Post ICU feelings.

[Sleepalotmore]

Does anyone else feel isolated after being seriously I'll on a ventilator, life support machine and a trachy? I was in an induced coma and put on ECMO in January 2020 for a month and previous to that ,on ventilator for week. Total of 7 weeks in icu and hospital for 3months. Then home 5 days before lockdown. I'm still finding it hard to come to terms with almost dying, and only the last month or so been having vivid flashbacks with things that I am only just remembering! Some of which are upsetting. I have unanswerable questions, why did I survive, why did my body fight for survival on what I'm told was my last chance and not before. Will i ever feel like my old self again? Why even now do I constantly feel tired so easily?

[Sepsur]

I felt ‘different’ until I spoke to other people who had been through ICU. Up until then I had no way of gauging what was a normal experience - the hospital ( once I dropped out of ICU) treated me like some exotic animal that they really had no idea how to treat - which only confirm my sense of being different & weird.Sometimes because of what I have been through since ICU, I question why I survived - there is always such conflict - my survival cost so many their peace of mind & my fragility still robs them of this.

[Sleepalotmore in reply to Sepsur]

Yes, I can relate to what you're saying! One minute I feel I should be back to how I used to be, but then I feel I'm underestimating what my close friends and family had to go through while I was oblivious!

[Gooddaysunshine]

It is hard at times. I am the first and so far only patient from my GP surgery to have been on ECMO, so they don't really know how to address the many post-ICU issues I have. (Although everyone means well).

Also when I am at hospital appointments and see new doctors or nurses there, it often means going through reciting my back history again, which sort of keeps it all alive.

I try not to chew things over too much as it will cause stress, but small things can trigger the memories off, a certain type of food that I was given in hospital, or a TV programme, even a certain shape of face mask.

I guess only people who have experienced long term ICU will fully understand. In my case it was three months with one month of that on ECMO.

[FamilyHistorian in reply to Gooddaysunshine]

My CBT gave me non avoidance strategies one of which allow me to watch hosptal and ambulance programs. Its something that works for me.

[Gooddaysunshine in reply to FamilyHistorian]

Thanks, it is actually not hospital or ambulance programmes that sets things off, it is random stuff that was on in the heart/lung recovery ward (s) while I was there.... could be anything from Bargain Hunt to Poirot

[Sleepalotmore in reply to Gooddaysunshine]

Much like me then! And yes, so many things trigger memories, sometimes it triggers things that I don't remember!

[Gooddaysunshine in reply to Sleepalotmore]

Yes, even the light shining on the wall in a certain way reminds me of the ICU ward in the afternoon etc.

[Rach2Sym]

I was in ICU with Covid-19 last year, intubated, but no trachy, let alone ECMO. I guess that our bodies are programmed to fight for survival, but the whole physical ICU experience with its very strong drugs messes with the mind and memory, which must make it very difficult to process things. Goodness knows what the body ‘thinks’ when it’s in a coma and undergoing ECMO. I understand that flashbacks often stem from life-threatening experiences that haven’t been processed; something which can be helped by counselling. Sixteen months on, I still have aftereffects: a sense of vulnerability and loss of confidence; I tire easily, and the fatigue triggers depression and anxiety; I’m generally more emotionally volatile; I was never particularly gregarious, but I find myself less enthusiastic about socialising. I’m 74, male, retired and financially secure and, thankfully, none of these symptoms is seriously interfering with my life. I’m not ‘my old self’ and am not sure that I will be again. I don’t want that to sound pessimistic, rather an acknowledgement that a life-threatening experience might be expected to be life-changing.

[FamilyHistorian in reply to Rach2Sym]

Im a 73 old male and couldn't agree more. I had a course of CBT (10 sessions) which helped me a lot but yes I have changed I get anxious and never know when depression is going to kick in although at the moment I can usually get out of it in less than a day.

[Sleepalotmore in reply to Rach2Sym]

Yes, I get what your saying. I feel I should and want to be how I used to be, but feel disappointed when i feel i will never be that way again. I'm not me anymore. But obviously,I'm so grateful to be alive.

[Tedsdad in reply to Sleepalotmore]

What I found difficult was that the op that led to the blood clot that caused all the problems was elective. Well I had an aneurysm that might have lasted for years or coukd have killed me in seconds. So I went in and ran up the stairs, months later came out on a wheelchair. So I always had the feeling that in some ways this was self inflicted. I was in during lockdown so the only time I had any visitors was when my wife was called in to say good bye.And I remember nothing. I am not the me I was before but Ihave friends who are very patient. I have a couple of conducting engagements next year and I have promised to try to keep them. At least I can consider it now where months ago I just wanted to cancel. But there is only oneway to find out if I can still do it.

[Rach2Sym]

A PS from me. I don't know what your family or social circumstances are, but it must have been unusually problematic for you to arrive home from hospital at the beginning of the long and weird period of lockdown. I wouldn't underestimate how much more difficult that would have made things.

[FamilyHistorian]

I also came out mid March 2020 straight into lock down. I lived in another reality when in my coma. I can remember all the hallucinations in detain and I dont have problems with them. Thats not to say I don't have aother problems. Its good to talk to other that have been there.

