Memory loss from induced coma: I was put into an... - ICUsteps

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Memory loss from induced coma

Wilkie1606 profile image
16 Replies

I was put into an induced coma for three weeks. I had my large bowel removed, got sepsis, given 36 hours to live. My lungs weren’t working.. I now have bad memory loss. I picture an object in my head, like cup, but can’t remember it’s name. This happens every day. Having conversations can be frustrating. It’s been three years. No change. Where to I go from here?

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Wilkie1606 profile image
Wilkie1606
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16 Replies
jojokarak profile image
jojokarak

I do puzzles, crosswords, wordsearch and suduko and play online scrabble 😊

It's helpful in some ways but I think accepting that our minds have changed is the key to moving forward

Twacked profile image
Twacked in reply to jojokarak

Great advice cognitive enhancement on a smart device seems to be helping me with my memory especially to get tired enough to fall asleep

jojokarak profile image
jojokarak in reply to Twacked

I wish I was so lucky to sleep lol but meds I am on disrupt that but glad it works for you 😁

Sepsur profile image
Sepsur

I agree with your previous reply too. I know my cognitive processes have changed for ever. I accept sometimes & get bemused on other occasions. Sometimes my filters are down & I fail to see the ‘bigger picture’. Only later do I realise that I’ve misconstrued or misunderstood a situation. Frustrating & baffling but what can we do but live with it. Tiredness or being extremely busy exacerbates ‘symptoms’. I couldn’t remember how to wire a 3 pin plug the other day😬😬

Twacked profile image
Twacked

It’s been almost 2 years for me as well I’m in the same situation. I’m currently trying get a visit with a neurologist probably won’t do me any good there’s a special on Netflix called The Mind Explained that may give you some insight. Just do what you can do. It sux when you appear healthy and intelligent but get half way through a good story and can’t remember what you were talking about. Good luck be patient with yourself

Wilkie1606 profile image
Wilkie1606 in reply to Twacked

That’s mad, I started watching that on Netflix yesterday

Mijmijkey74 profile image
Mijmijkey74 in reply to Twacked

It will be 2 years in jan 2020 since I was put into induced coma to try and save my life on the 17/18th Jan last year 2018. It still feels more recent. I was extremely poorly and my survival wasn't expected, parents called in twice to watch me die. It was only an 8 or 9 day coma, but had to relearn a lot, my weight just below 4 stone, my brain scrabbled, my body emaciated and muscles wasted away just bones protruding. I know look reasonably okay on the outside, weight not quite 6 stone but nearly there, so people don't understand and make stupid comments, like are you feeling better today? Or oh you don't look ill! Or oh why are you so exhausted did you have a late night? They don't understand at all that the outside may look okay, but inside is very damaged and very fragile, but yes I can now wash and dress myself more easily and not collapse in exhaustion trying to do so, yes I'm now helping my dad by hammering out old mortar between the bricks outside ready for repointing, but what none of them understand is doing that is making my whole body even my spine ache, my wrists ache and still flop downwards and have little strength and holding any tools is like trying to constantly hold up two bags of cement, but I do have plenty of determination and despite me feeling still incredibly unwell inside and my exhaustion levels through the roof, my memory not right, lost for words, tongue tied, sudenly spacing out, my memory for spelling words gone, me never feeling like I fully ever came out of my coma, like a part of me is still there in it, that my health has been change, my mentality, my abilities, my eyesight, my inability to sleep at night, or if manage constant waking, a restlessness about me, everything feeling surreal, the sky majestic that nobody else see's as jaw droppingly so as I do, or amazed by simple things like I am, nobody understand I just can't move for ill health, exhaustion and pain some days from bed, but outwardly I'm recovering apparently. My coma to me feels only a few months ago. Nothing will ever be as it was before, some of it I don't care won't ever be as it was before. I do now consider myself slightly disabled, my walking isn't right, my vision is blurry and being in the dark makes me nauseaus and dizzy, everything takes me much longer to do, my muscles are weak and damaged, my concentration gone, but from my wonderful coma dreams I have been left with an inner peace which is comforting. My family, friends don't understand at all, nobody in my life does, they all think I should be better now, and don't understand when I'm sick, or have to go to a&e, they forget I am still not discharged as a hospital outpatient. They don't understand because from the outside I look much the same as I used to. I find them all hard work and ignorant, trying to act as if nothing ever happened. They know all is not okay still with me, but they are ignorant and stupid. The one thing I won't allow any of this to do to me though is beat me! Not ever!

Am going to watch mind also on netflix.

