Serious time. Suicide, how many times have you thought about it?

    • Anonymous
      September 11, 2006 at 6:24 am

      A few weeks, months, or years ago you were a “normal” person able to get around and enjoy life and all it has to offer. A walk down a trail or through a nice neighborhood or on the beach w/ your S/O or pooch was something you almost felt like you had to do. Now it’s something you only wish you could do.

      Taking a shower has gone from a daily thing to an ordeal. You’re staring at your feet to make sure they are still underneath you rather than enjoying some hot water spraying you down. Relaxation comes when you’re out of the shower, sitting down on the hopper while you try and convince your foot that it really does want to go down the leg of your pants.

      How many times have you just gotten tried of all the crap and wanted it all to end. most importantly, what kept you from taking that next step and ending it all.

      I don’t mean for this to be a depressing thread, but I have to believe that I’m not the only one who’s wanted to give up sometimes.

    • Anonymous
      September 11, 2006 at 7:55 am

      It isn’t that bad, Jever.
      Suicide is antiChrist, anyway.


    • Anonymous
      September 11, 2006 at 8:05 am


      I think anyone who has been through a difficult time such as a major illness might think of suicide. GBS can take away many things we take for granted. In the beginning of this almost 3 years ago, I was helped a great deal by a social worker at my hospital. I still take a/d to this day. I think anyone who has these thoughts should talk to their family, friends, pastor, Dr etc, there is much help out there as I have found out. Many times I have posted here and been helped by people also.


    • Anonymous
      September 11, 2006 at 9:32 am


      Read a few of your threads, 3.5 hrs sleep would not work for me. After GBS in Jan 2006 and time in the rehab pool learning to walk again I have had to make changes to my life to compensate for it which include:
      1) Getting enough sleep. Without rest and too much physical exsertion, the next day I do not function properly. Cant peice together sentences, and have body aches. Its embarrasing and frustrating. I need 9 hours per night now rather than 6 previously. I’ve also thrown my alarm clock in the bin. I wake up when I’m ready. Now I do it on my terms.
      2) My GBS physician told me that some people all their life work their fingers to the bone and at the end of it all end up with boney fingers. I’ve picked up the guitar after 6 years of not playing the night after he told me and found a new level of expression. Change the perspective while you can. What is important to you ?
      3) I tried taking vitamin supplements (Berroca vitaman B , Ghinko and probably there are many more). These seemed to help. I just walked into the nearest natural health food shop and asked for pills to help with a central nervous system disorder, alertness and energy and walked out with a bag of stuff.
      4) I’ve changed my attitude also working in IT which is demanding. I’ve resigned the the fact that there is only so much I can do. Resource your work correctly so you do not have to work your fingers to the bone. This is totally up to you to manage.
      5) I’ve simplified my life by reducing my mortgage which for me was why up until Jan 2006 why I was put on this planet. I’ve now realised that when I’m gone from this planet, no one will remember me for my mortgage. This was my alteration to perspective.
      6) Clutching at straws, find a rich partner who can support you whilst you rest at home. If you find them, let me know if they have a sister

      Suggest GBS is not the issue, but lifestyle post GBS is…


    • Anonymous
      September 11, 2006 at 9:41 am

      Well….now that is a question to start out Monday off with….

      I can only tell you what works for me….

      1) Faith In God’s plan….I know I do not understand His plan but then again an ant can not understand me driving a car either. I hate to say this guys but maybe Ali, Jeremy, Marge, Angel, Gene, Shannon, Marc (I mean Racer 13) and the rest had this horrible disease, or their loved ones, so that they could help me get through this. (I know this sounds morbid, maybe even harsh but because of your pain y’all have absolutely helped me through this with your advice, humor and love)

      2) My family and particularly my 2 daughters

      3) And Hope

      I will continue you in my daily prayers as well as my thoughts.


    • Anonymous
      September 11, 2006 at 9:49 am


      I, for one, never thought of it. My first consious moment, I said I got a huge hole to dig out of. I’m as normal before, during and after, and enjoy life as much as ever. Just go about it slower these days. I’ve said here from the beginning,6 years ago, never let a disaease take away from you, anymore than it has to. I never understood why people insist that they must give up themselves in times of trauma. Just hand yourself over to a disease and say take whatever you want. Same for people who go through rehab for addictions. There isn’t one thing I can’t do today. What I’m phisically not capable of doing at the moment, I just haven’t figured out a way to do them yet. Just another challenge in life. GBS in particular, does not, I repete, does not, take away heart, sole or spirit, or the person. Period. You get in a car wreak, the machine gets damaged but its’ still drivable, does that make you less of a person for driving around in it? My machine only got damaged, not me.

    • Anonymous
      September 11, 2006 at 10:08 am

      I never thought of suicide…but when the pain from GBS was at its worst I remember telling my husband I wanted to die because I could not live like this much longer. However, after recovery began, I tried to look at what I was able to achieve each day/week by writing it down in a journal. This was a suggestion from my mom who saw that I was very depressed about my inability to do the things I used to do…or to do the things I was trying to do. It actually helped me get things into perspective and I was able to “see” how things were improving. Not to say I didn’t occasionally sit down and have a good cry once in a while.