[Edenderry]

Hi I'm in the same boat on trachea and ventilator for 2months Feb/march,I was only giving a hour to live at one stage they woke me from coma to say goodbye to my wife and 7children but I bounced back and shocked them all im having flash backs and nightmares of all sorts and even scared of helicopter sounds as they airlifted from my local hospital to another it's all to do with ICU and is common to have I'm still struggling with breeding and brain fog and fatigue but getting there slowly ,just feel like a walking zombie and as you say isolated some days ,hang on in there you will get through it all in time we are the lucky ones ,I wish you well regards Tony x

[Sleepalotmore in reply to Edenderry]

Thank you for your reply. I'm coping with the hallucinations, remember them in detail. Only one unnerves me still. That is one that I thought was a nightmare/hullicination, but turned out it was real and happened!! And we will all get through it, I'm determined to! We are, like you say, the lucky ones.

[Hidden]

I can sympathise. I was in ICU for a prolonged period initially 4 weeks and then 10weeks having caught covid on a general ward. In total I was 7 months in care. Yes some of the experiences can be haunting, but I have found focusing on the positives ie I am alive, and the great care I received has helped me reflect more calmly about last year.

[CLM68]

I still sometimes struggle and this is 6 years later...but that is OK. It was quite literally a life or death situation...I know that people near me in ICU died of the same illness I had (H1N1) and I still don't know how I survived but I will never know. I now just think of it as it wasn't my turn and my family were looking after me (from where ever they are). I gave up trying to find answers when there were none. I do still have flashbacks, especially at night or if I am very tired and sometimes sounds, smells or images can act as a trigger so all the TV coverage of COVID has been very difficult for me but the flashbacks are much, much less. I did have specific ICU counselling which helped, maybe see if that is available to you?

I felt tired for a long time and that is normal...it will get better.

I would say that I am 90-95% % back to being me, I have the physical scars preventing me from getting back to 100%.

The important thing to remember is that you are not alone!

[Sleepalotmore in reply to CLM68]

Thank you so much. It's very reassuring to learn that it's not just me over thinking or over analysing it all. And to learn that it's all normal and believe I will improve in time .

[Hidden]

Hi I was put on an induced coma over the Christmas period last year after catching covid 19

It was a scary time both me and my wife mainly her in my eyes as she was the one agreeing with all what the many doctors and nurses were asking

I am like you I struggle as no one knows how it really feels and they just say ok must of been bad time for you

I know they will never know

I struggle well did struggle with anger not physical just how said things etc

I still sit back and when see nhs on tv or I think I cry as I owe them so so so much

Again people don’t see what they do and it’s because they love making people happy and better again

I feel tired and mainly so so emotional now

[MikeA]

Hi Sleepalotmore

Coming at this like CLM68 - my ICU 'stay' (86 days plus time in ADU and on the general ward) was in 2012 and I just wanted to tell you (and the others) it WILL get better. It feels like forever ago to me now. I would say I wasn't the same for ~3 years, but over those 3 years the memories gradually started to fade, I got slowly stronger and life became more (not like before, but certainly closer to) 'normal'. The next couple I really felt like I was returning to my old self, and by 2020 (haha) it felt like my life was back where it would have been.

Everything you write about - flashbacks, anger, questioning - you went through an enormously difficult, rare, horrible experience. It takes time to heal, process and understand. You'll get there but it's a marathon not a sprint!

Best wishes

Mike

[Sleepalotmore in reply to MikeA]

Hi Mike, thank you so much for your response. It's very reassuring to know it's not just me overthinking things and dwelling on what happened. I long to get back to my old self. Its frustrating as I'm now in a very happy relationship and I want to be back to having fun and staying out late like I used to. Now, I'm tired all the time, ready for the duvet by 9pm! I used to think time having a lie in was time wasted. Now, I love to be in bed sleeping!

[ElleEmBee]

I was in ICU for 125 days and in hospital for total of 305 days. Got sepsis following cancer op. Nearly died. Put in coma then I got sepsis again, multiple brain bleeds, multiple organ failures, internal bleeding, a blood clot, a super bug and severe pressure sores. I had a trachy and ventilation too. Hair all fell out. Growing back curly and absolutely wild. Nails are atrocious. Can’t walk without frame and need carers. Been home five months. Learned do stairs a few months ago but still really exhausting. Got fairly bad peripheral neuropathy in both feet and sides of legs. Left hand pretty rubbish and has neuropathy too. I think the neuropathy affects me the most cos it’s just constant shifts between numbness and extreme pins and needles.

Got PTSD from ICU stay, all the dreams and experiences. Flashbacks in the daytime and nightmares at night. I have been able to get a psychologist through macmillan and that is really starting to help. Mostly I just sob down the phone( I can’t do face to face appointments as I can’t sit down long enough due to pressure sores). But he is helping me to go through my memories and break them down to try make Sense. I’ve also been back to ICU and spoke with a doctor there too. He could make sense of my nightmares I.e dreaming of being dead in a body bag could be when they put a plastic cover over my head when putting lines and dialysis lines in my neck; being held captive by a scientist could be my inability to move my body in the coma made me feel trapped and the mad scientist could just be the procedures they were doing to me that my unconscious brain could not understand. I found that visit helpful. I also got to visit my room and the ward which helped strip some of its terror in my nightmares and flashbacks away. I wonder if your hospital is able to provide you with something similar?