Need to vent, in 2 years I haven't been able to discuss this

[Kit10]

On 27 Jan 2021 I woke in ICU, after a long sequence of drug-induced coma-dreams. I was taken to A&E (ER) on 17th Jan having been found unconscious on the floor. I have no actual memories after about 6th Jan though I had written diary-like notes, do-list etc up to mid-morning on 14th Jan, which fits with the ICU doctor's approximation that I had been lying on the floor about 3 days. They say I was very cold, dehydrated and having seizures. They eventually decided the seizures were triggered by dehydration (though what I've read suggests trauma can also cause seizures.) There was a lot in my dreams about ice and hibernating animals. Why the ventilator was necessary I still don't understand. I only know that it took several attempts before I could breathe when they took me off it, though I must have been breathing before the ambulance came.

I will probably never remember what happened, and there is no-one who was there who knows, I can only imagine/guess.

It's possible that I was ill - I'd written about some symptoms I don't remember and can make no sense of, in particular, that if I turned the radio on, voices seemed to be gabbling. I was tested for everything under the sun in ICU but "no definite diagnosis was reached".

So maybe I passed out and was unconscious the whole time.

Or maybe I fell over and spent hours or days struggling to get up. That is not a pleasant thought. Sometimes if I try to do something that my muscles are too weak to achieve I go into a panic and end up sobbing and gasping for breath. Maybe that's a subconscious memory of that time, or maybe it's "just" frustration.

Maybe I knew I would die if I wasn't found - was I OK abut dying or desperate to be rescued? No memory at all. There was a lot about death and Hell in my dreams. I don't have any particular religious beliefs but it must have been on my mind. When I woke I thought the coma-dreams had been some kind of religious revelation. It was a long time before I discovered that I'd been given drugs that cause "ICU Delirium"

I'm told that the paramedics said if they'd been an hour later "the outcome would not have been good" which I understand to mean that I'd be dead.

Early in my dream sequence I fainted in some public toilets, fell backwards, and came round with people standing around me. maybe that was when the ambulance arrived - but I've been told I was found lying face down.

Soon after that in the dreams I was at the top of the stairs in my house with someone telling me to stick my tongue out, but it took ages because it was stuck inside my mouth. Was that the paramedics, or a dream? Then I was outside my house getting into a car with some neighbours, was that the ambulance? Except it was also the house I grew up in and one of the neighbours died a few years ago. That;s just the way dreams are.

Anyway I may have had a terrifying 3 days lying on the floor waiting to die, I did nearly die, then later there were a couple of times I woke up with alarms going off, an oxygen mask over my face and medics standing around me urging me to keep breathing, so I guess I nearly died 3 times over. I have no memories of anyone giving me any kind of reassurance or comfort during any of that, I just remember being very scared. I still have nightmares about finding people standing around my bed.

However awful it was, I'd rather die alone in the quiet and peace of my own home than in a hospital bed surrounded by bleeping noises and frantic strangers who don't even think to speak kindly.

I still don't know what I think happens when you die - oblivion? heaven? hell? reincarnation? Of course no-one knows for sure. I never had any of the classic tunnel-of-light or looking-down-on-myself experiences. A comforting belief would be nice.

[Sepsur]

some of the sedatives to put us in a coma can cause retrograde & anterograde amnesia - which helped me understand why I had patchy memory from before I was put in coma and why I struggled to problem solve after I woke from a coma

[Kit10 in reply to Sepsur]

I know that but I reckon - I have part-true memories that probably start when the ambulance arrived and throughout my time in ICU, but none for 10 days before that. It doesn't seem logical that the drugs could have wiped out memories from before when they were given but not all memories from after I was put on them. The first drugs were given by the paramedics to try to stop the seizures.

On the other hand, do the words "ICU" and "logical" even belong in the sane sentence?!

What I've found online is that extreme stress, situations in which fight and flight are both impossible, can cause a physical and psychological "freeze" mode that also can wipe memories. Getting stuck in freeze mode seems to be the cause of PTSD.

Actually I wonder whether people who take a long time to return to being responsive after withdrawal of sedatives are stuck in"freeze". I probably was in freeze mode for much of my time in ICU. One of the effects of freeze is shallow breathing Another reason why reassurance is important.

