I know exactly how you feel as i was there for a long time before too. I'm still not back at work but I have found a couple of volunteer jobs. I have some other activities i do like some sports and have made new friends who seem to accept me for who I am. Now my life is jam packed, not the way I ever thought it would be but I really am happy now.
I love when my life is so busy. For a long time I felt like i was just keeping myself going as if I stopped I would have a massive break down but in time if you can find things you really enjoy. things that give you back something too at the same time as you feel you are giving something, things can be ok again.
I really thought I would have a different life 5 years after my accident but I do have a different life, its not what I thought it would be but its still great. I feel fufilled and I'm happy.
It takes time but you have to in time come to terms with what your situation is now and then you can go about finding new ways to get the fulfillment we all need from life.
Things don't always work out the way we dreamed or planned but we can find new ways to be happy and make a sucess of life

My hubby has severe ptsd, he is a viet vet, depression comes with it as had to stop his work too. Its taken time to find his new life, hasnt been easy, and still has bad days, but this is his life now, and we only get one go at it. Nat explained it well. Sometimes we have to let go of things so we can discover others.

If I could give this thread a GOLD STAR I would. Great subject.

I struggle with this as well, Scotty. I'm still not really working.

I have taken up a volunteer gig.

But I have a lot of physical pain which holds me back from doing more. So it seems I'm either bored or I'm engulfed in pain.

The fragility thing you mentioned is probably related to the trauma. It really takes a long time for that to ease. You're in the second year post-TBI and it's still a tough time.

I had depression for about 2 years post-TBI. First, the depression caused by the TBI itself. Then, depression upon realization of what had happened to me. But year 3 it eased. Nothing magical happened. It's just probably partly acceptance and partly you get tired ou of not accepting it, if that makes sense.

My guess is that you feel the same thing I do - which is that you're mind isn't completely engaged in what you're doing or it's not stuff you really enjoy. I'm sure it would help to find something more fulfilling.

Hope you find that (and hope that for myself as well.)

That's exactly what I'm going through! I'm a nineteen year old girl who was previously working two jobs (70 some hour weeks usually) and when I got off I came home to my boyfriend and sometimes friends hanging out partying...now I'm not working, I'm back with my parents, my boyfriend is in jail, and I can't tolerate people so I just sit in my room most of the time. I feel down CONSTANTLY, I sleep most of the time...my parents now make me come out of my room at 8am and lock it until 5pm so I'm forced to do stuff to stay busy. I was pissed at first but now I'm realizing it helped A LOT.
I basically go to the gym twice a day and play with the kids my sister nannies or my dog. For the time being it's just a matter of distracting myself to keep sane, sometimes I have moments when I just want to crawl back in bed for days but then I get involved in everything going on and it erases that feeling. I figure when I go back to work and start college in the fall it'll be less of an issue, but I think the best way to deal with it is to preoccupy yourself with other stuff instead of just sitting there dwelling on it and allowing depression to build and take over.

yes, my husbands depression and lack of motivation are extremely difficult to deall with. He will never be able to go back to the job he had before. this has been so awful for the whole family. We try to keep him motivated, but he just has such a negative atittude most of the time.

Ozark girl, after reading your reply I just felt like saying how i had felt. maybe this helps maybe not but you can see what you think.
Can i say that people being eternally positive can be annoying. It used to drive me crazy. Things suck with a tbi and doing something which was totally normal before does not deserve a round of applause.
Yet saying well done from time to time can be appreciated.
I don't know what the right thing to do is but i can say that it used to drive me crazy and make me even more angry when people expected me to be happy about things which to me seemed silly.
Of course you have to try to treat him as normal and encrouagment is important but don't get over excited for anyone who has been sick and does something which they couldn't before.
For example in the early days after my accident whilst still in hospital I had to relearn how to walk. i had broken many bones including my pelvis. Walking was something i had done all my life. Although it was exciting for my family to see me trying to put one foot in front of the other to me i just felt rediculous. I knew I had had an accident and couldn't walk for a while but it hurt. I had to deal with alllot of pain and i found it demeaning to have to learn how to walk again.
Now I am further down the line and i am proud of everything i got through but at the time I just felt like screaming I am not a child I have walked all my life.
I don't know if this will work but give it a try and just talk to him as a normal person. Let him know you understand how frustrating things are. Don't try to encourage him to do everything and then get excited as if he is doing something for the first time. He doesn't have to be doing things all the time but just be normal and talk and you will find things that he wants to try. There is nothing wrong with saying well done. Just don't reat him like a dog jumping through hoops as that is how i felt like at times in the early days

Really good post Nat!

I hesitate to respond to this post because I have been back to work for about 4 1/2 years. I do not mean to offend anyone by what I have to say.

I went back to work approximately 5 weeks from my return home. Slowly at first the doctor was wise not giving me an hourly time I could be at work instead he stated as I could tolerated it. Push it...I did. I wanted my life back to normal.

It took about 3 weeks before I was back to 40 hours a week. I also had many other physical limitations and returned to work in a wheelchair.

It has been very difficult and by that I don't mean being able to do the work...that part was easy. Putting up with people, their remarks, their attitudes caused a great deal of stress and in honesty a great deal of upheaval to my own recovery.

