No Recovery For Some
February 15, 2012 at 1:29 pm
I was told after three years that I would not recover fully. I am left with a deficit of both legs below the knees with drop foot of both, numbness and tingling (paresthesia). I will wear braces for the rest of my life. The popular quotes are that 80% fully recover. I gave it my best for three years. Here are some things I learned:
1. What doctors know about GBS can fit inside a thimble with room for my braces.
2. There is no medicine to alleviate the numbness you feel in your legs or elsewhere (the feeling that they fell asleep) believe me!
3. I had no axonal damage but still fell into this group that does not recover fully.
4. We don’t know where it comes from and there is NO CURE.
5. Some nerves do not restore, there are gone forever, off the planet.
6. Recover can take up to two years or more is also a popular quote. Most people come back under 1 year.
It is the illness from hell. There is a relief when it’s over; all the hoping was a waste of time. Thanks to all the folks I spoke with at the forum these last three years and good luck to you. If you have not fully recovered like me, I wish you peace of mind. I will never return here again.
February 16, 2012 at 7:49 am
*hug* I know what you are going through. I am almost at the 6 year mark and still have so many issues. I am angry, depressed, in pain, and feel as if i should just say to hell with it, this really is as good as it gets. Life will never get any better. I too realized hope was a waste of time after thinking “when I hit 5 years it will all be okay!”. Bull. The stats are as bad as the doctors knowledge of what we live with. I am so glad some recover, face it, accept it, whatever. I still don’t have the answers I need about how much damage was done, I don’t have to wear braces and am not in a wheelchair as of yet, but that does not mean I do not hurt terribly and have maddening limitations that vary so much that living within them is impossible. Please know, you are not alone. It is not all hearts and rainbows and quite honestly trying to stay positive is pretty difficult. I wish that you will find relief and solace somehow and that maybe just knowing someone understands will help ease your mind.
Peace be with you
AnonymousFebruary 16, 2012 at 7:36 pm
Somewhere someone along the line knew enough to save your life, but apparently that is not good enough.
Illness from hell – tell that to the parent of a child born with any one of the hundreds of things that will require their child to be restricted from day one- need medical attention for the rest of their lives – or worse yet – know that their live will end prematurely.
I will never return here again- fine take your ball and go home – find another playground.
Hoping was a waste of time – here is a novel idea- did you try doing instead of sitting there hoping for whatever it is you think is suppose to happen. Do you volunteer for anything in the community – help those worse off then you – and there is ALWAYS someone worse off than you. However I am not going to give up hoping I win the lottery, hoping my spouse will wake up one morning looking like George Clooney, hoping my kid will go to MIT, hoping for world peace….
If you were a defeatist before GBS, you will be one after. No amount of pep talks or someone saying suck it up is going to help. If you aren’t coming back then what was the purpose of you post? I do see that my point is moot, but on the off chance that you will come and see who responded I would like to know.
AnonymousFebruary 17, 2012 at 2:35 am
Hedley I’m sorry to read your post. I am 21 months post GBS. I still have hand and foot numbness and don’t know if it will go away. I spent 2 weeks in a coma and 2 months unconscious. Over 4 months paralyzed from the neck down. Lost almost everything I own. BUT I’m still alive and I have a family that still loves me. I found so very manypeople in the hospitals and rehab units that were in wheelchairs with no chance of ever coming out of one. My OT is 47 with GBS from 30 yrs ago. She is still in a chair with limited use of her hands. And she is the sweetest, loving and caring lady I will ever meet. Has a son 11 yrs old and a loving husband she met 15 yrs ago. And she doesn’t feel sorry for herself. I honestly know your pain and sadness but you somehow need to try to look at those around you and try to move your focus off of yourself and shift it to them. It’s not easy but unless you do your life will not get easier but will get intolerably worse. I care, honestly I do.
AnonymousFebruary 17, 2012 at 2:17 pm
I’m not sure I have the adequate words to combat all the negativity and broken spirit evident in Mr. LaMarr’s post. I’m sorry that he feels this way. I guess it’s pretty natural to want to play the “blame game”, but I find no solace in that approach, only bitterness and self deprivation. In the end, how we deal with this terrible illness will ultimately decide how we choose to function in life. Will we spend our time locked in lamentation and regret or find new meaning for our lives? Being almost 3 years into the recovery phase of GBS, I continue to strive for and notice improvement. My glass will always be half full, and I will not give up hope for a better me in the future. Indeed, GBS is a challenge that no one asked for, but given the options that are available to me I have chosen acceptance for this day allied with faith that each day will bring something good into my life. Today there is a beauty in this world that I so often took for granted when I was well. I write this with an attitude of gratitude and the wish that good things continue to happen in your lives. Don’t give up!!
