Neuropathy

Hi in October 2015 my neighbour realised my silhouette had been in the same place in bathroom window i had been in a article shock coma on the toilet for 2 days which has caused grade 4 pressure sores the one on my left thigh still refuses to heal i am awaiting plastic surgery to have a flap to close it the nurses come 3 times a week to dress it i know it is illogical but i am angry and blame myself for sitting on toilet for so long i know i was in a coma etc and couldn't do anything about it and if it had happened anywhere else in flat wouldn't of been found but what normal person sits on a look for 2 days when i got hospital it was touch and go i was dehydrated but drowning i had rhambolitis or however u spell it and don't know what this means just something about organ failure and it is one of those warnings put on my notes cos had it once in danger of it again i presume i was in a coma for a further 8 days in ICU induced but notes just day i was hot had blood transfusions i had been taken to a different hospital as no ICU beds at mine i remember one day slipping in and out of consciousness and being told in hospital but reading my very scant diary that was on my 8 the day in ICU but it is so clear to me even now i got really bad cdiff so had to be in isolation i was transferred back to my own hospital but was in hdu isolation at some stage i realised my legs waist down was not working i couldn't feel them or know which way they were facing or how many had i begged for someone to just let me put my feet on floor 2 physiology came i put my feet on floor couldn't feel them let alone stand on them i cried i learned i had critical care neuropathy which now has been diagnosed as polyneuropathy axonal in nature i went to rehab to learn to walk i walk with a trolly indoors but i use a electric wheelchair when go out it is progressing rapidly now since Christmas but i have adapted to it but just can't forgive myself for sitting on look maybe once had operation and it's healed can move on it is only now i have become aware of things that happened to some extent but only offered a follow up for ICU outpatients a month or so when out of hospital i was just so grateful be alive and still am but as i am under a neurologist now and have had a battery of tests and a referral to a neuropathy specialist that i am learning new things about my diagnosis and what happened but i am left with the neuropathy i am left with big flag about antibiotics had cdiff 3 more times since and another surgery looming already had 2 on same leg i also have to wear calipers due to severe drop foot had to move flats cos was on first floor now on ground floor i have lost friends some family who can't understand i went to rehab so should magically be better but i have discovered a new me who i like i am mischievous bubbly and adventurous now and i like the new me i get down days but not those deep in a dark pit days i use to get before so what has not been a nice experience has been turned into a positive experience and i have met and made some really good friends and found my faith again which for me has been a great comfort big hugs to everyone

4 Replies

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  • I am sorry you had such a hard time

  • You've really been through it, but such a vigilant neighbour! I also have problems with neuropathy. I had it in my hands and feet before my long stay in hospital, but it is worse since, especially in my left hand, which is almost useless when I first get out of bed. Anyway, I'm glad life is so much better for you now. Best wishes.

  • What type of neuropathy do u have and r u diabetic i am just so grateful that for now i only get the odd twinges and cramp in my hand but they do get extremely itchy and i am beginning to drop things but i can cope if it stays like that ur legs u can go in a wheelchair but it hands well u need them for everything i really feel for u

  • People say i have been through it but i cant connect with it i was talking to a friend yesterday we went on holiday together last week and got a twin room this is second time we have been away she often stays at mine and i stay at hers and we were talking about my sleeping and how i fight going sleep so much i end up zonking on edge of bed on toilet anywhere than in bed and we discussed it and realised it cos inside part of me is scared going sleep in case don't wake up when got sepsis wasn't even in the slightest aware i had a urine infection which is rare for me i normally know my body well now i cant trust myself i felt ill the other day all fluey and was so tired i went to sleep petrified and praying i would wake up in morning is this normal i think its a bit of PTSD so just have convince myself i am safe now if only it was that easy

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