You see, I was like many of you a "people person", active and my social life was filled daily. What I did, I did with ease and with lots of energy to spare.

Now, I still like people but not all their ups and downs. I lack motivation unless I'm told...you can't do that. Then...you bet I will just to prove them wrong!

However, I respond or react to their emotion...not my own. I now have zero tolerance for drama and yelling. Loud noises...rock my world and I struggle to control my own outbursts.

I feel every single day that I am existing...not living and until recently I lied to myself about that one!

I am not happy but I'm not angry or sad either. I'm flat-lined neutral.

I try very hard to be positive not for anyone else but for me I always have. It is not enough...

Like ScottyBabb...I too feel my life is too fragile and I don't know how to fix it...I almost wish it would crash so I'd know what I'm actually fighting.

I do what I'm supposed to do for people to think of me as normal but, my heart is not in it.

Work...is not the glue that held my life together. I've been doing it for years and...the same thing you all are describing is missing and wrong in my life as well.

I have been thinking about this post for a few days. I am only 4 months into my "brain disruption" (yes, that's the diagnosis. I'm still going with ABI), but I have been noticing a similar thing in myself.

At first, I thought it was because I was very intellectual, and could no longer do complex activities (according to my neuropsych report, I'm processing at average levels in certain functions, whereas before I was in superior. But that is better than many who are initially injured, and means I can still partake of activities on a certain level others cannot.)

Then, I thought perhaps it had more to do with how one defined themselves prior, no matter level of intellect or difficulty of activity. (Like, what a person perceived as meaningful or fun. Workaholics might suffer more than someone who didn't really care about working constantly, for example.)

And that maybe some people who retained aspects of "how they defined themselves" did better than others. (For example, a naturally disorganized person did not suffer the "identity/loss of self issue" as much as someone who was anal-retentive and relied upon to organize. Even though both would suffer from the difficulty of the activity now.)

Then I thought more, and I wondered if it was because some of us simply are barred from doing what we once wanted to do. But I can still do many things I wanted to do, just not at the level. This creates a sense of boredom and unfulfillment in me.

But I can still do things I want to do. The simpler, easier things. They relax me and can entertain me, except for the boredom aspect. But even when I am doing the easiest tasks, I still cannot shake the feeling of being "disconnected from the world."

Based on all these responses, it seems like it doesn't change with time, doesn't seem dependent on age, doesn't seem dependent on the severity of the injury, the functions impaired and the functions intact, and lifestyle or identity prior. I think loss of self plays a huge role in it, but it still seems more pervasive than that.

I have a hypothesis that others who suffer a disability that results in loss of identity or self may go through many of the similar issues we do, but I do not think they feel the disconnect we are describing unless it is psychological in origin. (It would be interesting to ask people with other life-altering disabilities.)

I honestly think it is biological. I think it is something about the way our brains are perceiving the world after being damaged. To me, I've had mental illness in my past and felt like I couldn't connect, and it was not in this way. I've felt like I've outgrown situations and that I could not connect with them anymore, and it was not in this way. I've been in confusing situations, felt unable to connect, but not in this way. Part of it could also be memory issues. As memories aren't encoded fully, we feel connected less and less, and understand less and less of being "in time." I have frontal lobe damage, so I also no longer grasp the concept of "consequence" or "future thinking," so I feel I cannot figure out how to move forward except day to day.

This feels like I am still living in reality. I know I'm alive. I know where I am, what I'm doing, what is happening. Things get accomplished, things get in, but I do not feel connected. I feel like I exist in the world, I live in the world, but the world cannot touch me, and I cannot touch the world, whereas before I was seamlessly integrated. I don't feel dissociated. I feel there, but not in the fabric of time. I was EXTREMELY sensitive before this. (A Highly Sensitive Individual.) To not feel connected to anything... the world, the events in it, the people I love, is devastating.

It feels like prior to brain damage, my body and mind felt like it was constantly "growing." After the brain damage, it does not feel like it is growing, or life is expanding, anymore. I feel like I am maintaining or backsliding. I think this is unnatural for people to feel as organisms, because you always need to feel you are growing. (The only time I can imagine this occurs in individuals naturally is during senility/natural aging. There comes a point where the world stops expanding, and begins to contract, as a biological result of the brain functions lessening.)

But this is what I believe it is. I keep telling my family, "I know my processes are lowered, but it feels like I'm also not thinking clearly/connected, and I'm not sure if this is because of a process of the injury, or just the result of 'feeling' the holes where normal functioning used to be." I still don't know. I keep expecting to feel connected again, just with lowered abilities. But perhaps the strangeness I constantly feel is the dissonance of the absence of the higher abilities.

I'm with SPORTY. I don't mean to be a downer, but I'm 28 years old. I can't even begin to imagine treading water like this for 40 more years, or if senility sets in earlier as a result of the injury. I'm at a critical junction in my life that decides the next 20 years. (Family, partner, marriage, career.) And it is all gone and will be delayed if ever acquired. Sometimes I think I could deal with the injury better if it occurred in middle age, when I had some future security established. Now I have none, and lowered ability to seek these things out.

For now, I am trying to sort things out. If things do not change or improve with the connectedness, years of this will eventually deaden me.