Alittle about me
AnonymousNovember 17, 2006 at 9:27 pm
hello to all … i am 38 years old , a wife and a mother of 4. i have had gbs for 3 years now . the doc keeps telling lets wait one more year to see if you can recover more, no such luck. well yes i can walk but in awful pain and i look funny wobblin around. my face is still partically paralyzed so i talk funny and dont look the same. i get tired very easy .my eye site is not the same either. i get sick very easy.my feet always feel like there wrapped in bobwire and i get shocking pains through my legs ans feet.i could go on and on … so my question is does alot of you feel this way???? should i still have hope… will i ever be the same woman i was ??? please someone tell me…:confused:
AnonymousNovember 17, 2006 at 10:11 pm
I’m a 33 yr old man who was healthy his whole life. well my job requires me to be fit, one day after work out of no where I started feeling really tired so I laid down for a nap I got up a couple of hours later and decided to just fall out for the night cause I just didnt feel like myself. I got up around 7am I couldnt walk my vision was blurred in the hospital for a week did home therapy for 3 weeks i just finished 6 weeks of physical therapy now I walk w/the cane. I think the reason for my rapid recovery was the will to get well. alot of people told me to take it easy, I decided to push myself to the limit and not give up. I was so persistent. I got results I just wasnt gonna have my wife take care of me. Must have faith and just do it. I havent returned to work yet but I’m still working on the condition. So in a nutshell dont give up, keep the faith cause their is hope, although no one could’ve told me that a couple of months ago.
AnonymousNovember 18, 2006 at 12:28 am
I mean no offense to LyfeWithGBS, but it sounds like you might have had a rather mild case. Ever totally paralyzed for 9 months, or on a ventilator unable to breathe on your own for months? I just ask because a one week hospital stay is very short. I had a severe case of CIDP (never fully paralyzed) & still spent over 3 1/2 months in 3 different hospitals, & after over 40 IVIG infusions, 17 PP tratments, & massive steroid infusions for 8 months I was still not any better. Actually, I was not able to walk a single step until after 2 1/2 years. Not your normal case of CIDP.
The textbooks say that 80% of patients with GBS make a full recovery. Maybe they do, & they are out working full-time & leading normal lives. We usually do not hear from them, maybe one or two posts to tell us how they are back to normal. There is usually something included about how they always had a good attitude & that’s why they recovered. Or about how hard they tried? Like there are those that don’t? Anyways, my point is that not all make the great recovery that we had hoped for, but that it isn’t our fault.
I believe that everyone gets hit differently, & recovers differently. I have been on this forum for over 4 years now, & seen some with extremely severe cases make great recoveries; others with milder cases left with residuals. No rhyme or reason to it. And yes, Kelly, we here on the forum do suffer many of the same residuals that you have, fatigue being the worst. And this is the place to come & vent; who else can understand but the members of this forum? Family members will try, but they do not feel the pain, the weakness or the fatigue. If you feel like you got screwed by becoming ill at 38, I couldn’t agree more. I was almost 49, & still feel the same way; but I do try to make the best life I can with what I am left with.
AnonymousNovember 18, 2006 at 5:00 am
[QUOTE]The textbooks say that 80% of patients with GBS make a full recovery. Maybe they do, & they are out working full-time & leading normal lives. We usually do not hear from them, maybe one or two posts to tell us how they are back to normal. There is usually something included about how they always had a good attitude & that’s why they recovered. Or about how hard they tried? Like there are those that don’t? Anyways, my point is that not all make the great recovery that we had hoped for, but that it isn’t our fault.
i am one of the ones that have made a full recovery (give or take a few minor residuals but nothing comapred to what you guys have described here. I just wanted to let you know that i agree that it has nothing to do with how hard you try .. or how fit i was before gbs (not!!!!). Or even how many people you have praying for you. Yes i worked hard to fight this bloody illness but dont we all. It is just the roll of the dice how hard you are hit or how quickly you recovery or to what degree. People (including my doctor)often ask me if i ask “why me” why was i the 1 in 100,000 to get this but to be honest that never crossed my mind. I do often wonder though why i was one of the lucky ones to get better so quickly.
