lostin
Active member
- Joined
- Jun 21, 2011
- Messages
- 63
- Reason
- PALS
- Diagnosis
- 09/2010
- Country
- th
- State
- phuket
- City
- patong
22-26Aug...been to hell and back this week.
no sleep since op for feeding tube 100 hours now
can't close right eye
see flashing light when do and have to open it
many other problems breathing can inhale through nose but exhaling struggle
salivated nonstop for hours filled my stomach with saliva
had general anaesthetic because pain
thought was having local but was thrashing around in pain from the hard table on neck and spine just being lifted onto table never saw a mask coming must have knocked me out instantly
woke up in icu gagging on tube down throat
doc put me because breathing problems
i stopped breathing for a while had to be revived
collapsed lungs i guess
only worked out this morning why no sleep after saying goodbye to surgeon
he too busy to come back to see me does not speak English much
got another doc said muscle damage to eyes can come in late stage of als couldn't get him to understand anymore too coincidental
frustrated because can't get anyone understand problems
couldn't use computer at all in room on bed whole time and tried many combinations but couldn't get enough movement in my hands on the mouse and no Internet so with not being able to speak i was totally cut off from the outside world
simple op for a PEG feeding tube with local anaesthetic became one with a general anaesthetic because i was thrashing around on the hard op table. woke up in icu gagging on tube down throat.
doc put me there because breathing problem.
i stopped breathing for a while had to be revived. wasn't gone long enough for me to see what was on the other side.
very loud gurgling sound i thought was air in my stomach and then a nurse rushing towards me. collapsed lungs i guess.
think the stopping sleeping and pain meds before the op then the icu trauma and no meds after it caused all the problems. don't think they wanted me to sleep because my breathing was bad.
one complication was uncontrollable salivating. As fast as i either dribbled it out or swallowed it it was replaced by another load and would go on for hours. my stomach filled up with saliva then I would start choking. it was horrible.
another and almost as bad as the icu incident since the op i couldn't close my right eye.
when open i see like someone has dropped a pebble in a pool and you see the ripples travelling out
when closed i get the flashing light and looks like my eye is bouncing up and down.
i went over 100 hours with NO sleep!
only when I got home and could take some xanax and painkillers and lie on a comfortable mattress and not have a nurse in every 15 minutes day and night could i finally sleep.
i can't believe how quickly i have gone down since noticing first symptom 18 months ago then being diagnosed 11 ago
not much of me left
my legs are like a cockbird and my arms a couple of twigs
my head rests on my left shoulder with my chin in my chest
only movement left is a little in my legs and shoulders and hands and i can turn my head to the left only
seen myself a few times in the mirror recently and it is a horrible sight seeing my shrivelled up scrawny body
looks like I've been in a POW Camp for a few years
friends must be shocked at my appearance but are very good at not showing it in front of me and come bounding in with a smile on
had the occasional witty remark like you have lost a bit of weight! ' but i can imagine what they are thinking
i guess my next challenge is to make it to my 55th birthday. ..HA HA in Thai! ...18 September but that's a long way away
my blog This_is_MY_life • View topic - This is MY life
no sleep since op for feeding tube 100 hours now
can't close right eye
see flashing light when do and have to open it
many other problems breathing can inhale through nose but exhaling struggle
salivated nonstop for hours filled my stomach with saliva
had general anaesthetic because pain
thought was having local but was thrashing around in pain from the hard table on neck and spine just being lifted onto table never saw a mask coming must have knocked me out instantly
woke up in icu gagging on tube down throat
doc put me because breathing problems
i stopped breathing for a while had to be revived
collapsed lungs i guess
only worked out this morning why no sleep after saying goodbye to surgeon
he too busy to come back to see me does not speak English much
got another doc said muscle damage to eyes can come in late stage of als couldn't get him to understand anymore too coincidental
frustrated because can't get anyone understand problems
couldn't use computer at all in room on bed whole time and tried many combinations but couldn't get enough movement in my hands on the mouse and no Internet so with not being able to speak i was totally cut off from the outside world
simple op for a PEG feeding tube with local anaesthetic became one with a general anaesthetic because i was thrashing around on the hard op table. woke up in icu gagging on tube down throat.
doc put me there because breathing problem.
i stopped breathing for a while had to be revived. wasn't gone long enough for me to see what was on the other side.
very loud gurgling sound i thought was air in my stomach and then a nurse rushing towards me. collapsed lungs i guess.
think the stopping sleeping and pain meds before the op then the icu trauma and no meds after it caused all the problems. don't think they wanted me to sleep because my breathing was bad.
one complication was uncontrollable salivating. As fast as i either dribbled it out or swallowed it it was replaced by another load and would go on for hours. my stomach filled up with saliva then I would start choking. it was horrible.
another and almost as bad as the icu incident since the op i couldn't close my right eye.
when open i see like someone has dropped a pebble in a pool and you see the ripples travelling out
when closed i get the flashing light and looks like my eye is bouncing up and down.
i went over 100 hours with NO sleep!
only when I got home and could take some xanax and painkillers and lie on a comfortable mattress and not have a nurse in every 15 minutes day and night could i finally sleep.
i can't believe how quickly i have gone down since noticing first symptom 18 months ago then being diagnosed 11 ago
not much of me left
my legs are like a cockbird and my arms a couple of twigs
my head rests on my left shoulder with my chin in my chest
only movement left is a little in my legs and shoulders and hands and i can turn my head to the left only
seen myself a few times in the mirror recently and it is a horrible sight seeing my shrivelled up scrawny body
looks like I've been in a POW Camp for a few years
friends must be shocked at my appearance but are very good at not showing it in front of me and come bounding in with a smile on
had the occasional witty remark like you have lost a bit of weight! ' but i can imagine what they are thinking
i guess my next challenge is to make it to my 55th birthday. ..HA HA in Thai! ...18 September but that's a long way away
my blog This_is_MY_life • View topic - This is MY life
