Experience: Fear, hallucinations and a mystery ... - ICUsteps

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Experience: Fear, hallucinations and a mystery ...

GingerCatJayne
GingerCatJayne

Hello everyone, my story is not recent, but the experience is still fresh in my mind. I am asthmatic, diabetic, and I have Interstitial lung disease (ILD). In January 2018, I contracted pneumonia and flu. One minute I was sitting on my sofa, with a vague recollection of looking at 2 paramedics telling me I should really go to hospital - but why I asked - I was fine (I wasn't). The next thing I woke up in ICU. Apparently, several days/week(?). I don't want to go on, its too long! I had been ventilated. The experience was terrifying - hallucinations, fears that the staff were trying to kill me, the staff had faces of people I knew (all part of the hallucinations). One experience still bothers me - one of the health care assistants spoke to me as if we were old friends. He treated me so well and later (I wanted to thank him) when I tried to find out who he was and where he was - no one knew who he was. There was no record of him anywhere. I nursed in hospitals over 20 years ago and so I know how things work. Anyway just thought I would give a quick intro to my experience. Feels very ghostly ...

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There are still smaller more incidental details from the delirium that I experienced in ICU that catch me out. I am now much less certain of the past before ICU ie what is a moment that really happened or what was an episode of ‘alternative reality’. Delirium wasn’t like a dream but it’s content was a thing of nightmares

Sepsur, yes, I can relate to that. At night, I was convinced the ceiling tiles enclosed little aliens watching me and that the staff were feeding me jellyfish! To this day ... I wonder.

🤣🤣

The ceiling vents are what threw me - I couldn’t understand why someone had stuck black tape on the ceiling resembling the petals of a flower ( the vent openings in shadow)

Hi

I found memory loss/real/unreal to be one of the biggest issues for me. During the early part of my recovery I couldn’t cope with the loss of memory before ICU. Some people said “get over it, it doesn’t matter” well it did to me. Since starting my course of CBT I have become more accepting as I understand the effect that the past has had on me. I am still discovering significant real memories. In many respects I am moving on.

I’m not bothered about no memory of ICU as I understand the cause. I think the difficult part of that is not knowing who cared for me / saved my life. I haven’t return to visit ICU but staff telling me they cared for me will be difficult.

Hallucinations are understandable ?????? Paradoxically I can’t tell what is true and what is not.

Day to day memory is unreliable!

Oh Family Historian, I remember waking and immediately asking where my small children and my cats were. It took me ages to work out - in fact, I had to be told that my children were now teenagers and my cats had died 10 years before. To this day, I don't know what happened in ICU, or the previous weeks prior to going there. Outreach suggested I should visit ICU to meet the staff who cared for me. I told him I would not ... even today the thought gives me palpitations and brings me out in a cold sweat. I have often considered hyponosis, but I am not brave enough.

One of the things I have learnt through my CBT is that I must care for my self (as in caring for others). You don’t have to be brave to try hypnosis- just have a go- if it’s not for you then don’t do it. I have used for relaxation. At 72 I find I am much more open to alternative (if that is the right word) practices.

Thank you

Hi, I saw your thoughts about returning to ICU for a visit. Like you, i had terrible hallucinations etc and didn't think i was brave enough. A contact persuaded me to go (under false pretences so i didn't have to think about it!). When I arrived i was pretty anxious, but going is the very best thing!

It was a bit like lancing a boil. A place that in my mind constituted terror and fear was really a calm place filled with incredible professionals. Things that only existed in my head have been replaced with everyday reality. There were also other aspects that I remembered that were entirely correct,

In short moving from a hazy, fear-based memory to reality has been entirely beneficial and i believe it has aided my recovery. I would recommend returning to anyone, as soon as you can safely do it in person of course.

I am now on the list to visit but it won’t be until after Easter so they are talking about group visits which I’m not so keen on!

I’m 73, and eight months on from Covid-19, ICU, ventilator etc, but now doing fine (I was training for a marathon when I became ill). I’m still piecing back together much of the whole experience, so what you say resonates. Memories of the week before admission remain a jumble of fragments. After admission, I have no memory of CPAP during three days on a covid ward prior to ICU and induced coma. Recovering several weeks later, I was puzzled to discover on my phone that I had been texting some friends. I have absolutely no recollection of anything from the ICU period until recovering in High Dependency, which was a storm of delirium, feeling myself to actually be in a whacky sequence of different places, distress, exaggerated memories, extreme discomfort, anger, fear, violent swearing, hitting out at nurses….! I couldn’t handle facetime calls with my family, but my wife’s voice on a phone held by a nurse telling me “You’ve been very ill” started to focus my mind, though at that point I had no idea of the lost weeks or what had been happening. I was then moved to a geriatric and palliative care ward, which was terrifying. I’d had enough, and for the first time in my life wished to die. A very experienced, salt of the earth, nurse gave me ‘a very good talking to’, explaining that this ward was the best and only place for me to be because of the intensive physiotherapy that it offered. She turned me round – a healing as dramatic as the miraculous medical procedures that my body had undergone – I wish I knew her name and could go back and tell her. So, I got on with things, and ten days later walked unaided up the eighty steps to my flat. I’m still bugged by minor physical and mental after effects, and it isn’t clear whether they stem from the damage caused by the virus or the inevitable collateral damage of ICU and intubation.

I don’t have any expertise other than my first-hand experience, so I’d be happy to hear expert medical comment on these thoughts. Covid-19 typically effects oxygen supply (also true in your case) to the whole body, all organs, particularly affecting the brain, causing disruption of memory processes. Additionally, for an ICU coma you are pickled in a range of the most powerful mind-altering drugs known to man, so no wonder there are long term effects. Add to that, whatever is going on in the mind during ICU (whatever ‘mind’ is and wherever it dwells in the body) it must somehow be aware of what the body is experiencing, but because of the drugs and life-threatening oxygen dips it can’t possibly assimilate things in what we might think of as a normal way. The jigsaw is thrown on the floor. I think each of us has our own jigsaw, and I suspect that we’re often trying to piece it back together without the guidance of a picture on the lid.

Rach2Sym,, sorry to hear you have had covid. I had to learn to walk and write again. My ILD has deteriorated, and my right leg is weaker. But yes, we were pumped with a cocktail of drugs. I am terrified of having to go in there again if I get sick again.

Woo2
Woo2 in reply to Rach2Sym

Thank you for a fabulous and lucid account Rach25ym.Your experiences and thoughts about them chime very strongly with my own.

Well done for fighting off Covid and coming through it.

Extra kudos for the eighty steps! I only had 14 to deal with when I got home and that was more than challenge enought!

@rach2sym What a fantastic analogy of the jigsaw and without the picture you don’t know if you have all the pieces let alone rebuilding the picture. There is plenty of medical expertise but when it come down to it you can’t beat what we have experienced and the power of the emotion it causes

It's also reasurring to have others to speak to. Thank you everyone xx

ICUsteps has a few online zoom meetings too. We do one weekly ( & other stuff) icustepschester.org 😊

I'll check it out thank you.

I also had a "ghostly" experience. I was in ICU for 9 or 10 weeks. One of my many hallucinations was of a strange vessel, half-island and half-boat, on which I was marooned.

A year or two later I was back in the hospital for a follow-up X-ray. I suddenly realised the X-ray room was painted in a cream colour that was familiar and felt very strange.

It was my "vessel".

Woo - that's interesting. I am convinced of my ghostly experience, too

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