ICU help

[Lydroys14]

was in hospital for 4 months, 3 months in ICU , in a coma for 2 wks which they couldn't wake me and my family were told I was going to die the night I went in or within 48hrs. They were going to switch my machines off so I could pass, I had so many infections, I had sepsis twice, multiply organ failure, two collapsed lungs, blood clots on my lungs, two blood transfusions, phnomia twice and other infections but I survived and no idea how, but now am asking for help as i now have pstd as well am on a long road to recovery as i became totally disabled and am still learning to walk, bathe and going to the toilet on my own, doing this while still looking after my child , my nurse told me to join this group see if it would help xx

[Sepsur]

your story has a few more bells & whistles than mine but essentially we are very similar - not expected to survive & 90 days in ICU. The toll on our bodies takes a helluva long time to come to terms with on a physical, emotional & mental level.

Are you having any treatment for your PTSD?

Our group - which is Critical Care Support Network, has numerous things we can offer to help you rehabilitate.

For the last 6yrs, we have run a weekly exercise session. 4 yrs ago, at the height of the pandemic and within a month of the first lockdown, we went on line and now have members all over the U.K. All of our sessions are on zoom - a godsend for those of us too weak and reliant of others for help to get us to a location - you can access help from the comfort of your living room.

We run 2 weekly drop-in meetings and 8 weekly graded exercise session run by professional physios & trainers. You can attend for as long as you like - there are no time limits on how long you can attend. All sessions are free to you - we fund everything ourselves. Check us out cc-sn.org

Recovery is hard but made much easier with the support of others who have been through your ordeal.

[Lydroys14 in reply to Sepsur]

Thank you for replying, I just feel so alone all the time as no one can understand anything I have been through, they just tell me how they feel and never ask me how I am and I know it sounds silly and am a grown woman so it shouldn't bother me but when I have tried talking about things it just gets turned around to them so now I just don't bother. And it was my nurse who said I had PTSD and I pinky promised I would call my GP on Monday see what he thinks, just thought I would give this a try while I wait.

[Lux95 in reply to Lydroys14]

You aren't alone here at least. I know that doesn't help in a practical sense, as it is family, friends, and others we see frequently that we wish could understand. You have been through much more than I have (1 month ICU), so you have nothing to feel silly about. The aftershock of an ICU is real, and it isn't insignificant - less for some, more for others, but all of us here are living with some form of residual effects.

My wife understands a bit more now, but it has taken a couple of years of seeing how this affected me on a daily basis, and hearing me attempt to explain it. Others don't seem to, and just say "that happens to me all the time" (forgetfulness, etc). So like you, I don't try anymore. If you can join the group Sepsur mentioned, I am sure it will help; or if you can find others locally to talk with, that helps too. Whether those are an option or not, it helps to post here. It's the only resource I had, and it has helped just to post from time to time. Do you have family or friends that could help at home from time to time? Our kids were both late teens-20s, so I didn't have a child to care for. Is there someone that can help you locally? I know it isn't always possible, but you need time to recover, and it is not easy without others to help.

[Lydroys14 in reply to Lux95]

I have a bf but not for long he spent spent all my savings and my house is where I have to totally re decorate through out now he ruined it, i cant live like this so ur very lucky wish i had that. I don't see family anymore more but not cos of them ish but other things they R dealing with and me also, plus what they R saying but not true. Am wanting to do things myself, was very independent before this now and now am a child. Do u forget things now your better I know I do, people play on it as in I say something they say I didn't but I know I did.

[Sepsur in reply to Lydroys14]

Approximately 30% of ICU patients show symptoms of PTSD or PTSS.

It rarely goes away of its own accord. Please seek professional help - we’ve all been through enough without having to ‘brave it’ out. Misery is optional 💙

[Lydroys14 in reply to Sepsur]

Thank you for that am gonna try, I don't wanna die nor feel guilty for survival x

[Sepsur in reply to Lydroys14]

Good on you

[Lydroys14 in reply to Sepsur]

Calling docs in the morning x

[Copse77]

readingicusupport.co.uk/pdf...