      I will keep you in my prayers.

    • Anonymous
      September 11, 2006 at 11:09 am


      Thank you for including me in your list.

      Have I thought about suicide — yes. But suicide is difficult for a mostly-paralyzed human being. So I spent the time thinking–mostly about my daughter, my grandson, my son-in-law, my friends.

      I read books in my head (by this time most of you know how much books mean to me).

      And finally–
      I didn’t believe in organized religion and still don’t. But, as a sometimes Catholic, I am afraid to say no to a nun. One of the nuns at the nursing home–a raving feminist–asked me to read at Mass. I sat in my wheelchair reading the Responsorial Psalm and then, months later, stood at the lectern and read the Psalm. The people who came to Mass had the diseases of old age–stroke, dimentia, Alzheimers–and many were Chinese immigrants. I was a conduit between them and God…a great gift to me.


    • Anonymous
      September 11, 2006 at 1:44 pm

      Hi Jever,

      However grim it may seem, I do understand what you mean …….. Before my son was born 4 years ago, I did [I]everything[/I] and [I]anything. [/I]Since April 2005, when the post gbs hit HARD, its been difficult to speak sometimes, (BUT I LOOK SO NORMAL!). I have been on some medication for a few months to help for fatigue and pain, and it has done wonders ….. that is until the beginning of last week. Sitting at a traffic light the other day, I was thinking what it would be like to just go to sleep, or have an accident with no pain involved, and just never wake up – I dont want it to happen tho!. I have NEVER wanted to commit suicide and I doubt (because who ever really knows) I ever will. however I just sometimes wish back to the old me, and I have no idea how to even relate to my husband how I feel, even though he says he understands, I can see so clearly he doesnt. This sounds so shocking because I have never put in words what I thought for that split second. It was not self pity, just a thought. I do have so much to live for, my children and my faith in God.

    • Anonymous
      September 11, 2006 at 2:18 pm

      I can’t imagine life without Brandy’s friendship and warped sense of humor, so like mine, and her ability to help the rest of us. Thank you all for your friendship. Thank you, Brandy, for our sisterhood.


    • Anonymous
      September 11, 2006 at 3:40 pm

      Hi, Jever.

      A tough question, but one that needs to be answered. I’m a CIDPer so it’s a bit different for me. GBSers have a sudden attack, a sudden loss of ability–that’s extremely difficult to deal with, even knowing that in due course you may be able to regain much of your pre-GBS abilities. With CIDP you tend to go down slowly, so you have time to get used to the loss of ability. But you also have the nagging knowledge that it may well continue to get worse and you don’t know how you’ll end up. All I have to do is look at my hands and legs and see the increasing muscle loss to know what may be on the horizon.

      I’m a born-again Christian and as such trust the Lord that He knows what He’s doing. There’s a verse of the Bible that says that ‘we know that all things work for good to those who love the Lord and are called according to His purpose’. I believe that the Lord has a reason for my having CIDP, and in some ways I can see what that purpose is: I’m able to help those who are suffering this and other problems. And having CIDP and slowly losing the ability to do things I was once able to do has certainly given me a different perspective on life. Before it took major things to bring pleasure, but now I find joy in little things–like walking and making coherent sentences and breathing.

      Do I look forward to dying? In a way: I believe with the Apostle Paul that to live is Christ and to die is gain. I’d like to watch how my son’s life plays out, what career he takes, if he finds a wife and has kids, whatever. At the same time I’d like to be out of this body. But have I ever considered suicide? No. Death is God’s business, not mine.

      So, I’ll hang around, and spend my time trying to help others who are fighting the same battles I am and enjoy my life the way it is. And who knows: tomorrow maybe someone will find a cure for this thing!


    • Anonymous
      September 11, 2006 at 3:50 pm

      Jever I don’t have GB but, I know what it is like to have chronic pain. I have had chronic pain for three yrs from a gastric bipass gone bad. I know what it is like to miss two years of your kids lives. I know what it is like to be alone in bed, while everyone elses lives are filled with laughter and sunshine. I know what it is like to be on so much medication you fall and get a severe concussion. No one as looked in your eyes for so long, they can’t look in your eyes and tell you are not there. They can’t tell that you have blacked out for a week from the pain and your brain has shut down from the pain. They believe it is just from the apin meds. I know what it is like to see you kids scared to look at you, they peak around the corner so affraid. I know what it is like to hold your child before they die. I am learning now to hold my son and comfort him knowing this pain I cannot make better, not like a cold or a scrap on his knee. Thats why I am here, learning from you and everyone else. Everyday I come here maybe for a minute maybe for an hour. I learn more from you and everyone else. You are going to help me and my son get through this. In the back of my head I want to ask God why? I know not to, I cry to my husband, how much more can we take? I know that we are all stronger than our hearts or heads believe. We all have some kind of pain, some more than others. I wish I could take all of Masons away. I would carry it for him in a heart beat. I do know I need all of you and some, when I am down you help me, or a phone call from another GB child. Thank You for being here and not giving in to the pain.

