ICUsteps
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Talking makes it easier

Thank you, to all the responses. Talking and sharing our experiences is such a great way of releasing the craziness that happened. I don't think I will ever forget the hallucinations, but every time I speak about them it does feel a little easier. Especially when talking to other coma patients. Talking to relatives about these events for me is difficult, as they must have gone through so much when they are looking at a body in the hospital bed. They must look at us and think how peaceful we look, yet many of us are suffering inside with our crazy hallucinations. All of us talking here today beat the coma/infections, and we are survivors.

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I suppose I'm fortunate in that I've been able to openly share with most of my family the difficulty and trauma of the experience, seen from both perspectives. It took a visit back to the ICU some months later with my wife and sister for me to appreciate and understand what they went through, seeing again the ward and the bed where I had been lying, close to death. We've all survived so much.

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My hubby was in icu last year for 5 weeks.He had a motorbike accident with life threatening injuries.For me seeing him like that has been the worst and most heart breaking event ever.I still struggle with it all and when he came home we cried alot of tears.It has changed our lives but not our love for each other.I cry quite often but not in front of my hubby.He is no longer working and had has been left with a life changing injury.I know he feels very guilty .I just feel incredibly sad for my dear hubby who as he said himself is a shadow of his former self.We don't talk about the accident or hospital anymore.I think it is just far to painful .I'm glad I've found this site to open up .xx

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It’s been 2 months (well almost 8 weeks) since I left the hospital after 2 grade 3 Comas with a 1-2% survival rate, and I’m so frustrated. I’m p’d off that my arms and legs are still so weak, I know it takes time but I’m impatient for it all to be over. I’m still trying to deal with the Coma dreams, trying to figure out what was true and what was just a dream, trying to deal with how I should have died, all the medical staff thought I’d die, they told my family “she’ll never go home, if she survives CCU she will be taken to a hospice and die within days, a month or a year at most.” My Mother, (who’s NOT even my next of kin, my husband is) then put a Do Not Revive (DNR) on my notes, (which I found out by chance last week and took it off my notes) and the memory loss....I can’t remember most of this year, prior to both Comas. There isn’t a steps group near me, although the hospital does a CCU clinic every 2 weeks for past patients. I just want my life back to how it was before the Comas. I want to forget they ever happened, but I can’t which just adds to the frustration.

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I understand your frustration Tessa, you have been through a terrible time. But - 2 months?! I'm afraid you will need to find some patience! You will have good days, and awful days. That's the nature of the beast. You will recover your physical strength, but probably not as fast as you would like.

Speaking personally, I had to find a balance between pushing myself (appropriately) and being kind to myself. Everyone has to find their own balance.

And as far as the dreams are concerned: people here often comment about theirs, and how difficult it is, looking back, to distinguish between fantasy and reality. I'm still not sure about mine, 7 years later. I try not to dwell on them (some were unpleasant) but just accept that they were just part of the whole, horrible, package. !

Take care and look after yourself

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Thank you. I know I need to allow myself time to heal I just wish it had never happened in the first place!

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I know Tessa, I'd dearly like to turn the clock back, too. Perhaps your impatience is a good thing - it will give you motivation, energy, and goals to achieve!

In time, I hope you can find a 'new normality'. Best wishes for your recovery x

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I’m over 2 years into my recovery from urosepsis pneumonia and septic shock. Like all of you guys I too was in an induced coma in ICU. I still feel tired most of the time and have started having u nrelated nightmares. I am also on medication for anxiety. I am not the person I was before I was ill. However I am grateful to be here and have come a long way in 2 years. Hang in there and be kind to yourself x

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Hi Ruth, sound like we are both at that same amount of time post coma. I have had counselling/therapy for 8 weeks, and it has made a significant change. I too have medication for anxiety which also helps. Realising that there are many of us with the same condition makes me feel that I am not alone. Talking to others at the ICU steps group has also lessened the inner pain. The group I go to are very upbeat and add a lot of humour to their experiences. Good luck.

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Thankyou Richard...it means a lot to know I’m not the only one! Unfortunately there are no ICU steps groups near me as I live in the highlands but I will look into counselling to help me move forward.

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Hi Ruth, you are definitely not the only one. My main bit of advice is not to avoid or ignore what you are going through, I did this and regret it. Be honest with yourself and try and find some local help to talk to. I wish you the best of luck.

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Hi Ruth - hope you don't mind me commenting, but I've said before, here, that I think you need to be careful about your choice of counsellor. There are a lot of poorly trained, un-regulated people out there calling themselves counsellors.

The ICU experience is so special (in its own dreadful kind of way) that I think one needs a very thoughtful and careful counsellor to listen to what we might want to say. eg someone who doesn't 'rush' to offer easy solutions or faux empathy.

Personally, I did quite a lot of research before choosing a (private) counsellor. The more reputable ones will have a website setting out their qualifications, fees, and areas of expertise. A degree in Psychology is preferable, as oppose to a six week course taken at a college of further education.

Good luck and best wishes for your continued recovery

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I totally agree with you.I had nhs counselling after my hubby came home from icu.Months on I was struggling with terrible anxiety caused by all the shock and trauma of what happened to him in icu.

It was a waste of time not in depth counselling.

I'm now looking into specialist private counselling who specialise in trauma and grief.

I was in if one day whilst the poor family next to us had there daughters life support switched off.Next to my hubby bed!!

I still struggle with that and hearing her family .x

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thanks for your comment. Good luck with your search for a better counsellor, I hope you find someone who is really helpful. Your comment reminded me of just how traumatic the ICU experience can be for the patient's spouse/partner/son or daughter etc. To see their loved one, and other patients, so desperately ill.

Best wishes

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Thankyou 👍

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