[Sepsur in reply to Kit10]

a friend of mine has a few months missing - this is before ICU -

[Tedsdad in reply to Kit10]

Kit I think you are absolutely right that logical and ICU are oxymoronic. I also wonder if accepting this is the key to a less troubled recovery. I have never really tried to make any sense of it though. Just accepted ir as a thing like quantum mechanics.I like things gto be logical but response ICU just isn’t.

[FamilyHistorian]

Hi Kit

Quite specifically I have no memory of 3 the month period leading up to being placed in a coma. There are a couple of exceptions to this which is difficult to explain. Even where I have been told about things and shown pictures I still can’t remember them. Once in the coma (3 years ago I was in that coma) I know nothing other than I can recall in detail my life in another reality.

Before the coma I have a vague memory of queueing in the A&E corridor and an episode of poor care. By this time apart from my heart problems apparently I caught pneumonia. I was sent home and after a few days readmitted. No memory then other than hearing the paramedics calling in with sepsis. I was subsequently transferred to another hospital.

The paramedics have since visited me at home and told me that the second time that they came I was hallucinating.

My reality during my coma is based over 300 years is very real and based on a number of themes and reinforced by alternative memory based facts. As a consequence I do have difficulty in identifying real memories. Not only that others don’t necessarily believe them if I tell them about one of my real memories that they didn’t know about.

As to my time in a coma I have my hospital notes which are very detailed and my family ran 2 WhatsApp groups. And on top of that I have photographs.

I have found talking about it (including writing) helps. I also had a course of CBT which amongst other things helped me understand why I felt the way I did about my loss of memory.

[Kit10]

What bugs me is not that I have lost memories (do I remember what I was doing between Jan 6 and Jan 17 2018? No,not a clue) but that I came close to death in such unpleasant ways and don't know how to think about it, and that I may have subconscious memories that come back to bite me but how do I deal with subconscious memories? And it really annoys me that it has been so difficult for me to get any relevant or useful help/support/advice. Anyone who has survived ICU has survived a brush with death but death is a subject even hospital chaplains seem reluctant to discuss. Why? It seems to be an unwritten rule that you are "supposed" to be grateful to be alive and that's the end of it. But it seems to me that there's so much more to say.

Yes, it's all existential and philosophical, but what's wrong with that? Is anyone apart from me up for a philosophical discussion of the meaning of life, death, etc?

[Tedsdad in reply to Kit10]

I too was told that I had died.

Which I suppose means that if no action had been taken that I would not be here now.

I also have no recall of anything from six weeks at the end of October until I came out of ICU in January. Apart from ICU ones that is.

I put this down to me already having put my life on hold before I went in for the operation and when it was cancelled for a few weeks there really was nothing worth remembering that happened.

As regards wanting post mortem certainties. Well I think we all want that whether we have had a meeting with the reaper or not. On learning what had happened my initial response was to be grateful that I had saved my family a lot of fuss and inconvenience by still being alive.

As regards being grateful and feeling the need to lay someone back and lead better life. I think many of us have that urge I certainly wanted to be a volunteer helper when I recovered but I had no idea about how long it was going to take for me to get to the stage where I can look after myself properly physically emotionally and mentally. And by the time I had reached that stage I had realised that there were many other things that. I could do where I could make lives better for other people that used my own skill sets on a pro bona basis.

One of which I think is staying in this page and trying to reassure folks who are still coming through it.

Surviving ICU does certainly not make you an expert on it. Everyone has a different experience, different reactions to those experiences and relations who respond in different ways. But having been through it you can’t ungo through it. And it is so much easier for a new person whose come out from the other end to communicate with someone who has been through it as well.

Of course this doesn’t mean that staying around here is a way of justifying our existence but you are very unlikely to wake up and think” I have just discovered a cure for Cancer” and the realistic attitude is just be more aware of the small acts of kindness and consideration that we can perform and know that if we were not here these acts woukd not have been performed.

[Hidden in reply to Tedsdad]

I read somewhere, possibly on this site, that if 70% of those admitted to ICU were not admitted to ICU they would pass.ICU saved my life for sure.

I think there is quite a bit of watch and wait to see how the patient responds to treatment.