      God Bless

    • Anonymous
      September 11, 2006 at 4:48 pm

      Suicide and “wishing life were normal” again or wishing for relief from the pain and struggles are different things, I believe. Chronic pain is debilitating and sets us apart from the “normal” people. I think that all “chronic painers” would entertain those thoughts at times. And many of us carry a “guilt” from watching family/friends struggle with trying to understand our disease and watch how it has affected their lives, too. That’s alot of weight to carry!! And that is why we need each other on these forums 🙂

      Each one of you bring to this “family” the special “You” and we love you and need you. Even when we don’t always agree (that’s people:eek: ) it’s the caring that is the glue. When someone shares what has “worked for them” it’s because they care about you and believe that, just maybe, it will make a difference for you too.

      We each are on an earthly journey and do not know when our part in “The Drama of Life” is complete. Each one of us plays the lead part in our own life and the Director will tell us when to “exit stage left”! Until that time, please know that you are a very significant part in the lives of the GBS family and in the lives of the others who know and love you.

    • Anonymous
      September 11, 2006 at 4:56 pm

      hi jever, no i have never thought about suicide. i have been through tooo much, to list here, to give up on myself after fighting for every breathe i take, for every day i wake up, for my kids, for my marriage, for my family, for my extended family, for life-no matter what it sends my way. i died back on 2/26/99 (user name meaning) not by my own hands, but by a medical issue. i lost 2 and a half hours of my life on that day. don’t get me wrong-the time i was out of my body was just awesome, pain free, worry free-personally only, i worried about my kids and who was going to raise them. i would not ever think to ask why me, or even wish this disease on my worse enemy-no matter how bad they are. i’m happy i can deal with all my health issues in a positive way, who knows where i would be without humor, laughing, jokes, smiling, crying, and lots and lots of input and support from others both here and in my families. on the serious side of the subject, if there is any doubt in your mind if you want to live or die then it is time for help, be it from family, friends, drs, meds or support group meetings. this is your life, take control of it and keep up the fight. you have lived through alot, yeah your life as you knew it is gone for now, but you did make it this far, you have the fight in you. there are different meds for pain and depression. if the first one doesn’t work like you would expect it to, then try another, and another and so on until you find one that does the job. you have alot to live for, you may not realise how much at this moment, but you do. keep venting to us when you need to, you know we will tell you how it is.:) take care.

    • Anonymous
      September 11, 2006 at 8:47 pm

      Suicide crosses my mind sometimes but I don’t know if it is because I get tired of living as a handicapped person or it is because thoughts keep popping up about Marc, our youngest son, the only one we had together, who took his own life three years ago at age 25. He was severely depressed and I know I am not. I now know how incredibly devastating and horrible it is for those left behind not only for a few years but forever. I could never do that to my wife and the other five – now grown – children, no matter how tired I might get of having a chronic disease.

      Here is what I posted after we returned to Thailand after the funeral:


    • Anonymous
      September 11, 2006 at 10:11 pm

      [COLOR=”Purple”]Hi Jever. Have I ever thought of suicide? You bet. Have I ever attempted it? NO. I have a 25 plus year history of depression, which wasn’t helped by CIPD. I take my med’s, go to my therapy, and pray a lot! There are several reasons I’m still here but the biggest one is this: 20 years ago this month my father killed himself (violently). Whenever the most minute thought enters my mind, I just think about what his death did to my family, the grief, anger, loneliness, etc. I have no doubt my grandmother died from a broken heart. I am determined to stay on this earth until God clocks out my time card. There are so many things I wish I could change with a snap of the fingers. With the help of friends, family, and this site, I’m learning new ways to cope, and that even includes laughing at myself(see my last posted smiley-yep, that’s me on the right!). We are a family here and if there is anything we can do let us know. You can pm me if you want. I DO understand….Vicki[/COLOR]

    • Anonymous
      September 11, 2006 at 10:25 pm

      Due to my present mental state, I feel I should not be in this discussion other than to say this:

      Yes, I’ve considered it for differing reasons but have never given in to it for various reasons.

      With my present change in medications and the clearing of severe depression and anxiety, I am coming face to face with just how low my life has slipped and while I suffered a severe case of GBS, I realize just how much I have used GBS as a crutch and an excuse for everything wrong in my life.

      It’s strange to realize that it’s very depressing to see how screwed up you are when the depression lifts.

      If THAT makes sense.

      Realizing all this makes it embarassing to even show my face in public tomorrow.

