[Superstition]

to people who actually understand. Well, I hope at least one person here gets me.

I fell down a flight of stairs and hit my head 7 months ago. I have PCS. I had posted here a couple times but decided to just deal with things on my own. I wasn't wanting to believe that I'd never get back my whole self. I'm at a low point at this moment.

My family has been so supportive and great. I have made lots of great strides and have been improving so I think maybe they see me as more normal than I am. I'm trying to be positive and sunny all the time but I've been having lots of problems with my memory and processing. I feel like I've consistently shared this with them and have laughed at myself when I can't remember something.

I'm finding that my husband and son have started this thing, though, where they play this semantics game with me and attack me on every little detail when they know, full well, what I'm talking about.

When people talk to me, I hear the first part of what they say and while I'm processing that, I miss the rest of what they say. I have a hard time remembering new names and dates, etc also.

I'm feeling really hurt and ridiculed right now. I tried to just express myself while they argued and talked over me about how I was wrong in all the details and then my son got up and left.

I feel like everybody is going to get sick of this shell of a person that I am. I can't work. I'm still not driving. My whole life is whatever happens in my house. I'm afraid that I've become boring and a nuisance. More trouble than I'm worth.

I'm tired of people telling me that I look "good" or "fine". As though because I look normal, I shouldn't be having any issues in my brain. I'm tired of having exactly zero people in my life that truly understand what it's like to be like this or know how lonely and frustrating and sad this is for me. It's almost like grieving your own death.

I don't know why this little exchange crushed me like it did. I know I need to suck it up and move on but I'm struggling. I don't like feeling so vulnerable.

I'm hoping that by just typing my feelings, it'll help me move on. Thanks for listening.

[MomWriterStudent]

I don't have any advice. All I can say is that I understand where you're coming from and hope that things start to improve for you.

[St George 2013]

I have severe small fiber neuropathy and understand some of what you are going through.

The drugs make me foggy brained and I can't find the exact words I am looking for sometimes. My family tends to finish my sentences for me.

The problem I had with my husband was that last year when I was jumping from dr to dr trying to find out what was wrong with me (dx was due to diabetes and then 6 rounds of chemo) and he actually thought I was 'faking' my pain. We have been married for 34 years and he of all people should have known better. When I finally got a skin biopsy done and he read the results he finally understood what I was going through.

I also get 'well you look fine' which drives me crazy ! They don't see me on the days I'm in bed because I can't walk due to the pain.

Maybe you could print some information out on your condition that explains what you are going through and ask them to read it. Might help and might not...just a suggestion.

I've just been dealing with this a little over year and this has ruined the life I had. I had to file for SSDI after working all my life and I'm only 52. I can't cook, clean, grocery shop or drive. The house is a mess. My daughter buys my groceries for us and cooks for us every night.

I hope things start getting better for you and please keep us posted. Sometimes it's good to come on here and just let it all out.

Take care.

Debi from Georgia

[Superstition]

Thank you both for your responses! You have no idea how much it helps me just to know that somebody understands.

Now, to figure out how to approach my family about this. I'm not so good at putting my thoughts into words.

[Superstition]

Debi, I also meant to say that I'm so sorry for all that you've gone through. It sounds like a lot to deal with. I'm glad your family has come around and you have some support.

[Living_Dazed]

I feel like everybody is going to get sick of this shell of a person that I am. I can't work. I'm still not driving. My whole life is whatever happens in my house. I'm afraid that I've become boring and a nuisance. More trouble than I'm worth.

Superstition,

I know this frustration. I used to work full time and be very active in other things. I was the glue in the family. Now I feel I have little to offer. I feel boring. These are big worries for me. I don't know if it's my new friend paranoia (hate that guy) or if it's a normal stage to go through.

Your family needs to educate themselves. Dad should set an example for your son. But you should write down some clear statements and express your seriousness about what u feel.

I've come here during my darkest moments. These amazing brain injured people make me feel okay to be me. They have understood my jibberish when I'm overdone and probably shouldn't be typing, been my companions on lonely days, responded to my rants, helped me cope, strategize, and celebrate.

You are in the right place here for however you are feeling.

