I’m feeling really lonely in my normal life about what happened to me. The lack of acknowledgment is something that gets me down to this day (details in what happened in my profile).
People just expect you to get on with life and be fine. I’m in a much better place but it’s all still there and part of me. It happened during covid so no visitation, lockdowns etc so my nearest and dearest didn’t see the worst of it.
I’m just tired of living in a world where it’s expected I forget about and move on from the single most awful and terrifying things g that has ever happened to me.
I’ve shrunken myself and my true feelings and hide what I really feel at times.
Babbling a bit but does anyone feel the same?
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SurvivorPhoenix
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I was also in ICU during the Covid peak and as a Covid patient ventilated and want to say the feelings you have seem to be normal given the experiences we have been through, to this day I don't feel anyone understands that knows me beacause for them it was in hospital leading to discharge and no idea of what ICU was like as no visitors at all, they can only relate to what was shown on TV at that time and it is hard for us to realise that as well.
Sometimes especially for the first 9 months or so I wished I had passed away but now acceptance is kicking in. It is very isolating being an ICU patient as most people unless they have beeb there cannot even imagine it. I had bad delerium and they thought I was also getting post traumatic stress but I feel this is improving.
After discharge 18 months ago now I couldn't wath anything about Covid or ICU and nearly lost my life to it and I think in more normal time post ICU care was available, I see TV reports or fly on the wall documentries in ICU and still cannot beleive the person in that bed with tubes everywhere and unconscious was me and all my family were told on daily phone calls was critical but stable.
I am so amazed at the staff that got me through this although I cannot remember ICU staff I remember others and all brilliant including domestic staff stutents and porters and not biased even though I was an NHS front line worker.
Starting to waffle now so take care we here really do understand.
It is really tough but being able to speak here is better than not at all.
The staff were amazing, I wish I could see them again and just chat to them. Missed out in a few things that others in my icu support group got. This is either due to covid or the health boards we were under. E.g in person follow up clinic, a full debrief with consultant or daily diaries written by icu nurses.
I struggle to watch hospital related programmes too and anything that triggers my flashbacks, memories etc.
My therapist told me that trauma is even harder for people who go through it alone like our situation versus say a very open and public trauma that people can relate to.
In 2020 I was in ICU for 4 weeks with sepsis, then caught Covid on a general ward and was back in ICU for another 10 weeks. I agree it was a difficult time with the delerium. I was allowed a visitor once I was off the ventilator and then the trachy removed. The nursing staff were caring and the doctors kept me going. Like you it was touch and go.I was lucky and had 4 weeks rehab in a community hospital and then 4 weeks futher rehab in a care home before going home.
I still suffer fatigue and been left with permanent kidney damage.
I found getting my hospital notes helped me understand what happened to me, and filled two lever arch files so a long read.
I am not haunted by the experience and most are sympathetic but agree probably dont fully understand the ICU experience.
You survived, you survived a terrible ordeal & it takes some time to recover fully - sometimes mentally can take longer.By profession I'm a cardiac pefusionist - for the most part we are in cardiac theatre, from time to time in ICU.
Until covid.
Suddenly I, and many peers found ourselves spending most time in Covid ICU caring for ECMO patients.
Nothing prepared us for this - a haunting environment. Some patients conscious, many not
The fear in the conscious patients was palpable as they lay there watching on - no visitors, all alone.
For the most part, all patients saw of the medical teams were their eyes - everything else covered by protective gowns etc.
Rest for conscious patients was near impossible, surrounded by medical equipment beeping and sqwarking, alarms endlessly being triggered.
You have been through quite an ordeal, but got through it.
For those struggling to cope, try something new - a sport or hobby. It will serve as a good distraction, and there is a sense of satisfaction and accomplishment as you get better at it.
Be patient with yourself, many people struggle to cope and readjust after major medical incidents.
Never be shy or embarrassed to reach for help when you need it.