    • Anonymous
      September 11, 2006 at 10:59 pm

      [COLOR=”Purple”]Hi Mike. Dibilitating depression is an illness not a choice. There is nothing to be embarassed about. When I was working and had bouts of bad depression, I always felt the need to apologize to everyone, even though they were always understanding. You are a wonderful addition to this world, so please be proud that you sought help and it’s working.If you need anything or just want to talk, PM me. Vicki[/COLOR]

    • Anonymous
      September 11, 2006 at 11:35 pm

      [COLOR=#ff0000]I NEVER stop thinking about it. Here’s an example …[/COLOR]
      [CENTER][CENTER][B][FONT=Times New Roman][COLOR=red][I]Remember Me[/I][/COLOR][/FONT][/B][/CENTER]
      [CENTER][B][FONT=Times New Roman][COLOR=red][/COLOR][/FONT][/B][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red][I]Tears of pain burn my cheeks[/I][/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red][I]An end to this misery is what I seek[/I][/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red][I]Why am I cursed to live life this way[/I][/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red][I]Please leave me alone and just go away[/I][/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red][I]This emotional pain has tormented me so[/I][/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red][I]I’m tired of this bull shit, I need to go[/I][/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red][I]I’m scared of the journey that I must take[/I][/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red][I]I need to get going before its too late[/I][/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red][I]Please don’t remember me as a cripple in a chair[/I][/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red][I]Remember me like I was, a big ole Bear[/I][/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red][/COLOR][/SIZE][/FONT][/CENTER][/CENTER]
      [RIGHT][RIGHT][FONT=Times New Roman][COLOR=red][I]-Dave Shafto[/I][/COLOR][/FONT][/RIGHT][/RIGHT]

    • Anonymous
      September 11, 2006 at 11:37 pm

      [CENTER][B][U][FONT=Times New Roman][SIZE=6][COLOR=red][I]A Rest[/I][/COLOR][/SIZE][/FONT][/U][/B][/CENTER]

      [CENTER][SIZE=3][COLOR=red]Close my door let me have a rest[/COLOR][/SIZE][/CENTER]

      [SIZE=3][COLOR=red][/COLOR][/SIZE][CENTER][SIZE=3][COLOR=red]It’s been a long day and I failed my test[/COLOR][/SIZE]
      [CENTER][SIZE=3][COLOR=red]My time is short and drawing near[/COLOR][/SIZE]
      [SIZE=3][COLOR=red]Saying good-bye to all that are dear[/COLOR][/SIZE]
      [SIZE=3][COLOR=red]All the hurting, all the pain[/COLOR][/SIZE]
      [SIZE=3][COLOR=red]They’re trying to break me, drive me insane[/COLOR][/SIZE]
      [SIZE=3][COLOR=red]My wife and my children were all I had[/COLOR][/SIZE]
      [SIZE=3][COLOR=red]I can no longer please, just make them mad[/COLOR][/SIZE]
      [SIZE=3][COLOR=red]Well the battle’s over and they have won[/COLOR][/SIZE]
      [SIZE=3][COLOR=red]When I lost the love of my only son[/COLOR][/SIZE]
      [SIZE=3][COLOR=red]Now my path is clear and my life is complete[/COLOR][/SIZE]
      [SIZE=3][COLOR=red]My heart is broken and no longer beats[/COLOR][/SIZE]
      [SIZE=3][COLOR=red]All that’s left is to close my lid[/COLOR][/SIZE]
      [SIZE=3][COLOR=red]And bury this mess my surgeon did[/COLOR][/SIZE]
      [SIZE=3][COLOR=red]I’m scared to leave, but I need to be free[/COLOR][/SIZE]
      [SIZE=3][COLOR=red]To finally be able to rest in peace[/COLOR][/SIZE][/CENTER]
      [SIZE=3][COLOR=red]-Dave Shafto[/COLOR][/SIZE]

    • Anonymous
      September 11, 2006 at 11:39 pm

      [CENTER][B][FONT=Andy][SIZE=4][COLOR=red]Don’t Cry [/COLOR][/SIZE][/FONT][/B][/CENTER]
      [CENTER][FONT=Andy][SIZE=4][COLOR=red]How I wish I could explain[/COLOR][/SIZE][/FONT][/CENTER]

