Hi everyone. I was in intensive care for 10 days in Feb after falling suddenly ill, on a ventilator, a month in hospital in total with another month of acute care at home visits. Had horrific hallucinations and a pretty traumatic time. Have quite extensive nerve damage in my torso from lung surgery so I'm physically not how I was. I went back to work in Sept and I'm still struggling. I'm exhausted all the time, my cognitive ability is still not what it was, but everyone seems to think I'm back to normal. I'm worried about my job, though they're being supportive.
I'm feeling quite alone, in terms of anyone understanding what's happened to me. It was traumatic for them at the time but now, no-one seems to realise that I'm still not yet who I was before.
Does anyone have any advice or words of wisdom about how long it will be before I feel back to 'me' again, please?
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Skinnerj190
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Hi, everyone is so different so it is hard to say a length of time. My husband was in ICU for almost 3 months and another 2 and half in hospital and rehab. He came home in late January and still doesn't feel ready to go back to work. He stills gets very tired and struggles with his cognition. It is easy for people on the outside to assume that someone has fully recovered but it can be a long road of recovery.
We have found the Critical Care Support Network extremely helpful. A wonderful and supportive group of people. There is a Facebook group as well as support online via Zoom which I would wholeheartedly recommend. It has made such a difference for us x
I know exactly how you feel . Unfortunately people seem to think as soon as you are out of hospital you are back to normal . I had a ruptured brain aneurysm .Had the most awful icu delerium with hallucinations etc and as much people say they understand they really cant. I would speak to your doctor and if you have mind in your area then try and self refer . You have to keep at it unfortunately but you will get there
Hi Skinnerj190 - what you are struggling with is fairly standard. It would seem that it can take a sizeable portion of us an unbelievably long time to improve to the point where we feel ‘back’.I always found the gauge of 10 days of recovery to every day in ICU really healpful - what is important to stress is that we are all different & we all mend at different rates, our conditions are often heterogeneous meaning our recovery journeys are very person specific. My ICU recovery has been eclipsed by my cancer journey, for instance. Www.cc-sn.org run a zoom drop-in Thursday night at 19.30 - if you are ever interested
It sounds to me like you are doing great. Even if you had never been in the hospital, it takes a while for your body to get used to working after you have been out of it for a while. Stay focused on the positives and you'll get there.
Hi. I was in ICU twice last year firstly for 4 weeks and then for 10 weeks this was followed by a further few months in care. In total It was 7 months before I was home. The lasting effects are fatigue and an abnormal kidney function. I have difficulty walking any distance and simple tasks leave me tired. I am not able at the moment to work. Close friends and family are supportive and have regular consultations with my gp, as well as follow up visits to hospital.
Hello Skinnerj190. I go along with all the replies so far. Physically, fifteen months after getting out of hospital (ICU, High Dependency) I’m doing fine, but still annoyingly short of breath, and finding some simple DIY tasks too difficult. The combination of Covid, ICU with its drastic drugs and physical stresses, and the shock of having gone through a life-threatening experience, has altered ‘who I am’ in many subtle ways. Patterns of emotions, motivation, reactions, attention span etc are changed. I’m 74 and retired so, mercifully, I don’t have employment and income stresses. You don’t say what your work is. Feeling their support must be very important. Don’t feel alone. People who haven’t been through the whole ICU thing – delirium, catastrophic loss of muscle etc – are unlikely to understand because they see you apparently getting on as before. This website has been transformational for me in showing me how ‘normal’ my experience has been, and in explaining relevant medical issues. What a fantastic resource the internet has become – it takes only a few hours to get feedback from so many people who know what we’re going through. For me, a healthy lifestyle – good routines, getting outside for exercise and fresh air, pursuing interests – has been fundamental, but easy to do because that is how I lived previously. Each of us recovers at a different rate. You seem to be doing well – to have got to where you are is impressive.
