Just having an overwhelming need to vent...
 

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.

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.

Dear 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. :)

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.

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

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 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.
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.

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)

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

Debi
 

I responded on your thread about SFN . If you get a chance check out. I had for a short time used Lyrica and Cymbalta with nasty side effects. I know you had mentioned being on these meds. The Cymbalta caused me the "foggy brain" you mentioned. I needed to get off asap. That might be adding to some of yours issues as well.

I think the hardest thing for most of us to deal with is feeling guilt about complaining or the inability to clean, cook, etc., as well as we once did. Also others thinking we are faking really hurts; especially family.


Gerry

This is a great place
 

Hi there

I found this forum early on in my injury and have hung out here because it's such a good place. I got no info on food, vitamins or supplements from my neuro, but luckily I found that and people who would GET IT here.

One thing you might try with your family is this. There is a good series on YouTube called YOU LOOK GREAT inside a mTbi. It takes about an hour to watch. If they would watch it with you ith could shed some light.

All brain injured people need some space and slack.

Wishing you a good day

poetrymom

Oh wow. That was a very low blow. This head stuff STINKS. And, I agree on thinking I'm going crazy. I really wonder that sometimes and coming here a couple days ago made me feel not so alone in the world. It's comforting to know that there are others that get it.
This is true also. My husband has told me over and over that this has been such a good lesson for the whole family to see just how important I've been to them and they were taking all I do for granted. I still find myself wondering how long it will be before this just gets to be too much for everyone. It's definitely something I need to work on though---the problem is really with my thoughts and not with them.
Thank you for reminding me about that series. I watched it when I was first injured but forgot about it and never had them watch it. I think I'll try that.

I also have been diagnosed with small fiber neuropathy. I am 77 years old and was in perfect health until 10 days after a high dose flu vaccine for persons 65 and over was given to me by my Dr on September 14 2012. I burn constantly all over my body. I have been all over including the Mayo Clinic and Cleveland clinic. I have tried all the natural suggestions as well as prescribed meds. Nothing seems to work. I even tried pain management. "I think the hardest thing for most of us to deal with is feeling guilt about complaining or the inability to clean, cook, etc., as well as we once did." I feel so horrible that we sold our beautiful home and moved to an independent living facility.

I have been told aside from this horrible condition I am a perfectly healthy petit women. This will not cause death. I guess as my neurologist at the Cleveland Clinic said" this is the new me". Adapt. At this moment I am on the last thing I am trying Lyrica with our any effect at all. I am taking 50mg twice a day. I am sure they will want to up it but I think I will elect to go off it and just try and learn to live with this horror that I feel strongly was brought no by the vaccine

Hey Posada :)
 

Posada.....Adapt....easy to say but very hard to do. But I guess we are all finding our 'new normal' as they say.

I am so sorry you are going through this and had to sell your home :(

My journey with SFN is only a little over a year old and I see no end in sight. I have not tried anything except what the neuro prescribed but have decided to go on B-12 first and see if it helps any. I'm on gabapentin and a small dose of Cymbalta for the SFN....I take vicodin every three hours to try and keep the pain level to where I can try and deal with it.

Oh the joys we all share. Take care and keep us posted on how you're doing :)

Debi from Georgia

I find I have a hard time expressing what symptoms Im experiencing and how noise and light are affecting me. But i found the book "Brainlash" by Gail Denton really made a light go on in my head. I photocopied the checklist chapter of the book for my boyfriend and my mom and checked all of my symptoms so that they would have a better understanding. Its been helping because i can refer to it if I'm having a hard time explaining myself, which happens a lot.

I try not to take the things my friends and family say personally, I think they just don't realize what we are going through. So i think the checklist helps them understand a bit more.

Venting
 

Oh, I get that, 100%. My family does not understand yet (married 24 years) and I've been told to suck it up from time to time. I can't begin to explain how difficult work is with those issues. Memory and concentration issues as you describe them is the bane of my existence. YOU DON'T HAVE TO SUCK IT UP, you can adapt to your new reality. I'm finding that a smart phone can be very a helpful tool for remembering things and I'm trying other tactics as well, and the more I work at it, the more I notice little improvements. You can too.

Your brain can and will adapt if you give it the chance.

Jamie

This...totally my feeling today. I don't want to hijack anyone's thread I just am frustrated today. This post helped so much but especially the above quoted line. This is my first formal experience with a TBI and I am confused as a symptom, let alone what the heck I should be doing. Everyone keeps looking to me on what the next step should be and they keep asking me questions (when will you be better? should you see a neurologist? can't you do some kind of therapy?, etc. etc. etc.) I know they just care about me and want me to get better but it's like sheesh people, you are the healthy ones, can you read up or call a doc for once, instead of interrogating me! It is so frustrating and this post helped.

Thank you for that book rec. I'm having an impossible time with reading now but it might be good just for that checklist!
This would be highly frustrating! I find myself really avoiding talking to anyone other than my immediate family. It's really just too much work to think about it all, let alone talk about it. My mom was grilling me the other day about when I'll be returning to work. She's not understanding how far out of the realm of possibility that is.