Looking back over past 5 years…

    • Anonymous
      March 22, 2007 at 7:28 pm

      Unlike so many of you with GBS, I don’t really have an anniversary date. Unlike most of you with CIDP, I haven’t had any treatments since 2003, so I have always felt that I fall somewhere in between the two. I actually consider myself more like a person who had GBS & am left with residuals. But I do have some landmark dates that I remember all too well; severe upper back pain began on March 16, 2002 & would last 4-6 months, hands & feet went numb on March 27, 2002, & by April 27th, of 2002 I had lost the ability to walk, raise my arms, or use my hands. Unlike most of you with CIDP, I would remain this way for 26 months, as I was refractory to IVIG, PP, & even steroids did very little for me. I am unusual as it was an extreme protocol of cytoxan infusions that finally arrested my CIDP, & it would be the following 2 years that saw any nerve regeneration.

      I have been active on this forum for over 4 1/2 years now, even though the past few years I have to admit I have seen very little improvement in my condition. The “two year window of healing” seems to have been very accurate in my case. I still walk with AFOs & partially numb feet, use a cane when I go out of the house, & need a wheelchair for very long distances. Like most of you I put up with a fair amount of nerve pain daily, especially in my feet, but neurontin does help tremendously. After reading this forum for so long, I feel like I know a lot about this illness, I don’t think there is much that is new that anyone can tell me about CIDP.

      So why do I come here after all of this time? At my worst, which seemed to last a very long time, I needed this forum so much. Every morning it was my lifeline, & I honestly don’t know how I could have gotten through those first few years without it. No one else could even begin to understand what it was like to have so much taken away, so quickly, at age 48 from an illness that no one I knew had ever even heard of, including myself. As time has gone by, I have a “new norm”, I know what I can & can’t do, & that we need to accept our limitations & quit apologizing for them.

      I know that I need 11 hours of sleep at night now, & often a two hour nap as well. I pick my battles carefully, if I go to water aerobics, then I have to go to the grocery store another day. I have learned how to say no when I am tired & not feel guilty about it. I kept my cleaning woman even after I began to see improvements; one less thing to worry about. I know longer feel guilty about that, nor do I feel guilty when my husband cooks. But I am lucky that I got SSD right after my short term disabilty ran out after the first 6 months. I am lucky that my 3 children were pretty much grown up when I became ill. I am also lucky that my husband was able to retire after 30 years, even though we are only 53 & 55.

      Some things I do differently now, such as using a shower chair for showers, cutting my fingernails with my palm & not 2 fingers, still type with 2 fingers, leave my buttoned down shirts buttoned when I take them off, fasten my bra & then put it over my head, etc. But after 5 years one forgets what it was like to do these things any other way. I am happy to have gotten what I got back, & to remain the same every day. I have seen so many my age die of other causes, I am still alive. I no longer believe CIDP is the worst illness to have, as I once did; and believe me I had one of the 4 worst cases Dr. Parry has ever seen.

      Why all of this rambling? Because I come here now only to help those of you who are new to CIDP, or those not new, but still with questions. At some point I think we begin to realize that we have to accept this new norm & life goes on. I now believe that there are many illnesses worse than CIDP, & hope that many of you will come to agree with me eventually. I hope that this post might help out someone new to this illness & anyone can feel free to PM or email me with questions. Thank you to everyone who helped me at my worst, for that I will forever be grateful. Thank you to the Administrators for this forum, how much it helps so many of us with such a rare illness.

    • Anonymous
      March 23, 2007 at 12:54 am

      Thank you, Pam, for sharing. Acceptance of these disease processes can be so difficult, especially with chronic pain. It is hard to move on when life changes so suddenly. I, too, have found that with time I have come to acceptance not just resignation. But I also realize that this part of the journey may come at different moments for others. I am so grateful to the Foundation for the work they have done and are doing. And to my cyber “family”, I love you all and thank you for accepting me as “one of the kids” 🙂 You have been my “life line” more times than you’ll ever know. And for that I THANK YOU !!

    • Anonymous
      March 23, 2007 at 10:25 am

      Bravo, Pam! Well said. I love the optimism in your post. It is contagious! We have lots to be grateful for, especially the Foundation for this forum. I can’t imagine where we would be without each other through this site. I can’t remember when I first started visiting this site… memory isn’t what it used to be, but I do remember to check here almost everyday. Today was a special treat to read your post. Thank You!:)

    • Anonymous
      March 23, 2007 at 11:22 am

      Thank you for your story.

    • Anonymous
      March 23, 2007 at 12:15 pm

      Thank you Pam, To accept the things we can not change is a biggie. Takes a lot of wisdom thanks for sharing. gg

    • Anonymous
      March 23, 2007 at 1:05 pm

      THANKS PAM- That sure is a great story, also your right this forum is a life saver for us all. I’m glad I found this (my second family) , Thanks to all.:D

    • Anonymous
      March 23, 2007 at 3:50 pm

      Hi Pam,

      We go back a few years and I know how far you have come with CIDP.
      You are an inspiration to many who have come before you and after you.

