Please tell me I’m not alone ?: Intentionally I... - ICUsteps

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Please tell me I’m not alone ?

Pandysgirls profile image
11 Replies

Intentionally I have given the same title to this post as I used many months ago . First let me say this is not a whinge I’m not feeling sorry for myself , and I honestly believe with everything I’ve seen or heard since Covid became a part of our lives I am probably one of the luckiest people ever. My husband was admitted to hospital on the 7th April with breathing difficulties , within an hour he was ventilated and in ICU . Then as many people know the nightmare begins .... he spent nearly 6 weeks in ICU fighting to survive . In the 40 days he was there his kidneys nearly failed and liver , he was filtered many times then he blew a lung 2 chest drains , heart infection and stroke but he did survive and eventually moved to a ward to learn to walk talk swallow eat drink and try to return to the real world . The statement ICU delirium was mentioned many times but my husband literally woke up in rehab ward a week after he was put there wondering how long he’d been there and what the hell happened ? In total my husband spent 3 and a half weeks in the rehab ward and they let him home . He is very lucky he is now on medication but not a lot , he has been home 12 weeks now and finally has put back on a stone of the 3 and a half he lost , he’s managed to drive again , been back on a bicycle , has got a really good appetite and no memory flash backs or nightmares !!!! So that brings me to the title above .......... as anyone who has had a relative in hospital will tell you those daily updates during the peek of Covid could sometimes leave you waiting over 24hrs at a time ! Despite not having to wait for those for a few months I still feel traumatised by them ! My husband didn’t have nightmares flash backs but I do !! The Covid has left him with a cough that they say he might have for months , but every little cough ache and pain he gets I start to panic !! I feel I’m caught in a time bubble of what did happen and what could have happened and don’t seem to be able to get out . I’m trying to get hubby , myself , and our life back to a normal that no longer exists ? I go back to the beginning and say I and hubby are so lucky , so many thousands of people had the worst outcomes and they will never have a second chance , but I need to shake of this back in time feelings I’m having and enjoy what I’ve been given ....... please tell me I’m not alone

My thoughts and prayers to anyone who has family in hospital ❤️

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Pandysgirls profile image
Pandysgirls
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11 Replies
Sepsur profile image
Sepsur

Hi Pandysgirls - that’s why we set up the relatives zoom meeting.

Many of us would agree that our families in many ways suffered more than we did, I was asleep for 2 months, my ordeal started then, my family’s ordeal had started 57 days earlier.

My wife cannot get images of the first time I was proned out of her head ( 4yrs later).

I still cough ( from ARDS & mechanical ventilations) - my wife still panics when I fall silent in a room she isn’t in. There are so many triggers - one that took me a long time to fully appreciate- you see - it didn’t happen to me on a conscious level - I know I was brought back from the edge, many times, but I was unconscious. I have since experienced different version of ‘near death’ which has unsettled my family once more. An ICU admission does not finish when you are discharged from hospital.

Do you want to try and lessen the level of anxiety you are experiencing - we run online yoga classes twice a week & a relatives drop-in all on zoom - why not try it out - many have found it’s done the trick 😊

Pandysgirls profile image
Pandysgirls in reply toSepsur

Thank you sepsur you have been a constant even when I and others were in the thick of it , yes I would like to sit in on the zoom meeting thank you ❤️

Sepsur profile image
Sepsur in reply toPandysgirls

You would be most welcome. If you email info.icustepschester@gmail.com - we will forward details of how to access meetings - it’s really easy & they are a warm lot 😊

Ferham profile image
Ferham

Hi Pandygirls.

Your post will resonate with so many of us, although our loved ones survived and still bare the scars in different guises, they are getting the relevant support. I actually felt as if I was having a mental breakdown, when my husband was in hospital.

I felt so alone and found support on here, my hospital had a fantastic liaison team, that tried to support, but when they were delivering the news they were it was gut wrenching and traumatic , it felt torturous due to the length of time it went on for.

Now he is home his mobility is improving but still needs so much support, it's mentally and physically draining.

Again like you I feel lucky in many respects, but think down the line it will take it's toll . You are not alone ❤ xx

DrARDS profile image
DrARDS

I really do echo your sentiments Pandygirls.

I don’t think the full toll on our own health (the relatives) has been realised! I was mentally shot to pieces and still have challenging thoughts at times. It’s ferritin better, but these experiences will no doubt be mental scars for life.

