Comming to terms??

    • Anonymous
      July 1, 2008 at 7:54 pm

      I was wondering how do you come to terms of your status in the disease (Your not going to improve beyond a certain point)? I am angry and frustrated and afraid….Is this normal? How did any of you come to terms of dealing with it daily? I am sooo tired…sick of the pain…tired of wide range of emotions…not knowing how I am going to feel from one moment to the next.

    • Anonymous
      July 1, 2008 at 8:35 pm

      Kinney you sound like someone I know. angery, upset, scared, alone, and guess what you will be hearing from many just like you. I do have to correct one thing you said. You will heal.and now I have to pop your bubble (lol) It will be slow.go ahead let it out. but it will get better. My 2nd night in the hospital at about 3 AM I looked out my window crying and said God I am yours I can no longer fight and do with me as you please. I went to sleep and when I woke up I was at peace with myself. That day I made up my mind I was going to fight this GBS. and 4 months later I was out of a wheel chair, and done with my walker and cane and was walking. (I had a mild case and great doctor)
      Kinny love your care givers as they are scared more than you are in most cases. say to yourself I WILL GET BETTER. each morning look for improvement and each night turn yourself over and give thanks. You are at this site because someone bigger than you and I brought you here. I will stay in touch and have added you to my prayers. and remember you will get better slowley each day. You are going to meet some wonderful people here. we are a family. (Steve)

    • Anonymous
      July 1, 2008 at 8:42 pm

      You are 100% normal. The anger, frustration, fear, coping can best be shared on this forum where others understand. Me-I just take it a day at a time, sometimes an hour, and I have hope for a better tomorrow and hope for a cure. Stay informed, keep learning and asking questions about your disease and find out what works best for you. Take good care of you!! And rest when you are tired-it helps you cope better. You have a brand new family to talk to, and always remember that we are here and so is God. Peace to us all. Emma

    • Anonymous
      July 1, 2008 at 8:43 pm

      It was hard for me to come to terms with having GBS. I cried a lot and was frustrated and afraid also. The second hospital I was in had 2 on staff phycologist that visited patients (I was on a trauma unit where all the patients had life changing illnesses or injuries). I was put on medication that helped me deal with those range of emotions and I’m still on it.
      Even with medication I have still broken down and felt sorry for myself, I wanted my old self back.
      That has only happened a couple of times and after a good cry I settled down and feel guilty because there is always someone in worse shape than I am.
      As for not improving beyond a certain point, I haven’t given that much thought because I hope to improve more as time goes on.
      Maybe you should talk to a professional about your feelings, they may want to give you medication and see if it helps you.
      I feel for you with all the emotion you are going through and hope it gets easier for you.
      Take care

    • Anonymous
      July 1, 2008 at 10:26 pm

      Hey Kinney: Try to stay focused on the positive! I know its tough, and am still going through it, proibably forever.. I think a lot of doors have closed to me, but I am starting to see a lot of different ones opening too… I think all of us are going through good and bad spells, and I think getting through this will make you a better person, and hopefully the family and your friends will see that in you… Read my posts gbs/cidp related and it’ll give you a feel for what i’ve been through.. Yet this isn’t nothing compared to others.. You are only given as much as you can take… I hope it gets better for you, take care of yourself and try not to worry too much.(easier said..)deanop

    • Anonymous
      July 1, 2008 at 11:27 pm

      Hi Kinney: As others have said there is always hope for improvement. That said, I have made no improvement for 2 1/2 years-since my first six months when I improved rapidly. I am 62 and the docs still think there is hope I will improve but not much. After much discussion my wife and I agreed that while there is always hope I had to live with what I have now. I have a great pain doc and I have manaaged to get the pain under control and we have adjusted our house arrangment so I walk less. I have accepted that I am in a wheelchair. The most important thing I learned was to recognize my limits and not go beyond them. If I do the pain and fatigue only get worse. If later I can expand those limits I will but I don’t push it. I have also found the great things those limits give me the chance to do, like read and meditate more. I now love my quiet life but still miss my old work and challenges. As others have wisely said, if you need to talk to someone get a professional. I think depression is as much a residual as fatigue or pain and should be treated with the same attention. You mention being in pain-are you on the right medication and the right dosage; do you have a doc you can work with? Do all you can to limit the pain and fatigue because they suck the joy out of life. Good luck and know they are a lot of us dealing every day with what you are. Jeff

