guillaine barre syndrome...gbs: 22 years ago I had... - EDMESH


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guillaine barre syndrome...gbs

tobby1428 profile image

22 years ago I had this condition,although to be honest it was never properly diagnosed,for my clinical needs it was treat as gbs all be it a very rare variant.i died 5 times because of respiratory failure,i spent a long time in hospital,totally paralysed and on a ventilator.for 6 weeks even my eyelids were not working,the nurses used to tape open my eyes for a very short period of time so that I could see my wife and two s mall children(9 and 3).eventually my eyes did start to work,it was funny to put faces to the voices that I had heard.i was in a lot of pain both physical and mentally,i suffered constant hallucinations and felt totally fatigued all of the time,even thinking about something would tire me out.i was ventilated for over 4 months and my recovery was painfully slow.i was the only patient in itu who was awake,everyone else was either asleep(induced) or in a state of near death,i never seen so many people die in such a short space of time,despite the efforts of the nurses to distract me I was totally aware of what was happening,the porter arriving with a shroud and then an hour later with the enclosed trolley I witnessed this all.i later learned that a lot of patients do not know that they had been in itu!this whole episode which is a form of therapy will take a long time to write,i am feeling extremely upset so I will stop now,thank you to all my friends on health unlocked for their love and support.i will write more if you will read it.some of it will not be easy reading and some will shock you! so until later god bless you my friends!!!

10 Replies

Thank you for sharing this experience. How awful for you. I can see how difficult it must be for you to write and to share this.

God bless and keep you.

thank you so much,i will write more soon,it gets worse and I am not just talking about the condition!!!

OK good. What part of the country do you live in?

north east england

Hi, my name is Linda, my cousin got the same thing and he almost died also. Stayed at Vanderbilt university for a long time. He is some better now but still in a wheelchair. It's been a few yrs. I myself have been thru quite a bit of health issues and I sometimes think that I may be getting that. My head feels like a pumpkin and my arms and legs get so heavy I don't feel like moving them. I've had a lot of strep infections in the past. Is that a cause for concern?

hi linda,so glad you wrote,so so sorry about your cousin.never ever underestimate this condition,for example look at the zika virus(I think that's how it is pronounced)as for yourself please take care,gbs is an auto immune condition so any illness could trigger it,try to boost your natural defences with fruit and vegtables and maybe some vitamins.i tried to write some more for the blog but I started crying!pretty pathetic a 62 year old man crying like a baby!!when I was totally paralysed I realised I needed to keep my mind name is Robert hedley...jiggle all the letters around and you have...Herbert odley,i have tried other peoples names without success.thanks again linda...bye for now rob/Herbert xxx

Poor you.. my other half developed gbs and spent 3 months in hospital and 3 months in rehab...he was not ventilated but completely paralysed in the legs... had to learn to walk again.... He did OK but 3 months ago his legs went again.. we hated the hospital and itu so much I nursed him myself at home.. Thankfully he is now back on his feet with crutches... Much love to you and our deepest sympathy to you at this awful time.. You know you WILL get better ***HUGS***

thank you,i am writing this with tears in my eyes!

Hi Toby1428, I hope you are feeling a little better since your last post, at least a little less upset. I rarely post replies but your story is so close to my own I felt compelled to send you my best wishes. I spent four months in three different ICU's and had a tracky, catheter and was fed through my nose and was paralysed to name a few of my problems. All after getting Legionnaires disease. I had very traumatic experiences in ICU and the cleaning and taking away of the dead was one of the worst. especially the way the deceased were spoken about. I constantly thought I was next. I was tortured by one of the nurses and one of the cleaners and one sister actually fondled me sexually. Apart from theses instances I had wonderful care from all the doctors and nurses that saved my life and took care of me. The main reason for me replying is to tell you that my Grandmother was with me constantly during this time, even though she had been dead for over ten years, makes you think. It's been a number of years since and I've put my life somewhat back together but the time in ICU often haunts my dreams. Kindest thoughts. S

dear spock 1,thank you for your note!at the moment I cannot write any more as it is making me even more depressed!my life at the moment is pretty bad,my legs are very weak and I am prone to falling,as well as a million other nearly came to a head last night when I sat with a box of amitriptilene and had some really dark be honest I do not want my wife jean to have to try and sort things out if I am gone,call me a coward,maybe that's what I am.

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