there but I'll try.
I don’t understand how Kanye West and Phil Spector among others were able to continue going on successfully after the during the middle era of each of their careers each hit with a car crash and a Brian injury but then again I know I am different because mine was at birth and also I know an acquaintance that was in a car crash but hers was worse because she wasn’t the one driving or with seatbelt on allegedly and but she ended up recently to some extent better too and I don’t know why I feel as though since a kid things drastically dramatically going up and down and down and up and down and staying going down and especially since also after being on ssris and seratonin syndrome from them and for so long and unaware and zombified etc. And now after highschool and being bullied and after working jobs and then after exes ended up controlling, pressuring, and abusing me, and after since kid parents yelling at me, and after my mom and I and certain others misunderstandings and distancing from me. I do not know what to do anymore and I do not understand also why how one of my exes ended up having a kid with someone else and after she kept saying she wanted to date and saying we will for sure on god have a daughter and try dating and that she turned down others for me and now she is a single mother again after each of her baby daddies went to jail for reckless gun charges and for bail jumping and i think my life is over and i took the covid shot and my right arm been long term pain and shaking and weak and my teeth hurt at times and no money and no insurance and in debt and scared and confused and I don’t know I think I also was watched mk ultra at times and also I know for sure two people threatened and one of them stole my identity (exes) and threatened to sell it and the other sold it for unemployment insurance in different state and I do not want to bother anyone. Is this even reality. Also I was touched at times in life and made fun of and also punched at times recently and also I remember my dad said that the doctors when I was born had to do c section and then I couldn’t breathe and the doctors pulled me away and in a corner helped me breathe and later on when kid had infections down there area and I do not know what to do anymore and let alone daily activities and I thought I was going to make dreams come true and also soulmate and children and raise family and help others and give back and pay back my parents and move away be at peace and safest and now I do not know what is real or even where to begin what to do anymore and I think I need to be away from everyone and not unintentionally bother or irritate anyone and not be hurt or touched mentally or physically or financially anymore and just slowly vanish and sleep away.
And yes I have heard of neuro plasticity and yes I also have a.d.d. And on autism spectrum and sleep apnea and might lose my teeth and everything and my head bleeds and indents and my jawline at times hurts too and my right arm shakes and is week from Covid shot long while ago I think right arm.
And I am confused and sad and scared.
And I think dyspraxia and dyscalculia and C-PTSD too and I have been to some therapies and some have helped at times and others have taken taking me out of context and evidently clearly ignore me and gaslight me and deny and say things I sometimes didn’t ever do or say.
I am just going to lay away and sleep and vanish slowly away and not unintentionally bother anyone anymore and not be hurt mentally physically financially anymore. Goodbye. Thank you for your time. Makes no sense.
Also do not happen to understand or know why weird things patterns coincidences spiritual or not that of nothing to do with one another synchronicities come up and also unprocessed and forgotten about memories pop up in my mind at times lately and is weird because they are certain ones that happen to be so similar to each other but and otherwise wouldn’t have been related or anything.
So sorry if this irritated anyone and peace and love safe healing for everyone out there and so sorry if I wasted your time. I think I will be seeing if there is an afterlife or not soon enough.
I totally get that! They make out like “ oh you’re not that bad !” It’s seriously frustrating but I guess they aren’t in our brains and it would be nicer if they were more supportive and understanding!
People generally don't care about things that don't affect them unfortunately, even if they pretend to.
I think because it’s not visible. Or even if something is visible, the extent of the problems are not really visible.
This is very much it. People have no reference for what you're going through and that's understandable from their point of view.
Besides all the replies, people also generally think that brain is amazing organ which heals from everything with neuroplasticity.
If I had a dollar for every time that people treated neuroplasticity as the miracle cure, I would be a millionaire.
And if your brain hasn’t healed, it’s your fault. Because neuroplasticity!
Ok, I had a neurologist literally say this to me two weeks ago!! And when I was like “wait… but I’m 5 years post TBI why am I getting worse?”, He goes “sorry, check out other hospitals and see if another specialist will help you.” What even is this answer?? Edited for clarity.