      To accept the things we cannot change is a very hard struggle, but we do and we all try to do them with grace and dignity, just as you have my friend.

      So I salute you and all of your accomplishments.

    • Anonymous
      March 23, 2007 at 7:29 pm

      Pam, ever since I joined these forums you have been an inspiration for me, thank you 🙂


    • Anonymous
      March 23, 2007 at 7:34 pm


      Thanks for your inspiring post. Some days it’s hard to feel positive, and reading something like what you wrote is really uplifting.


    • Anonymous
      March 23, 2007 at 9:11 pm

      Thanks Pam. It is so important that people who have gone through this struggle and reached a level of acceptance share their experience andhard won wisdom with new people and with all of us in fact. How many times do we get the same questions from new people on the board about fatigue and pain and yet the questions must be answered for everyone who comes. I feel like you do that I know as much about GBS as I am likely to but I feel it is important to be a resource to those who do not. I have had a very hard week so I don’t feel quite so accepting of things as you right now, so it is just as important for me, after two years of struggle, to hear what you have to say as it is for the new people. So keep on writing-we are all the better for it. Jeff

    • Anonymous
      March 23, 2007 at 9:23 pm

      Pam Thank You for posting your story. You said that we need to accept our limitations & quit apologizing for them. I haven’t quite learned that yet and I keep apologizing at work and I come home tired and burnt out and fed up. I know lots of people are worse then I am but we all have to learn what are limitations are and learn to accept the new normal.

      So thanks for posting your thoughts


    • Anonymous
      March 23, 2007 at 10:20 pm


      truly inspirational – glad you have found & accept your new self – thank goodness you had parry who prolly knows more abt Rxing gbs than anyone alive – your post brought back vivid memories of my battle – never give up, never give in, you never know when new recovery will show its face. 🙂 take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      March 24, 2007 at 8:07 am

      You call this rambling? I think you have expressed your thoughts and your wisdom very well. I recognize a lot in the way you live your daily life, the choices you have to make every day and learning to be thankful for and see beauty in “little” things.

      I have also felt guilty a lot and always thought I needed to explain…well, everything! But it is getting better and will continue to do so because of wonderful posts like yours.

    • Anonymous
      March 24, 2007 at 3:33 pm

      Hello my dear friend Pam
      Thank you for sharing this with us ..I am shure it will help many new people .It is nearly three years since I met you and I have always admired you for after being such an active person before CIDP you had the strength and will to continue on , I have CIDP since childhood and I always wondered which is most difficult to accept our illness ….being healthy till some older age and then happen …meaning you have to quit many things that you were use to doing daily ….or having CIDP since childhood and never got the chance to do some things you always dreamed of doing …mine were running …dancing like my classmates …even ballay ..play tennis …still brings a lump in my throat …only when I remember it …I try to avoid all these years to think about all these things so I dont feel hurt and it helps …I focus only to the things I can do …I can swim a little and I can JUMP and do some excersises in the water …oh that feeling !!! do try it for those that havent tried excercising in the water …you feel free … feel your body very lite.
      Best wishes to all
      Thanks Pam .

    • Anonymous
      March 25, 2007 at 12:52 am

      I just want to thank all of you for your replies, it just reinforces what I said about how much this forum helps us all out. I have always wished so much that we were all closer so that we could actually meet each other, especially my friend Maria, but how far Cyprus is from Minnesota! My son was born with spina bifida (born paralyzed below the waist) & I was always his caretaker when he was growing up. How guilty I always felt that he could not do the majority of things that his siblings did.

      After I became ill, he was actually my daytime caretaker for months until I was well enough to make my own breakfast & lunch. We had many discussions about whether it is better to be born ablebodied & lose one’s health, or to be born disabled. He prefers that he knows nothing but disability, I, on the other hand, am grateful for all of the years I was able to dance, ski, play tennis, run, skate, ect.

      When I go to sleep at night I can still run around a tennis court, swish down a snowcovered hill, run the hurdles… Maria is so right about swimming, as in the water I can run & jump as well. I still have my down days, & some very down times, but so do many people without CIDP. It is all in the way we choose to look at life, as most have some kind of adversity, even though others may not be able to see it. But how wonderful it is to have a place to come & vent when these days come, so that we don’t overburden our loved ones. That is what is so great about this forum…

    • Anonymous
      March 25, 2007 at 2:08 am

      Reading your posts reminds me of the many conversations that we have
      had. I celebrate your attitude and determination. You have come far
      and it has not been easy. You have struggled and much to your surprise
      and by the grace of God you are on the other side of it.

      That kind of struggle is inspiration to others and for your many gifts of
      sharing, I applaud you!!

      You are a very strong spunky lady – I am delighted to read about your
      reflection on all that has gone on, in this, your journey.

      Blessings for a healthy rest of the year…

      Another Minnesotan – Maureen Boz – Woodbury