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Traumatic Brain Injury

I'm having a hard time accepting this may be my life forever

#1

It’s been over 2 years since my last brain injury and my life is pretty much at a screeching halt. I sat patiently the first year and thought well I’m just going through the motions and it will get better, well here I am 2 years later and it hasn’t got any better, probably worse. I’m getting really tired of being a prisoner in my own body and mind and I have no escape or relief which is literally eating me alive. I sit here everyday and watch my life pass before my eyes and see everyone having fun and enjoying their summer, camping, swimming and doing all the things I used to love that I am no longer able to do and it’s really depressing me heavily. I’m in pain all day, chronically fatigued, the floor feels like it’s dropping out from under my feet everytime I stand up, my heart goes into arrhythmia or palpatates for no reason and the shittiest part of it all is all the meds they want me to take give me horrible side effects. I finally just got on Medicare for disability and am able to try other forms of treatment but I’m not able to get myself there because I feel so Terrible I can barely leave my house. Everyone in my life has abandoned me or given up on me and I cannot get the help I need anymore to get to the Dr or to these appointments. I really get why people with brain injuries are so suicidal because they feel so hopeless and everyone looks at you like it’s all in your head. Lately feeling like being dead would be much easier but everytime it’s on my mind I either pray really hard, think about my dog or my mom both which are in horrible health and how much they need me or if it gets really bad and this might sound super morbid or fucked up, but I force myself to look on Google at people with gunshot wounds to their heads who failed to kill themselves and it seems to snap me out of it real quick like, do I really want to have that happen to me and have to live like that for the rest of my life? I normally don’t post in any groups or on forums but I just happened to check my old email and saw an update on here and figured what the hell can it hurt. Not sure if this will get seen or if I even posted this right but I’m really low right now and needed to get this off my chest.

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#2

Hey Ryan, I have to agree with you, the acceptance bit is the hardest part of this bloody awful journey. Some days that acceptance seems easy, other days… …it’s absolute hell. The understanding (or lack of) from others outside of this reality is a torment in itself. They seem to be getting on with life, where mine has stagnated. As for the medical fraternity, ohh don’t get me started, I have lost all faith in them EVER having the answers. They tell me that after a year the body has fully healed, so everything has healed and now I’m OK, but I’m not. They are scientists and in science A+B=C, no matter where in the world you go A+B=C. All of their textbooks tell them A+B=C, if you break your leg, it affects your leg, 8weeks in plaster, which everyone can see and your leg is healed. But we are not in the textbook, we haven’t got a broken leg, we don’t have an injury people can see, we have a broken brain and as the saying goes " If you’ve seen one brain injury, you’ve seen ONE brain injury…" No two BI’s are the same. So trying to label us and place us in a single box is impossible. Personally, I’ve had numerous BI’s and 6 neurosurgeries and no two have had the same symptoms, nor results. The dr’s like things to fit into nice, tidy boxes, but I don’t fit their boxes and because I don’t fit or conform to their boxes they label my issues as psychological as if I’m in this position by my own choice. Who the hell would choose this??? Not I that’s for damn sure.

Ryan, I know this ‘hellish route’ we are on is far from easy and others maybe all too quick to make judgements, but to be honest with you, the only people who truly know are people who have been here. Come talk to us because we truly know.

Merl

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#3

Ryan, how are you doing this evening? I am hoping you are feeling better. I want to give you this link, in case you are not. I will apologize if I am being too forward, I think there are times in life when we all need someone to talk to. I have started seeing a counselor pretty often myself.
https://suicidepreventionlifeline.org/
Is there any kind of Medicaid transportation in the area where you live? I was wondering if there was, if they could possibly help you with your dr appointments?
I am sure your mom and your dog do need you and I imagine they would both be devastated if you were no longer around.
I felt a lot like you are describing, as far as being so tired all the time, the chronic fatigue stuff. I felt like I could sleep 23 hours a day. That has gotten a lot better, but I don’t push myself, or I try not to, because when I do, I will get a migraine and its not worth it. Its been 15 years, I have good days and bad days, and we are all different but I can say I am in a better place than I was in even 5 years ago.
My heart goes out to you, I pray you are feeling some better tonight.
Please let us know how you are.

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#4

Hi Ryan,

Just want to let you know that you are not alone. It’s probably how you feel most of the time, but just the fact that you are reaching out to others is a good sign. The most important thing you can do for yourself is keep busy. Staying inside is not going to solve anything. But, by going out, even if you go for a walk does more good and helps to clear your mind.

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#5

Ryan, i am 22 years post TBI, and i went through a time like you describe. We survived when many don’t. Sometimes it feels like that’s a bad thing, but trust me, every day is better. Yes, there will be days you’ll feel like this letter describes, but when i was in your situation, i decided consciously not to react that day. The next day i was past that day. There was always another day with much the same life, but it is easier everyday. When you are feeling down, come here and talk to us please. We are a board for talking about your life.
Karyn Hughes
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#6

I used to feel like that all the time. I still have days I feel like that. Hang in there. Having tbi is definitely not a walk in the park and many of us felt like that a long time and still feel that way sometimes

. If it helps any it took up to my third year before my head quit hurting all the time. (By all the time I mean worst migraine of your life 24/7, many of the things you talk about too like being dizzy)

It didn’t take until my fourth year until I could handle really going outside at all. (August will be my 5th year).