Wish you well, I have much the same similar issues as you have mentioned, two years is nothing, especially when almost died or survival not expected or coping with damage to body parts or brain. We are the ones who have endured not them, they only witnessed our fight as family members or friends as we lay in our comas. The time to them passes differently than it does for us. They will never fully understand. I can't use my hands properly because they are weak, they flop unexpectedly and ache, plus sensation in them isn't the same anymore, neither is my coordination. It took me over 6 hours to sew on two patches on the knees of my dad's overalls because I couldn't see the thread properly even with glasses on, couldn't feel the thread or needle properly and kept dropping them both, then suddenly my wrists would start to ache and flop. told my dad how long it took and why, he laughed at me and said OH NO IT DIDN'T! 6 HOURS INDEED! Get on with you! He made me feel like a complete liar, like I was exaggerating because he doesn't even at 74 years old understand the effects of muscle deteriation and weakness on the body, and forgets just how seriously ill I have been, and that me sewing on patches to his overalls is a bloody miracle considering just last january my survival wasn't expected at all, and my mum told to think about my funeral arrangements. I was proud of myself despite it taking 6 hours and a lot of pain in my body to have managed to do that. They were sewn on with a lot of determination, love and pain, and didn't need mocking for something I tried so very hard at completing with huge difficulty. I felt very upset by him. I still struggle washing my hair, brushing my hair, brushing my teeth somewhat because of muscle weakness, but not as I did initially, but always aware there is a constant weakness of my muscles, everything more challenging now, but not impossible, everything just takes more time, more effort and leaves me more exhausted, and think it will always be this way now. Good luck progressing, be kind and patient with yourself.

Wilkie1606 profile image
Wilkie1606 in reply to Mijmijkey74

Very, very well said, your a fighter

Mijmijkey74 profile image
Mijmijkey74 in reply to Wilkie1606

Thank you. And yes it's true I am a fighter to the very core of me, and to stubborn to die! I've got to much to do yet. Lol x

Twacked profile image
Twacked

I’m about to take that trip in a cow pasture

Worzel1 profile image
Worzel1

I also was in an induced coma after a triple bypass that went wrong, I also now suffer from memory loss it is so frustrating but thank God that I am still here, so I see it as a small but annoying price to pay

Skyehammer profile image
Skyehammer

Sort of a similar story - septic shock , lungs and kidney stopped working - flown to Paisley where my heart joined in the fun - my Family were told to prepare for my death and the Doctors talked about switching off Life Support , the Doctors added that should I live I would most probably be suffering from brain damage [ yes , everything was that negative ] - but after 3 weeks my eyes flickered open for a while and after 6 weeks I was out of danger [ well , sort of ] .

After coming home I discovered I was forgetting stuff , mostly names of people , names of certain objects , some nouns and adjectives etc etc - I went to my Doctor but I wasn't taken that seriously ' Age ' , ' Tablets you're on ' .

I began leaving myself notes if it was a Doctor's appointment or if I had to make an important telephone call and so what if I forgot certain names , my wife would remind me and I hadn't forgotten them permanently .

I've just learned to live with it .

Mijmijkey74 profile image
Mijmijkey74 in reply to Skyehammer

Out of curiosity what age are you? What an odd thing for doctor to have said knowing " I assume? " your history. It's not something you should have to learn to live with if there is help available, or a reason for it that can be rectified as in possible vitamin deficiencies, infection, virus underlying. Have they scanned your brain for possible damage?

Videodragons profile image
Videodragons

I went through a lot of a lot of that too – septic shock, organ failure, long coma, muscle wastage etc. – and my brain wasn't at all happy about it. That inability to find a single word is called ANOMIA, I think. I find I have good days and not-so-good days for no particular reason. On the whole I have been getting very slowly better for 4 years now...

KizzyD profile image
KizzyD

I am just 4 months since I woke up. My memory is awful. It wasn't brilliant before but now it is even worse. I have the same symptoms as you. I forget what I am saying while I am speaking. I forget simple words and I have memory blanks from my initial surgery through to a few days after I woke up. It is disorientating.

Catdancer01 profile image
Catdancer01

Am 10/11 months from being discharged & feel exactly the same as you & your replies. I get extremely frustrated with people who say “you’re well now?” & really only want to hear yes I’m fully recovered.

The hardest time is when I’m tired at the end of the day & both my kids are asking what different words mean ( it’s good that they are interested)& wanting to answer, but can’t off the top of my head. So I have now resorted to stopping the film we’re watching, getting the dictionary & looking the word up otherwise I feel like my head is going to explode!

I also get annoyed with people , who haven’t been critically ill, saying that exactly the same happens to them. It is not the same, I know my brain is slower & can not cope with too much going on like it did before I was ill.

I just take a deep breath & try to accept that I might not remember the word I want to say, but it’s not the end of the world-even though it might feel like it at the time.

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