I've been reading through your stories and things that have been shared for a while but have decided I need to speak up and ask a couple of things. The encouragement that comes from just knowing there are people who have walked some of my path is wonderful - thank you.
I was in ICU in July 2012 for over 3 weeks and ventilated for half of that. I have recovered extremely well considering where I was - I am left with disabilities of both my legs, and horrible fatigue, but otherwise I am further and better than anyone dared hope. Just walking is wonderful, and I am really thankful for the days now.
But, there is this box of delusional memory, that I rarely venture near, and there are a few bits that I've shared with family/friends that we laugh about now, but mostly its in this box. I went to my ITU follow up 2 weeks ago and even talking about its existence had me in uncontrollable floods of tears for 2 days - waking up crying, not wanting to sleep because of the dreams again, losing a bit of control over whether I was thinking about the delusions or reality.
The nurses that run the clinic have encouraged me that to talk about it will help it melt away, and saying it out loud will help me see that it doesn't have to hold me. I'm going back in a couple of weeks, on my own this time, because I feel somehow I don't want to put anything more on my partner, as its all been bad enough for him already.
But... going anywhere near it makes me an emotional wreck. Even a tiny bit of talking about it, or thinking about it. If I get chunks written down or talked about would it not be potentially completely out of control, full on PTSD which I'm assuming I don't have at the moment because I am largely in control of when I think about it, or if it is triggered I can settle it down. I'm scared - willing to take the risk - but I want to know this is safe.
Does anyone have experience that might help? Thank you for reading this far, for your time, and care.
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engraved
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I do understand how you feel, Being in ICU is horrible. Being on a ventilator is .....I can't think of a word to describe how dreadful. And the nightmares stay with you.
But I can honestly say talking about it has helped me a lot. It's difficult to talk to family, they get sick of hearing about it after a while, but this site is great, you can tell all your horrors, and be sure every one will understand.
It's difficult at first, because you'll be reliving everything, but each time you tell someone; it gets a little less painful. I'm so much better I can remember everything, but the memories don't take over my life anymore.
The delusions always seem to contain your secret fears, your greatest horrors. so just keep talking about them until they become ordinary, then they can't hurt you anymore. It worked for me.
I too was ventilated for several weeks in 2010, a tracheotomy too, trying to speak and can't was so frustrating, communicating on paper was awful but also funny with some of the things I wrote!! It is three years since I came home, I can still recall every dream, very very strange ones as everyone has, it did take a good two years for the dreams to stop appearing but they did,I can still recall every one but they have stopped appearing suddenly, my sleep pattern has altered but not a problem, like you I used to choke back emotion thinking about what had happened, not for me but for what my two sons went through, they had to deal with on their own as there father hasn't been here for over twenty years, I found my visit to Icu helped enormously, I managed to find out what happened, you will deal with all of this, it just takes time, fatigue I think is quite normal after Icu, I know everyone is different but it did take me over two years to 'recover' as such, you will feel better, just time... Good luck
Hi Engraved thank you for telling us where you are up to in your recovery journey. As Patworker and Mystery says that it is all a matter of time and how you can accept that. I have not been through ICU ...I am lucky. But I have lost my son Lee and this has had a traumatic pull on my life and the knock on effects with my love ones. I started a support group in memory of Lee and hear many many survivors/bereaved and families stories. There are many that do have PTSD and OCD after their medical emergencies and trauma. So please feel comforted that you are not alone. its accepting and getting the correct help that will help you. If you are able my charity is holding its first meeting for PTSD. Anxiety etc; on Saturday 4th May Birmingham 1 - 4pm. Venue is to be confirmed this weekend. If we can help you to understand about your thought's that will be a small step in the right direction. Keep smiling..
i wonder if this is what i went through when i was in ICU, can anyone get PTSD or is that only a military illness?, it sounds very similar but i was never told by the experts, what can cause it? my problem was put down to my epilepsy but i am thinking to myself they may have missed something, what drugs do you take for PTSD? I take keppra 250mg and tegretol 200mg, anyway i hope you are better now and back on your feet, all the best, walter
PTSD is most commonly associated with military service but it can be associated with any traumatic event be it military of civilian. In fact, relatives of intensive care patients can suffer from post traumatic stress as well link.springer.com/article/1.... It can be difficult (or more likely impossible) for us as patients to pick apart all the things we've gone through and have felt to be able identify which aspects were down to which particular clinical symptom.
I was in ICU + ventilator+ tracheotomy in late 2010. I'm sure for most people, including me, it's a highly traumatic experience - fundamentally, it's terrifying, knowing that your basic bodily functions are not working properly ( or not working at all) and being in pain. I think in this situation the mind is 'all over the place' especially as one's normal relationship between mind and body just doesn't apply any more. So it was very heartening to me to find this website and discover that delusions, and aspects of psychosis, are quite common in ICU patients. I suspect these strange mental experiences leave scars. I have talked about some of this to family and close friends; more recently, I've mentioned it when it's been relevant (for example, to a social work student I'm working with who is undertaking an assessed practice placement in a hospital) because I believe that the more people are aware, the better.
However, whilst I agree with much of what Mystery says, including the comments about how awful it must be for the family ( I still feel guilty for putting my daughter through it, even though I know this is completely irrational) I would not want to go back and visit the ICU. This would be a step too far.
I want to try and contain the whole experience, not constantly re-live it.
