That must have taken a lot to accept such a dramatic change to your lifestyle. My arithmetic has suffered too so I can appreciate how frustrating and confusing it can be.

Catherine it sounds like you have been on a difficult journey for a number of reasons. I totally understand how “once bitten, twice shy” makes you cautious of others intentions. And you are right to protect yourself. I just hope that you do get to meet some of the worlds genuine people who really do want to help others and will show you the love and respect that you deserve. All the best for the future x

DESPITE their painful malarkey I had all the support needed. His shoulder took a lot of responsibility but never the full brunt of what it was like being given the cold shoulder because you said something inappropriate or did something unpleasant.

We started “the arachnoid cyst foundation” in 2003 trying to help people proactively. I would answer a few emails and calls then tons of emails and calls. I didn’t or couldn’t have much more capacity for understanding complex social situations. My CSF was so high I couldn’t think out of a paper bag and had a PM Dr Jack me up so high on meds so he could do the unthinkable.

I have had my TBI since birth. Was ALWAYS different than the other kids and couldn’t “get it.” I always excelled in school and my mother would keep telling me tge people more hateful would suffer far worse in life and im just waiting for kharma to be a b****. I love kharma in action.

When we found my plum sized arachnoid cyst in 1989 there wasn’t ANY info. I slapped my mom on the back laughing saying, “I TOLD YOU SOMETHING WAS WRONG!!!” as she looked at me with the most horrified reaction I’ve ever seen. It took her 9 neurosurgeons before she found one to do the surgery because as an artist she could read negatives and see it poking out my nose. So she found one to do the surgery the way she wanted.

In 1992 I started looking through medical texts trying to understand what they meant. Now I can look at a MRI and read it. .

I’m sorry this is all over the place but the one thing I’ve learnt in all these YEARS as an advocate for myself, as well as millions of others through various forms of caring, is A. You don’t have friends. You have people you walk with and sometimes carry, but they will never care for you as your same sex parent, or your chillin’, B. People use you C. Trust nobody because that’s letting people in to hurt you. Trust your close family but friends aren’t your friends and won’t see you through everything.

Concentrate on yourself. Quit giving away your power to people that don’t care for you. I’m sorry I’ve come to believe these things at 45 but I do. People will always look for an “in” to hurt you and use TBI as an excuse. F them.

I have issues with brain healthy people. They want to label you all kinds of diseases without looking at the core cause. They just can’t accept fundamental truths of TBI and that is healing from this is a lifelong process, you will ALWAYS be flustered in complex social situations and forget everything unless you keep your lists. People don’t MEAN to be MEAN they just have no framework for working in a professional capacity with you because you are above their paygrade. Don’t let that discourage you but teach you a lesson that you belong in an atrium of your own. Don’t give people an in.

I loved your article.

Goddess bless!!!

Megan I’m sorry you were in such a horrible accident. But it’s good for hear you are getting support for your recovery. I know having so many appointments can be daunting and inconvenient. But it’s going to help you in the long run.
I wish you all the best for your recovery.

Reeds you sound so much like me! 90% of my shopping I do online and food shopping I sometimes do, but only when James is with me. Or he goes on his own.

I think it’s actually quite common symptom but others struggle to understand what is going on for us.

Yes!!!!!!