      [SIZE=4][/SIZE][CENTER][FONT=Andy][SIZE=4][COLOR=red]The final days of my pain[/COLOR][/SIZE][/FONT]
      [CENTER][FONT=Andy][SIZE=4][COLOR=red]The torture of life, living alone[/COLOR][/SIZE][/FONT]
      [FONT=Andy][SIZE=4][COLOR=red]Without my family, I have no home[/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Andy][SIZE=4][COLOR=red]So now my tears silently fall[/COLOR][/SIZE][/FONT]
      [FONT=Andy][SIZE=4][COLOR=red]Everything is gone, including my dog[/COLOR][/SIZE][/FONT]
      [FONT=Andy][SIZE=4][COLOR=red]Darkness is coming it is time to go[/COLOR][/SIZE][/FONT]
      [FONT=Andy][SIZE=4][COLOR=red]Alone in my chair and away I go[/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Andy][SIZE=4][COLOR=red]To a world much better than one like this[/COLOR][/SIZE][/FONT]
      [FONT=Andy][SIZE=4][COLOR=red]To a place where they care that I exist[/COLOR][/SIZE][/FONT]
      [FONT=Andy][SIZE=4][COLOR=red]I may not make it to Heaven or Hell[/COLOR][/SIZE][/FONT]
      [FONT=Andy][SIZE=4][COLOR=red]They don’t take my kind so I say, oh well[/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Andy][SIZE=4][COLOR=red]Don’t cry for me now that I’m gone[/COLOR][/SIZE][/FONT]
      [FONT=Andy][SIZE=4][COLOR=red]Keep these words as I say so long[/COLOR][/SIZE][/FONT]
      [FONT=Andy][SIZE=4][COLOR=red]Please bury my body deep in the ground[/COLOR][/SIZE][/FONT]
      [FONT=Andy][SIZE=4][COLOR=red]Don’t mark the grave, I don’t want to be found[/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Andy][SIZE=4][COLOR=red]I need to apologize to my little red haired kid[/COLOR][/SIZE][/FONT]
      [FONT=Andy][SIZE=4][COLOR=red]I’m sorry I’m not there, and did what I did[/COLOR][/SIZE][/FONT]
      [FONT=Andy][SIZE=4][COLOR=red]But a part of me will live on and grow[/COLOR][/SIZE][/FONT]
      [FONT=Andy][SIZE=4][COLOR=red]As long you carry the last name, Shafto[/COLOR][/SIZE][/FONT][/CENTER]
      [FONT=Andy][SIZE=4][COLOR=red]-Dave Shafto[/COLOR][/SIZE][/FONT]

    • Anonymous
      September 11, 2006 at 11:41 pm

      [COLOR=red]Good luck, Jever. 😮 [/COLOR]

    • Anonymous
      September 11, 2006 at 11:46 pm

      Wow, this is a deep topic. It sounds like you aren’t able to do as much as some of us. Need I complain about tingling feet, fatigue, and occasional pain. I praise God for what I can do. When I was paralyzed I never realized what a witness it was to my friends. To be functioning normal and all of a sudden I cant even feed myself. We don’t realize when we are healthy how much we take life for granted. GBS has helped me appreciate life and the small things. Sure today I thought that I wish I didn’t have to take naps and have split up days. I like what one of you said about throwing away your alarm clock and getting up when you are ready. I do that most days but do work a few days a week to help support our family and I like to get out also. We have the luxury of resting more. Maybe we have less stress in our lives because we can rest more. I would like to be able to help more of those going through GBS so if anyone hears of anyone in Michigan going through GBS let me know.


    • Anonymous
      September 12, 2006 at 12:05 am

      [SIZE=”2″][COLOR=”Red”]I have chills, Captain……..WE need you, my friend[ATTACH]565[/ATTACH][/COLOR][/SIZE]

    • Anonymous
      September 12, 2006 at 9:10 am


      still have not changed my mind. your poems are not only from the heart, but get the msg across. i can not read one of yours & not FEEL it. emotional reaction every time. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      September 12, 2006 at 10:24 am

      Hi All: I am deeply moved by this thread and all the heartfelt responses it evoked. I am a Jungian psychoanalyst and have worked with people for 30 years. I know the depths of pain people can experience and I know that most can move through them. The third day I was in the hospital I told friends and family that I had died and didn’t know if I would be reborn. I feel that I did die in the hospital, at least the old me. I can only see half the clients I used to and had to give up 90% of what I loved the most-teaching and writing. Before GBS I wrote 4 books, but can’t concentrate enough now to write four pages. I tried again to teach this weekend and wound up sleeping for 12 hours that night. I am still exhausted. But I also know from my years of work that there is meaning in everything. Yes I died, but here I am and still working on a new perspective on what my life is about. If we can make meaning of the changes we faced and still face the pain of lost life is replaced by the joy of the new life. For what it is worth, I have worked with dreams all these years and find them a constant source of support and encouragement. They are letters from God if we take the time to read them. If you do dream, reflect on them some and see if there aren’t some answers to be found in them. Best of luck to all, Jeff

    • Anonymous
      September 12, 2006 at 8:26 pm


      with time you will be teaching/writing again. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      September 12, 2006 at 9:26 pm