You definitely aren’t alone. Please come talk to us whenever you need to. I know it’s hard but don’t be afraid to reach out.
Hugs.

I know none of that is a big help but we do care here.

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#7

Sorry for the late response guys and thank you all for being so kind. I try to remind myself that every day is a new day but some days are worse and drag me into the never ending abyss. The hardest part in all of this is losing the people you thought really loved and cared for you because they look at you and think you aren’t trying, it’s like just because I look like a normal guy on the outside doesn’t mean I’m normal on the inside. And I always seem to get well your not trying hard enough, your not doing what it takes especially when it comes to meds but for me meds make me worse and I have all kinds of horrible side effects. Everyone’s answer is always why don’t you just pop this pill or that pill, believe me if I could find that magic pill that didn’t make me feel worse and gave me any relief and a chance at my old life id eat them like to tacs. I truly believe that is the hardest part about being a tbi survivor is all the judgement and everyone Thinks they have an idea what it’s like but they don’t even know unless they have been through this hell. I’m trying to harness all the bitterness and negativity towards me and my situation to drive me to get better so one day when I’m finally able to get out and get back up on that horse I can prove all the doubters and nay sayers that they were wrong and weren’t meant for the greatness I have to offer. Either way I keep pushing forward it’s all I know how to do. I truly believe God gives his toughest battles to his strongest soldiers and has chosen me for a reason, may it be to learn from this and help others or to just change the way I thought before all this happened. I look back at my life before and think, man all that shit i used to bitch about was just that pitty little shit and now the only thing that matters is, health, family and love for all things big or small. I figured I’d write this because I’m having a better day and wanted you guys to know the real me and not just the brain damaged downer. With that said thank you all again for your love and support I will continue to update my progress and try to support you all the way you have myself.

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#8

Hey Ryan,
For me, I have to say, that ‘losing people’ bit was/is difficult. And as I said, if we had an injury others could see, ie a broken leg in plaster, there would be no question of the impediment. People are very quick to judge, but usually they only judge from what thy can see. Often I have people tell me “Ohh you look like shit…” I tell them what they can see is minimal, they want to have a look from my side. The ‘shit’ they can see is nothing compared to my reality. Many think they know, they don’t. They think they have good advise “Just take some paracetamol…” they may mean well, but I find it very condescending. For me paracetamol is a bit like having a sugar tablet, stuff all use at all.
The ‘letting go’ of our old life is another massive battle, one that, even now 4-5yrs on from my last major incident, I still battle with. I figure that if I have a problem with it how can anybody else grasp it. Some people make comments with the best of intentions, but I’d like to take them out the back and slap them upside the head and explain just how ignorant and arrogant their comments are, as if any of us choose to be in this predicament. But I can’t do that, so I force a smile and say ‘thank you for that’, when what I want to say is “IDIOT”.
This is a long, hard road and we know it like others never will.
Merl

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#9

I hear you. Also it might not be.

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#10

Ryan_O, thanks for the update. I’m glad you were having a better day when you posted this, and I hope things are still better.
I understand about the pills as well as the people who just don’t understand this. It gets old. That’s why I love having this board to visit, its nice to talk to others who really understand.

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#11

Here I am a few days later back in the thick of the shit. Is it just me or does anyone else have major problems throughout their whole body? Ever since my last head injury, I have major gastrointestinal issues from ulcers, to Ibs to all sorts of other crap from cramping to bloating. And then there is my heart skipping beats and going into arrhythmia, no and hr any rocketing for no reason at all and shortness of breath. I’ve had major testing done and they cannot seem to find the cause of all this other than my gastro issues. I’m at a loss for what to do next I just don’t know how much more of this chaos I can take. It’s like right now I feel like my guts are being twisted between 2 crocodiles and my testing he is 120bpms which isn’t life threatening but enough to make me feel like I’m going crazy and gonna crawl out of my skin. I had gastro issues in the past bit never heart issues, never stomach problems this bad. And all this crap does is makes my anxiety a milliom.times worse and i feel like I’m being attacked from all sides. Is this just me that this happens to? It’s so scary and it sucks because my support either doesn’t believe this is happening to me or just thinks I’m a whiner and that further makes me want to flip out. I feel like I’m spinning out of control literally.