Being a survivor of loads in my life - this has been the most isolating period of my life, you certainly do find out who your friends ( & family). Many get illness fatigue and many are just completely insensitive - for me - life has changed and will never go back to how it was - on so many levels. I was hospitalised during the restrictions with Covid which was difficult although Covid didn’t send me to ICU - I was just stuck in a tiny room for 2 wks - very difficult times which were lessened for me by so therapy
I wonder if being a younger person makes this harder to bear.I don’t expect all that t much if the rest of my life anyway and as it was made quite clear to me that I had actually been in the position that all,vital signs had stopped, clinicalY dead and I needed to be brought back to life I was so aware of this that the awful experiences all seemed to pail into insignificance. I was in through covid the worst of covid not from covid though and the hospital got me out sooner than they should have done because they considered covid in the hospital was a bugger risk to me than not being in 24 hour supervision. and so never had a visitor but to be honest when I was so ill and out of it I don’t think I would have have noticed anyway.
I think being younger has meant that people expect me to bounce back and some probably didn’t take my near death experience as seriously because I’m ‘young and healthy’.
Mine wasn’t covid either but a ruptured tumour on my liver. It was all a shock and out of the blue. Just having my partner or mum there to hold my hand or have some chit chat with, would have really helped and helped with the acknowledgment side of things.
It also has been getting to me how differently people treat death and near death. When someone passes away, there is an outpouring of sadness and regrets or wishes etc. when someone nearly dies, people have the opportunity to treat that person the way they’d wished they would have if they had died. Instead, life goes in and almost as if nothing happened.
I agree that one could talk until doomsday about being in ICU and it would never get through to people unfortunately. With the covid visiting restrictions it meant a) a lonely and terrifying experience for patients, and b) a somewhat lack of insight amongst friends and family as they were unable to visit.I have had so many well-meaning "jokes" fired in my direction, about what I had been through with my covid coma and being on ECMO, that it is quite upsetting at times.
Even though I am a bit older than you, I still get the "are you better yet?" all the time.
People expect after (in my case) being home for 16 months I should be bounding around, and the life and soul of the party.
I actually look forward to my medical check-ups and psychologist chats, as they know what has happened, and how long it takes to recover from ICU, both physically and mentally.
You’re right and I think I’m going to have to face in to the fact that my family and friends are not going to be able to give me exactly what I need with some of this. Very hard to do that but maybe over time it will feel less painful.
The ICU experience is so far removed from anything closely related to everyday life, that it is very hard to describe it.That is why I think people struggle to understand.
Also, TV depictions have to tone things down - otherwise it would frighten viewers - so even the ICU that people think they know is not accurate.
I remember after my Covid near-death in ICU, being shocked at how low-key the government's TV advice films were regarding how bad things really were.
Being seriously ill we "see behind the screen" to the real terror, but relatives/friends do not.
I know exactly how you are feeling. I was in ICU in a diabetic coma, kidneys failing, pneumonia, everything wrong except I didn't have covid or cancer. I am a miracle from what my doctor said. BUT, I struggle everyday with overcoming the experience I went through. Life is not the same It has taken me 2 years of struggle and research to feel like I really am in this iife . I am blessed but have had no support from the hospital I was in. No direction and help to help me get on with my life. I look up everything I can about trauma, coma, PTSD on the computer to help me gain some insite into what I experience... Flashbacks, feeling alone and isolated, and on and on. This has helped to help myself. The therapist I go to is very limited in knowledge but is the only one I can afford. My husband is really the only one on a daily basis that helps me through my difficult times. Bless his heart. I saw something on a response here that to look up ICUSTEPS.ORG/SUPPORT this may help me and maybe you. Please don't give up and know that we are survivors and will be alright ....don't try and look to other to understand because I feel like it will only disappoint me. Just like everything else unless you have been there the other person can only just guess but not truly understand. I love this group because it helps me in many ways and one is to not feel alone and isolated. Let's go on as we can in our NEW life. That is what I tell myself.
Thank you for sharing your story and showing me some encouragement and support.
I have been going to an ICU steps support group for over a year now. It was amazing but this year it’s not been the same. Some people take over the sessions and it’s the same fee always talking or repeating. I wouldn’t mind if everyone got their space to talk but it’s very one sided and I leave there feeling drained and not heard.
I’m going a coaching course of my own and I e been in therapy for 18months. Both have made me become so aware of how others are and how people don’t truly or actively listen. It’s both a blessing and a curse to be so aware of these things now.