Peace and wellness,

Jace

[Mokey]

So sorry for your difficult times. It really is awful, isn't it?
Focus on one hour at a time....and hopefully you will see progress soon.

We understand. Take care.

[Superstition]

Originally Posted by Living_Dazed

I feel like everybody is going to get sick of this shell of a person that I am. I can't work. I'm still not driving. My whole life is whatever happens in my house. I'm afraid that I've become boring and a nuisance. More trouble than I'm worth.

Superstition,

I know this frustration. I used to work full time and be very active in other things. I was the glue in the family. Now I feel I have little to offer. I feel boring. These are big worries for me. I don't know if it's my new friend paranoia (hate that guy) or if it's a normal stage to go through.

Your family needs to educate themselves. Dad should set an example for your son. But you should write down some clear statements and express your seriousness about what u feel.

I've come here during my darkest moments. These amazing brain injured people make me feel okay to be me. They have understood my jibberish when I'm overdone and probably shouldn't be typing, been my companions on lonely days, responded to my rants, helped me cope, strategize, and celebrate.

You are in the right place here for however you are feeling.

Peace and wellness,

Jace

Thank you so very much. You're making me cry because it's been so long since I've felt like I'm like other people. That probably doesn't make sense but it means so much to me to know that there is someone else out there that understands firsthand. Your post actually brought me a lot of peace.

Originally Posted by Mokey

So sorry for your difficult times. It really is awful, isn't it?
Focus on one hour at a time....and hopefully you will see progress soon.

We understand. Take care.

Thank you. It really is awful. I've tried to really convince myself that this isn't as bad as it seems. I haven't allowed myself to feel how truly horrible this is. I've been pushing away all negative thoughts and only allowing myself to be positive but I'm tired today. It really hit me tonight that as much as I've refused to accept it, this could be the new me FOREVER. It's a hard pill to swallow.

I had my little breakdown here and then my husband came in and is trying to make amends. I think he sees now that he wasn't as funny as he thought he was.

I really appreciate that I was able to vent someplace where people are supportive and understanding.

[SarahSmile0205]

Originally Posted by Living_Dazed

I've come here during my darkest moments. These amazing brain injured people make me feel okay to be me. They have understood my jibberish when I'm overdone and probably shouldn't be typing, been my companions on lonely days, responded to my rants, helped me cope, strategize, and celebrate.

You are in the right place here for however you are feeling.

Ditto!!!

I truly would think I was going crazy if it was not for the people here!!

I understand your frustration! Last night I got a text from a very good family friend who is 67 and immune compromised... since my accident he has been diagnosed and is now cancer free... CANCER... CANCER is cured on an imuno compromised 67 year old man before my head heals... REALLY!!! (that was my low blow of the week)

[music-in-me]

Hi Superstition,

As you can tell from the number of people who thanked you for your initial post, many of us can understand what you have been feeling. Even my very understanding husband can be found on the short end of acceptance, especially when he is stressed out by other household duties, which I can do little to assist him with now.

Some days, people are more than willing to "cut me slack", especially if I'm having more word-finding problems, or just having trouble processing conversations. But on my "good days", I get the "Oh, you sound so good. You must be all better now" statements. It is frustrating to want to say your just having a better day right now, but just wait until I get fatigued or start having my daily troubles while we are still talking.

Just seems to me I'll end up sounding like I am a complainer, or I've given up trying to get better if I don't respond positively. So I smile and thank them, but I save us both further explanations about a good moment vs. ongoing difficulties. I know they mean well.

A woman from my Neuro rehab group had this perspective: What if were your friend instead of you who got hurt. Without the proper education in brain injury, we probably would be saying or doing similar things in our ignorance just to try to make them less different than us or themselves before their injury.

I know this helped me realize that those who haven't had our type of injury can't possibly know what is like to walk in our shoes. And we owe it to ourselves to give ourselves a break from trying to restore our former roles and abilities sometimes; maybe a lot of times.

I can relate to the feeling of being " more trouble than I'm worth." Just said it today. But in truth, if you ask your family if this is what you are, they'd probably more than reassure you that your worth everything to them.I know mine tells me this. Not necessarily aloud, but with every kind thing they do for me daily.

Take care, M-i-m