Hey Southernguy,
I too find it very disconcerting when they use labels like ‘mild’ and ‘NCD’. I want to turn around and say 'Well here, you have it, you manage it. Now tell me that its ‘mild’. And as for NCD, every damn brain injury is NCD, even stubbing your toe could be considered an NCD. Would you consider a stubbed toe and a BI to be anything like equivalent? of course not. I feel often these labels are simply made so these dr’s can give an undefined diagnosis and what use is that? This is part of the reason I’ve given up on the dr’s having any useful answers, even I can come up with theories like that. I don’t need a dr to tell me those.
I also find myself re-doing things, repeating myself, losing things etc. And as for the symptoms “…headaches, intolerance of noise and crowds, dizziness, visual disturbances…” they have just become part of the daily battle. As I’ve said before "“I must have been a real bad bastard in a past life to deserve this lot”
If only people knew what it was like to be like this. But, they probably won’t and I hope they don’t. I feel like I am swimming in a fish bowl. People treat you like they don’t trust you to be around you, like you’re subhuman. They just don’t understand and I believe TBI people are more stigmatized than any group out there. All of my days slip away from me, but I remember prior to my accident with near perfection. I just sit here asking myself how can this be? The docs do not have useful answers. It is impossible to understand this without actually living it and dealing with it.
Hi Southernguy,
You’ve hit the nail on the head! Great analogy re feeling exactly like living in a fish bowl, made to feel subhuman. May I ask when was your TBI?
Hello Astrid. I was ejected from a utility vehicle a bit over a year ago. I landed on my back and head. Foolishly, I attempted to shake the whole thing off, despite significant, full body pain. But, I had tinnitus that never quit and still has not, massive headaches, dizzy/wooziness, and began to notice that I was forgetting things, having problems with math calculations, and just a general feeling of being displaced from everything. As time wore on, the forgetfulness began to concern me greatly. The point that I knew something was terribly wrong- I was watching a movie when asked why I was watching that again. I kept watching thinking no way. But then, a point came along that I remembered seeing, and then a few more and I realized that I most probably had to have watched it before.
I then became on “high alert” so to speak thinking that I was getting dementia and basically nearly driving myself nuts at the prospect of such. I finally went to a doc and gave him the details. He suggested a neuropsychological exam as it had been some time since the accident and that scans would likely not tell much and most probably wouldn’t have had I immediately had one.
So, I did the N-Psch exam and it showed mild to moderate neurocognitive deficits primarily in encoding that were of the kind that were attained through damage to the brain circuitry. Also, it showed I was suffering from GAD and symptoms of PTSD.
The findings of that exam literally brought me to my knees- to think that this was who I may possibly be from that point forward. I’m sitting here now with a horrible headache and in my usual state of disconnection. I can operate and function in the present fairly decently. But, when 2 things come up at once, I go to pieces. When trying to make a decision, I go to pieces. When I do make a decision, I second guess it on and on. I had an incredible sense of humor that has vanished. I had a very compelling personality that has vanished. I’m like a book with no writing on the pages. My past experiences are mostly intact. My present ones are faded, vague things that continually dissolve from that point to near nothing. I had an IQ that was extremely high and now it’s just average. I don’t care to be around people. I cannot stand to be in a crowd and if it’s noisy I can’t handle it at all.
And the worst part, no one can relate to what you are going through and for the most part they think you’re just “crazy”. I tried to keep the diagnosis to myself but it got out anyway and now I just want to be left alone.
You’ve brought me to tears, everything that you’ve said is remarkably articulate and pretty much sums up all the struggles…
Hey Southernguy,
OHH SHIT!!!..OUCH…that hit a raw nerve with me.
I used to be quite proud of my memory but had noticed a decline, I thought it might be age and was/am a bit concerned about early onset dementia. Since my initial injury I’ve had 6 neurosurgeries and after each the decline has gotten worse and worse. I’ve compensated in ways to cover it up. Made jokes about it. Written it off as funny. But now it’s scary, not funny.