Recovery is different for everyone and it is clear that aftercare varies from region to region. I cannot complain at all.

I can look back on some "carry on matron" moments with the ICU team in my 14 weeks, but by and large they were very caring.

ICU is not a hotel, and by its nature is prity extreme. Unless people have experienced it they generally dont understand what patients have been through........

[Nicedymous]

I understand and empathise with your situation, I have been there and remain there. I would suggest therapy but my appointment eight months away!!! So no joy there. This forum is good and there are others out there. Try and find one that meets your needs of PICS. Best wishes.

[Lux95]

I would be happy to talk more on the philosophical side - offline if that would be best. I agree with you - there is much more to say, and there is hope beyond just managing or living with the after effects and memory loss.

I don't remember anything from the week before I went into the ER, several days there, and then ICU until a few days after I was pulled off of sedation (already on trach at that point) - about 4 week total. I think the pre-trauma memory loss is our brain's miraculous way of blocking the path to the most traumatic events, not just the events themselves. It seems to me that the fictional reality our minds create is a way of dealing with the trauma, but also moving or overwriting the pathways to the real trauma as well.

There is hope. I know that for sure. I am Catholic, and I know the prayers of family, friends and our priest saved my life. Everyone in ICU said it was a miracle I survived. Death is not the end, and knowing that helps tremendously. One of my dreams in particular pointed to the spiritual battle we all face, whether we know it or not, as well as the two eternal options before us.

[Kit10 in reply to Lux95]

Hi.

If no-one else joins in I'll talk in PMs but I'll give it a couple of days.

I was brought up as Christian (Church of England) but lapsed years ago and I don't now have any religious beliefs.

Somewhere in my head is the idea that if you are saved from nearly dying you are under a particular obligation to do something worthwhile with the rest of your life, but I've been left barely able to do anything for myself never mind anyone else, so what am I supposed to do?

Some people seem to have very superficial ideas about what counts as meaningful activity. I've had people try to jolly me along by trying to tell me that a life spent watching "Countdown" and doing Wordsearch puzzles is a life worth living. Well excuse me for not agreeing. (No offence to Countdown, it's all good clean fun, and may be educational for children, but watching it is entertainment, not meaningful activity, IMHO)

I also read once that in some cultures (was it Japan?) if you save someone's life you are thought to be in some way responsible for what they do afterwards, which is an interesting idea but doesn't seem to have reached Europe.

I've tried to come on this forum to talk to other ICU survivors about their experiences, because everyone says that peer support groups are a Good Thing, but the more I do that the more I seem to find that what happened to me was not typical, and the changes I feel the urge to campaign about are all things that happen in other hospitals, or that are well known to be good things to do if only hospital staff had the time to actually do them, or wouldn't have helped anyone else because they were not in the same situation.

Some people have tried to tell me that it wasn't my time to die, there must be some cosmic Reason why I was Saved, but maybe it was my time, and then someone came and interfered. But I don't remember, so that thought goes nowhere.

Or maybe the whole of life is totally meaningless and nothing has any reason or purpose.

Am I really the only person to react to a brush with death by thinking these sort of things? Surely not? Or is it all a great big taboo area that the unwritten rules say we aren't supposed to mention?

[Sepsur in reply to Kit10]

Maybe this forum isn’t necessarily the best place for such a discussion because ultimately it is a resource for families in the early throws of the critical care journey and they are just desperate for their loved ones to survive or just want an explanation for why they are going through what they are.

I felt compelled to do something, I’m not religious nor am I materialistic or wealth driven. I helped set up a charity that helps others on this journey and beyond hospital, back into normal life. Alone, we achieve very little, only by clubbing together do we alter outcomes for people like us. We ( apart from everything else) run drop-ins weekly on line. There would be people there happy to discuss your quandaries mainly because they are some time from the event and not still caught up in the trenches.

cc-sn.org

[Mijmijkey74 in reply to Kit10]

