new to the forum- normalcy questions

    • Anonymous
      June 8, 2006 at 8:33 pm

      Hi there,
      I am just got released from the hospital after six months of being there, and am having some “adjustment” issues. I had full blown GBS, ventilator, trach tube, full paralysis, etc. I can now walk with a walker limited distances, limited use of hands. I have a lot of fears/questions on what is “normal” for someone in my position. I have fears of certain foods (that I ate right before coming down with GBS), afraid of water on my face, smothering fears, and constant nightmares. Have others of you out there experienced any of these as well? If so, how did/do you cope with it? I would appreciate any feedback and advise, and look forward to meeting some of you online.
      Thanks,
      Brad

    • Anonymous
      June 8, 2006 at 8:56 pm

      Brad,

      Wow you sure have been through alot, anyone would come out of that experience with some major anxiety. Did they give you any kind of anti-depressant or something similar when you left the hospital?? I suffered from Post-Traumatic Stress when I was released and was given a/d, sleeping pills and also a social worker to help me deal with it all.

      I am glad that you found us, we are all here to help you however we can. If there is ever anything I can do, feel free to email me [EMAIL=”jerimyschilz@hotmail.com”]jerimyschilz@hotmail.com[/EMAIL]. Get lots of rest and take care.

      Jerimy

      PS-You can add me to yahoo messenger also if I can ever be of help.

      [quote=Bulline]Hi there,
      I am just got released from the hospital after six months of being there, and am having some “adjustment” issues. I had full blown GBS, ventilator, trach tube, full paralysis, etc. I can now walk with a walker limited distances, limited use of hands. I have a lot of fears/questions on what is “normal” for someone in my position. I have fears of certain foods (that I ate right before coming down with GBS), afraid of water on my face, smothering fears, and constant nightmares. Have others of you out there experienced any of these as well? If so, how did/do you cope with it? I would appreciate any feedback and advise, and look forward to meeting some of you online.
      Thanks,
      Brad[/quote]

    • Anonymous
      June 8, 2006 at 8:56 pm

      Brad,

      Welcome home from the hospital! I’m so glad you found this forum! You were in the hosital a lot longer than Ben, my fiance, but I would have to imagine that you’d be going through a very rough adjustment period right now. Of course, everything you described sounds very normal for anyone who’s experienced a serious illness, especially for someone who’s been dependent on a trained medical staff for six months. It’s scary coming home, for both the patient and the caregiver. Just give yourself some time and come back to this forum often. We do have members here who were in the hospital for long lengths of time like you, so they’ll be able to offer more insight once they come around.

      Take care and get well soon!

      Shannon

    • Anonymous
      June 8, 2006 at 9:14 pm

      Hi Brad
      Sorry to hear about your story, but it really sounds like the worst is behind you! I wanted to recommend a book called Thought & Feelings – Taking Control of Your Moods and Your Life (Authors: McKay, Davis and Fanning).
      It has a lot of really practical information about fear and anxiety and how they affect you. It has excellent coping strategies that are simple to use.
      Your mental health can become a slave to your fears – I should know.
      You need to break the cycle or it becomes a vicious circle. They probably have the book on Amazon, I think that’s where I got it. I keep it by my bedside and anytime I find myself spiralling, I read the book. It has helped me countless times. I’m not related to the authors, or trying to sell anyone anything, I am just recommending this as a really awesome tool for anyone who suffers from anything from anxiety or just too much worry.
      Good luck to you Brad! Onwards and upwards.

    • Anonymous
      June 8, 2006 at 11:14 pm

      Dear Brad:

      It must have been very difficult to be a corrections officer, and to watch people being incarcerated on a daily basis, and then have GBS confine you in a way which is much harsher than the people you oversee.

      Nightmares are really common after GBS. In a way, they are a type of coping mechanism to help your mind cope with being trapped inside your own body during the course of GBS. If the nightmares aren’t too bad, you could take solace in knowing that they will lessen with time. You will eventually have to deal with the fear and helplessness you went through with GBS either consciously or sub-consiously. It is your choice on whether you want to deal with it on your own terms or not. If you need a little help dealing with all of this, you may wish to find a psychologist or counselor who has experience in dealing with Post Traumatic Stress Disorder.

      Brad, please take care of yourself. We will keep you in our prayers.

      Lee

    • Anonymous
      June 11, 2006 at 7:43 pm

      yo brad,
      i b the village idiot. That wat u got, got me too. I been crazy everysince.*looks around nervously* hang around, post some. u got time ain’t ya? I always wanted to go to that country California. But i aint got around to it yet. Tell us some about youself!. u may have heard of me. i have become famous since i joined this formum. With me, it all began with this post.

      [url]http://www.gbs-cidp.org/forums/showthread.php?t=294&highlight=bass+guitar[/url]

      Aint it good to be alive and be in Tennessee.
      Charlie Daniels said that.
      Hell yeah.
      I said that.

      God Bless

    • Anonymous
      June 12, 2006 at 11:07 pm

      Brad,

      My heart goes out to you. You have been through a lot and coming home is a scarey experience. Over time it will be easier. Do you have a good family network around you? It helps to share you feeling with your loved ones. If this is not possible share them with us. We will be here for you if you need to talk.

      Regards,
      Debbie

    • Anonymous
      June 13, 2006 at 11:34 pm

      Brad, It sounds like you’ve been put through the ringer…. It’s not uncommon to experience the things you are going through right now. Make sure to find a good councilor with experience in PTSD. The main thing is keep talking to all of us. We’ve all been there and are willing to help . It does get better with time and patience. Easier said than done ; Huh? 23 years Post GBS and I still go through it . It does get easier and it lessens with time. Any time you need to talk my info is on the members list…… Love and Prayers

    • Anonymous
      June 15, 2006 at 4:30 pm

      Brad, Hi I’m a recovering GBS person I had it full blown and I’m still working at getting better. I was in the hospital for 75 days and released with in house therapy and now I get therapy 3-times a week on a out patience bases. You will get better you just have to keep a positive attitude. Think positive thoughts it will work I know its been working for me. 🙂
      Prayer to you Ron

    • Anonymous
      June 18, 2006 at 9:13 pm

      Hi Brad,
      I was in the same situation (trach, complete paralysis, stomach tube, etc) as you, but I was released from the ICU and the rehab in 3 months. I was also scared to come home, scared to be a burden on my family. When I came home I was unable to bathe by myself, used a walker or wheelchair, couldn’t pull my hair into a pony tail, getting dressed took forever, etc. Things got better and I am now about 95% of my former self (almost a year since the onset). The nightmares were bad but they decreased dramatically after I went off all of the meds (I don’t know if others saw a correlation). Be strong!

    • Anonymous
      June 19, 2006 at 12:13 am

      Hi Brad,

      Welcome to the forum. I am 18 months past my onset of GBS. I too had full blown GBS but was fortunately not ventilated. I spent over 3 months in the hospital and could use a walker when I got home. It will all take time. It is scary coming home. We here say GBS stands for “Getting Better Slowly”. I have to keep reminding myself how far I have come. I can drive, walk, handle a part-time job, etc. I still do not have total feeling in my feet and I suffer from fatigue. I do pray I will come back 100% but have learned to accept that I am not paralyzed anymore. I never had nightmares. I do take a low dose anti-depressant because my doctor says it is for my nerves not just for depression which I’m not. I also take Neurotin to deal with the constant tingling in my feet. Remember how far you have come and take one day at a time.

      Blessings
      Caroline (Michigan)