I visited Icu on a follow up visit which helped me to put dreams and reality into perspective not to relive it, I believe it was a big step in moving forward
Hi engraved. Sadly you sound as if you already have PTSD. The symptoms are Re-experiencing symptoms:
Flashbacks—reliving the trauma over and over, including physical symptoms like a racing heart or sweating
Bad dreams
Frightening thoughts.
Avoidance symptoms:
Staying away from places, events, or objects that are reminders of the experience
Feeling emotionally numb
Feeling strong guilt, depression, or worry
Losing interest in activities that were enjoyable in the past
Having trouble remembering the dangerous event.
Hyperarousal symptoms:
Being easily startled
Feeling tense or “on edge”
Having difficulty sleeping, and/or having angry outbursts.
Of those intubated for under seven days as many as 60% have PTSD and those over seven days 80%
The best way to deal with it is get as much info as possible. I have been out for fourteen months I was intubated for seven days only conscious for one of those. My advice is to visit the room you were in I may help you understand some of the things you saw and felt. It did for me. Speak to your family about how they felt. I have had a great time laughing and crying with my children and grandchildren as we recount our feelings and experiences. Do some research on near death experiences. You’ll be surprised how many common experiences there are that cannot be put down to delirium. Finally embrace your new life. As survivors we have been given a second chance. Make the most of it!
It has been four and half years since my time in ICU I still need to talk it though and get the strange things that happened in my head straightened out. Sleep is the thing that I have a problem with since ICU.
It's understandable that you're apprehensive about opening the box. PTSD is not that common and rates of between 4% and 15% are more realistic link.springer.com/article/1....
I'm a former patient and not a healthcare professional although I've attended many critical care meetings and conference over the past ten years. Though PTSD is not common, it's far more likely for people to have symptoms of post traumatic stress without it being PTSD. I always liken it to a fairground 'test your strength' game where it's only PTSD if it scores high enough to ring the bell, but you can varying degrees of post traumatic stress without it ringing the bell and being clinically classified as PTSD.
You're fortunate to be seeing nurses at an ICU follow up clinic as only around 30% of UK hospitals run these. I would suggest contacting them and letting them know the effect the session had on you so they can advise you appropriately. If they can support you through the process dealing with the delusional memories and dealing with them so you can be at peace with them, that would be ideal. Running the follow up clinic, they'll have seen a great many patients like us in their time and will be able to use the benefit of their experience in advising you.
I can recall at one of the first ICUsteps drop-ins that we held, a man who for the whole two hours was in floods of tears. At the next drop-in four weeks later it was almost the same but over the following drop-ins he was able to emerge from the legacy of his critical illness and got much better. It's just one example, but I've known many other patients since who've benefited from coming to terms with what they've been through to allow them to move on.
I hope your ICU healthcare professionals are able to help you through this and alleviate your concerns.
A formal diagnosis is not neccesary to help a survivor understand that they have the symptoms as a result of thier ICU stay and that is what is making life difficult for them. While I appreciate your web site and I wish we had the same in Australia. I am dissapointed that you are not across how difficult it can be for people especially those of us who ended up in the ICU because of accident or medical negilance (unplanned)
Thank you, for all who have taken the time to reply to me. I'm really grateful for the input.
I am certainly thankful - for my second chance, for the follow up nurses, for my faith that has grown massively since the experience.
I'm reassured too by there being symptoms that are some way on a continuum with the thing we call "PTSD" - that there is not a line that, once crossed, can not be undone. I think that's what my fear has been about, that there is this syndrome, if you like, that one is either in or not in. And once in requires intensive help to get out of.
From what is being said even by different points of view, it is a scale, a diagnosis may or may not be made at some point on that, regardless, I have some of it already and probably did before I even left the hospital some 6-7 weeks after leaving ITU.
So nothing terrible is going to happen that is necessarily worse than has already happened, and that this follow up clinic is as good a place as any if not a whole lot better to try that, try it and see with the wonderful support I have from family and friends, and do that knowing it might get better in time.
I've felt much worse in the couple of weeks since I first went back briefly, so I've started now, I need to have faith that this, too will be healing and this, too, will pass.
Hey, no time has passed for you since your ordeal and time does heal - I was told this and couldn't see that things would ever get better but I have finally got some of my old life back whilst I think about my hospitalisation most days. This forum is good for me 18months on from a 7 week stay 50miles from my newborn baby, friends and family and many days sedated. I have been given a reason to live and life is more colourful..most of the time..on this lengthy recovery. Keep talking to 'us' All the very best x
I am the psychoptherapist attached to ITU at Croydon Hospital and see all patients who have been ventilated there.
I believe it is in fact very important to deal with ITU patients' dreams especially when they have been frightening as they can indeed leave patients with very nasty memories and indeed PTSD.
But if you get very easily 'triggered' by even the slightest recollection of them, then you need o approach them in a very 'mindful' way. Notice what happens to your heartbeat, breathing, body temperature etc as you speak of them. If your heartbeat and breathing speed right up (or slow right down) then noticing that and relaxing yourself would be best rather than continuing to recollect there and then. If that is the case, you could consider seeking some help from a mindfulness-based therapy or possibly EMDR (which specialises in traumatic memories work. I ahve never used that for ITU as I am not trained in it, so cannot say).
Most ITU dreams have the same themes: e.g. nurses and doctors are trying to hurt/kill you is one of the most common themes - the most common being trying to escape.I believe it to be very useful and empowering to ask patients what they were trying to DO. Almost always they were trying to do something (escape, hit out, answer life-saving riddles etc.). Patienst in ITU are fighting for their lives and the fight for survival is almost invariably reflected in the dreams.
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