Help Questions – 1 Yr GBS Anniv next week

    • Anonymous
      July 3, 2008 at 1:52 pm

      Thanks so much for your encouraging responses. The weekend was definitely a challenge for me. I kept reminding myself over and over that this is not the same as last year, that I’m not getting GBS again just because the weekend is similar to last year. It was very tough…. thank goodness for the anti-anxiety meds I had that kept me from actually having a panic attack. I feel a little concerned about the entire month of July because it was such a nightmare month -My birthday is the 23rd of July and I was in the hospital at that time. I remember having the painful nerve testing that day. Oh what fun that was. I’m just going to keep going one day at a time and hopefully the fact that every day that goes by is proof that I am okay should help ease the anxiety.

      I really am about 98% recovered from the physical aspects of GBS…. but the psychological and emotional results are so challenging for me. Especially when I have a couple of weeks or a month of almost no symptoms – and then I wake up with some nerve sensations – that’s when I feel panicky.

      I feel a little guilty complaining at this point because so many others were so much more ill than I was. I had a milder form of GBS… I didn’t have to go on a ventilator because GBS didn’t affect my diaphragm or lungs…but neuropathy – tingling, numbness and extreme weakness from the neck down was what I had to deal with. I couldn’t walk without a walker for about 3 1/2 months…then went to a cane, and so on. I couldn’t use my hands/arms for a few months and that gradually came back also.

      Thanks again for your encouragement and support. Other people just do not understand why I am having issues at this point. Not even my doctor – (regular IM Doc).

      Blessings to you all

      Hi friends!

      in a few days, it will be one year since I contracted GBS. It’s weird, but I’m having a tremendous deal of anxiety about this. So much so that I had to get some medication from my Dr to calm it down. I’ve had some thoughts about it here and there over the past few days – but yesterday it hit me… like out of the blue. I had a few nerve sensations in my legs and arms after not having any for about a month. That seemed to just trigger the anxiety/panic. Now I keep thinking constantly about what happened, how sick I was… how hard it was to get diagnosed and the long recovery.

      We are leaving today to go out of town for the fourth. We will be visiting my in laws out of state. The interesting thing is, this is exactly what we did last 4th and the day we came home (sunday) was the day I began getting sick. I feel like its dejavu or something.

      Anyone else have this experience around the anniversary date of their illness??

      Also looking for a little encouragement/support. I really hate feeling this way.,

      Thanks in advance


    • Anonymous
      July 3, 2008 at 4:38 pm

      I believe the date we got GBS will stay with each one of us as will each anniversary date after that.
      Go enjoy yourself with your family and inlaws this weekend.
      Try not to dwell on the past, as someone on here says (don’t look back).
      Have a happy 4th of July

    • Anonymous
      July 3, 2008 at 7:22 pm

      I work a lot with young people with cancer and it is really common to have a tough time on the anniversary of diagnosis (and for them also on the their birthday or sometimes Christmas–times also which are really memorable and in which you tend to think about how life has changed in the last year). It is not so much the day and the representation of changes in life and, for us, often “trauma” about the initial times that has not been sorted through–such as how scarey it is to have your nervous system shutting down, to need to be on a ventilator, to not know the future any more, and having one’s previous position in the world so altered so abruptly. In some ways the anniversary reaction is likely a way to process it through to help mentally heal, because last year all you were trying to do was survive.

      I have three suggestions. First when you begin to feel overwhelmed about the last year, say to yourself what good things have happened. You probably never knew you were as strong as you are. You probably did not realize as many people care as do. etc. Think about the progress that has been made and that you are no longer so acutely ill. Share with your family about the love and support.

      Second, do things specifically that are different than last year. If you went to visit in-laws last year also, either go another weekend or make a different schedule or do different activities–whatever it is that reminds you so much of the “trauma” of last year. Go to the movies if you did not last year. Go to different restaurants. Sleep in a different room. Whatever helps. This is so you will not be overwhelmed feeling.

      Third, give yourself permission to grieve. It has been a tough year and your life is not like it was before and probably will not exactly ever be again. This does not mean that life will not be good, just that it forever will be different. That was a pretty dramatic shift in life that happens–like people feel after Katrina or after the flooding.

      WithHope for cure of these diseases so that they are not as traumatic.

