Hi im new and thank you sooo much: Hi I just want... - ICUsteps

ICUsteps

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Hi im new and thank you sooo much

Dawnie123 profile image
7 Replies

Hi I just want to start by saying thank you to everyone for posting your stories! They have brought great comfort to me.

Im not going to share my story tonight because I don't have the time and have work in the morning but I will give you a very brief explanation.

I am 29 yrs old and on the 1st of august will be my 1 year anniversary for being admitted into intensive care, I had a very bad throat infection that caused my throat to close and I had a very very long operation which included having my tonsils and wisdom tooth removed, then put on a nasal ventilator. After a week I had an emergency tracheostomy. All I can say about this time is that it was pure hell!! I had petrifying nightmares, I was hallucinating that the nurses and doctors were trying to kill me and it still haunts me to this day!

Even just writing that small part of my story has brought a tiny bit of closure to me, It is still to this day the last thing I think about before I go to sleep.

A question to everyone though, is anyone absolutely terrified of dying now? As sometimes this keeps going round my head! And also I have developed a fear of needles and hospitals. rdiculous i know as they were the one who saved my life!

Thanks for taking the time to read this.

xxx

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Dawnie123
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7 Replies
LucyT profile image
LucyT

Hi,

Welcome to the group. I was in ITU in 2008 with Blood poisoning which caused multi-organ failure. I had nightmares etc like you. I was on a ventilator for a total of 11 days and eventually they had to give me a trachy. 5 years downstream and I still get flashbacks but they are not as intense as they were but I still have a huge fear of hospitals. My Consultant said that its because the last time I was in hospital I was so ill that my subconscious thinks that by entering hospital I'm going to be readmitted and go through the whole nightmare again. I was told to visit a hospital and have a coffee. This was to show me that every time I go into hospital it's not always for bad reasons. That really helped me. I was also advised to go back and visit the ITU as they will be able to answer questions you may have about your stay.

The anniversary of my stay in ITU, I always find, is the worst part of the year.

I wish you luck on your journey forward.

Best wishes

Lucy x

muncii profile image
muncii

Hi Dawnie, I'm glad this site gives you comfort, me too.

It seems many of us here believed that ICU staff were trying to kill us whilst we were patients (I thought the man in the next bed to me was trying to kill me, too)

In answer to your question in the last paragraph - yes. I think that may be quite common too. We now know how fragile the body can be, how quickly one can become dangerously ill, and in those circumstances how dependent we become on other people, and on machines, to do all the things which we normally take for granted (such as breathing) So the fear of becoming ill again, and dying as a result, is very real. I wouldn't beat yourself up about it and hopefully it will lessen over time.

I read one comment on this site to the effect that younger people can find it more difficult to get over ICU experience (if I understood correctly) This is interesting and I wonder if it's because as we get older, we are more conscious of our bodies deteriorating, whilst when we are younger, we tend to take good health for granted. So maybe now, you are one of those unfortunate younger people who cannot take good health for granted, as a result of your experience. On the other hand, you could say that you have a kind of wisdom about life which many of your peer group won't have!

best wishes

Muncii

Adi999 profile image
Adi999

Hello, after reading your story and Lucy's comment I have to agree, I would really advocate visiting the hospital and when your ready the unit. Even if you just go to the hospital the first time to sit in the coffee shop, like Lucy said it may help your subconscious to see the hospital in a different way.

When your ready I would phone the unit and ask if you can go in. Perhaps if there was a nurse that you liked, you could see when they are working next and they could spend sometime with you whilst you are there. I work in ICU and we encourage people to revisit the unit, because it can help you realise that things aren't always as you remember them. Sometimes people find that because of the drugs and sleep deprivation when they do re-visit the unit, that there are elements that are real, but equally some find that there memories have been distorted by the drugs etc.

Is there a support group near to you, as again this is something that we really advocate as it can be amazing how much support others have to give. Take care and good luck x

Luckyone profile image
Luckyone

Hi Dawnie,

Welcome to this great community, unfortunately your story is so familiar to so many of us that have been in ICU and suffered the horrific nightmare and hallucinations the drugs that save our lives can cause, I spent 3 months in ICU, the first 7 weeks I have no memory of when my wife was told I had little chance of survival, that time was filled with my worst memories, from believing I was dead to people trying to kill me, now two and half years later things are much better the nightmares have faded, but never forgotten and I believe we all have a fear of dying as we have all been so close to death we all appreciate how precious life is.