In this comment you ask questions and ponder deeply is so alike to my own I'm shocked to actually discover someone with seemingly like minded thinking/thoughts. Your educational level though I can tell is beyond my own. Or should have been beyond my own if you were never encouraged further in that educational way when you should have been. I want to tell you that you saying you don't know why the ventilator was necessary I can answer that easily because I was told prior to being induced and intubated and remembered that the whole time. Simply to allow the body to rest, to not work so hard. Especially if breathing is impaired and a struggle and not enough oxygen is getting into the blood to oxygenate it. The body can rest then and heal without the battle of trying to breathe that brings to the body when breathing is restricted. You were found face down, paramedics will have turned you over into recovery position and checked your airway for obstructions and maybe it is then that you came around a little briefly to see them stood around you. I have huge chunks of my memory missing from before coma and after it. I find it upsetting and really struggle because most of my childhood memories memories are gone, along with memories of my only child as a baby/toddler/young boy/teenager. Yet I remember with almost crystal clarity what happened on the 17th Jan 2018 vile dispicable appalling mistreatment in A&E/Majors & Minors being laughed at and eyerolled at and the male triage nurse walking out making the crazy sign at his temples rolling his eyes laughing at and about me to nurses outside the cubical, him thinking I couldn't see what he was doing as he was walked off after telling me nothing wrong with me, all in my head, not to waste his time he had more important patients to deal with in cardiac arrest and not you to be go back to the hospital again. I was wearing a bat winged jumper that sat away from the body, and I am was extremely poorly, he put his stethoscope lightly on the outside of my very puffy away from body jumper not touching any part of my body and told me nothing wrong with my chest, he couldn't hear anything and then the rest of what I've already mentioned followed from him. l was critically ill, my body was shutting down slowly I was dying slowly but going to die soon if I didn't get treatment. He told me leave, he was nasty I hope he actually dies as if it weren't for his negligence I wouldn''t have end up dying on my hallway floor less than "I believe" 12 hours later having a massive asthma attack unable to breathe, going in and out of unconciousness, smashing my head into a door frame or the wall to try and stay awake as knew if I went completely unconcious I was alone and so critically poorly I was going to be dead. I was suffocating, it was like someone had a rope tight around my throat and a plastic bag over my head. I couldn't get oxygen in. If it weren't for that male triage nurses negligence I wouldn't on the 18th end up having to be intubated and ventilated in an induced coma not expected to survive I was so critical. My heart was doing over 200bpm, paramedics thought me having a heart attack/about to go into cardiac arrest, but you know what I walked out to that ambulance with a little help from them and I was dying. I'm very stubborn and independent. 3 days into my coma shock discovery found for doctors/icu nurses during chest xray or chest mri that they weren't expecting to find at all was biventricular heart failure. So I was one of that triage nurses cardiac patients after all, one whom had he treated and admitted the previous day most highly probably wouldn't have had their heart stop on them briefly and ended up having a massive asthma attack because of the heart failure and unknown infection/virus resulting in me needing to be intubated so I didn't die. All because of him not listening to my chest and heart choosing to mock me instead in the most evil vile cruel way. I had been told to go to hospital urged to go by 111 call back. So I went, that call back triage nurse she was extremely concerned that I went to A&E without fail. Everyone knew I was extremely poorly. Doctors weren't listening, I had been telling them I though it was a problem with my heart and not just my asthma flaring. I was right, they were shocked. My Mum was called in 2 or 3 times to say goodbye. .y dad unbeknownst to me in my coma was also extremely poorly but not an inpatient, nonetheless extremely poorly, Mum thought she was going to lose us both. My heart breaks for her as she was battling an undiagnosed detrimental illness herself at the time and in denial about it, we were all already very concerned for her. My son had only turned 13 on the a week and a bit before. He was a very young 13. My life is a living hell, full of heart break and devastion and serious struggle plus illness frequently now. My coma dreams weren't scary, hell started upon being abruptly woken being shaken vigorously and being insulted yet again. That time by an icu nurse. I woke furious with her, l heard her, tried and was in the process of breaking her fingers when I had a change of mind about doing so. She got the message though, she felt my fury, I was livid. She makes mention of her slip up in my hospital icu coma diary. I slipped back into my coma for a few days. Woke again not being shaken and thinking all that had happened just seconds before hand. That final awaking I awoke to icu nurses and others around my bed cheering, some jumping with joy, clapping all pleased I had woken up as really wasn't expected to survive. And then the hell started.