The above link and other resources at that site may be helpful for you.

[Lydroys14 in reply to Copse77]

Thank you xx

[CCXLI]

I'm sorry to hear about your journey. Similar here, 8 months in hospital, 7 in ICU, ventilated, coma, life support. I've been home 8 months now, and it's still hard to do anything, but the main issue is mentally. You feel like no one 4 there is no empathy to the situation. I've been diagnosed with PTSD and currently getting therapy.

I would recommend definitely looking at joining us on the Critical Care Support Network as Sepsur mentioned. I found it so helpful speaking to others who know exactly what we have been through. There are many times I've heard others speak on a call and think "wow I didn't make that up then!"

[Lydroys14 in reply to CCXLI]

Wow am so sorry but sooo happy Ur still here but I can't forget my guilt, seeing people die all around me who wasn't as ill as I was kills me and even now reading about kids dying of things I had it's not fair, having a child makes me carry on but so much guilt surrounds me x

[Lydroys14 in reply to CCXLI]

Docs given me anti depressants to cope just hope it works plus mental nurse calling me soon just hard am trying to do this without involving family and friends x

[BigH63]

Hi sounds very similar to me with your issues bi lateral pneumonia, collapsed lung, sepsis, sepsis shock, multi organ failure, step A accute kidney injury, on dialysis, two heart attacks, etc etc. not expecting to live the first week. But like you I’m here and trying to recover. I was in Jan2023. This is a marathon not a race , I’ve got moving and learning the things I used to do but still struggling with both arms, legs and walking any distance at all, still trying to get better, recover. I I’m just starting to get help for my PTSD now as it never went away. We all move at different speeds in recover but when you look back after 6 months you will see how far you’ve come. Keep a daily diary how things are progressing.

The CCSN is a good place, everyone has been there so completely understand how you feel with compassion and understanding

Family don’t get it I still struggle talking to family as it always turn on how they feel, but sometimes that’s because it was so painful for them at the time they don’t want to revisit it don’t forget their journey started went you went in yours start went you woke and got home.

Hope you come to our meetings

[Lydroys14 in reply to BigH63]

How long does it last? My friends and family expect me too be normal by now, I try my hardest but am screwed for days if I try to walk, they say am lazy now and no matter what I say it's never enough, only been home since end of July and still can't walk but it's not good enough to them. I was a very strong woman but not anymore, hell I jumped from 15.000ft out of a plane 5/6 yrs ago, nothing ever scared me apart from spiders, now am terrified of everything xx

[BigH63 in reply to Lydroys14]

Hi. I completely understand, my family just don’t understand at all, but that’s thier problem not mine. My family seem to think that you survived you got out and that’s it get on with your life. For them it’s like having a broken bone and it’s now in plaster so you’re fixed. This could not be further from the truth, I get told why can’t you walk with me and play with the grandkids or look after two boisterous 5-6 year old and run after them ? They don’t understand it’s a struggle just getting out of bed in the morning. Or the friend or neighbour that knows what happened but then says o you look well when they see you, if only they knew the half of it.

How long does it last who knows I’m 18 months out now and still struggling to do things I’m still in physiotherapy I’m just starting with MIND to help with PTSD etc I try and doing little things every day and just hope I jump another hurdle at the end of the week. My analogy is, it’s like climbing the stairs and you get close to the top stair and something happens and you get dragged back to stair two then you start again, but I never get to the landing to launch for the next set! But I have hope and determination to make it to the landing

All you can do is take each day as it comes, don’t look to where you were before this as that might never come, but look at how far you’ve come since coming out of ICU.

I used to run marathons : cycle miles 25-30 walk long distances but that’s not me right now so I have to put that at the back of my mind and concentrate on the now and how I can improve what I’m living with.

Good luck and do t give in keep pushing the boundaries

[Lydroys14 in reply to BigH63]

Am really trying and I know pushing myself I shouldn't do and I also I never will be me again and now i dont know who i am or who i can be x

[Lux95 in reply to Lydroys14]

Send family and friends to articles on PICS (Post Intensive Care Syndrome) such as this one: my.clevelandclinic.org/heal...

