I posted a few times a year ago. Since then, I spent 7 months in a rehab centre that was seriously disappointing, then the night before I was due to go home I had a stupid accident resulting in a broken leg, a 5th hospital, and I'm now in bed in another care home with a thigh length cast and have lost all hope of ever getting any sort of worthwhile life back.
The more I search Google for useful information and advice the more appalled I am about all the help and support I should have had to recover from icu physically and emotionally, but didn't.
I wish I had died before the ambulance came, instead of being condemned to this living hell with no end in sight.
I feel i ought to apologise for saying something so strong, but then i think, no, I'm not going to apologise, it's me that is owed the apology, big time, from all the people whose job it is to look after me who just pass the buck to each other round and round in circles. I feel like I've been passed around like a hot potato and just dumped and left to rot.
It was difficult enough before, trying to persuade physiotherapists to not write my problems off as ms but give me a chance to recover from the icu effect, but with a broken leg on top of that what hope have I of ever walking again? And I am STILL waiting for trauma therapy, which is unbelievable. All anyone does is assess me then pass me on, then every time I'm moved to another place I have to go back to square one.
And I still don't know, and probably never will, why I was unconscious on the floor in the first place.
I find it unbelievable that while I was in icu none even explained to me that I might be hallucinating, that I might be having strange dreams, or why sometimes I couldn't talk. And I'm appalled by how little kindness and reassurance anyone ever provided. I feel like I've been treated like a lump of meat with no thoughts or feelings.
If I physically could, the only thing that would stop me attempting suicide is the fear that it wouldn't work and I'd wake up in icu again and have to deal with it all again.
There, I've said it, and I'm not going to apologise or take it back.
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Kit10
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I am sorry to read your story and feel bad about your experience in ICU. I see Sepsur has given you a link, and hope you are able to get some help soon.
Hi KitThe standard of care not only varies between hospitals but also between wards in the same hospital.
Whilst in hospital I seem to remember being told that I had been hallucinating but I didn’t believe them and in my reality told them what I thought and complained. All not true. Nothing anyone said would have changed my mind.
I had problems with one of the clocks and I thought that a nurse had talked to me about it. I ordered my notes and in there I found that in the middle of the night the nurse recorded fitting my speaking valve, holding my hand and talking to me about the clock.
I was lucky as my wife visited every day and when I stepped down from icu she used to come in before visiting time and go home later in the evening. This meant she could spend an hour helping to wash etc and ensure I did my physio. I was eventually sent to my local hospital for rehab. That lasted arriving late at night day 1, assessment day 2 and being sent home day3. No this that and t other
Really I should have complained but when you are ill you just don’t have the energy!
I came out in March ‘20 and found ICUStepsChester now CC-SN in June. There I had the support of others who had been through the mill and a variety of exercise classes on on zoom AND it works.
BUT it takes a long time
My balance is “cr**” and had one bad fall and fractured a rib, not as far as you went 😂 but I didn’t (wouldn’t ) go to A&E
I paid for a course of CBT 11 sessions in the end and that gave me strategies to see me through.
That doesn’t mean I don’t get depressed but it enables me to cope.
I am so sorry. Unfortunately I know exactly how you feel. The same after care is the same in the US. I’m a little over four years out from almost a month long stay in the hospital with about half of that time in the ICU. I spent the first three years out searching tirelessly searching for help, not just physically but more important mentally mentally and emotionally. I’ve gone through four different psychiatrists and even tried group therapy. I just couldn’t understand why they would group me in with other people who’s trauma was caused by completely different circumstances. There was not anyone who was dealing with anything remotely close to what I went through. I spent a week in a coma and every minute of that time I experienced ICU delirium. I was completely disregarded and was told I should just be happy that I’m alive, why did I survive to live a life like this. I still have nightmares almost every night and like I said I’m more than four years out from my ordeal. The one positive thing about Covid is that a lot of these issues that we suffer from has finally been brought to the forefront. I truly understand exactly what you’re going through and the frustration that you feel because no one seems to understand and I also get that; you should be grateful to be alive. “Alive for what, this unbelievably horrible life that I still experience daily. No one believes me that I have some sort of brain damage from all this, not to mention the physical and emotional issues that I’m left with. I constantly wonder daily why am I still here, I really wish I would have died. Please do not feel you are alone in this. Even though there are thousands of miles away there are a lot of others out there suffering the same as you are. There are a few groups on Facebook that consists of people suffering just like you and I are. Feel free to reach out to me and I definitely would recommend checking out some of the groups. It really helps to talk to others that totally understand what you are going through.
