not so much a question as reaching out.

    • Anonymous
      October 27, 2012 at 3:35 am

      reaching out….been on this page for awhile, post often, GBS survivor 6 years! i usualy do well to keep my spirits up and my thoughts positive, but today im struggling. im not one to throw pitty party’s in my honor as i know there are people in harder situations and with a lot less support then me. i understand there are people suffering from cancer and other horrible diseases, and from a much younger age. people who wernt given the opportunity to live the amazing carefree life i did for the first 17 years. im not blind to the other human suffering in the world, due to natural disaster, i dont make light of any one elces circumstances but i cant help but feel like this sucks ! that its not fair and i didnt/dont deserve this!… i feel entitled to the right, to be 24 and have fun, not be exhausted, live life limitless! i cant stand the idea that that was all taken away from me in one foul swop and i wasn’t even given a pleading chance to stop it! altho my life was LUCKILY not cut short and altho im beyond grateful for that i cant help but feel frustrated, tormented, and utterly gutted i wont life the life i dream of…..

      im not 100% sure what im expecting to find with this post, i just felt the need to think outloud…. and you’all are the people i feel can listen without judgment ….. thanks!

    • Anonymous
      November 1, 2012 at 12:31 pm

      Synthia, You are so young to be stricken with this.  It is tough.  I am just adjusting finding out I have it.  I have a mantra.  It isn’t what happens to you that is important, it’s how you react to it.  At this point, my reaction is one of the few things I have control over.  And I am used to having a lot more control!!   This seems to me like a huge test!  It does suck.  You, no one, deserves it.  Just know that you aren’t alone in this and do everything you can to fight it. I can’t offer much advice as I am so new to it all.  But, remember you aren’t alone.  I actually had a conversation with a relative’s psychologist on another matter.   When I mentioned to her  what I am going through, she suggested I make an appointment.  I told her I would think about it.  It won’t help my CIDP, but it could help me cope.  If I get to that point, I just might call her.   There is no shame, only strength, in asking for help.  Ev

    • Anonymous
      November 3, 2012 at 4:40 pm

      my thoughts are with you…i am 7 months into this and am beginning to realize this  might be chronic…leg feet and hands..have been thinking about your letter for hrs. and wanted to respond.  but don’t have answers…support groups like this and face to face support groups probably help.  being so young my heart goes out to you…keep typing..

    • May 8, 2013 at 11:42 pm

      Hi…I am 12 years post GBS and I have finally accepted the fact that my life will never be the same again! I now have a NEW normal! Yes, it is VERY frustrating to get fatigued so easily but I’m also still alive to be able to complain about it!! Each day is a new adventure and I know when I can go, go, go and when I have to stay home and rest. It is not always fun but each day alive is better than the alternative, right?! Just listen to your body and know your parameters. You won’t be climbing any mountains or even be able to spend an entire day at DisneyWorld without getting tired but you can live a full life within the confines of what your body will allow. If you harbor on the negative aspects of what GBS has done versus trying to achieve what you CAN do, life will not be very much fun. I always look for the pluses in life. Sometimes it is very hard but there is always something…always! Take care!

    • Anonymous
      May 28, 2013 at 4:56 am

      I think any of us who didn’t have a full recovery feel this way occanisionly

    • Anonymous
      June 26, 2013 at 5:02 pm

      I am 18 years post GBS and it sounds strange, but I am glad I got it. It made me open up my eyes and get my priorities straight. I also used to sing, but never had the guts to do it in front of anyone, and was very disappointed that I had no voice for 1 year. After I got my voice back, I worked on it and ended up singing in a band! I would have never done that had it not been for GBS. It sounds weird, but I really am glad I got it. I am now the Liaison for the KC area and have met a lot of great people. I am glad I can visit patients in the hospital and give them hope. I was totally paralyzed and was on a vent for 2 weeks. I am not back 100%, but I thank God everyday that I am here at all. It really helped me to get on a antidepressent for a few years after, maybe that would help you.

      Hope this helped,