Hi @loismay, I experienced a TBI over 3 years ago. I experienced extreme exhaustion, sleeping 20 hrs a day for the first several months. I lost my ability to connect my thoughts in a coherent way, let alone get the actual words from my brain and out of my mouth! In addition, I suffered with severe balance issues, memory loss, extreme sensitivity to light, visual disturbances, double vision, inability to read or retain information, nausea, headaches and more. I found it beyond exceptionally difficult to find care in NM. It was well over a year before I could get a neurology appointment! UNM neuro-opthomology was very helpful, it took 9 months to get an appointment there. InVision in ABQ was excellent!! When I saw Michelle Cohen, I FINALLY found a provider who completely understood my post-concussive symptoms, condition and how to address them. I cried, I was so relieved to find a healthcare provider who didn't dismiss me. She had a fountain of resources to share and I cannot say enough about her and her staff of providers. I lived in Santa Fe and a family member had to drive me to my appointments in ABQ as I couldn't handle driving more than a short distance for well over two years. I also had a fantastic cognitive rehab therapist at St. Vincents in SF. Additionally, I did vestibular therapy with Sarah Cohen in SF.
It has been three and a half years and I'm still not fully back to myself. My healthcare providers helped me understand that 1) I am not crazy, 2) I am not alone in this, 3) My brain is a very fragile egg, it could take 10 years to 'unscramble' it, 4) that I need to be compassionate with myself because the people around me do not fully understand what I am going through. I was too exhausted to explain to my loved ones what was going on, I had difficulty getting my words out, I frequently became confused or emotionally overwhelmed and I felt horrible all of the time.
The good news is that I can speak fluently now, my visual symptoms have subsided remarkably (I still do exercises and wear specialized glasses), I function in social situations, and my life has returned largely to 'normal' - it's just not my pre-normal. There are many small things that are still with me- I'm still sensitive to blinking lights but my light-related issues are fading, my cognition is not as good but it continues to improve, my balance is not what it was but I can take a walk now without bumping into walls or going sideways, I can read for pleasure now!
All I can say to anyone is to hang in there! The brain is incredibly elastic and takes a long time to heal. My life was very dark- for a long time. However, three and a half years later it is continuing to improve. Slooooowly but surely I am getting back to myself and you will too - it may be a new 'normal' but don't discount how much time it may take.
I am so grateful to have found this group. More evidence that I'm not alone in my recovery!