Susan, I have read and reread your post about five times already. Just doing so makes me feel so much less alone and that there is someone who truly understands what this is like and how hard it can be to overcome the doubt and the fear. Thank you so much for taking the time to respond.
I am inspired beyond belief by your struggle and the incredible work you have done to understand your mind, body and TMS. I am grateful that you mentioned the food aspect because it is an extremely difficult one for me to negotiate as I try to treat TMS in a larger medical culture that creates a huge fear base 'threat' around foods considered 'dangerous' to IC. One of my earliest TMS syndromes which I thought was the worst, until the IC, was anorexia nervosa as a ten year old and which kept me hospitalized (and safe in a weird way when I was in there) for several years. By the time I was a young adult I had developed if not a healthy, at least a functional, relationship with food. Until now! At 46 years old, when I find myself re-visiting this nightmare with food fear which I had long since thought had been put to bed. It's no joke but still the absurdity of it all is almost funny! I would love to hear how you were able to 'ignore' all the messages that if you eat certain things you will cause a 'flare'. I would love to hear anything about your IC and other TMS experiences that you may feel open to sharing. I drank a coffee this morning and you would think I was bracing myself for an atomic bomb to hit my home at any moment from the sheer terror and guilt I feel over it! You would think I had killed a man by the way I'm figuratively am looking over my shoulder every two seconds for the cops to come arrest me! This is tough work no doubt about it and I doubt I am alone in saying I have much jealousy of those who experience book cures :) ! My email is email@example.com if you ever would like to reach out privately , Bless you and I hope you have a day in which you treat yourself patiently and kindly, Lauren