How are you managing stress and anxiety after ICU? Thanks!

[faithbased]

Is anyone dealing with stress and anxiety after leaving the ICU? How are you managing it? Thanks!

[Gooddaysunshine]

Interesting question. After near-covid death, I have been diagnosed with PTSD, anxiety, and “avoidance behaviours”. I have to constantly gauge situations, and who to interact with…or not.

I will no longer go in a supermarket, but have everything delivered now.

The thought of using public transport (even if I was physically able) terrifies me.

So my life is somewhat curtailed compared to previously, but I feel safer.

The ICU psychologist calls me once a month to chat, which is very useful.

And I was put on a 6-week CBT course, which has now ended, but has given me some mental tools to use.

I am not on any medication, as do not want to go down that route.

Finally, fresh air is great for both mood and damaged lungs.

[FamilyHistorian in reply to Gooddaysunshine]

Couldn’t agree more. I didn’t have support when I came out 2 years ago. I paid for my CBT and had 11 sessions which gave strategies. Only in the last few weeks have started to go out other than for “medical” appointments and masked up. 2 weeks ago I went to a cafe, M&S without a problem but I couldn’t stay in a busy card shop.I won’t go on more medication either

[FamilyHistorian]

More to the point is there anyone who is not suffering in some way. Rather than verbally explain have a look at this utube linkyoutu.be/g50VsYj90zM(Not working as expected?)

[Hidden in reply to FamilyHistorian]

Hi. Its clear that alot of ICU patients suffer PTSD . For me after a total of 14 weeks in ICU and 7 months in total in hospital care, the long lasting effects have been physical with ambulation issues, fatigue, ckd and type 2 diabetes. Although I suffered quite bad ICU delerium, this went once I had come round fully and was given an anxiety tablet for a few weeks after. Of course I think about my experience from time to time, but unlike others I am not haunted, I go out to restaurants and shops. It is a physical effort to do these things but not a mental challenge. I had alot of support from family and friends while in hospital, and went from ICU to a community hospital for physio and then to a care home for a further 4 weeks rehabilitation before going home. I also obtained my hospital notes, which filled in alot of the mystery of my time in ICU (I remember arriving in A&E, and not much more until I finally woke up in ICU). I did talk to the ICU psychologist once in hospital and once soon after coming home. I also did a research interview with ICUsteps, which did bring back a few memories of my experience in ICU. I tend to think how lucky I am to still be here, and will always be grateful to the Doctors and nurses in the ICU, as well as the team in the A&E. The follow up I have had with various scans and consultations for my ongoing physical issues has been faultless. Bless the NHS.

[Sepsur]

Are you still in hospital? - I found the drop down to normal wards really stressful especially when I was packed up and moved between wards at 2.30 in morning - it was the powerlessness

[Hidden in reply to Sepsur]

I guess we all have had different experiences, but I never felt I was being pushed around, and everything was done in my best interest. When I contracted Covid after I had been recovering in a general ward, I was moved initially to a respiratory ward. The consultant was very aware I had already had 4 weeks in ICU and asked me if I would mind if I was transfered back to ICU as they were better equiped to treat my covid. He made it clear it was my decision as he knew some patients never wanted a return to ICU. I chose to return as it was my best option, plus the ICU team had saved my life already so had every faith in them again. After 10 weeks I was moved to a general ward, but not until I was free from Covid, and then to a community hospital. As Covid was putting pressure on the hospitals, I was moved to a carehome, but my physio continued provided by another local community hospital. Its was perhaps a good rehabilitation to go the carehome for 4 weeks. It was almost like a 5* hotel, with really good food, ensuite rooms, and friendly staff and nurses. This was a good step before going home.

[Kit10 in reply to Sepsur]

The worst sressI had on being moved to a "normal" ward was that some of the staff responded to me buzzing for help by rather nastily telling me how many other patients they had on the ward and I'd had 1 to 1 care in icu but I'd been spoiled and I couldn't expect that sort of attention here. Sometimes they'd walk away before they even asked why I'd buzzed, and I never got a chance to tell them that actually I hadn't had 1 to 1 nursing, it was 2 to 1 and the nurse spent most of the time with the other one.

I was once moved between wards at about 2am, and between hospitals about midnight. Even when I was moved at a reasonable time it is very stressful to be put in an unfamiliar place full of strangers, and left alone, often having missed a meal. If only the staff took the time and trouble to give new patients a welcome chat, and check they are fed, watered and comfortable. It's not difficult surely? I mean, any responsible pet owner would do better. Every b and b landlady I've ever met can do it. They certainly automatically tell you when breakfast is.

One ward I was in had one new patient arriving at 2am then another at 5am. By morning id memorized all the dentia questionnaire!

