1 year anniversary

    • June 23, 2006 at 8:18 pm

      I year ago today I was in the icu on ivig. I’ve come along way, but this damn fatigue only lets me work about half a day. Last week had me really scared, thought i was relapsing, but seem to be pulling thru. I have to admitt, I’m pretty down in the dumps. My wife just retired today, and you always think about the “Golden Years” but it seems quite tarnished at least for me. I hate to think about holding her down and ruining the rest of her life because of what has happened to me. Any way best wishes and prayers to all .


    • Anonymous
      June 23, 2006 at 8:49 pm

      Dear Bill:

      Congratulations on your one-year anniversary. You are not done healing so you really can’t be sure what a full recovery will look like.

      I went to a fatigue management seminar for MS patients that was run by my HMO. It didn’t make the fatigue any better, but it certainly put me in control of it. I highly recommend it if you have the opportunity. Fatigue may always be a part of your life, but it doesn’t have to be a millstone around your neck.

      Bill, please take real good care of yourself. One year of recovery is something to celebrate, and to reflect on where you were and how far you have come.


    • Anonymous
      June 23, 2006 at 10:44 pm

      Dear Bill, Sending thoughts of continued healing your way. There are so many up’s and down’s with these diseases, it’s hard not to get “down in the dumps” sometime. There is so much support from everyone here. I too was worried about holding my spouse back. My husband is in excellent health, thank God, and set to retire in about a year. Whenever I discuss my fears with him, he comforts me and says whatever life throws at us we will be together until the man upstairs clocks out our time cards. I’m sure you have a wonderful wife who is a great support to you also…I hope you continue to heal and remember, we’re all here for you!

    • Anonymous
      June 23, 2006 at 11:31 pm

      [QUOTE=vls]Dear Bill ,Sending thoughts of continued healing your way. There are so many up’s and down’s with these diseases, it’s hard not to get “down in the dumps” sometime. , we’re all here for you![/QUOTE]


      Ain’t it good to be Alive and be in Tennessee
      Charlie Daniels said that.
      Hell Yeah.
      I said that.

    • Anonymous
      June 24, 2006 at 2:00 am

      Hi Bill,

      I’m sure all us males in those years, setting up for retirement, feel the same kind of thoughts. I know I did. Your wife is not your caregiver now I would assume, so that alone puts you way ahead of the recovery game. If fatigue is only the real battle , then as you learn energy management better, that too will disapate and it’s all up to time now. I’m seven years out , and as I reflect on my recovery, there were times when the only thing holding recovery up was the mind set. Know one knows that but me. At the time it seemed like I was trying and working hard. The PT’s and OT’s said I was, but looking back , I know the spots where it was just a mental wall that I had to let down, and let my subconcious except and process it. Like why couldn’t I pick up that pop can last week, and now I can without noticable phisical changes in strength 4 days later. When I realized that I was alone when I picked it up, the only thing I could figure was I wanted it more, and the subconcious just jumped in and preformed the task. With thoughts such as you describe, along with that comes frustration and mental anxiety. That will phisically add to exhustion. Which translates into more fatigue in our cases. You can’t control the future, so I emptied as much as I could as far as emotional baggage in that area, and my phisical side improved. I took it as a challenge, instead of a burden. There’s no reason to hold life up, it just might be a bit slower for awhile. I flew to Las Vegas 4 years ago in a wheelchair still having to be fed by my wife, but she wanted to get the heck out of town, the stars aligned, so we went. Had a great time. I’ve always advocated to not let GBS take away any more then it has to. A year is nothing in this biz, and I know by next year, you will be singing a different tune and looking back, then you will see what I was talking about. Believe in yourself, and make life and retirement as it comes what you both want. I’ll be darned if I’ll let GBS dictate my life. Just be sure you really know, or try to find out, what really is holding things down, or ruining things. That’s where I started and had to recognize, then I could deal with it, and manage it better. Then I took my life back. These are bridges a lot of us have to cross in our recoveries on the mental part of healing. We all have bad days and get frustrated being reminded of a disability every minute of the day, but that passes too. As Oprah would say “Discover a new normal”. That’s what I did and it fits right in society un-noticed. Take care.

    • June 25, 2006 at 8:05 am

      Good advice from all. Thank you.


1 Year Anniversary

    • Anonymous
      May 12, 2006 at 10:39 pm

      Hello everyone!!

      i haven’t been on here for sometime now. i’ve been so busy trying to get back to the ‘norm’. i’m happy, so happy, to say things are fantastic exactly 1 year after succumbing to GBS. i was as bad as you can be without actually dying from it. in the past year i have found full time work, and ran the half marathon i’ve always dreamed of doing. that was the most amazing thing, you just have no idea. if anybody would like to chat with me about the miraculous recovery that can exist, please contact me. It’s amazingy the recovery that can and WILL happen!!:D 😀 😀

    • Anonymous
      May 13, 2006 at 12:05 am

      Dear MaidenManitoba:

      I am very happy for you. The progress you made in one year is astounding. I wish you would do something special for yourself to commemorate the anniversary.

      Take care of yourself,


    • Anonymous
      May 13, 2006 at 6:17 am

      Also if you could give us an example of your exercise routine that helped build up your strenght.

      I am at my 6th month and can not see that kind of recovery but would be interested in how you have strenghtened your muscles and built up your stamina during that time before the marathon.