[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

[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)

[ger715]

Originally Posted by 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

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

[Posada]

Originally Posted by ger715

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

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

[St George 2013]

Originally Posted by Posada

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

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