    • Anonymous
      July 2, 2008 at 1:40 am

      Its easy for me to say as i made a full recovery, but there was definitely a point where i remember thinking, if this is it, if this is as good as it gets well i can live with it. I can picture that moment as clear as anything – i was walking up the hall of the hospital with a full support walker and i felt so independant! I remember laughing to myself and thinking if you had told me before GBS that i would have to use a walker i would have been devastated and here i was thinking all my dreams had come true.
      If there is a positive to GBS it is that you come out the other side a stronger person.
      Dont get me wrong, i had my days where, if i could, i would have gladly gone to sleep and never woke up. For me the worst part was not being able to see the light at the end of the tunnel. I knew i would not be paralysed forever but not knowing how long it would take was excruciating (i am not a patient person at the best of times)
      But as you can see from all of us here, there IS a light at the end of the tunnel and if you can just hang in there, there WILL be a day when you can look back and know the worst is behind you.

    • July 2, 2008 at 10:05 am

      Coming to terms with this is different than accepting it.

      At least for me.

      I have come to terms with my limitations, the twitches, tingles, aches, and whatever that GBS has given to me to deal with. BUT, I have not yet accepted that this is all there is for the rest of my life. I have not accepted that I won’t heal anymore and feel better. Even in the past month things have improved to the point that my mini down day made me realize that I have become “spoiled” by the good days.

      I have tried very hard to remain positive thru this all, to incorporate healthy things in my life, try different things to see how it affects the inflammation, etc. Meditate, lie in a quite place and tell yourself over and over that you will get better dont let a single solitary negative vibe in. Visualize yourself healing, doing the things you want to do. Take care of yourself and give your mind and body good things to work with. Meaning thoughts, and healthy food, encouragement, and forgiveness. This may all go far in relieving your stresses and help your body heal faster. A long soak in a tub filled with warm water and epsom salts has become my luxury. I like to turn out the main light, using only a candle for a tiny bit of light, letting myself submerged so that just my face is above the water, and lie there totally still and quiet and listen to the water sounds and my own heartbeat. Float and let your mind float too. Feel your body healing. This is something that works for me, that helps me refocus and relax. It may sound corny, but I strongly believe in the power of positive thinking. I know it is tough to stay positive while GBS dances on your soul and your nerves and is a part of your every thought. You can help yourself heal and you dont have to accept any of this right now because this isn’t your life sentence. You are still new to this and still recovering, give your body what it needs to do that.

      Sorry if I sound granola crunchy….

    • Anonymous
      July 2, 2008 at 10:29 am

      Wow! You are all so totally awesome. If I were in Kinney’s shoes, I’d be hugging you all:)

      It is 25 years since I had GBS but it feels like yesterday. I remember the days of wanting to give up and losing hope, but I am like so many of you. I remember begging my husband to pull the plug on the respirator because I just couldn’t take anymore. He yelled at me in his quiet way “Fight damn it. Don’t you dare give up on me ad the kids!” And fight I did. I too believe in a higher being and also in the power of positive thinking. I had four small children at home and did not have time to be sick so I willed myself well through prayer and positive thinking.

      I was told I would be in the hospital for a year, but walked out with a cane after four months. I spent the next year at home getting well and healing day by day. I too have made a remarkable recovery considering how badly I had this. I was told I was one of the worst cases the neurologist had seen. I have down days even now when I want to do something that I can’t. I give myself license to have a pity party and then I move on. As fairly odd mother said, it isn’t about acepting but rather coming to terms with. For the most part, I decided that what ever I was left with would be the new me, and that I would embrace and love her. I use what I have learned to make life better for myself and for others as I use my experiences to teach others how to treat people in care. As someone here said, when one door closes, another one opens. I never imagined that I would be doing the job I have but I am and it is totally awsome.

      After 25 years, I have some issues with pain, tingling, etc. Looking back, I think these things were always there just not as bad as now. I am dealing and am not going to let it slow me down. What I mean by that is that I am going to do the things I want to do, rest when I need to and enjoy all the good things the good Lord has thrown my way. I believe he gives us these challenges because we can handle them. We need to learn how to use them to the best advantage.

      We are all here because we need support in some way, shape or form. It is in helping others through the tough times that I am able to successfully manage my own bad times. Hang in there and keep us posted. Blessings…:)