Thank you for that Nancy!! I have been asking the insurer's psychologist for years and he kept trying to tell me that PCS is in the mind and not a brain injury. It made me keep thinking Is my brain injured........ ????? The good old self doubt in action again! People simply do not know what major effect a poor choice of words can have. I also asked him would it be ok for me to go bungy jumping - and guess what - he wouldn't give me an answer!

Nancy, I meant to ask you if PCS is Brain Injury does this mean it is Brain Damge? Would long term be Brain Damage? Hope that doesn't sound weird to you. My porblem as I have been told is that I am not nice to myself and don't make allowances - I believe that I do - but Brain Damage some how seems like my problems/ symptoms are justified . What do you think?

Here I am on my third month and I am still having some lousy days, two weeks ago I had a dizzy spell where I tripped and actually managed to sprain my two ankles! It is just sooo hard to wake up every morning and sometimes it takes a long time to just get the energy to get going and start doing things. My job keeps me long hours in front of the computer, I don't know if that is making it worse, can't be avoided though. I am also having a hard time making people understand what I am going through. A very close person told me resently that it was a question of attitude! Sometimes I doubt myself and wonder if I am not overdoing it, but this overwhelming drowsiness every morning is beyond anything I've experienced before... headaches are not too strong but they are frequent, and I get recurrent neck pain as well. I am also over sensitive to light and loud noises. Some days it feels like I'm getting better but then I'll wake up in the middle of the night with my head and neck all achy, feeling soo tired and yet unable to fall asleep again... I come to this site once or twice a week just to feel that I might not be so crazy, or lazy, or exaggerated...

I don't think there is any way that people who have not had this PCS could understand what it's like. It's been almost five month for me and I still feel lousy every day. Mornings are usually the worst, although I never had any problems with fatigue. Headaches and dizzyness are terrible. I was given gabapentin (Neurontin) by a neurologist for nerve pain and the side effects were awful, so I quit taking it after nine days and I feel like it has set me back by several weeks. Now my head hurts more and I am more dizzy that I was before. There is no magic pill!!! It did work for the head discomfort, but it was not worth it.

The computer also increases my headaches and noise was a big issue with me -- still bothers me some. Does anybody else have problems with bending forward, like emtying the dishwasher or dryer, it hurts my head.

Well I've never been a person with many friends, but I can say that the few friends that I have had, and the co-workers that I had, before (mostly) giving up on trying to work, and every family member are in as much denial as we are, and for those of us who have had this condition for a while realize all too well, the power of denial is very, very strong. The urge to deny that anything is really wrong or that it's just temporary is just so intense. Words cannot even convey how strong the desire was for me. It was hard to make it real that I was brain damaged, and that, my old life as a relatively normal functioning human being was over forever.

If it is that hard for us to accept, we who are the constant victims of our own seemingly persistent and willful scatterbrained stupidity, just imagine how difficult it must be for someone else who cannot get inside of our foggy, blocked, minds. All they see (at least for mild TBI) are behaviors that would seem relatively normal for someone to do every so often, once a month or a few times a year maybe, but we are doing them maybe 10-20 times every single day.

Of course if you have a 'moderate' to 'severe' injury you may not be able to walk or talk or understand speech or you might even still be in a coma. In that case I would imagine it would be much harder for family and friends to deny that anything is really wrong. Although I had significant language problems in the first few months after my initial trauma, and no one in my family acknowledged that anything was wrong at all. Even though I couldn't understand them when they were talking to me and even though I would slur my speech and stumble over words like English had become a foreign language to me, they *still* wouldn't believe me. In the face of that kind of willful blindness, I have no idea what could possibly convince them.

At first I found it maddening that no one ever seemed to understand or appreciate my condition: how incredibly awful it is not to be able to trust your own mind to do *anything*. And of course what we actually can or can't do is always a guess. You can't really know until you actually try it and fail. We can never have any confidence in anything. Ultimately if you can't even trust your own brain, what can you trust?