I’ve always been someone who has given my all to people in their dark times, I’m not getting the same back. I feel like screaming and saying “I nearly died!”.
In a weird way, it’s good to hear you all saying that others don’t really understands what ICU is like, I wondered if if was me.
I was reading back on all my text messages between my hubby and I and my Mum and I from my time in hospital. I down played everything and I don’t even know why because it was horrendous!
Going a bit feel here, but other types of trauma in my life and childhood have been completely normalised and I’m starting to think that I’ve (without intending to) normalised what happened to me. That’s not how I feel at all
Can I share some with you and maybe others? I looked up the VA health care PTSD National Center for PTSD Coping with Traumatic Stress Reactions. ...... PTSD: National Center for PTSD. a Ton of information . This was invaluable to me since I haven't found any real indepth help. Here is somethings that may help ... "It takes inordinate strength to wake up every morning and consciously step back into a world that has been shattered". Just try and remember YOU Are SURVIVOR. That's is something to be proud of so be kind to yourself and don't be so hard on yourself, You're still fabulous... from sick to a survivor. I few things I have read ... exercise, focus on good things. rest, counseling, low sugar foods, high anti-oxident foods , stay in the present, get up and get going, listen to music (music helps heal the brain), focus on good things, read your bible if that is what is important to you, see thoughts as passing clouds. Hope this helps others It has been helping me.
I think I must be lucky. My family have been superb, including my extended family. Of course, some of them I have not had a chance to speak to about the ICU experience but their concern about me being so dangerously ill was comforting to hear.
I did talk with my immediate family about my experiences, and some of the things I went through, or at least thought I had gone through. They of course could never really understand but they were certainly sympathetic.
I found that work colleagues varied; some were very sympathetic and quite interested to hear my stories. Others clearly didn't care, including HR who were appalling. I left that job as it had left me so bitter.
One person who helped loads was a friend of mine who had been through a lot worse than I did. He was involved in a car accident when he was a teenager and spent an entire year in hospital, including 100 days in ICU. He is so lucky to be alive and fully able-bodied, although he has a scar an inch deep up his back (seriously). He's very matter-of-fact about it, as it was so long ago (over 20 years) and we've spent nights in the pub talking through some of the mad stuff we'd made up in our heads. I didn't see him for a while after my incident and I'd forgotten that he'd been through it. I'd mostly dealt with things myself, but it was still nice to be able to talk to him about it, knowing that he had first-hand experience.
Most people who really are good friends do care. Some will struggle to express it, and some will struggle to empathise. In most cases there's a limit to what they can do to help, and it's not their fault. It's so easy to get down about things, and I for one still do, although I lead a busy life and that keeps me distracted. I do think that spending quality time with people does help though. Getting back to a normal life really is key. There's a balance between facing up to what you went through and dwelling on it. It's difficult to quantify.
I agree with what you have said, and fits my experience. I too think the best therapy is to try and get on with things without dwelling on the experience too much. That is not to say forget what happened as that would be impossible. I find going out , meeting friends works well.
My story is in my profile. But would say is firstly it’s not your problem it’s theirs!. One of the problems is that in the media world of films, which of course is real life, people come out of comas and are back to normal straight away. I had a course of CBT (not on the NHS) and that helped be to develop all sorts of strategies including having more compassion for myself.
I am in the same boat. Im 57, was in ICU for 15 days, 2 more weeks in hosoital. Its been 6 months since ive been home, back to work part time in the education field. I very often have nightmares of the ICU ward, delirium plays on my mind, feel very very lonely. Lucky i have days off as im still suffering of fatigue. My hair is slowly growing back, i used to have long luxurious hair but now its dry and thin. Gets me down at times. My attitude to my once pedantic attitude, i just dont care much about things.
I definitely have the same feelings! Although my extensive stay in icu on ECMO, ventilator etc was the December before covid hit. I was lucky enough to have visitors all the way through. But now I'm almost physically well, I still feel I'm alone with the way I feel about it all. Almost dying is a lot to get your head around! So many questions that I know there are no answers to are tough.Please don't feel alone. X
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