And if it would help, feel free to copy my profile story and send it to them if you think it will help. I've been out for two years, but you've just started the recovery process. You need your family and friends to help if they can and will.

Most articles focus on our time in the ICU, but rarely talk about the months and years after. That's why I came here. No one else understands. Sometimes family and friends need to hear/see others talking about how much ICU still impacts us years later before they believe we aren't being lazy or selfish.

[Lydroys14 in reply to BigH63]

Sorry for Ur struggle so happy Ur better now am like most, am in constant pain I need ops but I cant cos i wont survive do its hard x

[Signingfun]

Lydroys14,

Congratulations you have survived! I remember having to relearn how to use all my muscles too. That was 14 years ago, rehab was exhausting without having to raise a child in the midst of everything physically happening. Most people understand a cold or the flu, within a few days you recover and that's it. People do not understand being sick for that long, much less having to recover. Also, it seems people do not understand, when you're released from the hospital and/or rehab you are not back to "normal". I had a difficult time in rehab, but I learned progress is progress no matter how small the progress. I agree, this is a marathon not a sprint. Then there is the fatigue... I still get so tired it's hard to think much less trying to process psychologically what happened.

[Sleepalotmore in reply to Signingfun]

Sorry to hear you still feel tired. But it has reassuredme that I'm not imagining it! I was in hospital for 3 months, 6 weeks icu snd one month on ECMO. That was 5 years ago this January. 2019/2020. I was expected to survive, only fought back on 5th attempt to get off ECMO. Your tight it's a long road to recovery. One that I feel I'm ever going to complete. I still feel tired easily and sm a lot weaker physically than I was before. Only in the last year have I started to accept his is the new normal for me. Rather than feel depressed or feel like a failure for not returning to the old fit me.

, I'm now realising this isit abd I have ti be grateful thst I'm alive at all.

All us icu survivors have been through a lot most of which nobody else could begin to understand. So, don't beat yourself up.

[Lydroys14 in reply to Signingfun]

My mum is like I should be doing more than u R. I wish I could but no one will ever understand. I even asked my physio when I can run and prob 6 yrs time x

[beardy_chris]

If it helps to tell your story and have someone listen to you, phone Samaritans (see samaritans.org for contact details). You don't have to be suicidal and they won't turn the conversation to their story. You can tell your story as many times as you like and they won't get bored. Sometimes it helps to tell someone to get the thoughts ordered in your own head. I found it helped me to write down everything I remembered - but your mileage may vary, of course.

It takes time but I'm sure you'll get there. You will be different, of course, but you can regain happiness and acceptance of what has happened to you.

[Lydroys14 in reply to beardy_chris]

I call them, they R great am not suicidal I want to live just hard x

[trotter123]

Ten years ago, I was in a very similar situation to you. I was on the floor. Last month I celebrated the tenth anniversary of my being an ECMO patient by completing my first ultra running race in two decades. Was I knackered at the finish!!

How you progress with your recovery will largely be down to yourself. If you want to get back to an almost normal life then you are going to have to set your mind to do it and work very, very hard to get there. My advice to you is to get as active as possible as soon as possible, and keep pushing at your boundaries.

My poison, as it was before I became ill, was running, but any activity that gets you active will do.

So, engage with your Physios with renewed enthusiasm, push yourself with the walking as hard as you can, move, move, move!

Do not expect miracles. It will be baby steps all the way. You can expect setbacks along the way. Just never give in.

Ten years on, from being very near to death and a total physical train crash, I live a near normal life. There is little that I cannot do for myself. Sometimes I get a little tired and at 70 years of age I have to manage my expectations, but every single day I am eternally thankful for the team of doctors, nurses and many others who gave me the chance to live.

Good luck.

[Lydroys14 in reply to trotter123]

Thank you for Ur story, I just wanna be the mum I was not the way.i am. I know it takes time but it's time I don't have x

[trotter123]

Just do your best Lydroys. Amazing things can happen.