      [QUOTE=jeff]had to give up 90% of what I loved the most-teaching and writing. [/QUOTE]
      Jeff, I understand what you are saying. I am still working through what CIDP means to the person I used to be. The big difference between most people with GBS and me with a variant of CIDP is that my symptoms are progressing very slowly giving me time to adjust. Retiring in 2001 from the greatest job I ever had as computer center director at a Minnesota college was a tremendous change. But it was a natural transition I had time to prepare for. Coming down with CIDP in 2001 as a Peace Corps volunteer in Thailand was the onset of another major change in my life. But, as I said above, it progressed very slowly.
      My wife Carol doesn’t have GBS or CIDP, but she gave up a job as psychotherapist in Minnesota at the same time I retired. Because she didn’t have a PhD, she could not get licensed again in Colorado when we moved here. They would not grandfather her in. It still would have been a major issue for her and her identity if we wouldn’t have met significant challenges during the past five years: Joining the Peace Corps, albeit for a short time because of an accident she had, followed by 2 1/2years of teaching and sponsoring Burmese refugees in Thailand working with an NGO. This probably was also the reason it helped me adjust to my ever decreasing strength and stamina. We still are in touch with the NGO directors and many of our former students. As a matter of fact, on January 8 we will be returning to Thailand for two months – me with rollator and cane – to teach and work with a new group of ethnic minority refugees.
      PS. I am fascinated and still challenged by Jung’s teachings. I have one of the books (“Erinnerungen, Träume, Gedanken” ) plus a biography on my bookshelf, both in German, to reread some day.

    • Anonymous
      September 13, 2006 at 9:21 pm

      Hi Norb: Thanks for your comments. It sounds like you are doing very meaningful work and that’s great. You are right that it was the suddenness of the changes that was the greatest challenge as I was in the middle of three months of teaching in California when GBS wiped that out. However I do find a great deal of meaning in my private practice and in working on my own understanding of this disease and all it means to me and others. I wish you the best in Thailand. I also suppose your wife knows she can practice in Colorado as an unliscensed therapist? Jeff

    • Anonymous
      September 14, 2006 at 11:32 pm

      If I want to be totally honest, when I was at my worst for the first 3 months of getting CIDP, I think my husband & I were both praying that God would just take me. Although never ventilated or totally paralyzed, I was unable to sit up, lift my arms or legs, or have any use of my hands. Having always been very athletic & very much in shape all of my life, we both knew I could not live that way. In the subsequent 2 1/2 years, as I showed very little improvement, I know that when the pain was unbearable, I know I did again pray to die. But I also knew deep down that it was the pain talking, not me.

      Suicide would never be an option for me, simply because I could not & would not do that to my family. The closest I came to even thinking about it was after my snowmobile accident in March of 2003. The doctors were treating me for a broken collarbone, but I was suffering almost a constant pain level of about 10 for nearly 9 weeks in my shoulder & upper back. I remember getting very depressed at that time, wishing I could just get out of this body. Do I enjoy waking up in this damaged body every morning? Of course not, but I guess I have learned to adapt after over 4 years. But I know I am a very strong person with a strong will to live. Besides, I just found out I will be a grandmother for the first time! Maybe there is a reason I am still here…

    • Anonymous
      September 17, 2006 at 11:27 am

      [CENTER][B][I][FONT=Times New Roman][SIZE=7][COLOR=red]MY LIFE[/COLOR][/SIZE][/FONT][/I][/B][/CENTER]

      [CENTER][FONT=Times New Roman][SIZE=4][COLOR=red]My life in a chair isn’t very fair,[/COLOR][/SIZE][/FONT][/CENTER]

      [SIZE=4][/SIZE][CENTER][FONT=Times New Roman][SIZE=4][COLOR=red]People often treat me like I’m not even there.[/COLOR][/SIZE][/FONT]
      [CENTER][FONT=Times New Roman][SIZE=4][COLOR=red]Some people even poke fun,[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]At those who cannot walk or run.[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]Now that I live my life on wheels,[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]It’s hard to explain how I feel.[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]I am happy to be alive,[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]But I am so lonely on the inside.[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]My family has been great to me,[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]Without their love where would I be?[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]Sometimes I feel like a prisoner in jail,[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]Staring out the window hoping for mail.[/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=4][COLOR=red]I live a sedentary life now,[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]I want to be active but I don’t know how.[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]My legs barely move and my feet are paralyzed,[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]I look like hell and just want to hide.[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]What kind of life is out there for me?[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]Is there one where I won’t burden society?[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]My blood sugar is on the rise,[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]And my liver functions are way to high.[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]It’s impossible not to worry,[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]All these complications happened in a hurry.[/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=4][COLOR=red]Now cheese burgers and chocolate I cannot eat,[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]But it’s hard to get excited about diabetic treats.[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]My emotions are a wreck and I haven’t a clue,[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]What’s a big guy like me to do?[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]I mainly miss the little things in life,[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]A snuggly warm hug from my wife.[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]A sweet little kiss goodnight,[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]Or maybe a friendly pillow fight.[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]Just the feeling that she still loves me,[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]Even though I am not the man I used to be.[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]I will always love her in my heart,[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]Even if we continue to drift apart.[/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=4][COLOR=red]My life on wheels isn’t all bad and no good,[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]Especially when I do more than I could.[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]Like playing with my son or reading to my daughter,[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]And helping my plants to a drink of water.[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]Exercise is fun and therapy is not bad,[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]It’s a great way to vent whenever I am sad.[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]I never have to worry about a place to sit,[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]And I still have my mind and my whit.[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]My fingers are clumsy, but they do allow me to type,[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]When they get stronger I hope to hand write.[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]I am thankful my thighs can move,[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]Hopefully they will continue to improve.[/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=4][COLOR=red]The hardest thing for me to understand is,[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]Why I have to live like this?[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]All I needed was a hernia repair,[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]Not to spend my life in a chair.[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]What was my doctor thinking?[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]As my vital signs were sinking![/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]I wonder if he even remembers me,[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]Or if he knows the sorrow he caused my family?[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]What about the night I was supposed to die,[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]When all my friends came to say good-bye.[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]Thank you for allowing me to share,[/COLOR][/SIZE][/FONT]
      [FONT=Times New Roman][SIZE=4][COLOR=red]That my life in this chair still isn’t very fair.[/COLOR][/SIZE][/FONT][/CENTER]