    • Anonymous
      July 3, 2008 at 10:07 pm


      I certainly believe that it is normal to have anxiety on the anniversary of the date you were diagnosed………I know I did for my daughter but instead decided to make it a celebration. To realize where she was 1 year prior and to know how far she had come…………I could do nothing but celebrate, celebrate her life. One month today we will once again celebrate another year anniversary…9 years since her first go around with GBS and yes we have cake and ice cream (actually banana splits) as the first meal she had after coming off of the vent, the feeding tube and everything was the biggest banana split I had ever seen. I wouldn’t wish GBS on my worst enemy but I am ever so grateful and thankful everyday that for Brandy GBS made her stronger, more determined and taught her how to achieve goals she set for herself.
      Have a great 4th!

    • Anonymous
      July 4, 2008 at 3:00 am

      I just want to share with you that I am still recovering from GBS also. Even though now I have been back to work for almost a year now working 8+ hrs days. Diagnosed in sept. 06. I must say I would not have gotten this far without GOD & my wife & children in my life. I thank GOD for every step he allows me to take, and my wife for encouraging to keep at it when I have those frustrating days and feel like giving up. No one knows what WE are going through unless they actually live with you.
      Well I use to be so afraid of the steps in the early stages when I was able to start walking again, I am now able to go up & down without the use of the handrails when I am feeling BOLD. I still suffer from a slight lower back pain, and numbness in the feet ( nothing that ALEVE don’t care care off). I am walking better despite a slight limp due to the hips still weak per my PT. I haven’t had a fall now in months. When I trip over things I can catch myself now. Where as my last fall, I was able to break my fall with my hands, but boy did my back hurt for a few days. I didn’t believe I would get better when my NEURO & PT’s told me I would. It just takes time. I am able now to walk greater distances now like grocery shopping, malls etc.
      without feeling as fatigued anymore.
      It might seem far fetched but I was exactly where you are now during the early stages. I was in ICU for a week, bedridden for a couple mos, wheel chaired a couple of more mos. One day I tried to stand up & I did, it was at that time I knew that there was no turning back. I was then ready for the walker which introduced me the to the cane finally given that up. THAT WHOLE PROCESS TOOK ME ABOUT 8 MOS. I just couldn’t believe that things would get back to normal. I am living proof that it does get back to normal. GBS affected my equilibrium & my left knee tends to be tight at times. However, a friend loan me their TENS UNIT and what a difference that makes for me especially for my lower back. I would now say that I am probably at about 78%. I am able to run in place, trying to work on moving forward when I run now.

    • Anonymous
      July 4, 2008 at 10:14 am

      Hi Debbie,

      I just want to say that I agree with everything everyone else has said here. withHope gave you some excellent advice. This week is the 25th anniversary for me of getting GBS. I think about that time and occasionally experience anxiety as well even though it is 25 years later. I sent 2 months in ICU and another 2 months in a rehab facility. I went home much sooner than I should have but I had four small kids at home, one a baby, so really hated being in hospital 2 hours away from them.

      I do exactly what WithHope suggested. I celebrate! I am so thankful to be alive. I had a new normal after GBS and to tell you the truth, at this point, unless I think about it really hard, I don’t remember what it was like for me before GBS. What I experienced over the years has become who I am today and I am so thankful for the gifts I have. I, too, had anxiety in the first couple or three years. Everytime I was tired or weak, I would panic. I was fortunate to have a friend who was a doctor and I would phone him up and “whine” with fear. He would give me a pep talk and I would feel so much better. You have us. Come to the forum and we’ll give you that pep talk.

      People have asked me why I come here after all these years and my response is that GBS has affected me for life and I want to have people in my life who understand the residuals, the anxieties, etc. I didn’t have a lot of that for the last several years and as I age the residuals are surfacing. They were always there but are now hitting a bit harder. I find comfort here, knowing that I am not going crazy and that there are many people who are going through this with me. I also feel that I haave something to offer. I want people to know that there is life after GBS. You just have to create a life that works for you. I did. And I love my life.

      take care and enjoy your holiday weekend. Let go, let God…

    • Anonymous
      July 6, 2008 at 2:50 am

      It will be my 2 year anniversary on the 20th of this month. I think we all have our date burned into our brains. I know i have been thinking about it for a few weeks now but it will probably come and go fairly insignificantly, just like my 1 year anniversary last year. It is normal to mark a milestone in your life, whether it is a positive or a negative one. Try not to dwell on it though, like everyone else has said, celebrate how far you have come.
      Hope you had a relaxing and uneventful weekend!

    • Anonymous
      July 7, 2008 at 2:36 pm

      Updated my original post…. thanks!