Hi everyone , I was wondering if anyone had any advice , to make a long story short I was in icu for around 6 weeks at the end of last year beginning of this year , I had sepsis and pneumonia. I’m struggling a lot with flashback and really trying to piece everything together, I know I was in an induced coma and they tried to wake me up once but I couldn’t breathe so I was out out again and had a tracheotomy fitted , my husband and parents have tried to help fill me in but they can only say so much because they were only been told by phone calls. While I was recovering on the ward after a dr said he was referring me somewhere or to someone that can help you piece it all together and they has access to my medical notes and icu notes . I’ve herd people talk about their icu diary ? I was never given this , is it to late to get it now ?
Thank you 😊
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April00
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I was in ICU a year ago after getting covid it's so scary and u feel like u will die I had bad PTSD for awhile and saw bad things during covid I promise u you will get over it in time and try councillor if possible I recieved via mind charity if u need to private pm happy to chat hugs xxx
Some ICUs didnt keep the diaries going during the pandemic because of fear of cross infection. You can get hold of your notes - normally via hospital website. You can also ask docs to explain your notes during follow-up clinic. I know that not all units have follow up clinics, maybe you can ask to go back to your unit at a later date. This may help you to piece together what went on.
We are all different, so some people may find more help getting identification with others who have experienced the same - a drop-in meeting for instance - it normalises the gaps in our lives.
For others, you may need professional help - whether talking therapies, CBT or EDMR - these should be accessible via GP - not all areas in U.K. offer standard help - Scotland does standardise help.
One really relevant piece of information for me was that some of the sedatives used in ICU caused retrograde amnesia - this was a revelation for me & explained why I couldn’t recall my past.
One long term legacy for me - is that I can’t always be certain what is a real memory and what isnt
Thank you it could be because of covid I didn’t my diary as it was during time when covid was high . I’ve been offered CBT the waiting list is around 12 weeks but they’ve given me access to sliver cloud online in the mean time . I do still have contact with my consultant I spoke to him for a follow up a few weeks ago , he just said it’s all normal and things will be take time , I’ve got to have another procedure done it’s only removing a stent but I just can’t face going back in to the hospital so he’s agreed to delay it for a while.
I have the same done flashback are real and some were the ‘dreams ‘ I had while under .
My partner was in an induced coma for 4 weeks and in ICU for 7. He had reoccurring dreams that are very vivid and he can’t be convinced that they aren’t real. He did have a diary given to him which helped him understand what what had been happening and he’s found it really helpful. Thank goodness I was able to visit on and off (depending on covid status of hospital) so I can also give info. I also kept a diary at home for the times when I couldn’t go. Any help you can get in filling in the gaps would be helpful I feel. Keep well
Hi April. We have similar stories and like you I was in ICU with covid a year ago. I have had a series of flashbacks and as you know, they are deeply distressing. There are techniques that I have been taught that have really really helped, which help you not become trapped in the narrative of the flashback. This in turn means I still occasionally have them but they are less intense and last less time.
see link at bottom of this message. I would recommend you try and get professional help. Routes for this might be your GP ( if they are any good), contacting your critical care outreach team from hospital to see if they can offer referral to support, or a long covid clinic (again via your GP).
Finally, I run a support group. We meet fortnightly on zoom. next meet is on 23rd June at 7pm. If you want to know more, you can DM me your email and I will send you all the details. Realising you are not alone and getting tips from healthcare professionals who attend the meeting is helpful. ICUsteps chester run support group too and you can find them online.
I was in ICU for a couple of months snd have been in a specialist therapy for a year that the hospital have provided - it’s a pilot scheme though so not widely available. You definitely need professional help, the flashbacks are PTSD usually and the therapist will help you learn techniques to combat the ill effects. I’m not sure CBT is what you need however - you might want to talk to your doc about EMDR or PTSD therapy. Good luck xx
There is some very helpful information to be found here too for patients and relatives about after effects of ICU. I often direct people to this site as we found it helpful. readingicusupport.co.uk/for...
I had enough problems coping with how I was without worrying overmuch about details of what happened and I found it better not to worry about what happened while I was out of it. Just accept it as I would not behave in a different way to avoid anything that ha happened.
I also didn’t get an icu diary because of COVID. I have been given a summary of my notes as well as talking to a couple of people from critical care team and of course reading a lot of the posts on this site.
It seems fairly common for people in a coma to dream that they’re in hospital, though usually a weird one.
The more I find out, the more it seems that my dreams of being in hospital were at least based on real events, even though the details are very distorted.
I am surprised how much I was at least slightly aware of.
Also maybe it is unusual that some of my dreams were nice. I saw/hallucinated hibernating hedgehogs in domes hanging from the ceiling. When I came round the domes were lights. I missed the hedgehogs- they were cute.
I didn't have an ICU diary and my family weren't allowed to take any photos to help me come to terms with had happened to me - other visitors had apparenly been posting photos and diary sections of the peope they had been visiting into social media, a truly appalling thing to do. I struggled a lot with flashbacks and couldn't sleep through the night for a long time...and I still haven't been able to stop waking up at @4:15am! I was offered, as part of me rehab programme, to see an ICU counsellor and that was really helpful. My family kept notes on scraps of paper so that they could share my progress and they became a diary for me. I also asked to go through my notes with someone at the ICU and that also helped...I needed to know where all the scars on my neck, arms and legs had come from.
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