Dear Erin,

I've read this entire thread twice just to make sure I understand your circumstances. I have great empathy and sympathy for your physical symptoms and I'm fully aware they affect every aspect of one's life. I don't believe the "physical" game is what's hitting you the hardest. It is the game going one between your ears which is the major challenge.

Ironically, the game between the ears is the only game we have total control. What I am about to share may not be what one "wants" to hear, but what one "should" hear. Take it for what it's worth, should it be of any value or benefit to you. I present it without malice or ulterior motive. And you may feel free to tell me to simply go sc**w myself.

Many times when feeling bad physically we become highly frustrated with the fact others don't seem to care. Everybody has their own filter for what occurs in their surroundings. Our challenge is to learn not to give them permission to mess with our heads and not take ownership of their shortcomings. This allows them to take control of our lives and we are the only ones who may allow or deny that power.

The best example of my point is how you took the "power" of messing with your mind away from the individual using the power chair. That is what I'm talking about but applying it to all areas of your life. Regarding the dinner, who gives a dink whether they had seafood or not? Nothing but allowing them to distract your thoughts prevented you from simply fixing your own dinner or even leaving to go out for something. Waiting for someone else to "understand and respond" to what we believe they should, are misguided expectations of others.

I have been in your situation 100% and it took me some time to realize I was no longer going to allow these people to affect me in this manner. (Doctors and neuros especially.) I got very angry and began to be my own best advocate. The response of other people was nothing less than amazing. The power and strength I granted myself actually had a positive effect on my symptoms and their severity. As the movie said, "I'm mad as h*ll and I'm not going to take it anymore!" So I did something about it and took my power back.

I ask that you only think about this as it may or may not apply to your situation. Use what you can, discard the rest but do what is in your best interest. Do not give permission allowing other people to define you. Take that darn power control and don't let anybody move that chair but you. I know you are strong and none of this is a big surprise to you.

I will make it a point, should I ever come to visit, to politely ask which chair shall I sit?

Thank you for reading this. I hope it is of some help.

Your friend,