April 17, 2007 at 9:00 am

Dear Birdie,
It really depresses me to say how many friends have strayed since my fatigue with GBS is so promanant. I have to work all day so I am pretty much had by the end of it. I am having a good day if I can stay on my feet til 7pm. Since most of my friends plans seem to exist until later in the evening, I find I have to bow out. Hence, they have bowed out from asking, calling ,or even asking me to do things on my days off when I possibly could. There are a few left, but like you, most of them find my fatigue all in my head and I should be fully recovered after seven years. This hurts me so badly. Why can’t people believe us? In fact, I was less fatigued at about year 4 and now it seems even worst. I don’t know if any of you have experienced this. It scares me. The pain and burning are always haunting me as I try to keep a smile on my face. If they could only walk in my shoes. Being as I am taking care of my dying mother,(they are giving her about 3 more weeks) and my hospital will probably close down, hasn’t helped. In fact, I don’t know what could help at this time. I’ve exhausted every med option, I only hope and pray for some kind of miracle to make me stronger. I know I am whining and I’m sorry. I just STILL want my old self back , and to this day, can’t seem to come to terms with this thing called GBS. I don’t think we should tell people we had GBS. I think we should tell people we HAVE GBS, because the residuals will always be a part of our lives. Thanks for letting me air. xoxoxoxoxoxoxoxo Roxie