Now I accept it more and just avoid the topic to whatever extent is possible. I never tried to hide that I had brain damage (except maybe with girls). At the first sign of any sort of cognitive/organizational difficulties I am quick to remind myself and anyone who may be with me that it is not my fault. It is the head injury. It's not like I would intentionally go to my car without my car keys 6 times in a row each time forgetting what I came back to get by the time I arrived inside. I tried to limit my self-blame very early on, and I truly believe that otherwise I could not have survived.

If other people want to be willfully stupid about my condition or anything else, there is very little that I can do about it. For so many people anything that is not visible is just not real at all. They have to be able to see and touch whatever it is. And so much about our condition is just so strange. Initially when my symptoms were more severe I would try to use the analogy of a dog. I would ask them to try to imagine, really imagine, what it must be like to be a dog. Like if a dog could talk what might he tell you? No future. No past. Only the present. No real language abilities. That sort of thing. Of course if they are willing to read a book, that might be one route to some degree of understanding. Another possibility might be to have them watch the film, "Memento".

Yes,I have problems bending forward to garden etc. I get a bad headache and become dizzy. Anything that jerks my head or shakes it even slightly gives me a head ache. Travelling in a car is not good, doesn't seem to be so bad if I drive, I don't know if it is because I am hanging on to the steering wheel and you can anticipate any bumps or what. I can't spend longer than about 20 minutes at a time in a shopping mall as I can't cope with the lights and noise - the noise is unbearable. I did try playing tennis a year or so ago but that is too jerky and gave me a headache. I find the easiest/ kindest form of exercise is walking - provided there is nothing to trip over - as I am accident prone. I can't do any exercise with my head down. As far as getting others to understand I wish that I could think that I have now got to the stage that it is tough for them if they don't but at times it does get upsetting as I feel that I am having to justify myself. And yes, when I avoid doing anything because of my head I do wonder if I am just being lazy even now after 6 years of this!

Lucy,
Your brain injury created some brain damage. It is still not quite understood on what structural level, since there is no present tool to measure this. You are healing from your brain injury, so the extent of the damage could change and completely heal or other mechanisms could stregthen and compensate for some permanent issues. I think understanding that you have a significant challenge is helpful and makes it less frustrating for you but be hopeful that you can improve your quality of life and heal. Having goals for healing and staying positive will certainly improve things. There is so much not understood about the healing brain and I am very hopeful for you all.
Petenera,
There is so much to respect and admire in the "seemingly persistent and willful scatteredbrained stupidity" that you describe your efforts and the efforts of other healing souls like yourself. Stay strong and positive, you may have an injury but the core of your spirit and who you are as a person is still the same. You do not have to mourn your past self. You just may be a little shaken up in the brain but will always be the same soul you were at birth. No injury can take that away from you. I hope you will be able to exercise in a meaningful way again and find some people in your life who have patience while you heal. I am feeling optimistic that there will be better days.
Nancy

Lucy, I have the same problems in cars, although it has gotten a lot better. I agree that when I'm driving I have better control of avoiding bumps and slowing down gradually. I still drive only short distances and not at all if I feel to dizzy. I wonder if it is possible to desensitize my head. If the pain is caused by overactive nerves and tense muscles, shouldn't there be some kind of exercises to to? I still can't sleep on my back because it hurts my head. I guess I need to ask my neurologist about this and hope he has an answer.

Nancy, thank you so much for all your support and please keep us updated on your son. How is he doing? Is he free of all symtoms yet? I hope school is going well for him.

thank you Nancy.

Sissy, at one stage my muscles were so tense in my neck and shoulders that I couldn't raise my arms above my shoulders. A few weeks of physio cured that. One of my problems though, has always been that when I am very very tired, my head feels as though it is not attached to the top of my spine properly. I have tried to explain this to different specialists - to no avail The physio said that is normal with PCS. I feel that it is not muscular as I have learnt how to relax the neck shoulder muscles - is there anybody else with this feeling???: or am I imagining things......