    • Anonymous
      September 17, 2006 at 5:00 pm


      Your poem touches my heart.

      I hope you know that you are valued for who you are and not just what you can do.

      This was something that was also very hard for my father to grasp when he got sick. He felt like if he wasn’t able to work, he was worthless.

      I think (and pray) that my brothers and I were able get him to understand his value to us as a good father was what was important.

      If you do nothing else worthwhile in your life, being a good father and husband are enough.

      Best wishes always.

    • Anonymous
      October 2, 2006 at 10:14 pm

      [COLOR=red]Thank you Suzanne[/COLOR]

    • Anonymous
      October 2, 2006 at 10:16 pm

      [CENTER][CENTER][B][FONT=Times New Roman][SIZE=3][COLOR=red]My Sentence[/COLOR][/SIZE][/FONT][/B][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red] [/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red]There was a time when I could fight fires all day[/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red]Now I can only sit while the engines drive away[/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red]I hate what that dam doctor has done to me[/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red]Stuck in this chair forever, a prison it will be[/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red]Sometimes I wonder why I wake up each morning[/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red]Why don’t I just roll over and continue my snoring[/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red]At least in my dreams I am alive once again[/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red]That is of course until the nightmares begin[/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red]Often I open eyes wondering if I’m dead[/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red]Then I realize I’m alive, it was all in my head[/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red]Each morning my wife helps me start the day[/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red]Without her and Lyndsay reasons for living would be nay[/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red]Memories of my son sometimes cause me to cry[/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red]God please watch over my boy, in nasty Lodi[/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red]I feel very selfish when I wish I would die[/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red]Maybe this poem will explain some reasons why[/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red]If I die will I walk once more[/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red]No one can answer that for sure[/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red]So I am sentenced to life in this chair[/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red]For a crime I didn’t do, it just isn’t fair[/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red] [/COLOR][/SIZE][/FONT][/CENTER]
      [CENTER][FONT=Times New Roman][SIZE=3][COLOR=red]October 2005[/COLOR][/SIZE][/FONT][/CENTER][/CENTER]

    • Anonymous
      October 3, 2006 at 12:15 am

      Part two of this question: how do caregivers handle suicidal chronically ill partners? My husband (with CIDP) has been suicidal, or thought about it, for the better part of the past year. It has been rough when very suicidal.
      He is such a GUY he won’t do counselling, and when he got really sore he threw the bible against the wall in despair, and it is hard to do anything related to church now. He used to be the more religious of us. He is a very physical person, and doesn’t read to speak of- so as he gets more debilitated, it is doubly frustrating as he wouldn’t go to computers or books at the best of times. Can we get past suicidal??? Sigrid

    • Anonymous
      October 3, 2006 at 1:18 am

      i love this poem-so well written.
      i used to have those suicidal thoughts haunting me day in day out…
      but somehow i never got the guts to attempt anything, guess that makes me a coward

    • Anonymous
      October 3, 2006 at 10:41 am

      [QUOTE=supersij] Can we get past suicidal??? Sigrid[/QUOTE]
      Sigrid, would he consider taking antidepressants? I’ve been on Prozac (generic = Fluoxetine, not expensive) for years. It does not make me feel very different but I usually have a positive outlook and tend to quickly get over frustrations because of my disability. Antidepressants don’t work the same for everyone but it would be worth a try.

      We lost our youngest son to suicide three years ago. We knew he was depressed but he never let on how serious it really was until it was too late. We still wonder today if an antidepressant would have helped to give him a more positive outlook. Only problem, he always was very stubborn and did not want to take medications.