February 21, 2012 at 9:44 pm
Hey Hedley, long time, no talk. Sorry you are on the bummer, how I wish things could be better for us all. I understand that waiting for full recovery is difficult. And I can appreciate your bitterness. Like Tom said, I’m not sure it will help, but it is understandable.
February 23, 2012 at 5:00 am
Hedley..Keep positive and hope you come back…
Years ago (pre GBS) someone with a terminal illness told to me in conversation “it is what it is” it stuck in my long term memory not sure why. Not to sound harsh but she’s dead and I am alive. I may be limping and kicking but I am alive. Better in some ways. I am 15 months…Much better…Back to ME..NO.
My point is it’s OK to say “it is what it is” but to say “Recover can take up to two years or more is also a popular quote. Most people come back under 1 year.” your right they don’t know! But improvement can take place no matter how many years it’s what you choose to believe. Accept where you are today but don’t acept it as the future.
(Keep the glass half full, refill as needed :).
March 1, 2012 at 4:12 am
Hedley—i dont know a lot about GBS—-im usually on the cidp forum. People from there have improved long after three years of damage. Some have found successful treatments, and after even 10 years of nerve damage have still had some recovery.
i would think nerves are nerves and however they were damaged that the healing capacity would be the same??
maybe do some searching there and read some os the success stories—I certainly would not give up hopes of improvement just because one person with knowledge of the disease that fits inside a thimbal told you so………
March 4, 2012 at 6:03 pm
I can’t identify with the feelings expresses in the original post at all. After a few months of hospitalization, a good part of it completely immobile below the neck, It was a joy just to sit up unassisted for the first time, and to make every step along the way to recovery, to whatever degree. Today, although I walk without braces or AFOs, I still have partial disability from the knees down from which I may never fully recover. My feet are in constant pain, more so the more I walk on them. It means nothing to me, because I can walk up the hill to the hospital and look at it from the outside, and go inside to encourage others who hope to walk again. Any day I go out, I am likely to see others with greater disabilities than myself. If I hobble around in pain the rest of my life, I consider myself a lucky man.
Those who would put down the medical profession for having less than perfect knowledge of the workings of the human body, and for being unable to cure every disorder, should consider that before modern medicine about a third of GBS patients died of respiratory failure.
AnonymousMarch 8, 2012 at 4:40 am
• I think you have made some truly interesting points. Not too many people would actually think about this the way you just did. Im really impressed that theres so much about this subject thats been uncovered and you did it so well, with so much class. Good one you, man! Really great stuff here.
March 8, 2012 at 12:38 pm
December 28, 2012 at 2:54 am
Hedley…I have not been for quite some time, I am 15 yrs. post gbs. I live with pain in my legs all the time, and to be honest it gets worse as I get older, but I won’t give up. Oh I have days were I say why me especially after a stroke, shingles and several other problems. However I am thankful for a sun rise every day. Life is what you make it, if you want to be full of anger and self pity you will stay hurting nomatter what anyone says to you.
I hope you know you have many friends that are here for you. I can tell you not to give up, but that is up to you.
September 23, 2013 at 4:57 pm
After coming very close to death before receiving treatment, I was thrilled just to be able to talk to my family, feed myself, etc. again – you get the idea. Once I was more coherent, my youngest daughter asked me a very important question:
“Mom, how are you going to recreate yourself?”
Since my life had bottomed out, I had the opportunity to rebuild it the way I wanted it, starting from scratch on every level. This was a life-changing question for me and I realized that I had the power to make my life good or sink it even further.
I did not have the type of epiphany that people do in movies but I was given a second chance at life and I did not and do not want to waste it. I want it to be as good as I can make it. Sure, I’m still working through a few limitations but I’m dating again, getting out a little and visiting, cooking for myself as often as I have energy to do so. In other words, I still have fun and am grateful to be alive to walk my daughter down the aisle next week. (By the way, I’m the mom)
If Hedley chooses to throw in the towel, that is certainly his/her right to do so. It’s just not my choice. I suppose I can understand feeling defeated, I get tired of it sometimes. But reminding myself of how far I’ve come and the fact that I almost wasn’t here at all, is usually enough to get me positive again. So, perhaps Hedley will re-find some happy purpose to life that keeps one going. I hope so. If not, no words will sway him/her from a negative and unhappy course. What a sad thought.
September 23, 2013 at 6:30 pm
azgold, I’m with you. More than a year after my previous post in this thread, I still have some disability in my legs. I expect it is permanent. Nevertheless, I can walk without assistive devices. Every day that I can walk is a good day.
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