I just want to wake up

    • Anonymous
      October 9, 2009 at 8:07 pm

      …and not think of anything involving GBS. My neck hurts today, could this be a relapse? My legs feel a bit weaker today going up the stairs than they did yesterday, am I having a relapse? The list goes on and on….

      My father found this site while I was hospitalized Jan ’08. I had a real real tough time of it, Lungs collapsed, had a trach, on a respirator, bells palsy, in and out of ICU and a long recovery road. I started walking on my own a year ago. My feet are still numb and my hands tingle now and then. I still get ivig twice a month.

      I just cant talk about GBS, think about, its such a dark spot in my life. I begged them to let me die in that hospital. I had 2 boys, at the time they were 6 months and 2. Now they are 2 and 4. I want to be here for my kids forever.
      This swine flu thing weighs heavily on my mind. I know i cant take the vaccine, but is GBS hereditary? I dont want to give my boys the vaccine b/c of this. However, will I get GBS again (a 3rd time, BTW) if I get the swine flu.
      I’m sure a therapist would have a field day with me. I am on antideppresants and doing good on them, I just want a day to go by where I dont think about it.

      I posted on here while I was recovering and havent been back here for a while b/c in my head, coming to this site, reminds me too much of my trauma. I want to help patients in the hospital with GBS, I want to tell them it will be OK eventually. I wouldnt even know who to contact to do this.

      My mom is badgering me to go to another neurologist. I already went to one at Columbia in NY and he didnt tell me anything I didnt know. I feel that I have researched this so much, I lived through it, that no doctor can tell me something I dont already know. There doesnt seem to be many studies done on this, what exactly causes it, why some people relapse, etc.

      Thank for “listening” to me ramble

    • Anonymous
      October 9, 2009 at 11:21 pm

      Hi, and here’s my hug (((((((( )))))))).
      Thank God you have survived all of that! I used to fall asleep at night and wonder if I’d wake up in the morning too when the GBS was at its worst. I would be afraid to fall asleep, because I didn’t want to die yet. I knew I was sicker than at any other time in my life, so I didn’t know if I was strong enough to stay alive through it. But I kept telling myself, I’m going to live through this day, I’m going to live through this night, I don’t want to die, God, and unless You have decided that I will die now, I’m going to fight to live, each terrible hour of pain, each agonizing day of crippling. I’d often wake up in the morning surprised to still be alive.

      What is the use of worrying? You are doing all you can to deal with this condition; you are surviving, you are living; your children are growing and you are there with them. We who have this condition learn that we can take nothing for granted, and that the course of this illness and damage is at times unpredictable. The severity of the symptoms is so gruelling and exhausting; but our inner spirit is learning to cope, learning to struggle on, learning how to survive and live in spite of all of the perils of our illness.
      Take care of yourself, my friend. Don’t worry; concentrate on the little things and the big things you have to be thankful for, the things you can enjoy and build on. Take good care of yourself.
      God bless you and yours!

    • October 10, 2009 at 1:04 pm

      Carolyn, yea life is tough after going through this all but we survived and we are strong, your boy´s do not get GBS this is only we self that are in this we dont send it over to our kids.
      What life is today is good, every day is good, we know what we lost and what we have gained again. We are not perfict but we are here. We need to rest more we worried if we get GBS again, what if we get swinflue, or vaccine, well that is all what we deal when it comes and if it comes. we need “to take one day at the time”. That is very importand becouse other wise we drive our self and our family insaine.