Good Morning everyone 8weejs ago yesterday I was admitted! My friend sent me this last night, & wanted to share with the very people who will understand this, hope it helps, I am struggling at the moment, life has gone back to normal, My family have all gone back to DEVON, friends don't call in every day ect but I am still very much there! Did anyone else feel like this?
Sarah x
Hi Sarah,
Thanks for sharing that, I'm sure it will resonate with many here in the community, I think the hardest thing is accepting what will become the new normal which can be very difficult to come to terms with in the early days after ICU, in the beginning family and friends are there to support you but often slowly drift away never really understanding how traumatic a life threatening illness can change your life forever, with comments like "it's time to move on and put it all behind you" words that cut through you like a knife with their lack of empathy.
Life does get better with time and the bad memories fade, we may never be the person we once were, I believe we become richer for it with greater empathy and understanding for others that have had their lives turned on it's head, but the greatest reward is having a second chance of life and making the most of it.
Bill
I said to my hubby "I miss hospital" yesterday. He said "why?"....it was very hard to explain. I was in a coma for 3 weeks then renal ward for 2, released 6 weeks ago and am driving a bit and starting a phased back to work scheme in 1.5 weeks which I am dreading. I miss the regularity of hospital, the rhythms and timetables, I even miss my stomach injections, blood tests, being weighed at 5:45 each morning, having my blood pressure checked at 3 am, having bloods taken at 6:40 am. Lunch arriving at 11:45, I mean, what's that all about??? I miss the nurses checking on me, I miss my husband feeding me. I'm sad, it's all going "back to normal" but I'm no longer normal. Thank you for sharing the above xx
I get all that BBDEBS completely, and it's exactly how I feel. Minus the food itself, and my lack of a husband or anybody really who gives a toss. I was in icu in an induced coma and ventilated not expected to survive last january 2018. My family now think I should be fully recovered and back to normal. However I'm still not well, still not discharged from hospital care as an outpatient and still struggling to get used to my life as it is now, very different to how it was before my critical illness. Nobody around me gets it because they haven't ever been in a coma in icu not expected to survive. I miss the friends I made when I was finally sent to a ward, none of them had been in icu or a coma, but they understood critical illness. Life now is forever changed and a huge part of me wishes I hadn't ever woken from the coma if I'd know just how cold and lacking in empathy even my own family have been and are being towards me. People who claim they love me, yet don't seem to care at all that I survived and had to fight to do so against the odds, they say such thoughtless, tactless insensitive things to me, which make me feel like their claims of loving me are most definitely fake words, and I'd have been better off never having woken.
I feel exactly the same. I’ve lost 3 very close friends in the last 12 months, and I am 3 years out of icu, but as with you, still not discharged fully. I am still under 2 specialists and people no longer give me “grace” to deal with what we went through.
The judgement from “friends” is very condescending and I find myself withdrawing from things. They expect me to be “me” despite the fact I am not.
Are you in the UK and if so, can you get to an Icu steps support group? Without them I honestly think I would have gone insane by now.
The first year is physical recovery, the second is emotional and the third is mental. I still question if I would be better remembered as I was ie not having woken up, my family would have my death in service, I’ve just been made redundant, life seems pretty crap right now.
Then I tell my mum I wish I hadn’t woke up, and she cries, and I say I’m worth more dead than alive, and she says “not to me”..... and I realise how selfish I am being. I can’t help it, but I do realise it. I am a shell of myself, and my confidence is rock bottom, but I paint on my smile again and pick myself up, and put one foot in front of the other once again.
It gets easier, you are still very early in your recovery cycle, but go at your own pace, don’t compare yourself to anyone.
Here if you ever want to talk, but do check out Icu steps support
Best wishes
Debs
Sarah - many thanks for your post. In answer to your last question: yes.
I very much like the quotation your friend sent you. I'm no expert but I think the concept of the 5 stages of grief is open to interpretation and criticism. In particular, the alleged final stage: 'acceptance'. Your quote suggests it's more complicated than that, and I agree. And I think that although there are many common themes in both the concept of the 5 stages, and experiencing serious trauma in intensive care, there are some major differences too. Being in ICU is a very specific and extreme set of circumstances.
You mention your family and friends - I hope that they will keep supporting you, even 'from a distance'. But I discovered with some of my friends that it can be very difficult, if not impossible, for some people to imagine, and empathise with, what we have been through in ICU. It's almost beyond imagination.
There was one long-term friend, who visited/contacted me rarely when I was convalescing at home (I live alone) despite living a couple of miles away, and on one occasion when I asked her to undertake a very small, but urgent, task for me, did so extremely reluctantly. And this is a woman who is a very experienced, and very professional, counsellor. So I learnt that one of the things I needed to do, in trying to come to terms with the 'new normal', was re-evaluating my friendships. That can be quite hurtful.
Apologies for the length of this post! please have courage, the bad days when you are struggling will gradually diminish. Be kind to yourself, and thanks again for sending us this wonderful quote.
I agree with all you said.
My husband is now on anti depressants and off work as he keeps having flashbacks. Thanks to bupa we have arranged CBT for him but never underestimate the impact this has on family members and friends too. I have had friends refuse to see me in a coma, drove the wrong way around a motorway roundabout, visit me like trauma whores, and also be completely amazing. Xx
Icu.Halucinations.
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