I get the impression that the majority of hospital patients have some degree of dementia, and the staff have decided that they'll have forgotten anything they're told after 5 minutes so it doesn't matter what you say. Maybe that's cynical. Or maybe they need training in non-dementia awareness.

I've read online some advice for reducing the trauma of icu. It includes making sure patients get a good night's sleep. Maybe there is a parallel universe in which that happens, but it doesn't happen on this one,

Is there anyone reading this who has any influence over the way patients are treated?? Or am I shouting down a well?

I generally feel as if I've been treated like a lump of meat with no brain, no thoughts, no feelings. I totally understand anyone who feels pushed around. But I really wish there was a way to influence the System. The nurses probably don't do it on purpose, but is there any way to speak and be heard and change things for the better?

[Hidden in reply to Kit10]

Your experience sounds bad. Mine was the opposite , all the nursing staff were kind, some could be a bit bossy, but generally caring. I am starting to believe its a postcode lottery, from the varing experiences posted on this site.

[Kit10 in reply to Hidden]

Wow. I actually cant imagine what it would be like, to be surrounded by kindness in a hospital. There were kind ones, but usually only about one in ten, i am used to having to keep a low profile until shift change to avoid the nastier ones. Can you say more about what it's like, what they said and did? It might help if I could add some made up memories to the real ones.

Is it a postcode lottery? I live in a part of the country that has a reputation for bluntness, but what I experienced went beyond blunt. Perhaps there are regional differences in how easily or willingly overworked nurses can put on an act of kindness???

I've sometimes wondered whether my not having the local accent provokes hostility, but that hardly explains being treated with such insensitivity when I couldn't speak.

[Hidden in reply to Kit10]

I have written a number of posts about my 7 month stay in care including 14 weeks in ICU, so wont go through it all again. I did find getting my hospital records a help in filling in the blanks when critically ill with sepsis and then again with Covid.

[SurvivorPhoenix]

I was in ICU after near death with a liver tumour rupture that I didn’t even know was there. I was diagnosed with PTSD not long after I came out of hospital. A lot can tigger me even 18 months on.

I speak to a therapist every two weeks about anything, I tried EMDR therapy for my PTSD. I found it too intense and maybe the timing of it wasn’t right for me. Plus the therapist wanted to start from my childhood to present day to understand my trauma. It was exhausting and I wanted to focus on what had happened to me so I stopped that. I hope to try it again soon and be clear on my needs. I also go to ICU steps support group once a month. This has really helped me feel like I’m understood. I was in ICU/hospital during covid so I wasn’t allowed any visitors. This was one of the hardest things to deal with and my husband and family don’t fully get what I want through because they didn’t see it. So the group helps behave they know what I’m talking about.

Get as much help as possible and try out to see what works for you x

[Back_to_reality]

For me, people kept telling me I had PTSD. But after some thought I realised that I would need to deal with what was in my head. I wasn't suffering PTSD, because none of those things actually happened. Yes, I thought I had witnessed the deaths of many family members, including my kids, and I was destroying myself with guilt, but none of those things had actually happened, unlike people who have actually gone through PTSD and witnessed terrible things first-hand.

The fact that I had almost died myself didn't really bother me at the time; I just had to get things back to normal and explain away all of those things that weren't real.

The way I worked through it was like this. In reality every event you witness, no matter how mundane has a series of events leading up to it and after it. When you remember things, you forget the other stuff, but you're pretty relaxed that there was nothing strange going on.

Compare that with dreams and more to the point, nightmares. You can jump between thoughts without the logic of reality and sometimes those can be disturbing, because they don't make sense. The nightmares in the ICU are like that: you are seeing things in reality, but in your mind you are seeing things that are completely different, and your mind races away and creates something else, like in a dream. Often what it creates is disturbing or horrific.

For me, working those things out made a huge difference. Working out why I had those thoughts was the key. I won't say it has gone away completely though - I was in a situation the other week where I was with my brother and daughter and it was very similar to a situation I had made up where they both ended up being murdered. I was very on-edge, to the extent that I was watching people to see if they were suspicious. But of course, it was all OK, because I had made the whole thing up in the first place.

It's crazy, and of course, everyone is different, but my advice is to confront things, slowly but methodically. Take small steps, get out there and rebuild the real world in your head.

[Hidden in reply to Back_to_reality]

Yes the delerium is a prity bad experience. I had both times in ICU. I only stopped once my ICU nurse confirm I had been in hospital all the time and not in various places round the world. I also thought people had died, even myself. I remember most of the dreams now but am not haunted. I had an anxiety tablet for 3 months until I came home. I have done a ptsd questionaire and dont have ptsd. I spoke with an ICU phsycologist twice , once when in hospital and then when at home. Knowing it was a common experience helped and I was able to convince my next of kin I had not gone mad.......