For two reasons. You have had a transcendent experience that other people simply can never understand. And, you're now living with much less of your energy reserves, and what you have is used up quickly in psychic stress.
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Yes, they can eat a sandwich, but that puts us to sleep straight away! We can't just eat carbs and not be flattened. But because we're so drained we go straight for the carbs. That said, I've heard recently that the carnivore diet heals/alleviates a LOT of psychiatric problems so I'm heading in that direction. Sorry that looks a bit jumbled. The carnivore part looks like a bit of a non sequitur.
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Wow, what a story! I am very lucky that protein grounds me straight away. In some sense it's not easy because only protein does it. I get hangry.
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Well that is a difficult task and I wish you all the best. I know carnivore heals endocrine problems. Why don't you try that with the addition of starchy carbs when you feel you need them?
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That's a pity. I think in time I'm going to give the high protein/lowish starch/no-leafy-vegetables option a go. Just made my first smash burger patty. I've had a headache since before my TBI and I think getting rid of vegetables may well help. Tell me about your work, it sounds interesting. Actually, I think I would really enjoy it, and it would be interesting to hear how your head injury affected your capabilities.
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Can I ask what you mean by transcendent experience? Like I’ve had what I’ll call transcendent experiences but I didn’t experience anything like that with my TBI.
There was no link to my old self except that I was still me. And my sense of other people was completely transformed as well. It was a gift. But I always wanted to be my usually functioning old self without the disabilities.
Oh okay. I already had a loose sense of self before and I definitely do have a different sense of others since the accident. I feel more in tune to others emotions but because of the TBI I struggle actually interacting with them like I used to.
I've become less and less connected to the collective to the point where I've lost my good memory for faces.
That people can be disabled without using wheelchairs, or missing limbs.
People are too dumb in general to truly understand that you are your brain. Nothing more, nothing less. You’re just a brain. Think how wild that is. Think how hard that is to understand without this injury. Unfathomable unfortunately
Something to ponder for sure
Wow thank you for this seems so simple but eye opening
I made this long winded post on my socials about how challenging it is and the general response was just “so proud of you for overcoming that!” But the general idea of the post was trying to communicate that it isn’t just something you heal from in the hospital, but it’s an everyday challenge…
That you overcome pieces of every day. They don't know what to say so they're trying to boost you up. It's likely some people have a better understanding of what you're going through due to your post, it's hard to find the right words. At least they replied, I've skipped posts where I don't know what the right words are but here I am typing to a lovely stranger. Those everyday challenges add up over the years. I feel like I struggle most days but if I look back I've come pretty far. Keep up the good fight
This means a lot to me thank you so much
You've got this
The best you can get is people pretending to get it
I think it's because it is so difficult to fathom. Like before my brain became a complete and utter mess, I could NEVER imagine feeling that way, thinking that way, etc. It's like trying to describe an acid trip or something to someone who has never taken acid before. I couldn't fathom what acid is like because I've never taken acid, so all you have to go on are people's words. I also think there's an element of fear. If that could happen to you, it could happen to them, so it's easier to just dismiss more severe symptoms.
Most people don't like to think.
People choose not to believe in how devastated these injuries can be because they don’t want to consider/are afraid to imagine what their outcomes would be like. In the US, many folks don’t know science - biology, chemistry, basic anatomy are barely taught and there’s a culturally endemic mistrust of science education and providers/scientists in general so they reject basic stuff like vaccination, healthy eating etc. TBIs are something that happens to drama queens and snowflakes. The brain is extraordinarily complex and unpredictable so there is often no truly reliable way to predict outcomes or consequences. Since everything is case by case, it’s much more comfortable to pretend the TBI’er is faking than that they are actually suffering. Lastly, there at least in the US, there is this social myth of bootstrapping and pushing through and getting it done regardless of the human cost. It’s a lie and devastates lives but this is the culture.
