After ICU

[Sepsur]

I’ve been out of ICU about 18months - today has been a dropping day. It’s like my hand/brain forgets it’s holding anything. It’s periodic but quite marked when I get such a day, it’s much more than being clumsy. Other days I forget words or names of people or things. Other days I just forget, or rather, cannot retrieve how to do something routine and often simple and commonplace.?I’m 53, worked on sites most of my adult life and was unsure as to how to wire a 3 pin plug, the other day for instance. My cognitive processes are different post ICU. How is everyone else’s brain function after critical care?

[mikea101]

I resonate with what you’re saying, Sepsur. I was in Intensive Care in April/May 2016 after becoming ill with sepsis. Was in a coma for 10 days. My memory was profoundly affected but in seemingly contradictory ways: I can remember every single moment of the hallucinations I experienced but practically nothing of the weeks that followed on a regular ward or when I first came out of hospital. Thereafter, I’ve had good days and not so good; on the whole I would say my memory seems to be getting a little more reliable. Such a long process of recovery, isn’t it?

[Sepsur in reply to mikea101]

Whilst I feel back to a type of normal in so many ways, I realise I still have a long way to go. I came out of hospital just as the Olympics started - my first few weeks were spent watching that. During that time certain friends visited ( or so they tell me) I remember arranging to meet up with them but not the episode. In fact I spent the evening with a friend recently and commented that I was so glad that we had eventually met up. To which he replied, did I not remember spending a whole day with him? 10/12 days to recover from everyday in ICU - that puts me at around 900 to 1012 days, so I am about halfway.

[Tlrgrills]

I was in ICU for 11 days at the end of September beginning of October from pneumonia, sepsis and ARDS. I am 49. I am for the most part doing very well. However I too have been having memory issues which are directly caused by this experience.

I frequently forget names or words of things I should remember. It feels as though they are in a hat and I just can’t reach down far enough to pull them out. Also there is the fatigue. I’m fine in the morning but feel pretty immobile in the afternoon.

[Divyask in reply to Tlrgrills]

Did they put you on ecmo or what treatment is given to you

[Tlrgrills in reply to Divyask]

No ecmo.

[Sepsur in reply to Tlrgrills]

Don’t worry your stamina will pick up. I was unconscious in ICU for 57 days - same recipe of infection as you plus some & in ICU another 34 days. It takes between 10/14 days to recover from everyday you are in ICU. At first, getting dressed wore me out.

[Nawalsaleh]

Well ,you guys have been in the icu for long days, I have been there with my daughter and I have same memory problems.could be related to anxiety, sleepiness, sadness or untidepression medication , I’m not sure yet.

[Sepsur in reply to Nawalsaleh]

I agree, the medication takes months to leave your system & I hadn’t thought that trauma might affect memory. You reminded me that I didn’t sleep for 3 days after eventually waking from 2 month coma - I was so wired!!🤣🤣🤣. I think I was concerned that if I closed my eyes - ‘all this world would disappear’!!

[stevet11753]

My ICU experience was over two and a half years ago now. I feel that I'm much more clumsy than I was and have problems gripping things, especially with my left hand. It's particularly acute when I first get out of bed, when I can't even operate a light switch. I've read on here that this is probably due to ulnar nerve damage caused while lying immobile for such a long time in ICU.

I also have problems with my balance and tend to meander about when out walking. It's particularly difficult for me if there are lots of people about; the movement is disorienting. I'm on medication for this but it doesn't seem to make much difference!

My memory is flaky and I forget names and words. One occasion I couldn't remember the word for sausage! It's important for me to stick to routines so that I don't forget to do things, like taking my medications.

I'm 64 so some of this could be put down to age, but I don't think so, compared to other people my age I'm definitely below par!

[Luckyone]

I'm now 7 years on from my 3 months in ICU and although things have improved my memory is not what it was before my admission, especially when it comes to figures which were an everyday thing working as a carpenter/joiner for over 36 years and running my own bespoke joinery company for over 20 years, but damage to my lungs & ulnar nerve entrapment finished my working career at 52 which led to some very dark days, and not noticed by me the memory problems which my wife picked up on and led me to having 5 hourly sessions of cognitive tests with some devastating results with the only above average result being my communication skills, with my short term memory well below average, I still find being anywhere with a lot of background noise difficult to concentrate on a conversation, I had 2 operations on my elbows to release the trapped ulnar nerves and although the operations were successful the nerves suffered permanent damage due to being trapped for over a year and if I try gripping anything for to long they tend to lock up, I know things will never improve now and accept I'm incredibly lucky to have survive relatively unscathed thanks to the dedicated doctors & nurses that never gave up even when things looked pointless.

I wish you all well on your own journeys of recovery and remember we've all been through a traumatic experience and came out the other side, maybe not the same as before but we're survivors and member of a unique club that no one would want to join.

Bill

[Sepsur in reply to Luckyone]

🤣 yes an exclusive club with an exorbitant membership fee 🤣🤣

[Lou26]

Keep marching on!

Peeps look at you and say "are you better now?"

Where do you start?

Frustration isn't the word

[Luckyone in reply to Lou26]

It's the way people (some family members included) assume you survived so you must be the person you were before, I've met many survivors but very few are the person they once were, most are left with some psychological scars, PTSD, Post Sepsis Syndrome & many other problems but because you have no physical scars, people assume as you say "better now" I would never wish an ICU experience of nightmares and hallucinations on anyone but if they would just show some empathy towards survivors it would be a start.

[Sepsur in reply to Luckyone]

People are too wrapped up with how badly ‘done to’ they are to have empathy for someone without scars - they don’t have it for people who are obviously maimed, what chance is there?

[CarbonDioxideExhaler]

you need to keep doing things so the brain can rewire itself…