When I was younger I tired to speak to dr’s about it all but was labelled ‘crazy’. Once a medical professional gives you that label it sticks and follows you everywhere. It got to the point where Dr’s wouldn’t listen because another dr labelled me as a nutter. It wasn’t until there was a major medical episode that they investigated further and worked out that I wasn’t crazy and there was an issue. I was so VERY angry, all that time I’d been telling the dr’s and no one listened. Today I have a very low tolerance for the arrogance of the medical profession and when they start minimising my concerns I tend to get a bit anti (OK so very anti). To avoid judgement from medicos or anybody else for that matter I isolated myself, stayed away. This was a bad move for me. Sitting, swirling around in my own head wound me into such a mess. I found it much better to reach out and talk about it. For me, when the only input to the conversation was my own, I’d get stuck swirling around and around. To have another drop their ideas in, changed the conversation content and gave a differing context. All I needed to do was acknowledge, I needed help. I say ‘…all I needed to do…’ as if that was simple, it wasn’t simple at all. But I found isolation more destructive than useful. I had to say ‘HELP’
Merl
Im sorry for bringing you to tears! I can come to tears just sitting around. If there is one good thing about this mess- I can keep watching stuff I had not seen before the injury over and over and it’s always kinda like a new release! But, I’d rather be out digging ditches than what I have going on.
I have always tried my best to stay away from doctors. Nothing personal, I just feel that they tend not to listen very well and get locked in rather than being as investigative as they should. But, they are a fact of life now, unfortunately.
Yes, I agree. They are very concrete in their thinking. In their view I’m just the patient (who has very little patience) I wouldn’t know shit. They are the dr’s, they have a piece of paper to prove it, a degree. I have in the past challenged them and their theories and they DO NOT like that, they have tagged my file as a ‘non compliant patient’. It’s not that I’m non compliant, I simply do not consider them nor their opinions as godlike, where many people do and this has given them a god complex. Now I go to their appointments, go ‘yes sir’ ‘no sir’ then go home and manage all of this for me, not them. Their theories all come from a book, our realities come from first hand experiences. No book can ever give you this reality, hell, I don’t want this reality either but as you say it’s “…a fact of life now…” BLOODY DR’S GRRRrrrrrrr
Hey Merl,
I know what you’re coming from. If a brain injury is organic, then how does talking heal you. Talking doesn’t mend broken bones, so how will it heal this organic matter? And, they may have a degree, but one thing they don’t have is the most important part- a brain injury. And without one- one can’t possibly relate. Yea, I have anxiety and depressive issues going on, but I’ve had them before and popped a pill here and there and went about my business. This just flat out “ain’t” got anything to with having anxiety and depressive issues. While they may be there, they are in a whole new context that cannot be explained in a manner such as to get someone to understand what you’re truly trying to get through. They (therapists) make me think of the lyrics of a Pink Floyd song- “You’re lips move, but I can’t here what you’re saying”.
God help us all.
Hey Southernguy,
"Yea, I have anxiety and depressive issues going on, but I’ve had them before and popped a pill here and there and went about my business. This just flat out “ain’t” got anything to with having anxiety and depressive issues.…"
Ohh but you have a history. I too have a history and this is one of the first things the medicos hold up as causation. Its that same old argument of "what came first, the chicken or the egg?"
Was it the TBI that caused the mental health issues? or was the mental health already a factor brought forward by the TBI? Either way I’m a nutter. TSK. It’s much easier to blame the patient than it is to investigate and then they wonder why I have no faith in the dr’s. I can be harder on myself than they will ever be. As if I am in this position by choice WTF???. Who the hell would choose this??? Not I, that’s for bloody sure.
So, like I say, “…I go to their appointments, go ‘yes sir’ ‘no sir’ then go home and manage all of this for me, not them…” I get my painkiller prescription from them and that’s about it.
“God help us…” What god? There ain’t no god around here, that’s for sure.
Life in general is a crock. It all depends on who you are as to how you are believed and the credibility you are given. Tell a doc you’re hurt and the doc is one person, tell him you are hurt and someone else is liable in your mind, he becomes another.
Yes, I’ve had anxiety issues, but I haven’t had what I have now for certain. The truth is is that everyone has issues. Some just find coping incredibly easy, some cope with difficulty but manage to mask their issues. Some don’t cope well at all, and some just go bonkers.
We really only have 2 choices, deal with it, or end it. I don’t want to end it.
I used to feel punished by a greater force for a long time. Now I see that any thing is possible. A successful woman has dyslexia. We just need to tap in to our inner strengths.
It can be a struggle for me too some times, I am going to put some make up on to feel better then go for a walk to buy more make up.
I will pick up on my daily walks as stopped for three days. Little did I know this would affect my mental health greatly.
I say this with the upmost respect to you all.
We can live as a victim of life or an overcomer. We have got this. 
Lets show everyone that we can do this regardless.
We all are worthy. Xx.
The Game of life and how to play it talks you through step by step getting anything you want. I am on chapter 6 it is amazing. I write points down in a pad highlighting.
It is helping me it should help others too.
They sell this too on Audible is what I use.