Hi SharonThank you for that, it's good to know someone somewhere agrees with me. I think that's called Validation.
Even better than that would be someone who had some solutions. After all, if I was trapped down a well, and had to choose between someone with me who knew just how I feel, and someone up at the top with a rope ... no brainer, I'd take the rope.
Both would be good too, of course.
And I've said it before and I'll go on saying it... if so many people experience the same problems WHY DOESNT EVERYONE GET THE RELEVANT HELP AS STANDARD?? Not getting help would be easier to deal with if I really was the only person ever to have had the problem.
One good thing that happened, that I think helped a bit... an artist spent a week at the rehab care home I was in, painting a mural in a corridor. She involved as many residents and staff as possible. It was a tree with animals around it. She asked me for suggestions, so I told her about the hedgehogs in my icu dreams. She included some hedgehogs in the mural and got me to paint them (she helped, did the drawing and the fine details.) To turn my weird dreams into something concrete made me feel a little better.
Typing this, I'm wondering whether drawing other scenes from my dreams would help, but I don't know whether my drawing is adequate. I'm certainly no Edvard Munch! ("The Scream"). I think having a professional turn it into something good and pleasant was what made it helpful.
I have recurring dreams of waking to find people standing round my bed, sometimes touching or hurting me, sometime asking me nonsensical questions. It's not frightening so much as annoying. Trouble is having carers standing rou nd me is an everyday reality, so how can I stop flashbacks to ICU when the situation is ongoing?
I think the important thing to realise is that we're all human, we're all individual and we all have different minds. Our minds have been affected by the same drugs, but as far as I can tell, it's not the drugs that cause the hallucinations, but they allow our minds to cause the hallucinations.
There's a big difference and I think it's an important one. Some people go into ICU and have weird hallucinations that don't disturb them. In fact I did for a while. As I mentioned elsewhere I was in during the Euro 2020 finals (held in 2021 in the summer) and I think someone must have had it on the TV and were talking about 1966, because I then started hallucinating that I was in the 60s (I was born in 1975). Yes, I was at a football match, but then things started to go wrong and someone close to me was shot dead. And it all escalated from there.
I need to be careful here not to be patronising. I've mostly got over my experience, and I've mentioned this elsewhere. But I totally understand why others might not. Your experience will not be the same as mine. There will be similarities but none of us will have experienced the same thing.
I also hate to say it, but the best person to help is yourself. Again, this is my experience, partly led by my psychotic state where I was determined I must escape the hospital and the staff were punishing me. When reality started to return and I realised what had happened (mostly) I started to trust the staff, but was still a bit suspicious. I didn't want to show weakness because I felt they would keep me in the hospital. So I forced myself onto my feet as soon as I could. I got myself to the toilet as soon as I could. I convinced them I didn't need the catheter or the feeding tube. I was just so determined to get out, and when I did it was such a good feeling.
Once I was home though, it was flashback after flashback. I was afraid to go to sleep because I thought I would either die or go back into the dream. I kept myself awake until I passed out each night, but slowly it got better.
I think the cause of your illness probably makes a difference too. I had encephalitis which almost killed me, but went away fairly quickly. It was the ICU experience that had a worse long-term effect for me than the illness. Of course, this isn't going to be the same for everyone.
As others have said, the fact that no, you're not alone, may help. Talking through stuff might help, even if you're being totally negative and critical. Keeping it in is the worst thing to do.
It's tempting to blame the carers. I didn't because I was so desperate to get away from anything to do with it. But ultimately they don't know what you've been through or are going through. The rest of us here do, to some extent, but we're not all the same.
I agree that the drugs trigger the dreams and hallucination but the actual content depends on you individual experiences.
The icu dreams were not like normal dreams, that mostly evaporate as soon as I wake and are very fragmentary. They were much more memorable, and had plots and characters that were constant throughout.
