I was in ICU last year for 10 days. Don't get me wrong, I'm happy to be alive and I am extremely grateful to the staff who got me through. I am however still affected by my stay. It's the first thing I see in my mind's eye when I wake up in the morning and the last thing I think about at night, as I fall asleep. I think about the Intensive Care Unit multiple times each day.
No one understands when I try and talk with them about it. Their feeling is that I'm out of there now and to put it behind me however I am unable to. I find myself getting emotional out of nowhere. The delusions were horrific and on occasion I find myself triggered back to that time.
It would be nice to hear from others who were patients in ICU and understand the situation I find myself in.
Thank you for sharing your experience. It does get better over time. I sought help via my GP who referred me to a psychologist, and started EMDR therapy.
I’m three years past my experience, I can’t say it’s totally gone but I’ve learnt strategies to manage.
Hi Gemeg and thanks for replying. I have an appointment booked to see a psychologist at the hospital who specialises in trauma relating to being in ICU. The sessions though are only 30 minutes, so not sure how helpful they will be. Time will tell. What is EMDR therapy?
it sounds like you may be suffering from PTSD, have a word with your GP or the ICU that you were in for some help. Trauma interrupts the brain’s process to store sequential memory hence that feeling that what you are recalling, only just happened.
I have a couple of episodes that I refuse my brain to go to, otherwise it’s like torture.
The point is that once the brain’s thinking is out of kilter it can’t seem to mend itself and we often need professional help to get it back in line. EMDR, DBT, CBT & talking therapies can help. There is a waiting list but if you can afford to pay, you are seen much quicker. I waited 5 months.
Hi Sepsur and thanks for replying. I have an appointment booked to see a psychologist at the hospital who specialises in trauma relating to being in ICU. I cannot afford to pay privately. It's not too bad really, I mean I'm alive and have a deep appreciation of that now whereas I tended to take my life for granted before going to ICU. Strange things though can set things off for me. A certain way someone moves for instance can trigger the hallucinations and all the fears come flooding back. Or a set of colours. It seems random at times.
Hey, you're not alone. I am too still affected after one month in intensive in 2019. I lost the muscle mass in my body and legs too. And also had EMDR therapy. I say the same thing that it is very difficult for friends and family to truly empathise, because unless you've had a significant threat to life, I think they are simply not able to understand. I'm 3 years on and things have got better and I feel more and more grateful to be alive every day. It has given me a good understanding of the fragility of life and to try and make every day count. I found doing things that bring me joy helped, along with a lot of reading to learn how to cope. Good luck. C.
Hi C and thanks for replying. I had a follow-up recently via another hospital. I agreed to being involved in a study pertaining to musculoskeletal issues/muscle loss while in ICU. We lose 2% of muscle mass per day while in there, so I lost around 20%. Quite scary actually. They have given me exercises to perform to regain muscles and make me stronger. That's going to help and it gives me something to work towards. I agree with regards doing what makes us happy, so it's gardening for me and nature watching. I have also taken up making field recordings of the bird life in my garden.
You are most definitely not alone. It has been a bit over a year for me, and most of the effects have decreased, but a few changes still remain. I'm sure things will improve for you as well - it does take time, so be patient with yourself.
Talking about it does help, and as others suggested, it may be most helpful to talk to a psychologist, or find other ICU survivors locally to talk with in person who can be more sympathetic. Family and friends just don't understand, nor can they. They may have seen us in the ICU, and experienced their own trauma, but it isn't even close to the same. This isn't an experience we can just walk away from and forget. Putting everything back into proper perspective, and learning to live with any psychological, cognitive, physical and personality changes takes a lot more time than I think we realize, until we talk with others who have been through a similar experience, such as on this forum.
Healing mentally can require as much time and patience as physical healing, and sometimes more.
I'm not certain that you can only talk usefully with someone who has experienced the same problem. What you need is a good listener - someone who doesn't tell you all about their own experiences but listens to and enquires about yours. That is what a counsellor might do. If you can't get a counsellor for any reason, find a good listener and/or try one of the charities such as Samaritans or MIND. Talking about your experience really helps - and keep talking about it (in the right contexts) until you don't need to talk about it any more. You'll find it helps your brain to sort all out.
I found that (with the encouragement of my counsellor) writing it all down - my feelings and experiences - helped me but I don't know whether that might help others. Try it an see!
Hi Lux95 and thanks for replying. I totally agree. People try to understand however my experience is that unless they have been in a similar situation they can't really know what we have been through.
My mum as an example was told to be prepared with regards to where I was health-wise and had many days where I was non-responsive and it must have been terrifying for her and I'm not going to minimise that however when I try and discuss things with her with regards where my head is at now I'm getting healthier, a blank look comes over her and I realise she doesn't have a clue.
