My husband has been visiting his mom for the week and just came home today. It hasn't been a good coupla days for me. I'm completely exhausted, and to be frank- it's good that he's been gone because I didn't have to 'pretend' to be me. Pretending to be 'ok' makes me even more tired.

I was clearly exhausted when he walked in the door. He asked, haven't you been sleeping OK? Yup, I said, I've been sleeping fine- I'm just exhausted.

He didn't get it, bless him. He doesn't understand that being exhausted for me has nothing to do with sleeping at night. Today was the third day this week that I've 'cheated' and taken a three hour nap during the work day. I'm trying NOT going to feel guilty about it because I did make it up later- but still the idea that I have to sleep while being paid to work bugs the heck outta me.

I love him dearly, but he just doesn't understand the absolute exhaustion.
I'm not sure that anyone but someone in my shoes (you guys) can understand this. So frustrating and, to be honest, embarrassing. I feel like people just don't understand and it makes me worry about stupid things like people's perception of me.

I realize that I need to get over this particular issue. I've always been worried about what people think of me. It needs to stop.

Purpose of this post? I don't know. I'm just venting, I guess. It's just nice to have this little place where I know that people will understand.

Thank you for sharing yourselves. It has made a huge difference to me. I need someplace where I can just be "me". Thank you for that.

Totally agree - I feel like I have pushed past that to the dizzy stage so will have alot to say when I can think better - GO RELAX! Lynlee

Hi...
I do not have Post Concussion Syndrom or a Traumatic Brain injury, but I have other neuro conditions and multiple neuro meds (and non neuro meds) that leave me with lots of fatigue and needing sleep often and sometimes not feeling up to doing things....

I understand what you are going through with your spouse-- so I can really empathize. My husband is gone anywhere from 1 week to 9 months at time, and on a very frequent basis. Up until recently just like with your spouse, he just didn't seem to really "get it" per say. I'd done most med changes on my own, dealt with countless seizures, pain issues, and then the regular life stuff, along with not only taking care of my stuff, but taking care of his responsibilties too, when he was gone. So, so often he did not really see what I went through on a regular basis, how things effected me, when, where and all that jazz. It did not mean he didn't care-- he cares very much and does the best he can with things, and our love is really strong; however, what I have come to realize is that he simply didn't understand. He wasnt home long enough to go through those things; and when he was home, he took over his responsibilties, so naturally things were different. And that was OK with me. As long as he just accepted what was happening and understood I was doing the best I could and life was still happening (ei paying bills, going to school./work, etc) inspite of all going on, we were OK.

It has only been very recently that he has started to truly "get it". I am not even sure what changed or happend to spark it and the change. Perhaps it is the fact that we have decided to start the process of preparing and trying to have a baby. Perhaps it was when he started asking me about various meds. Perhaps it was when he saw me go through a med change, go into status seizures, etc ect. But, it is happening-- slowely.

Understanding is an ongoing process. I guess there really is no specific point to this post-- but I wanted you to know I can empathize with you. Don't give up-- keep pushing on , and hopefully in time, he will come to understand better....

L 2 L

To Lori, Yes I understand how you feel, and many of us here feel the same way.

Having to pretend that your someone your not is frustating and an insult to ones personal integrity.

I think this is one of the blocks in the healing process as we have to pretend to be someone we are not in order to function in our society and community.

It's hard to let go and be the person you truly are in the stage of the illness, because people do not understand nor do they accept the personality changes that accrue when your mind is not functioning correctly. A defiant blow to ones ego and confidence.

It is basely a spite personality. The person we were before the trauma and the person we become after the trauma.

I think finding a safe place to talk about these change in personality issue is part of the healing process.

I also think that creating these post of what one is experiencing, the personality change issues with TBI/PCS will have a positive effect for those who are new to this type of injury.

Almost everyone here who posts on a regurlar bases is dealing with the same issue. I have to pretend to be something I am not in order to be accepted in our sociality., so we are living a lie and the lie creates a negative effect on our personality.

The connection / bond is I think like that / I feel like that / and I do the same type of things. Think,feel and behavior. Once these common behaviors are identified then we can start working to find a solution to these problem.

Acceptance is one of the keys and a very important one in the recoverer process. I have to accept the fact that I am disabled and can no longer do the things I did before a I was injured.

I have to accept the fact that I will be set up for failure in the work force.
I have to accept the fact that I can no longer pick up 150 lbs and put it in the back of my truck. I don't like it but I accept it.

I have the opportunity to create a new brain.
I have the opportunity to create and re build my brain
I have the opportunity to shair what happened to me because of the trauma and my healing process, overcoming the trauma will help someone else go though the healing process faster.

The information coming out of this forum will help other recover from the symptoms of TBI/PCS and the emotional issues related to this dis-ease.
The disease here is not being at ease.

I love being on the cutting edge, and this is a world of the unknown.

I know from my own experience in life that if I truly want something good for myself I must help someone else achieve that same good.

In this case the good is re creating a healthy functional brain, and in doing so a healthy quality of life.

How can I help others recover from this dis-ease?

By honestly sharing my experience so that other don't have to be afraid of sharing whats going on inside them.

In my opinion the medical profession does not what to deal with TBI
PCS because it is in a realm of the unknown.

Something to think about.

Jeffn

Holy smokes, what a wonderful reply. Right on!

I truly believe that I have the acceptance piece conquered. I have accepted that this may not get better (but still believe that it might get better).

As in your post- what I truly need to work on is not caring about perceptions. Perhaps it's a self-esteem problem, who knows, but I've always gone over and above (caring for others, work for my employer, being cheerful, etc.) because it made me feel like I was valuable.

At this moment in time, I can't do those things and I feel like I'm going to lose everything that I have.

I need to understand that my value is not what I'm able to do for other people. I need to truly believe that my value is inherent simply because I am a human being placed on this planet.

I can still love and care about people- I just can 'do' as much right now as I've done before. I can honestly say that if one of my friends or loved ones were in my position, I'd want to smack them for even THINKING they need to pretend around me.

I need to grant myself that same permission.

I slept for 13 hours last night. My goal today is to not feel guilty about that.

By the way, my husband is the sweetest, kindest man I've ever met (lucky me!), so I hope that my writing that he doesn't understand doesn't reflect poorly on him. I'm pretty sure y'all understand that someone can be sweet and loving and still not get it.

By the way, do you know that Risible means loves to laugh? Actually, according to websters, it's "able or inclined to laugh". So we have a lot in common! I may not seem very risible these days, but laughing and being happy is my true nature.

Thank you for your thoughtful reply. I'm so glad to hear that your husband is finally understanding what you're living with. That gives me hope and encouragement. I've known him for just over five years (he's my second marriage) and he's known the PTSD side of me that whole time. Prior to head bonking, the PTSD wouldn't rear its ugly head very often, but when it did- he didn't get that either, even though I explained where it all came from.

I told him in a very loving way, that I think it's great that he doesn't understand, because the very reason he doesn't 'get it' is because he had such a wonderfully happy childhood. I'm truly happy for him for that, so I'm OK that he doesn't get it.

That's why these forums are so important. It's not important that everyone in my life understands. It's only important that someone does. So thank you for your encouraging response.

A baby, huh? How AWESOME!