Despite that I could dismiss them as just dreams. Weird, interesting, frightening, yes, but still just dreams.
What I find most traumatic is what really happened. I woke in a strange place, full of apparently cold hearted strangers, but left alone for hours on end, barely able to move or speak, my body full of tubes, with no memory of the last month, terrified, frustrated, helpless, having completely lost all privacy and dignity, occasionally surrounded by doctors in a panic urging me to keep breathing, alarms going off, .... who wouldn't be traumatised.???
The daily loss of privacy and dignity is still ongoing. So is the boredom. ( think boredom is a neglected issue in hospital.s Daytime tv has a certain novelty value but who wants to watch it all day every day for ever after?)
I still have no memory of what actually happened to cause the problem in the first place. I can only imagine. TV is full of programs about 999, ambulances, hospitals etc. I cant bear to watch them. They set me off wondering what happened when I was rushed off in an ambulance. Its feeling sorry for myself as though from a different person's point of view, which seems very strange.
My body bears the scars of many drips and the trachy. The catheter, the trachy and the lumber puncture that I'm told they did feel like violations. The tubes have all gone now but the physiological scars remain.
Yes I know it was all done with the best of intentions, but having holes made in you and tubes inserted in bodily orifices while you are drugged and didn't give informed consent is what it is.!
That's weird. For me, I knew there were the tubes going in when I was drugged but I couldn't explain it. It was then that I felt violated, and captive. When normality returned it was more of a nuisance to me than anything. Getting the catheter out was such a relief, but I knew by that point why it was there. After all it was better than sitting in a bed full of wee.
The physical scars of all the needles were there for a while. I spoke to the doctors about it, in particular those on my neck and my groin and they said the drugs have to be injected directly into arteries which is why they're not just into veins on your arm. Fair enough I thought. They've now healed and there's nothing to indicate they were there.
I'd forgotten about the lumber puncture to be honest. I was warned that it was going to be particularly painful so I was relieved when it wasn't as bad as I had worked myself up to expect.
I'm afraid you're never going to get 100% dignity in a hospital. They have to put tubes in you to keep you alive, and to collect the waste that comes out. It's a simple fact and there's not really any dignified way that that can be done. You just have to console yourself that what they are doing is something they do all the time and it's meaningless to them. It has to be, otherwise they would struggle to do their jobs. It may seem impersonal, but I think in this case it has to be and it's probably better that way.
I think because I felt violated when I was asleep made it better when I was out and recovering because I was able to explain it away and put it behind me. I hope you're eventually able to do the same.
As for boredom, when I came out of the ICU I was put in a room all on my own. I had contracted MRSA so they had to keep me isolated. The downside was there was no TV whatsoever and I was left alone with my thoughts, until my wife and brother turned up and gave me some books and magazines and a tablet, which I used to watch Wimbledon, which was on at the time. I never usually have the time to watch that and am not big into it in general but it did help pass the time. That and the Euros, which were still on.
To be honest, it was being out of the nightmare that kept me going.
I was probably aware of some of what happened while. I was drugged though I thought it was just dream until I got a summary of my notes.
I dreamt a CT scan, and an MRI scan (I've had both in the past while conscious) but in the dream it was a misunderstanding because they thought I didn't know what 3 meant.
I dreamt someone said they could give me painkillers but if I wanted "extra help" I had to consent to a trachy. (I have seen instructions for how to do an emergency trachy in the SAS survival handbook) .It's possible it really happened and they meant it was the only way they could keep me alive, but in my dream the extra help I'd asked for was paper and pen. When i woke up and found i really had a trachy i was outraged that they'd done that over pen and paper that I never got. If I did agree, that was NOT informed consent.
I had dreams about sometimes being able to speak and sometimes not, and it all depended on tubes across my chest. I thought that was all a dream until i saw pictures of people on a ventilator and the ribbed tubes were very familiar.
I was not aware of the catheter or the lumbar puncture or the drips. The tube stuck to my nose was, in my dreams, a microphone that was meant to help me speak.
In my dreams i was repeatedly told I was in intensive care. Maybe that was real.