I wish there was a way we could be put in touch with people locally who had been in ICU. There is a support group locally however there was no sense of the people there wanting to be in touch outside of the meetings which are every 3 months and for me, it wasn't enough plus the format was more a talk given to a gathering of people whereas I was hoping it would be a support network type of meeting.
Hi there. Have you come across the Critical Care Support Network? They are a charity who amongst lots of other things have a weekly Zoom meeting for people in your situation. It would be useful to drop them a line, their website is cc-sn.org
Good luck in your recovery, it does take time. Husband was also in ITU for 2 weeks last year and is still dealing with the various physical and emotional side effects.
hi. I think what you have said will resonate with many, if not all of us that have been in ICU. As others have siad, you should get professional help to deal with the flashbacks and maybe other things you are dealing with. I found the most effective way to do this was to contact the ICU outreach team at the hospital I was in. GP's did not seem to have the knowledge to refer me to the specific support I needed.
I run a post-ICU support group. We meet by Zoom fortnightly on a Wednesday. There are other similar groups too (CC-SN, ICU Steps). Knowing you are not alone and that your experience and ongoing challenges are not unique, whilst talking to people who have been, or are going through the same removes feelings of being misunderstood. If you want to know more I can email you details. To do this, I suggest you DM me privately on this platform. i will need your email.
Hi Pete and thanks for replying. Yes, I would like to find out more about the Zoom support group. I have contacted my GP and she's very pleasant however wasn't able to help with regards to my dealing with the trauma associated with my stay in ICU. I have contacted the ICU directly and they have given me an appointment at the hospital to discuss things with a psychologist and that's coming up in the next month or so but even then, it was quite a way off when it was arranged. I'm not ungrateful at all, I just feel I need something more immediate as some days something will happen and I am right back there again in my mind, feeling helpless and frankly terrified.
You are not alone. Post Intensive Care Syndrome (PICS) is very difficult to live with. I was unconscious in the ICU for 7 weeks. I had terrible nightmarish delirium hallucinations and almost died. That was 3 years ago and I still suffer from the effects of my stay. The best thing that helped me was joining a support group. There is an excellent one in the UK called Critical Care Support Network. There is also a separate support group for family and friends of patients to help them understand what you’re going through.
Hi ScabbleMe and thanks for replying. The hallucinations were terrible. I had 5 days of them and that was more than enough. I don't know how you coped with 7 weeks! When I finally came around, I felt that someone had taken what made me me, my consciousness and put that into another body. I was looking out of what I now know to be my own eyes but I no longer felt like me. I have distinctive shaped fingers and yet I looked at them for a full day and they seemed much smaller and a different shape and I thought someone had taken my body and put me in another one. It was very frightening.
My mum's face looked grey and waxen and I was convinced it was someone of a similar build to her but wearing a mask and that her and I were out there someplace living as ourselves while the person I was and who she was at the time were replacements in some ways. I couldn't make sense of ICU. I thought I had been imprisoned and was being kept against my will because any movement I made to go through the door to 'freedom' was taken away from me. Even though I now know where I was, I still feel the trauma of that experience acutely.
you are never going to get over it. It is such a big thing in the middle of anyones life. I suppose if anyone had repeated visits they would all merge into each either and become a sort of conglomerated normal. After two years I am coping with the fact that it happened much better. But coping with the fact and coping with what actually happened are two different things
. There are things that I have had to change in my life as a result. But I don’t feel regret about them. ICU happened it affected me I had to change.
There could have been other factors which could have meant that I would have to change. But I have never bothered to find out the details of what happened.When I regained proper consciousness after weeks of being out of it but only being aware of shady coming and goings mixed with a number of totalLy viable but alternative realities, I was given very wise advice by my surgeon and the battle through convalescence still in the middle of covid meant I was on my own as regards emotional resources. No complaints but acknowledging that something very odd and frightening happened is one thing and to some extent being defined by it is also inevitable. But as I have got physically better simply doing things has given me the chance not to be totally defined By it. But you can never forget it totally. Neither should you it is part of you whether you like it or not.
Hi Tedsdad and thanks for replying. I agree wholeheartedly. It is a part of my life and I don't want to negate that, I just wish it would recede a little as it's the first thing I think about in the morning and the last thing at night as well as dozens of times throughout the day. In some ways, I have not left at all. What makes it worse is that quite a few of the people who worked in ICU during my stay have left the NHS altogether, so I will never see them again. I want to meet them, hug them, tell them how important they are to me and thank them from the bottom of my heart and I know now that I won't be able to and that is setting back my recovery.
I can identify with that need to say thank you to. I wanted to do that I also wanted to go and work as a volunteer porter in the ward that I was in in the West Indies,
But of course I was never in the West Indies and the ward that I had invented for myself didn’t exist. And down to Covid it was not really encouraged for patients to have anything further to do with where they had been. I think if I had really insisted they may have allowed it but I cam to think that really as long as I was genuinely grateful and made sure that the follow up people did get the message to pass on it was probably the best for all involved. But I had to be sure in my own mind that was a real awareness of the situation rather than just laziness that stopped me doing anymore.
