Hi, my name is superstar79! I have a TBI along with other chronic conditions

superstar79
superstar79 Community Member Posts: 8 Listener
edited July 2022 in Start here and say hello
Hello! I am a newbie here and am not too sure if I will find the advice and support that I need. 
However, if I don’t ask then I will never know! 
It would be nice to find people who really understand what my life is like now that I am permanently disabled. I have a TBI along with other chronic conditions.
The TBI is extremely challenging! 


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  • Tori_Scope
    Tori_Scope Scope Posts: 12,466 Scope
    Welcome to the community @superstar79 :) How are you doing today? I hope you're coping okay in the heat!

    Thank you for introducing yourself, and for telling us a bit about your situation. 

    I'm sure I've seen other members with TBIs post here before, so hopefully they'll come across your post :) We certainly have a lot of members who live with chronic conditions, and have had to change how they live their lives.

    Would you like to tell us a little more about the challenges you face, and what life is like for you now? 
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  • superstar79
    superstar79 Community Member Posts: 8 Listener
    My life is about controlling pain 24/7. 
    I have poor memory problems, poor concentration. My arms and legs shake which cause me to drop things or unable to pick things up. 
    My balance is extremely poor and I am constantly banging into things or tripping over.
     I have no sense of taste or smell which happened initially after my TBI and lasted a few years. Then it returned to almost normal. A few years later it went again. 
    I have constant Tinnitus in both ears but more so my left.
     I had to learn to walk and talk again and do not remember the first two years after it happened. 
    I forgot words and often people who I known for years. 
    I have constant headaches and stabbing pains. Nerve pain in my face. 
    My entire medical care was severely poor and I was misdiagnosed twice with the bleeding and swelling on my brain missed. 
    The third time I collapsed at home I was rushed back in and they found the damage. 
    Only in the last couple of years they have diagnosed the nerve pain, and now they have said that I have parts of my brain that have damage that shows dead cells. 
    My GP has been the one to push for every bit of medical treatment throughout the years. 
    It’s been a constant battle, but I am still alive and grateful for every day that I wake up! 



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