Dealing with life after ICU

[HalfPint11]

I'm new here. Prior to my illness I was the one who always cared for others as I was never ill. My husband has had mental health issues throughout his life and so I have always had to be strong for him and many times have had to put my feelings to one side. My stay in ICU was the strangest experience but I don't feel like I can talk about it. I am reminded by my husband and my mother how stressful it was for them so I just keep quiet. My children who are young adults are both more understanding but they are both away from home now. When I first came home I was obviously recovering but now the physical problems are improving it feels like I am seen as OK now. Sometimes I feel like none of it ever happened. I did think about trying to write it all down. The weird dreams/hallucinations/the trauma of the treatment. Does anyone else have any good ways of releasing the jumble in their minds

[Sepsur]

Yes, I’ve attended a support group which enabled me to feel like my experience was normal and I wasn’t some special & different being.

cc-sn.org/drop-in-meetings

[Tedsdad]

I found the best way was to accept that what was there was there and that I am not there anymore. There really is no point in trying to explain it to anyone who has not experienced it although certainly in my case some of the experiences were as surreal as they were actually funny in retrospect. I don’t think that even between those of us who have experienced it that we can really understand each other’s experience but we can appreciate how real the experience seemed and still seems. I have spoken to one researcher who has told,me about some folks who have had total alternative lives on the other side. I didn’t get that far but I do sometimes think about some of the people I met and wonder what happened to them.I think what helped was that realising that some of these people were actually nurses who had come through the fog but my mind had interpreted what was happening in alternative ways. I am a year on and I don’t think I will ever forget the vivid reality of some episodes. I will say though that as I started to return to this world the nurses were superb in the way that Inwas not humoured but very gently persuaded that I had been in the same hospital all of the time. Don’t be afraid the episodes can’t hurt you now they are in a different if unforgettable place

[Hidden in reply to Tedsdad]

That so reflects my own experience.

[mikea101]

So much of what you say there resonates with how I felt after I came out of ICU. I was used to being strong for others and couldn't figure out what to do with all the thoughts and feelings that were rising up in me. Thankfully the hospital had a trauma therapist working onsite. I had six sessions with her, in which I talked and talked and cried and I cried. She helped me to understand what had happened to me, and especially to come to terms with the hallucinations I'd experienced, which were confusing and terrifying. After a few weeks with her I went back into the ICU and talked to the staff. I don't quite know why, but it was so helpful for me to see the room I'd been in and who had been looking after me. This was the most extraordinary thing that had ever happened to me, and I suspect you would say the same about your experience. Some things can't be borne alone, they need to be shared, either one to one or with a support group as Sepsur suggests. And this sharing is likely to be easier with people outside your family and friend circle.

[FamilyHistorian]

Hi HalfPint11. First of all we are all different and the experience of relatives etc is different from that of patients and both groups can be dismissive of one another (PvP, RvR, PvR)2 years ago I was still in a coma which began towards the end of Dec ‘19 and finished in Feb ‘20 and came out of hospital in March ‘20 straight into lockdown. I have lost 3 months memory prior to going in to icu, all of my hallucinations are clearly remembered (they were another reality) but don’t cause a problem, my personality has changed and physically I’m not back to normal, what ever that is.

Some people including ex patients and relatives said just get over it. Well that wasn’t for me. My family had been called in twice because I wasn’t expected to make it and only recently I found out that they had started to make funeral arrangements (apparently this isn’t uncommon)

For me talking about it makes a tremendous difference - forget the deniers!

I have some photographs of me in hospital. I didn’t have a icu diary but I have seen 2 records kept on what’s app by the family and I have also now read my hospital record.

I am trying to write down my reality.

I have had a course of 11 CBT sessions which have enabled me to develop coping strategies.

I have a safe place to go to ( in my head).