I understand how frustrating it must be to hear people say – it was my will to get better that did it. It is such a fine line between working your guts out to get better and overdoing it. I sincerely wish everyone could have the recovery i did but i know that is not the case. I try not to rub peoples noses in it, but i also want to give people hope that recovery can happen. If i ever say something that upsets a fellow GBSer i hope someone will tell me to pull my head in;)
AnonymousNovember 19, 2006 at 11:05 am
Pam H –
I agree totally. With GBS, I believe you cant push yourself to recover, or you will just hinder yourself, because we all know what happens when we overdo things. I dont think the will to get better has anything to do with it when it comes to gbs. Nerves don’t heal very fast, they need time.
I am one of the lucky – I had GBS in february, was in hospital for two weeks, but was severely weakened in the shoulders and hips. I came home w/a walker, then a cane for a month, then walking on my own. I too, am a mom of two young boys ages 4 and 10. I am back to work part time, but will be returning full time on 1/1. I was in p/t for two months, and will return in january for left hip problems.
November 22, 2006 at 10:07 pm
Kelly, I’m one of the ones who doesn’t post much…BECAUSE I am one of the lucky ones that has made a rapid and mostly complete recovery. When you work and resume your life it is difficult to make 900+ posts. I guess it’s important to know people have made recovery. I remember the nuero doctor telling me I would…and then my regular doctor telling me it would be months NOT weeks. The thing you learn here is how variable GBS is. I’d like to say my recovery is due to good attitude and hard work, but I have a feeling those who have not recovered so quickly have worked much harder and have a very positive outlook.
My hat’s off to all who keep on keepin on.
AnonymousNovember 23, 2006 at 1:27 am
I just turned 37 in November and today is my 4 year anniversary from a severe case of GBS. I have a 12 1/2 yr old daughter and a 5 yr old son. The both of them keep me busier than any therapist ever could!
The left side of my face is still partially paralysed, I have learned to compensate for this BUT when I am tired or sick it is VERY noticable. I still eat with my hand over my mouth to avoid any embarassing situations. My legs are my biggest problem still-pins & needles, shocks, lots of deep cramps lately. When I am tired or overdoit I have a significant limp. The pain is mangeable now after finding the right combination of pain medication (that has been a 2 year trial by error deal!)
What I have learned over the past 4 years is that you will have times when you notice alot of improvement and times when nothing is happening. Some days I will stop dead in my tracks because I realize I am doing something that I haven’t done in 4 years. Example: One day I was working in the clinic at the school. We got a call that there was a student having a seizure in the 6th grade hall. Once the emergency was over I realized that I had RAN down the hallway!! Now I am not saying I can run laps around the track but it is nice to know I can run if the need arises.
You should always have hope. When you lose hope you are giving up. As far as ever being the woman you were, no matter how well I recover I will never be the person I was before GBS and I don’t think I ever want to be. Don’t get me wrong, I would love to be pain free and lose some of these residuals BUT I like who I have become and what I have learned along the way. I was so busy before that I never enjoyed life, now I embrace every minute.
One of the best things that could have happened to/for you is finding this place. The people here are the best because they fully understand what you are feeling and thinking. No matter what they will always be a support to you.
AnonymousNovember 24, 2006 at 3:20 pm
Kelly: I first contracted GBS a little over a year ago (August 2005), when I was 52 years old. Was completely paralyzed and spent 2 weeks in hospital then 6 months in a Health Care Center (Rehab). I too, didn’t know if I would ever be the same person I was before. I am walking, driving, and back to work full time. I have constant tingling and pain in my feet, legs, hands and arms. I know that this is because the nerves are coming “back to life”. When I think back to when I couldn’t move and thought I may never walk again, it was very scary, as you well know. I am thankful that I have come as far as I have, but I get so tired of always hurting, and therefore sometimes being cranky (downright crabby) to those who love me and are only trying to help. I sometimes resent their “helping” because it makes me feel like an invalid, so I try and do whatever I can even though it takes me about twice as long as it used to. But boy do I feel proud when I accomplish it. No Kely, I am not the same woman I was before GBS, but I have learned patience, also to ask for help when I need it (people love to help if you don’t start feeling sorry for yourself), and this GBS reconfirmed the loving brother I have and the wonderful friends who were there for me when I was at my lowest. So no, we are not the same people, but I hope this condition has made us more empathetic and caring towards those who are not as fortunate as we are, and be thankful that our loved ones haven’t had to go through this “learning experience”. I wish you all the best, Kelly, and all the kind people who are on this site. May God Bless You. Marsha.
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