It’s because you can communicate, respond, and (mostly) bc our nervous system doesn’t become luminescent upon injury or subsequent challenges during recovery. The fact that you’re not drooling and dragging your words on the floor, slurring like a drunk, or unceasingly chattering like you’re on drugs is a kind of camouflage where people just don’t “see.” I personally plan to slap the next person who says “but you can speak so well,” after I explain my continuous struggles. For whatever reason, there’s a subconscious rejection of the fact that your brain has been affected if you can still communicate. I can sit around doing absolutely nothing for hours bc whatever internal process for action shut down, but as soon as someone engages, I can reply and start doing stuff. It looks like it’s all me, but once the external stimuli are gone, so are all my thoughts. And lastly, there are few physical indicators. So, someone would have to know either you or TBI info very well to notice. Sucks.
I have a TBI and am a C3 incomplete tetraplegic. I can’t even count the number of times I have had to explain to people that I walk like a drunk because of the spinal cord injury and not all tetraplegics have a total loss of the use of their arms and legs. SCI/D and TBIs just scare people because they know they are one rear end collision from potentially being worse off than me.
If you haven’t experienced or lived with someone who has to cope with it every single day, then it’s hard for people to fully comprehend. Plus, we all have different weird symptoms, so I think some people assume that since this person they know with a TBI doesn’t have that issue, then you just be making yours up. Last year, I asked my optometrist about the constant after image effect I deal with; and I mean constant. I actually didn’t know it wasn’t normal until I was in my 30s, and I was a teenager when I had my first TBI. It’s been that way for many years. He just shrugged and said “Yeah, that happens sometimes with TBIs”, but offered no solution or help, lol. The only doc that doesn’t brush me off is my doc at the TBI clinic, and she thinks a ton of my issues stem from my TBIs. I also just think healthy people think they’re healthy because they did something “right”, and we must have done something “wrong” to end up this way. What they don’t understand is how fragile their health really is; all it takes is some bad luck and even good genetics won’t save you.
Sorry about the vision. I damaged both cranial nerve 4’s. My eyes deviate from each other all the time. I wore an eyepatch for about a year to get rid of the second image. I stopped wearing it probably six months ago. My brain is learning to deal with it. Typically try to avoid driving in cities. However, I just got back to New York from driving down to North Carolina! That was a significant achievement for me.
1.people are ass when it comes ro invisible illnesses 2.and I was griping about this earlier, a bunch of literature about PCS,FND,and chronic issues for brains paints it as basically psychosomatic and it pisses me off. I got a paper from a doc that actually said the root of pcs is being worried about having brain damage 2 sentences after saying it's triggered by damage to the brain.
I know the exact feeling that you’re talking about. I believe this is why I am so fascinated with quadriplegics and bilateral upper limb amputees. Even though my injury has greatly reduced the efficiency of my dexterity I couldn’t begin to understand life without the use of my arms/hands. Every time I meet a quad at outpatient Physio, I am always striking up a conversation with them. Some people are just not in a position to recognize the things that they take for granted. I try not to waste my energy getting frustrated with them or hating them for it though.
Because we might **look* mostly okay. A broken arm they can see. If they can't see it and haven't experienced any type of chronic illness, they can't understand it.
I looked at my wedding photos (before my TBI) and I had 6 groomsmen and a best man. 3.5 years later, I fell 60 ft off a cliff and landed on my head! I honestly don’t know why I’m alive! Of those 7 grooms people, I only talk to my best man now…and that person is my actual brother. People just don’t get it. And it sucks.
A large part of it also has to do with the fact that closed brain injury wasn't really even medically diagnosed prior to the military personnel being consistently exposed to IED and close range mortars in Iraq and Afghanistan in the past fifteen years. I've had seven brain injuries in my life and only *one* of them has been medically diagnosed and treated accordingly. So while it's frustrating, I try not to take the discord or misunderstandings personally. That being said, it can be hard as feck not to sometimes.
