so i’ve been out of hospital for 54 days (ICU free for 76 days after 6 weeks in a coma due to a suicide attempt), and i read that memory loss of the event that caused your ICU stay is normal...however, i’ve noticed that lots of my previous memories are now gone. i can’t remember things as well as i used to, if at all. i’m only 21 years old, and the doctors said my amnesia should recover after a few months, but if anything it is getting worse?
it’s emotionally tearing me apart because i feel like i should be getting better but in reality i feel like i’m slipping away segment by segment; memory by memory.
my sister had to prompt me for a few days to remember my 21st birthday (we went to Dublin which is my FAVOURITE city) and even now i can’t recall any of it. looking at photos of myself and not remembering the event or what happened is killing me and badly affecting my mental health.
i walk around feeling like parts of me are missing, and despite receiving my ICU diary & being invited back for the 2/6/12 month visits, i can’t fill those gaps. i’m at a loss 😞
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mylko
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i’m having lots of support from my mental health team, but we’re still awaiting a follow-up from neurology that has been bumped up due to the concern in my memory loss.
Great swathes of my past I look at, and think, was that me? It takes time to heal, it really does and I can only implore you to be less hard on yourself.
Make new memories now, with your family who love and treasure you. The past is the past, and this is the new you, the reborn you, the survivor you.
Whether you belive in nature, nurture or a combination of both, if you think we are defined by our experiences, to have lost them will cause you to grieve who you once were. But, you are here now, you can make new experiences, new memories.
Your ethics, ethos, your very essence is still you. You may make different decisions, less like the old you, but explain to your family this is new you.
I spent ages trying to be the person people remembered me as, this Saint, this goody two shoes, and that just isn't me anymore. I am 95% the same, but 5% new me. I don't suffer fools, I don't take sh**, if you don't like the new me, fine, plenty of new people in my life do like the new me.
I am 4.5 years post coma, and I spent 2 years apologising for not being "me". Now I tell people this IS me, deal with it or don't, choice is yours.
You may never get your memories fully back, and with that you will need to make peace. At 39 pre coma I already had a crap memory so maybe it is age creaping up on us all.
It would be worth asking to be referred to a traumatic brain injury clinic if for whatever reason you find your memory is really worsening, especially if you needed cpr or had low oxygen for example. There are tools to help you cope.
Bbdebs your comments made me laugh. Thank you. I just warn people that I meet for the first time my personality has changed, that I have no control over my mouth and what comes out will probably be inappropriate. Take or leave it!
100%!!!! Where have our filters gone eh? Wholly inappropriate language from my mouth these days, and it is hard to not plan my comments as I just blurt stuff out. A bit like faux pas tourettes. I used to call them brain farts at work because I couldn't hold the comments in.
i read this comment about a month ago and thought i would take the advice straight to heart and to be honest - it has helped so much!
pre-coma i was an extremely withdrawn and quiet individual who would people-please with my last breath, keep my opinions to myself, and not fight for what i believed in. now, i’ve noticed i take a LOT less sh*te in life, i’ve cut off people who i now recognise were toxic, and made room for the people in my life who are here because they care for me and they know i care for them. i’m a different person, but still the same at the core.
my memory is still fading every day, now impacting my daily memory, but i’ve started writing a diary to remember my days and begun taking more photos / videos to help me remember my happy moments.
we’re chasing up neurology now as it’s become a concern for my team & family that i’m losing so much memory, but all i can do now is wait & make a physical note of how to tie my shoe laces
It is very important that it is realised that everyone is different, priorities are different and coping mechanisms are different. However this forum will lend support and give a multiplicity of ways forward none the least is that other people are going through the same experiences.
In my case I am 72, I had an operation on my heart just before Christmas and then I was sedated/ ventilated for 6-8 weeks. I am home now.
First of all loss of memory pre op. I have 2 forms - complete loss for at least 2 months before but it may be longer. That relates to most of my loss and then one or two events I can remember with prompting. During my hospital stay after the op most of my stay in icu is a fog. My family seem surprised when they ask me about things and I haven’t a clue about it. Towards the end of icu and stepping down to a ward memories are stronger. All of this is effected by the nightmares and hallucinations.
What this all means is that I don’t know what memories over the years are real and which are fanciful. Some people will say get over it. That’s not for me as I need to know.
The family kept 2 WhatsApp chats whilst in hospital the official one which included my wife I have read and the girls one which I have only just got access to (3 ½ months later) I am transcribing them as part of my story. I am gradually writing down the night mares and hallucinations and then I am going to combine everything into a story.
Back in 1982 when I was in my early 30’s I was very suicidal for about 12 months. I had a young family of 5 and I was diagnosed with rheumatoid arthritis, I was rapidly going down hill, in extraordinary pain, couldn’t sleep, about to lose my job and saw no end to the tunnel. Then there was no support, men didn’t talk about it and in the end I survived by fighting both the RA and depression. The events of the last 6 months have brought those memories back.
For me talking to others ICUstepschester has helped no end as has this site. It’s the first time I have mentioned what happened in 1982! I am much more positive in my latter years and also a keen fan of the pythons.
Remember you must always look on the bright side of life.
first of all thank you so much for your indepth message back and back-story, i feel very privileged to have learnt more about you. i’m sorry you experienced similar distressing thoughts in terms of suicide, it is not a thought process i would wish on my worst enemy, but i’m so so glad you came through it.
i’m exactly the same as in i NEED to know what was real and what was my brain playing tricks on me, otherwise i feel like i’m simply drifting along with no real grasp on reality. i’ve taken your advice and i’m hoping to join the next zoom meeting this thursday!
It taken me 4 yrs to have a catalogued sense of my past - ie that it runs in sequence & the correct order. Cognitive dysfunction is a real issue for me on all sorts of levels. I’ve changed, as other responders have stated, for me, not all the changes are bad. I hope you find some peace with yourself soon. Do you have a team looking after you for the episode that brought you to ICU?
sadly the memories of ICU only seem to be on repeat, and i’ve made sense of only one hallucination in the past month compared to the real-life event of what happened in that moment (thanks to my ICU diary). all my current memories are still fading, but i’m hoping it’s just temporary.
yes, my mental health team stuck with me throughout my coma and have been giving me intensive support since. they’re all gems xxx
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