    • Anonymous
      October 4, 2006 at 12:41 am

      [COLOR=”Purple”]Hi Grumpymouse. Glad to see you on the site. I just wanted to respond to your post. My father killed himself 20 years ago and I don’t know if I would call it a cowardly thing to do but it definitely was a very selfish act. NOT acting on your thoughts and not attempting suicide takes COURAGE. Please don’t ever think of yourself as a coward. I hope you find this site helpful. It has been a godsend to me……..Take care, Vicki[/COLOR]

    • Anonymous
      October 4, 2006 at 5:31 pm

      [CENTER][FONT=’Bodoni MT Black’][B][FONT=Times New Roman][COLOR=red][SIZE=3]What I Feel[/SIZE][/COLOR][/FONT][/B][/FONT]
      [CENTER][FONT=’Bodoni MT Black’][FONT=Times New Roman][SIZE=3][COLOR=red] [/COLOR][/SIZE][/FONT][/FONT][/CENTER]
      [CENTER][FONT=’Bodoni MT Black’][FONT=Times New Roman][COLOR=red][SIZE=3]Here I lie on this bed of steal[/SIZE][/COLOR][/FONT][/FONT][/CENTER]
      [CENTER][FONT=’Bodoni MT Black’][FONT=Times New Roman][COLOR=red][SIZE=3]Their blades and needles are all I feel[/SIZE][/COLOR][/FONT][/FONT][/CENTER]
      [CENTER][FONT=’Bodoni MT Black’][FONT=Times New Roman][COLOR=red][SIZE=3]I’ve tried in vain to let out a scream[/SIZE][/COLOR][/FONT][/FONT][/CENTER]
      [CENTER][FONT=’Bodoni MT Black’][FONT=Times New Roman][COLOR=red][SIZE=3]Then I wonder, is this a dream[/SIZE][/COLOR][/FONT][/FONT][/CENTER]
      [CENTER][FONT=’Bodoni MT Black’][FONT=Times New Roman][COLOR=red][SIZE=3]Electrical shocks bring me back[/SIZE][/COLOR][/FONT][/FONT][/CENTER]
      [CENTER][FONT=’Bodoni MT Black’][FONT=Times New Roman][COLOR=red][SIZE=3]It’s my body that’s under attack[/SIZE][/COLOR][/FONT][/FONT][/CENTER]
      [CENTER][FONT=’Bodoni MT Black’][FONT=Times New Roman][COLOR=red][SIZE=3]The temperature’s rising I need to escape[/SIZE][/COLOR][/FONT][/FONT][/CENTER]
      [CENTER][FONT=’Bodoni MT Black’][FONT=Times New Roman][COLOR=red][SIZE=3]Where the hell is the exit to this place[/SIZE][/COLOR][/FONT][/FONT][/CENTER]
      [CENTER][FONT=’Bodoni MT Black’][FONT=Times New Roman][COLOR=red][SIZE=3]Pinned down once again[/SIZE][/COLOR][/FONT][/FONT][/CENTER]
      [CENTER][FONT=’Bodoni MT Black’][FONT=Times New Roman][COLOR=red][SIZE=3]This is it, this is the end[/SIZE][/COLOR][/FONT][/FONT][/CENTER]
      [CENTER][FONT=’Bodoni MT Black’][FONT=Times New Roman][COLOR=red][SIZE=3]Frozen with fear I cannot move[/SIZE][/COLOR][/FONT][/FONT][/CENTER]
      [CENTER][FONT=’Bodoni MT Black’][FONT=Times New Roman][COLOR=red][SIZE=3]I find myself sitting on the moon[/SIZE][/COLOR][/FONT][/FONT][/CENTER]
      [CENTER][FONT=’Bodoni MT Black’][FONT=Times New Roman][COLOR=red][SIZE=3]Looking down on my lifeless form[/SIZE][/COLOR][/FONT][/FONT][/CENTER]
      [CENTER][FONT=’Bodoni MT Black’][FONT=Times New Roman][COLOR=red][SIZE=3]I cannot defeat this raging storm[/SIZE][/COLOR][/FONT][/FONT][/CENTER]
      [CENTER][FONT=’Bodoni MT Black’][FONT=Times New Roman][COLOR=red][SIZE=3]Doctors nurses try to keep me alive[/SIZE][/COLOR][/FONT][/FONT][/CENTER]
      [CENTER][FONT=’Bodoni MT Black’][FONT=Times New Roman][COLOR=red][SIZE=3]But it’s time to go, just let me die[/SIZE][/COLOR][/FONT][/FONT][/CENTER]
      [CENTER][FONT=’Bodoni MT Black’][FONT=Times New Roman][COLOR=red][SIZE=3]I’m sorry little one, your Daddy’s gone[/SIZE][/COLOR][/FONT][/FONT][/CENTER]
      [CENTER][FONT=’Bodoni MT Black’][FONT=Times New Roman][COLOR=red][SIZE=3]He suffered in pain way to long[/SIZE][/COLOR][/FONT][/FONT][/CENTER]
      [CENTER][FONT=’Bodoni MT Black’][FONT=Times New Roman][COLOR=red][SIZE=3]I’ll always be with you deep inside[/SIZE][/COLOR][/FONT][/FONT][/CENTER]
      [CENTER][FONT=’Bodoni MT Black’][FONT=Times New Roman][COLOR=red][SIZE=3]Because a part of me give you life[/SIZE][/COLOR][/FONT][/FONT][/CENTER][/CENTER]