Your fear of needles and hospitals is understandable it's a natural defense the brain puts in place to block out bad memories but when you feel ready to visit the ICU you may find things look very different, when I went back for the first time it looked so different from when I was the patient in the bed, the strange thing for me is I used to have a fear of needles before I was in ICU now I have no fear of them at all.

I now help run our local ICUsteps Support Group and I would say if you are lucky enough to have one near you go along to one of their drop-in meetings,(they can all can be found on the ICUsteps website) I have heard so many people say just talking to someone who has had a similar experience and understands what you've been through can help find that closure we all look for.

Best wishes for the future

Bill

patchworker profile image
patchworker

Hello Dawnie,

One day, when you have time, please tell us your story. You need to be brave to do it, but you'll feel better for it. Each time I tell my story I find the horror fades a little more. It's 3 years since I was in ICU, and I'm still afraid of the specialist nurse, even though she's a lovely good person, because she said "nice to see you" . At that time I thought I was being tortured, so I thought she meant "nice to see you being tortured".

I thought the nurses were trying to kill me, but the doctors were trying to help me, so I kept writing on the pad I wanted a doctor

Writing this is making me weep, even after 3 years. perhaps I need to tell my story once more. But not today.

It's not even a year since you were in ICU. No wonder the memories are still painful.

Have you reached the stage when family and friends are sick of hearing about it?

Tell us, we all understand. We want to hear about it. It's comforting too know other people had similar nightmares and we're not crazy.

Jane

garrymeister profile image
garrymeister

Hi Dawnie

I'm sorry I have taken a while to post this but I had to think carefully about sharing this part of my story. I was in ICU for eight days , six in a coma . One day conscious and intubated (yuck).Then another five weeks on the ward. I have been home for twenty months but it looks unlikely that I will ever return to work. I didn't think they were trying to kill me, they did!(try) A routine kidney removal became life threatening and I suffered multiple organ failure after the surgeon mistakenly removed my Celiac and Superior mesenteric arteries. My experiences are similar to the others you will read about on this site. I had hallucinations and misinterpreted things that were happening to me . Like the others I have been helped with cognitive therapy. visiting the ICU again and discussing (and eventually writing down) all that happened to me. I avoid the hospital not because I am afraid, I still may have to go back for a major vascular reconstruction, but because it means I don't have to deal with the unwanted thoughts and memories unnecessarily. Likewise I am not afraid of dying. During my coma I experienced an NDE (near death experience) It is well worth investigating NDE's. Just put it into a search engine there are some great sites for you to look at. You may be surprised to know that most people who have them tell stories that have common threads running through them. That is true for me also. But the point I wanted to make was is that death is not unpleasant for the person it is happening to , despite what it may look like to the people witnessing it. For me it was a pleasant calm sensation and yes I didn't want to come back. You can tell from what I am saying that based on my experiences I am a firm believer in life after death. Having made it back let me encourage you to live life to the full. There is nothing to fear in death when the time does come and while your experiences may not coincide with popular belief it does not mean you are crazy. I hope this helps .

Garry

Dawnie123 profile image
Dawnie123

Thank you so much everyone! I will share my story soon, I promise! You all have no idea how much reading everyone's experiences is helping.

I did visit icu a few months after I left and spoke with my surgeon. I was absolutely terrified of walking into that hospital. I didn't get much out of speaking to the surgeon as he was very vague in what he was saying and I left with a lot of un-answered questions. I did get offered to go and have a look at the room I was in but was too freaked out at the time. I may visit in time I don't know yet. icu was just so frightening though! did anyone else have smart glass surrounding their room? where they just switch a switch and all the glass frosts over? This caused major hallucinations with me and made me very unsettled! I didn't think I was in a hospital.

I will be receiving my photos from when I was in there soon, but not sure im ready to look at them yet. also my mam has kept all the things I wrote when I couldn't speak, im building up the courage to look at them also as that was the time when I was most delusional! Has anyone else received photos or looked back at anything you wrote?

Thanks again everyone. I am so happy to speak to people that understand. My family are supportive but I feel like I am upsetting them when I bring it up. None of my friends understand and I don't want to sound like im milking sympathy if you know what I mean.

you have all helped me so much already.

xxx

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