Thank you, it is reassuring to have so many replies from people with similar experiences, although I wasn't admitted with Covid. I had lung surgery due to an empyema that had reached the point of a critical infection. I returned to work in September full time as a teacher. My school are being very supportive but it's completely exhausting physically and cognitively. I'm a single parent also, so have no respite when I get home! I hope to be somewhere back to how I was before eventually. Wishing you a continued recovery
I know that it just takes time. I watched my dad go through this as well. He had contracted covid in March and was fine and had even went home, till he developed blood clots in his lungs. He was on a ventilator 3 different times, septic shock and pneumonia. He’s in rehab at the moment and has just been taking steps in the last couple of weeks. You can tell every once in awhile he still has a tiny delirium or has some brain fog. That should even get a little better after he gets home. It just takes time for the body and lungs to heal after being through so much trauma. Give yourself some time and take it day by day. Eventually, it will get better for ya! Prayers to you!
Hi, as a few on here know, I was in coma 7 years ago. Feeling very alone I stumbled on ICUsteps and chatted with people who had similar experiences. Eventually I went to the group meetings and it changed my life knowing I was not alone.
You have taken the first steps by talking on here, it will get better. Good luck
Hi, I would agree with what others have said. I did a stint in ICU nearly 18 months ago with Covid and came home very weak and a further 3 months off work before I went back to a not very physical desk job. But it was hard and I did a phased return over 2 months and probably another 3-6 months to build up the physical, social and emotional strength to deal with all of the day to day stuff at work and be able to function in life generally. I’m lucky that my employer is very understanding and supportive. Yours sounds similar and my advice would be to keep talking to your employer and ask them what additional support they can give you. And pace yourself generally - it takes time and it’s very easy to push yourself too much. I was still having physio a couple of months back for nerve damage in my right arm which still isn’t close to 100% normal and I’ve resigned myself to the fact it never will be! Good look, stay strong and hopefully take some comfort that there’s a bunch of people here who have gone through very similar experiences Lee
Thank you Lee, while I wasn't in ICU with Covid (had an empyema, pneumonia and sepis) your journey sounds very similar. I'm just really tired of being tired and in discomfort! My job as a teacher needs me to be on form and I'm simply not. I never realised how much this would all be affecting me, 8 months on.
Hi. Everything you you said resonated with me. I was in ICU with covid in April 2020 and on a vent. The feeling of isolation was strong. Long story short, I set up a zoom-based support group. We meet fortnightly at 7pm on a wed and our next meeting is wed 13th Oct. We all understand what recovery is like and find talking to each other helpful. we also have a laugh! If you would like to know more or join us, you can dm me on this site. If you send me your email I can send you details on the group and the zoom invite.
btw, I agree with the feedback from others. Whilst our recovery contains many common features like fatigue and cognitive issues, each person's journey is unique. I found comparing myself to others is just a route to anxiety and concern. For me, it is better to take each day as it comes, whilst managing things like exercise and fatigue as best I can.
best wishes, Pete
Can you please send me an invite to the zoom meeting even though it’s my husband that’s in icu do I put my email on here
hi. There is a message function on this platform. I have messaged you my email address. If you send me your email via the messaging function, so it is private, I will send you details on the group and the zoom link. regards, pete
Hi, I was in icu/ECMO etc (8 weeks in hospital total) beginning 2019 and I would say for me it was 1 year to physically recover (I was/am a dance teacher so pushed myself quite hard-in my parents opinion too fast) at least 2 years for mentally and emotionally, even now I find I tend to over commit & then realise I’ve double booked myself & forget things-but that might be age, I’m 50 now! I do not jump as much at loud noises & I can now walk locally in places that featured in my delirium dreams without getting freaked out. I was doing counselling before being ill so had that to go back to afterwards which was a great help mentally. But it is all ongoing, my now 10 year old has only now started talking about the time I was in hospital & what it was like for him & his brother. I find coming on here helps, not as often now. The hardest thing I found when going back to work & in to real world was that physically I did not look like I had been seriously ill etc in hospital & trying not to get upset when people said I looked good/fine when I felt knackered , foggy & still living with the memories & vivd dreams etc. Some people don’t want to hear about it because it freaks them out & sometimes I just had to stop telling people about my experiences as they would burst into tears in front of me! Be kind to yourself, tell people if you can that you are finding it hard. I’m finding it hard not to shout at people for not wearing their masks on public transport, but that’s another story! We are all here for you.
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Lee
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