One little incident was that when I went in for a check up after 6 months they said that I looked so well that they wanted to take my photo for the cover of a staff magazine for morale boosting purposes. This could have kidology but I don’t think so. No one ever indulged in any BS while I was in there.
Time will help,as will being busy in other areas and also think about passing on the goodwill in areas which you normally operate. I realised that as much as I liked the idea of helping in a hospital they were too far away from my home for it ti be practical and they really did not need anyone incompetent getting in their way using them as personal therapy.
But in a spirit of what comes around goes around there were many things I could do in small ways that I may not have done before my experience and I hope that a spirit of gentle wisdom may have been encouraged. One that not only helps other people but allows me to live with “survivor guilt” Which is something I suspect that a number of us can identify with and need to work through. Although never having had any formal psychological help I may be barking up the wrong tree.
Hi I know exactly how your feeling FenderSquier your not on your own, I came out in October yet every single day I keep thinking about my time in ICU , I don’t know if you feel like me you try not to talk about it to your family because you sometimes get the impression they may be getting bored of the same conversation, I have joined an online group called CC-SN, there’s so many people that are going through the same as us and they do zoom meetings , I would highly recommend it
Hi Grooming and thanks for replying. Yes, I am thinking about it a lot of the time too. I will find out about that online meeting. It will be nice to chat and support others who have been through similar experiences.
Hi The reaction from others is very common, the perception they have is that like an operation you come round you might be in pain or find things difficult but that fades.
I try and find a positive warm thing to get me going in the evening and then to go off to sleep in mind. But getting a referral as you have done is great.
It will ease and you will find strategies that work for you, two years in and I often do through what was wrong with me, the thoughts will pass and they are only thoughts as my psychologist said, allow them to come and go.
I totally get what you are saying. I'm just home from 16 days in hospital and 8 of those intubated and on a ventilator in ICU. I can't concentrate on anything, feel lost lonely and and so not myself.
Hi guys, i was intubated backnin dec 2020, i still have flashbacks, now a lot less. And still feel confusion and struggle to co.r to terms in my mind what happened, counciling has taught me that its takes aome a lot of time for your brain to fill in the 10 days i was intubated, it essentially has to come to terms with how its never going to figure out where i was for the period, or make something up(this is why some people have vivid dreams etc).
I found that around the first anniversary of it i went downhill fast and struggled mentally with wierd thoughts and feeling very down, it wasnt untill the councillors pointed out the date and said it was very common and normal to experience it, the second anniversary was fine thank god.
So be prepared for a long period of recovery, physically and mentally, understand its normal, and if your struggling talk to somebody.
Personally i dont think ill ever really get over whats happened, but hopefully will get to a point where my brain accepts things and kind of puts things to rest.
Ive suffered since with ptsd, flashbacks, very vivid dreams, struggled with deep sleep(still ongoing) stomach issues, possible hernia issues
As you'll have noticed by reading this thread, you are very much not alone. And we're just a handful of people who participate in an internet forum. There are so many others out there.
We're all different. We had different experiences and of course we have different minds. Different things will work for us.
I also found that some of my friends and family seemed uncomfortable or unwilling to talk about it. That's fine. It doesn't mean they don't care. They just don't quite get it. I found that some of my closest friends were no help, but others really were. My daughter is one of the most caring, but she nearly lost her dad. I don't talk to her about the details because she's only 8, poor thing.
One of my friends has been through intensive care. He had a much worse experience than me: a car crash when he was 17 which landed him in hospital for an entire year, including 100 days in ICU. He had to deal with a morphine addiction as that was the only painkiller that worked. He was probably the only person who I could really open up to, to describe the detail of the stuff that had been going on in my head. Unlike others who would just think "that's crazy", he could really empathise.
What I am getting at is, what works for one person will not work for the next. I tried therapy and thought it was useless. I knew it was my problem, my mind and I had to work out what caused me to hallucinate the way I did. Some things were easy. Others weren't.
It sounds like you know what's going to work for you and it's probably going to be talking about it, either with people who have been through a similar experience, or with professionals. My personal feelings with the latter is they are well-versed in relaying what they learned through their education and professional careers (nothing wrong with that of course), but empathy was lacking.
Its called Post Intensive Care Syndrome (PICS). Its very real. Just reading your message triggers mine. There is a study at Vanderbilt University about it. More physcians need to know about it.
I’ve had a very similar experience and it’s extremely scary. Sometimes the trigger comes from nowhere! I’m so sorry your stay in icu is effecting your mental health.
My advice to you (if you haven’t already) would be to go to your gp and request some support, emdr is amazing for trauma however there is often a long waiting list, having someone you can talk to about the good the bad and the ugly is extremely helpful.
Also try to find a friend or family member that you feel comfortable talking to, sometimes all you need is a vent. I hope that helps!
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