five years now

    • Anonymous
      May 8, 2010 at 10:45 pm

      It has been five years now since I went into the hospital with GBS. I have not improved in four years and now no longer measure my progress nor worry about what steps toward improvement I make or don’t make. I take one day at a time and enjoy it as much as I can. I think I am looking less to the past and future, and more on the now as it unfolds. This past year I began a struggle with another disease and am pleased I have not had a flare since February. This is the longest stretch yet and I am slowly tapering the prednisone. I also was able to get off narcotics and have found other ways to deal with the chronic neuropathy and leg pain which have less disturbing side-effects. I find I am a lot less sleepy, though my fatigue is no better. The most discouraging things is that my legs still get tired very quickly and I must continue to use a wheelchair. But it is spring again, I am feeling fairly well and it is a joy to sit out in the garden once more. I remember staggering into the doctor’s office where he almost immediately gave the correct diagnosis and told me, “You will have a lousy summer but you will be alright.” I had a lousy summer alright and it took me a long time to discover what being alright really meant, but I made it. I hope everyone has a wonderful spring. Jeff

    • Anonymous
      May 9, 2010 at 12:52 am

      Jeff –
      When I first discovered GBS I was so happy to read (and hear) that this was a syndrom that I would recover from. The docs said to give it a year, the pamphlets promised complete recovery for almost everyone and the internet made it clear that only a small percentage did not recover. A little more research found this web site and others that said things like have patience, rest frequently and don’t hurry recovery. Everyone heals at his/her own pace and some of us not as completley as others. I have found it hard to change the mind of my 84 year old mother who says things like “Only 9 more months until you’re fine”, or “You only have 7 months to go until you’re good as new.” I try to remind her it is the rare case that heals 100% that first year, with no residuals. I am grateful for this forum for the more realistic outlook. I am glad to hear the non-pamphlet stories, and would love to revise that pamphlet. GBS hits each of us differently, and leaves each of us changed – and at different levels. The one constant is we are all changed irreversabily. Those of us on this forum care about each other and search for new ideas or helps in living with this “gift.” I learned “One day at a time” years ago in Alanon, when I was learning how to survive life with someone caught in a different hell. GBS gives us the opportunity to learn how to live life differently. My prayers go to you to continue to persevere, to keep finding ways to live through another day, and to look forward to the next. Summer in Colorado is beautiful, do enjoy it!

    • Anonymous
      May 9, 2010 at 12:01 pm

      Most of your post could be said for myself. After 2 and 1/2 years and being told I would walk again, I can walk in small areas if I hold on to things. I can even walk with a cane if someone is on the opposite side to hold on to but had to give that up because of balance issues so I’m in the wheel chair most of the time. I rarely sleep during the day now and try to plan what I do with rest periods in between because the fatigue kicks in through out the day.
      Recently received good reports on other on going health issues, so with that good news and what recovery from GBS I have made I have a lot to be thankful for.
      Spring is here, I open the windows and back door where I spend time during the day watching squirrels, rabbits, birds, neighbor working in his garden and the flowers blooming.
      Life is good and I take what comes day by day.
      Keep looking forward.

    • Anonymous
      May 9, 2010 at 9:13 pm

      Hi Jeff,
      [QUOTE]This is the longest stretch yet and I am slowly tapering the prednisone.[/QUOTE] I am just curious, but you mentioned GBS only and not CIDP. Why are you taking prednisone?

      Best regards.


    • Anonymous
      May 10, 2010 at 10:13 am


      The weather does do wonders, doesn’t it? I suffered through the worst of my symptoms in the dead of winter and it was really awful. I love being outdoors and I really think that sun does wonders for depression and mood. I have felt better the last few months and I really think it is because I am outside more with my kids and getting fresh air. Glad to hear that you haven’t had a relapse since February. You are always supporting people on this Forum, so hope things take a positive turn for you!

    • Anonymous
      June 1, 2010 at 11:08 pm

      hey jeff, i know you’ve herd it all before, so i wont be all sappy and say, stay strong, be positive, smile at the good and ignore the bad, and rest when ur tired.

      its been 4 years for me and i still have 0 sensation….. i cant feel hot cold sharp or dull anywhere except my face…. i understand ur pain and fatigue, i too use a wheelchair because of balance and lack of endurance…. everything has been a slow and steady progress that sometimes we forget how far wev’e come…. and begin to take for granted what we are able to enjoy again…

      i hope u are able to sit outside and enjoy the weather… i personally love the summer but cant handle the heat… flower have sprung birds are chirping and the sun is shining

      keep ur chin up !

    • June 3, 2010 at 7:35 am

      Hi Jeff,
      I am sending my prayers and best wishes to you. Hopefully GBS and your other disease will improve in time. We just don’t know what will happen or how long recovery takes. I’m glad you’re enjoying the springtime, because that is so good for your soul.
      Keep a little hope in your heart.

    • Anonymous
      June 3, 2010 at 8:16 pm

      Thanks all for your kind words and encouragement. I do keep hope in my heart through the good and bad days and consider myself fortunate in a lot of ways-I can work part-time for one and still make enough to live on. Next year I get medicare and after that social security so things will get easier financially. I also thank God I haven’t been back in the hospital since March and hope to make it through the summer with no relapses with Pericarditis. I am also happy to be off my pain meds and still able to keep the pain under control. So a lot of good has happened this past few months-including the birth of twin grandchildren! Life goes on and can be very good. Thanks again, Jeff