Post 10 day coma

[Still_a_rockstar]

Hi all. I need to talk to you, someone, anyone as I feel like I'm all on my own now apart from my partner.

Some things I remember (which is not a lot) , but mostly I'm in the dark about and so far I've been told 'you nearly died' and about how stressed I got when I opened my eyes while my 2 eldest sisters was with me and that I couldn't talk to them as I was still hooked up to machines.

Anyway, it started with a virus, to the point of me phoning for an ambulance on Dec 2nd (this is remember) I don't remember getting a taxi or even going to AnE on my own. Apparently I signed the concent form to be induced into a coma and paralised on the 4th but like I said I can't remember a thing after phoning an ambulance. I had type 1 pneumonia and my lungs were hardening and also influenza A.

From what I have been told my family was all there between themselves whilst I was in ICU and when I woke up they visited when they could. I stayed at my sisters for just over a week after being discharged on the 23rd Dec.

But now...nothing! 😢

It's like oh she's out of the coma and home so she must be getting better. I don't expect anything if I'm honest but a visit, cuppa and a chat.

No one has spoken to me about what happened to me or what to expect health wise (recovery, feelings etc).

Basically I just feel so alone and I'm sick of asking Google about things hahaha .

Any advice would be great thank you xxx

[Raising8]

Hey, this is all so new to you, body is still healing and your mind is trying to figure out what's happened plus you probably still have side effects from the drugs. My icu experience sounds quite similar to yours but mine was in May 2022. Don't underestimate what a life changing experience you've had, it won't leave you and all you can do is take each day very gently and keep letting your family know that you've literally been to hell and back and itsa trauma you need time and patience with x

[Wurlydog]

Hi there, I don't have any advice I'm only a week out of icu but I feel you. I'm staying at my mums for 2 weeks for further bed rest but she can't understand how I can just stare at the TV for hours without it being switched on. My head is a mess and I'm finding it very hard physically too. I just hope you get the support and help you need soon

[Goal2 in reply to Wurlydog]

hi I’m the same I can’t deal with the TV on I can’t I was in ICU for three weeks in an induced coma. I can’t stand being in crowded places. I’ve spoke to a psychologist from the hospital and they say this is normal for someone who has been through what we are experiencing. I died twice they said that they wouldn’t bring me back a third time because the body wouldn’t be able to cope. they put a DNR in place this all happened last May it’s a long road but just take each day as it comes. I still get the flashbacks there is help out there. See if you can speak to somebody at your hospital they invited me back three months later to see the room I was in as I can’t remember ICU at all they said if I need to contact them to get in touch with the hospital Hope this helps you take care.

[Sepsur]

your family will have been traumatised too - not everyone has the words to describe it either - they are probably in shock - it took my daughter years to start openly talking about me being ill.

You are not on your own - there are many communities like this one - we run a drop-in on line every Thursday which you’d both be welcome to attend

[Lux95]

You most definitely are not alone. What you are experiencing is common for ICU survivors, and unfortunately, no one other than those of us who have been there really understands.

As you have found, most people think once we are released, everything is back to normal. Far from it. It's been 3 years for me, and some aspects of normality are just now returning, but others probably never will. But that's ok. Normal is whatever we are used to, adjust to, or decide makes sense for us. As other commenters have said, an ICU is a life changing, traumatic event. Accepting that is a good first step to recovering and rediscovering what your "normal" will be. Although we may have some physical and psychological scars, such as avoiding crowds (I still do), we can learn to appreciate and enjoy life even more now.

My advice is to be patient and try not to worry (doesn't help anyway). If at all possible, take life one day at a time, enjoying what you can each day, including the little steps of recovery. But don't expect to get back to a previous "normal" physically too soon. It is common to tire easily, even years later; get frustrated easily, have short term memory problems, not remember our ICU stay, fear crowds, etc.

I tell others that for me, sedation felt like a physical and mental "reset". We have to start over physically learning to stand, walk, eat, etc; and there can be a time of rebuilding psychologically and emotionally as well.

Nightmares and delusions while sedated may seem more real than life itself. I still remember mine 3 years later, better than anything that happened beginning 2 weeks before I went to the hospital.

Post and ask as much as you need to. It does help to talk, even if only online. But if you can find others locally that have been through an ICU stay, talking in person can be even more helpful.

[Cloudshines]

I'm sorry that you've all experienced this. I was put into a coma after going to tha hospital with a sere tummy. Ended up being necrotising pancreatitis, with septicemia and basically I was drowning too. It's almost two years since the first signs, but as I've suffered from mental health issues and generally mistrusted the system, I didn't get all the help I needed.

The support I've seen here is amazing, and all I can say is keep going. Reach out all the time. You will find your support network. For me it was my partner, my best friend and my eldest sister. The rest of the family were/are too busy or wanted money lol

I barely moved for four months. All I can say is be compassionate and patient with yourself. Be kind to yourself. and listen to your body.

You will see improvements. Be patient.

[Misterpaulwood]

After a eight week induced coma, I know exactly how you are feeling, try to get to see a clinical psychologist, to talk through your issues with a trained specialist will help alot, they will also have all your medical records and explain to you the full time line of your stay in icu, after two years and a year of therapy I'm now in a good place mentally.We are all here for you if you need to talk.

All the best

Paul at the Steampacket Inn Knottingley

[Still_a_rockstar in reply to Misterpaulwood]

I'm under a mental health team who i can call on any time. I have been for years. I'm currently waiting for CBT and they check on me every so often. But because of the mood stabilisers etc that I'm on I'm almost completely on a level and can't express my emotions normally. I can't even cry at really sad films hahaha.

[mijmij]

I managed to call an ambulance for myself only just about, but after waking from coma thought my neighbour had called it and sent my dad off to thank her, I did remember the ambulance arriving and getting into it, but no memory of journey to hospital but clear memory of sorts (bit fragmented) of being in majors and minors and nothing working for my massive asthma attack. Only on day moved out of icu and put temporarily in a horrendous side room on a horrendous ward and my parents returned my bag to me and I managed after they left after several very stubborn hours of trying to pick my 10 ton weight feeling phone slightly up to unlock with weak floppy wrists and lying flat on my back unable to move did I just briefly manage to check calls and saw it me who had called the ambulance. I don’t have any memory of signing a consent form for my induced coma. Mine was in 2018 and was in mine about 8-10 days. Had to relearn a lot, but did so with some very quickly. Couldn’t walk, couldn’t shower, couldn’t brush teeth or own hair, just lay there staring and completely out of it, I had incurred massive muscle wastage and looked like an anorexic about to die. Weighed under 4 stone. Nothing seemed real. People speaking to me were speaking gobbledegook mostly another language and I was often straining to try and catch something of sense in what they were saying but with the old fashioned searching for a radio station sound in my head and my ears feeling like water was trapped in them I barely could and would shout/talk loudly because it was like I couldn’t hear anything if I didn’t though actually it was me thinking myself shouting/talking loudly when actually my voice was hoarse and below the even whisper sound level. People could barely hear me and often couldn’t at all, perhaps that’s why I felt I couldn’t hear them properly 🤷‍♀️ I don’t know. Couldn’t tell the time on anologue clock, could only count to 10 but would get mixed up, words in writing in paper/magazines/books/ etc would make no sense and jump out at me and dance about and switch places on the paper/page teasing me. Even the numbers on the clock jumped out at me like eyes on stalks/3D and jumped about. And so much more. 7 years later now and still battling some issues I was back then and some new ones, but my normal weight finally came back some years afterwards ( never been a heavy weight ) but now heavier than I was pre coma as not as active anymore and my vision sucks! That’s just me though. How you doing now?