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#12

Hey Ryan,
The brain is like the CPU (Central Processing Unit) of a computer, it controls EVERYTHING. It was once explained to me that a BI can often be compared to opening the box of your computer and throwing in a hand full of metal filings, the result being that there will be short circuits all through the system. I too have had issues with arrhythmia, I saw my pcp, who wrote my symptoms off. I told him I wanted to see a cardiologist, he reluctantly agreed. The cardio gave me a monitor for 24hrs which showed very little, BUT whilst I was seeing him to return the device I started having palpitations then and there in his treatment room. He got out his stethoscope and listened and sure enough he then agreed there was an issue and has given me medication to assist and it has helped. I still get the palpitations but nowhere near as often.
I can guarantee you that you are not the only one whose issues get written off as psych related, mine did for many years. It wasn’t until the medicos could do a test and the results showed that there was an issue that the finally listened, but this took me going and getting a 2nd, 3rd and 4th opinion before it was acknowledged. The medical referrals needed to see a specialist often stated “psych issues” so there was a prejudicial opinion before I started. For this reason I changed my pcp and did not disclose the former psych diagnosis to remove the perceived prejudice.
Ryan, it is very easy/simple to be standing on the outside making judgements. But when you are the one living this it ain’t that easy nor simple. My only recommendation is don’t give up and don’t be taking the judgement of others to heart, honestly, they truly have no idea. It may take a bit to find a dr who will listen but there are some out there who are willing to take our a challenge such as yours and mine. After years of hunting I’ve been lucky enough to find one, so I know they are there, but as I say, it did take years to find a good one.
Merl

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#13

Yes, it seemed like a lot of things went haywire with me also. Not anywhere near as much as you though. My thyroid was out of whack, this was shortly after the 2 brain surgeries. Its hard to get drs to actually listen to us, it seems. I think some drs saw on my chart that I had had 2 brain surgeries and just wrote me off as being nuts. I might be crazy, but I had things wrong with me that other drs were able to find and fix.
Don’t give up. There is someone out there who can help you. Its just finding the right one. Personally, I have had better luck with nurse practitioners and physican assistants than mds for some reason, but that’s just me. They are the ones who have sat down and listened to me and been able to figure things out. The mds, mainly, just acted like I was an idiot and sent me on my way.
Good Luck.

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#14

I find it really disappointing the number of us who have difficulties with the medical profession. Initially I thought it was just me and as this has been an ongoing issue, I came to simply accept it as just ‘me’, but I am seeing more and more that it ain’t just me. It makes me wonder why this has not been addressed. I have to agree with you Aly that it does seem that it is the Dr’s at the top of the field who seem very quick to pass judgement and personally I’d think that they should be the first to acknowledge the reality that we face, but this most definitely is not the case. The simplest answer is to label us all as nuts, and with one or two maybe mental issue are a contributor, but surely when the figures start getting into double digits, it would be worth them investigating. I have queried Dr’s previously and, to put it mildly, they did not like that, asking me if I intended to sue. I have never and will never sue, hell in my view if they didn’t operate I’d be dead, plain and simple. I’m looking for answers not money. But it seems that doubt over my intentions restricts their willingness in assisting me to find a solution and that #$%^%$# me off no end. I wonder, how do we get this addressed for the whole neuro community? We are not crazy, we have genuine, bona fide issues. Labelling us all as bonkers is not an acceptable answer.

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#15

Ryan_O,

I want to start off by saying I like how you spell your name. It is like a symbol of who you use to be and the line into the hole of who you are now. The line between your name and the O feels heavy. The torment within appears like alienation, depression, self-doubt, and paranoia. It also appears you feel life is mocking you, others mock you and if you once were in love with someone this failure to love mocks you. Failure appears to be mocking you. From my experience this mocking experience, even feeling like God is mocking me, creates a tormented consciousness. Death, for me, was a final solution to the ongoing problem of life. I used to welcome death as a chance to merge with nothingness and to do away with this painful self-consciousness.

What touches me about your writing is your realness. From your writing you appear to feel utterly defective, and yet I want to suggest you let go or release how you may feel mocked by your failures, even the failure of your own body. My body also no longer produces sufficient energy for my body functions, mitochondria disease, (mitochondria is a parts of the cell that combine the calories we consume with oxygen and turn this combination into energy which runs everything in our body). It is complex system with reference to the autonomic system, adrenal gland, blood sugar and everything else. It is like everything inside the body is out of balance and the body sighs deeply.

This deep sigh is difficult and yet hidden in it is courage. I am not speaking of courage to just drag yourself through each day and to toughen yourself up. Rather true courage arises in the heart when we can learn to be present and deeply grounded to the moment. This courage is tremendous support and gives inner strength naturally. This courage draws on inner qualities of strength. It is like spring water, supportive, fresh, real, and vital. I write this because I feel this courage is in you or you could not write about your hopelessness so directly. Your courage is how you express that there is nowhere to hide from the hole.

So if you feel the hole is mocking you, everyone and everything else is also mocking you, maybe tap into your inner springs of courage. Your courage I feel in you is a high achievement and I say this because you appear to know what it means to look to someone else for help. Your name even appears to symbolize this courage, like the courage to put yourself on the line between you and the hole. And I realize this is hole is difficult and this hole has unconscious roots of wanting to tell me fuck off mister, but your courage, even in your mass of contradictions, is above and beyond external difficulties and appears to be moving against inner doubt.

Courage is your supportive presence Ryan and for some reason something within appears to recognize this courage cannot be harmed. I am not able to grasp this energy I feel in your spirit, where everything seems to have gone wrong and yet your courage is there. There is freedom here, inner springs of courage, and your inner essence is felt and experienced. This place within you is beyond my words and I just want you to know I am pleased to be part of your courage, beyond the limits of the sky and it cannot be lost.

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