It was very clear to me when I woke up properly and knew what was going on, but as I couldn't speak, and was asking for characters from my dreams, maybe the staff thought I was still out of it.
Did other people have any awareness of what was really happening? Is it common to dream that you are in hospital?
I knew I was in a hospital. I was actually in two different hospitals as they had to move me because the first one didn't have an MRI scanner that could take all the ICU tubes etc. and they couldn't take me off the machines. I wasn't in the hospital all the time (in my dreams) but mostly, yes I was. I was also trying to convince the staff that I wasn't supposed to be there and they had the wrong person.
When they were moving me I was most likely in the back of an ambulance. I have no recollection of that but I remember being pushed on a stretcher through hospital corridors. Of course, I thought I was being chased and the people pushing the stretcher were saving me from the people who were trying to get me.
Then I remember being in the second hospital, which looked mostly like the first, to me at least. I was in the basement, or at least I thought I was - I was actually on the 10th floor, but I could hear the traffic outside, including the ambulances, so I thought I was much nearer the road than I was.
Have you been back to the intensive care ward to speak to people and see where you were? I got to do that and it made a big difference for my recovery. I saw where I had been (some other poor sod was there) and saw the machines, plus the mundane things like the clock and the boxes of latex gloves which were doing all sorts of mental things when I was there. Oh, and the soap dispensers, which had had my kids' faces on them. If you've not done that, you should consider it. It might help, even to see that the staff weren't out to get you, or the imposters that you thought they were (or at least I did; I thought the original staff I'd managed to get on-side had been reprimanded and replaced).
It's interesting you thought you were in a basement, I thought I was somewhere dark and windowless. Actually in my dreams I was 9 levels down in an old slate mine!As time went on, the room I was in in my dreams gradually morphed into the real room, which had a window. They told me I had been in the same room all along.
I had dreams in which the hand sanitizer dispenser was a window that someone was watching me through.
Somebody did once invite me back to visit, but I don't think I want to,, of whether I could bear to, and it's been so long now I wouldn't expect anyone to remember me. I was there long enough after I woke up that I have a clear mental picture of it. At least I think I do, and if I found I was wrong I think that would make me more confused about what was real and I think I'd rather not have it all thrown up in the air again.
Like you, I wasnt in the hospital in all my dreams, sometimes I was outdoors, there was a mountain viewed from a boat, that i returned to 2 or 3 times.
Another reason I don't want to visit is, if I saw someone else having the same preventable bad experiences that I did despite the feedback I tried to give them I would feel really bad, frustrated, powerless ... I would rather give them the benefit of the doubt and think that they have made some changes.
I never thought the staff were out to get me but I did think they were uncaring and thoughtless, in the way that people get when they are overworked, underpaid, stressed out, burnt out, and caught up in a dysfunctional organisation.
I think you probably hit it on the head in the last paragraph to be honest. I don't really remember the staff in the ICU but in the recovery ward that I was in for a week I remember a lot of the staff seeming pretty overworked. I tried to bother them as little as I could. I got into trouble for going to the toilet by myself without calling for them. They were worried I was going to fall of course.
I could see that people were pretty stressed out though. I know fine well how little they are paid for what they do. Yes I know it was ultimately the doctors who saved my life, but I felt that everyone there contributed and I have a debt of gratitude to them all.
The other thing you have to remember when you're talking about impersonal staff is a large percentage of people who go into ICUs die in there. We're the lucky ones. A lot of people who work in places like that have to treat people as patients and nothing more. Dealing with people dying on you cannot be easy.
I have one or twice thought I should go back and apologise for ripping out my feeding tube and all of the needles. Yes, I had my reasons at the time, but it really must have been annoying for them.
I don't think you need to go back and apologise, you wee I'll and didn't know what was happening, they know that, it's part of their job to deal with it.
I mean, go visit if you want to, if it will help you, but don't think you need to feel an yobligation
I was kind of joking. Of course, they know it's part of the job. It's just not a job I would want to do. And yes, they can be impersonal. I would be, doing that job.
I did go back and visit. I couldn't go into the ward but I looked through the window. It was helpful to see the reality of where I was rather than what was still in my head. It might help you, it might not. Only you will know.
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