[Kit10 in reply to Mijmijkey74]

Sorry to be picky but I was once told how many lives could be saved if only everyone knew how to put an unconscious person into the recovery position, and it is NOT face up. Anyone in the world could be reading this, so here's the expert advice:

sja.org.uk/get-advice/first...

mijmijkey, I'm sorry you had such poor treatment. There is no excuse for any nurse who behaves in the way you describe.

You could be right, the paramedics might have turned me face up to do their checks and that might have half-woken me. I expect they put casualties on stretchers on their back rather than in the recovery position too.

You are right, I had a lot of education. One of the disadvantages of doing well at school is that you spend your childhood being expected to take on more responsibility, and have higher ambitions, than anyone else around you, even if you haven't just come close to death. Curing cancer and understanding quantum mechanics are almost expected ...😣

[Mijmijkey74 in reply to Kit10]

You are not the only one thinking all those things due to a brush with death. That I can assure you of. x

[Kit10]

"About ICUsteps

ICUsteps (the Intensive Care Unit Support Teams for Ex-Patients) was founded in 2005 by ex-patients, their relatives and ICU staff to support patients and their families through the long road to recovery from critical illness. "

Pardon me for misunderstanding and outstaying my welcome

[Sepsur in reply to Kit10]

you are not outstaying your welcome - I am in no way in a position to decide either way ( I am a fellow traveller) - my answer was in no way insulting or challenging - it was a suggestion & offering a safe space to continue your search & an explanation of why you might not get the answers here that you are looking forward. The emphasis is ‘might not’,

[Mijmijkey74 in reply to Kit10]

What makes you think you are out staying your welcome? I have long out stayed mine then. Neither of us have out stayed. x

[charliesdad]

There is definitely a spiritual element to all this. Thereby by the grace of god comes to mind. I found some time with a psychologist helped as I had what she called delayed processing, in other words everyone else had moved on and I hadn’t.

There are gaps in my memory for about 4 days before the ambulance arrived, and before this for several years is patchy, writing down all this here or in the case of my delirium, either here or in a good notebook helps.

As to the spiritual I have enjoyed visiting the odd church more, envisaging what it was like to build these magnificent buildings with little more than block and tackle.

[Kit10 in reply to charliesdad]

Unfortunately I have carers coming some time between 8 and 9 every day so a 7:30-9pm drop-in doesn't work for me. I've never used Zoom either but that's a problem that would be much easier to overcome - I mean, I'm tech savvy, how hard can it be?

It is not now and never has been my intention to offend or upset anyone, just to recover from the awful things that have happened to me. Sometimes I just need to sound off.

I have already said more than enough about how hard it is to get therapy in my area.

It is very noble of you, Sepsur, to run a charity like this. I would be afraid to do that for fear of getting stuck forever in telling my story over and over and never being able to move on and recover. I guess everyone is different.

It must also be very hard to balance the needs of families and ex-patients, who need similar factual information but are likely to find and use ICUSteps on different timescales and with different concerns, and different things they need to vent about. It would be all too easy to get into a pointless argument about whether it's worse for the patient or for the family, clearly it;s bad for both, in different ways. Some online forums split posts into different subject areas so people can chose to avoid subjects they might not want to see, but I guess the HU system doesn't work like that.

When I first found this forum I was in a hospital rehab unit- I think it;s pretty rare for anyone to be typing from a a hospital bed.

Writing my experiences and feelings is easier said than done because my manual dexterity has been adversely affected and I can't write as fast as I need to to keep up with my thoughts. My typing isn't great either, thank goodness for spellcheck!

[Sepsur in reply to Kit10]

I don’t feel stuck in my ‘story’ - probably because 2yrs of daily treatment for leukaemia have largely sponged what happened in ICU from my memory.

ICUsteps runs drop-in meetings- as we travel further down the line - the intention was that people naturally move from here to the meetings. I beli be that the intention of this forum is to gather medical insight and offer support right at the beginning- then signpost to care in the community. I found this forum in my early days and people like Debs made me smile when there was little to smile about.

I don’t know of any area in U.K. that provides immediate therapeutic treatments - I waited 8 hellish months, I had largely overcome the deep anxiety & confusion on my own BUT am still please I did the six allocated sessions. Maybe it is worth just getting on the list ….