There was no community support when I came out and I started to go to a support group on zoom that provides drop ins exercise and relaxation classes (Critical Care Support Group)

[8SofMB]

I spent four and a half weeks Hospital, 9 days in ICU and 3 days in HDU, and have been busy during the intervening almost 6 years, almost recovering from meningococcal bacterial meningitis, sepsis and pneumonia. I was hallucinating very badly with the overwhelming infection and the medication I was on. It really is the most frightening experience imaginably. Although I somehow manage to record some dates and event at the time. I got a huge amount out of writing down all I could remember and researching about all that had happened during my recovery, initially just trying to make sense of it all, it really helped. This eventually turned into a book that I published at the end of 2020 it’s called Eight Seconds of MenB. Recovery once home is unfortunately a long haul.

Best Wishes

[ProfCarnage]

I've found that talking to someone dispassionate is a real help. I see a psychotherapist once a week to just get everything in my head out. I started it during early 2020 because I was struggling with shielding during first lockdown.

I've now had a couple of sessions post-ICU which has proven to be really helpful. I find that friends when I try to talk to them about stuff, they try to offer suggestions as to how to fix things. I don't need fixes, I just need someone to hear me.

[PeterJu]

hi

I have found the best way to help me navigate recovery is to know that I am not alone in my experience. people who have not been in ICU, regardless of whether they are your family or strangers, cannot really understand the experience. I run a zoom-based support group which meets fortnightly. it is great to meet up and share tips and experiences.

If you would like to join the group, please send me your email address via the direct message function on this platform, and I will send you full details. Other groups, like Sepsur's, do the same thing. Good luck in your recovery! Pete

[Hidden]

Hi. Your story is very familiar, and certainly a long stay in ICU can be a haunting experience, which others may not understand. I had bad delerium with quite vivid and often violent dreams, but once I came round and received support from my nurse, the delerium stopped. I took an anxiety tablet until I returned home. I know some ICU patients have more lasting effects such as ptsd. The main thing is to realise you are not unusual in having this experience, and there are many posts on this site that share the same experiences.

[Bardsley12]

Hi I am a year on from catching COVID and being in ICU in a coma for two weeks and I still can remember the nightmares, illousinations, I still lie in bed some nights and relive it like it was yesterday, I can still picture the people who were in my nightmares/dreams, I can still remember everything that happened and when I woke up I can remember asking questions because I was convinced it had all happened, like you said even though I’m slowly getting better and building myself up the mental side of it will never go away, unless you have actually suffered this horrible disease, people don know how bad it is, sending hugs to everyone who has unfortunately been through this xx

[qmcsurvivor in reply to Bardsley12]

I never really know what to call the time period delusions, dreams it was so real at the time and very common. Best wishes.

[HalfPint11]

Hi. Thank you all so much for taking the time to respond. Everything you have all said is so valuable to me and very much appreciated. I am just thinking through everything that has been suggested and will definitely be working through all the comments and suggestions and thinking about the best way to move forward.Thanks again xx

[qmcsurvivor]

I am the same in feeling that it never happened when I was taken off the ventilator and moved to a ward I asked if I had missed Christmas the nurse smiled and said 'yes' and New Year I was shocked, I wish you well.

[hospitalhopes]

Hi there,For me I felt very similar in that after returning home. I felt that my family and friends had such bad memories of when I was in ICU so that prevented me from talking too much about my experience as I didn't want to upset them and remind them of that time. My way of coping was block it all out, I felt numb to my emotions. However that coping mechanism helped me get through my whole ICU experience so I am grateful for that also. After a bit of time I found a great councilor/ talking therapist who helped me process my emotions on the journey. It was a great feeling to talk to someone who did not know me personally and had no emotional attachment. For me, I felt this really helps. You've got this xx

[CosworthRS500]

I think the best way is to talk about your experience to other people. Try not to focus on anything that may be disturbing. Some of my hallucinations were just ridiculous. Talking to "Ian Beale" in the next bed. It wasn't and I have never watched East Enders. A ward that looked like an old English pub, I don't drink.

[Hidden]

Hi HalfPint11

Check out icusteps.uk