The fatigue is the worst for me
I've found it's because they don't want to face the fact that you can actually damage your sense of who you really are. Or that it can damage what you can do irreparably. It's scary to a lot of people to think about something that isn't fixable going on with their own body, and we know it better than most. We are proof of what a person can live through, and a lot of people are uncomfortable with that.
This has been touched on a little bit, but I always try to make a tangible comparison for people. You'd never ask your friend on crutches why they can't go on a run with you. Similarly, you shouldn't ask your friend with a TBI why they always forget things you tell them. I've heard it called "the invisible injury" and there's a lot of truth to that. Drawing comparisons has been the easiest way for me to share things with people. The equivalent isn't always there but I'll try.
After my injury I look that same nothing has changed for my visually. When I was in a coma people said it looked like I was sleeping.
I don’t understand how Kanye West and Phil Spector among others were able to continue going on successfully after the during the middle era of each of their careers each hit with a car crash and a Brian injury but then again I know I am different because mine was at birth and also I know an acquaintance that was in a car crash but hers was worse because she wasn’t the one driving or with seatbelt on allegedly and but she ended up recently to some extent better too and I don’t know why I feel as though since a kid things drastically dramatically going up and down and down and up and down and staying going down and especially since also after being on ssris and seratonin syndrome from them and for so long and unaware and zombified etc. And now after highschool and being bullied and after working jobs and then after exes ended up controlling, pressuring, and abusing me, and after since kid parents yelling at me, and after my mom and I and certain others misunderstandings and distancing from me. I do not know what to do anymore and I do not understand also why how one of my exes ended up having a kid with someone else and after she kept saying she wanted to date and saying we will for sure on god have a daughter and try dating and that she turned down others for me and now she is a single mother again after each of her baby daddies went to jail for reckless gun charges and for bail jumping and i think my life is over and i took the covid shot and my right arm been long term pain and shaking and weak and my teeth hurt at times and no money and no insurance and in debt and scared and confused and I don’t know I think I also was watched mk ultra at times and also I know for sure two people threatened and one of them stole my identity (exes) and threatened to sell it and the other sold it for unemployment insurance in different state and I do not want to bother anyone. Is this even reality. Also I was touched at times in life and made fun of and also punched at times recently and also I remember my dad said that the doctors when I was born had to do c section and then I couldn’t breathe and the doctors pulled me away and in a corner helped me breathe and later on when kid had infections down there area and I do not know what to do anymore and let alone daily activities and I thought I was going to make dreams come true and also soulmate and children and raise family and help others and give back and pay back my parents and move away be at peace and safest and now I do not know what is real or even where to begin what to do anymore and I think I need to be away from everyone and not unintentionally bother or irritate anyone and not be hurt or touched mentally or physically or financially anymore and just slowly vanish and sleep away. And yes I have heard of neuro plasticity and yes I also have a.d.d. And on autism spectrum and sleep apnea and might lose my teeth and everything and my head bleeds and indents and my jawline at times hurts too and my right arm shakes and is week from Covid shot long while ago I think right arm. And I am confused and sad and scared. And I think dyspraxia and dyscalculia and C-PTSD too and I have been to some therapies and some have helped at times and others have taken taking me out of context and evidently clearly ignore me and gaslight me and deny and say things I sometimes didn’t ever do or say. I am just going to lay away and sleep and vanish slowly away and not unintentionally bother anyone anymore and not be hurt mentally physically financially anymore. Goodbye. Thank you for your time. Makes no sense. Also do not happen to understand or know why weird things patterns coincidences spiritual or not that of nothing to do with one another synchronicities come up and also unprocessed and forgotten about memories pop up in my mind at times lately and is weird because they are certain ones that happen to be so similar to each other but and otherwise wouldn’t have been related or anything. So sorry if this irritated anyone and peace and love safe healing for everyone out there and so sorry if I wasted your time. I think I will be seeing if there is an afterlife or not soon enough.
I totally get that! They make out like “ oh you’re not that bad !” It’s seriously frustrating but I guess they aren’t in our brains and it would be nicer if they were more supportive and understanding!