Dabofoppo profile image
Dabofoppo

My partner still gets very quiet and uncomfortable with medical scenes in TV shows iv had a cold for the past week and she made me go get covid tested immediately just in case. I feel like the toll taken on the family members and other loved ones is sometimes forgotten but I know that although I had a harder physical recovery and I still have emotional issues my partner suffers much more than I ever did emotionally.

RockRunner profile image
RockRunner

Completely agree with everything that has been said. I’m holding it together on the surface but fragile underneath, it doesn’t take much to make me break. I’m grateful and sad, happy and angry, guilty I couldn’t and can’t do more to help him, guilty I didn’t know he was so ill and get him into hospital sooner. I can’t imagine normal life again, it is mentally and physically exhausting caring for someone full time and having to do everything else and I feel as if I am holding my breath all the time. I’m so happy he is home but we have curveballs being thrown at us all the time, each week there is a new health challenge so progress is slow. I do know I am suffering from emotional stress, something I have never suffered with before and am trying relaxation techniques although not with great success at the moment! I think it will be a tough year or so for everyone, maybe longer, but it’s soo good to know we aren’t alone xx

FamilyHistorian profile image
FamilyHistorian

Pandygirls

Sepsur is so right just because your husband hasn’t had any mental issues doesn’t mean that he won’t nor in fact does it mean you are exempt.

I just read your post to my wife and she immediately had a flash back and I have have been out of hospital for 5 ½ months. She still listens out and now I just have to leave the bathroom door open rather than she be physically present.

She was apprehensive about going to the relatives group but now is a regular attender. There are no judgements and you are free to participate or not. It is really good to tell someone who understands how you feel.

I was 17 / 18 stone (I am 6 ft odd) before I went in and I dropped to 14 stone and then once home I lost a further stone but now I am nearly back to 15 stone.

I too still have a cough and found that 1) the yoga has helped - don’t laugh - it’s all about exercising the muscles because apart from the damage done by the trachy all muscles are wasted. There are yoga chants which sort of vibrate the vocal chords etc and I have noticed a distinct improvement.

2) I take a spoonful of honey each day and 3) it’s really important to drink a lot of fluids even if it does mean perpetually going to the toilet.

You may also be interested in my posts about my CBT especially the last one.

So we don’t live in the geographical area of Cheshire but we do join (zoom) in to ICUStepsChester- Tuesday night relatives, Thursday anyone, Monday and Thursday chair exercises and Wednesday & Saturday yoga. I have gone from nothing to do to almost a full diary!😂

Rach2Sym profile image
Rach2Sym

Pandysgirls

Your post and replies to it have been a help for me. We’re definitely not alone. My sequence of events with Covid-19 was the same as your husband’s (the same scares from different organs) though I was only six weeks in hospital, so not so devastating. My wife and our two children bore the brunt during the UK peak pandemic while I was unconscious in ICU. I am/was a very fit 72-year-old. The word ‘lucky’ is often used, but it seems to miss an essential point: the unbelievable skill of clinicians and our access to fabulously expensive equipment are what brought us through. I’ve put two stone back on, get out walking every day, use my bicycle etc. But the whole sequence was also an emotional roller-coaster for all of us, and it will lead to new life decisions. I experience similar persistent physical symptoms (painful throat, cough, re-flux, bad taste, lung damage) as well as emotional symptoms (emotional flashbacks, anxiety, anger and frustration at the blindness to the dangers of this virus). Going into town yesterday, for the first time since getting ill, I had a meltdown. On reflection, this was probably a flashback to the emotional turmoil of the post ICU delirium and despair I went through as I struggled to piece together what had happened to me? Or, was it finding myself surrounded by crowds who seemed oblivious to Covid’s awfulness? It doesn’t matter which. The news about various localised restrictions occurring around the UK also triggers my anxieties – this seems set to be the new normal. The point is that it will obviously take time for the pharmacological, physical, and emotional consequences to abate.

They will.

FamilyHistorian profile image
FamilyHistorian in reply toRach2Sym

I too am 72 but wasn’t admitted because of the virus. I came out mid March and still haven’t been in to our local town (oops city) we are maintaining “lock in”. The problem is that I look quite well but the mental wounds / scars don’t show.

Will we go to our local pub; I don’t think so.

Copse77 profile image
Copse77

The Reading ICU support for patients and relatives is a good resource for people reading this post and empathising through their own or their family experience. There are various resources in the website in addition to this link.

To everyone reading this Post I find this ICU site a great support. Thank you to all of you for caring and helping others.

readingicusupport.co.uk/pdf...

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