After many posts on here I am struggling with my own recovery . In ICU Dec 2022, I had a lot of trouble getting follow up help but finally at 6 months saw follow up team and psychology help was given. Despite her input I'm struggling with the fact I start to build up and then crash again both physically and mentally. My memory and cognitive skills are getting worse and physically I hit the wall each time I try to build up . I was given a booklet on ME /CFS pacing by my psychologist but though it rings true - that the crash comes several days after overdoing it and takes you right back many months, I'm struggling to know what the way forward is - and in face if there IS a way forward. Every day I wake up with nothing in front of me, in the early days I had projects to keep me going ...little things like tidying drawers etc but now thats all done I don't know quite where to turn. Talking wears me out very quickly so limited to seeing people, and I am very isolated as live on a farm and can't drive at the moment. I have twice tried the bus into local town but was too much to cope with. I know I'm a lot better than the first two months which were a total nightmare but I'm really hoping someone here recognises this stage and has some ideas or encouragement to show me this is normal and there is a life beyond it!
Has anyone else hit the wall at 8 months? - ICUsteps
Has anyone else hit the wall at 8 months?
I lost loads of things after ICU, none more than my confidence & social skills - joining a support group helped me - they spoke a similar language which enabled me to move into the larger outside world
I will do that thanks! No-one understands as I look 'normal' and 'surely theres something terribly wrong if you're not better by now' is the general concensus!
In some ways I was never ‘better’ - I remain different - defiantly different 💙
I agree with Sepsur that joining a support group would help. Talking to a mix of other people, some earlier in their recovery and some further on, puts things into prospective. There is a zoom support group run by the Critical Care Support Network every Thursday at 7:30 BST. You can get the login details by emailing info@cc-sn.org. You don’t have to stay for the whole meeting if it’s too tiring. The CCSN also run zoom exercise classes, which are personalised to your needs. Have a look at cc-sn.org/exercise-group for further information. Finally planning things to look forward to is important. It doesn’t have to be anything massive, just simple things like having a new hair cut or planning to have a meal out. It just helps to boost your mood.
Thanks I will link up with those. The exercise classes would help too as the physio I saw was LESS than useless. 'Go for a massage ' was his advice. I wanted advice on building up my strength and stamina!
Hi! I'm also 8 months post ICU. I was in coma for 8 weeks but in hospital for 4 months all round. This recovery has been beyond difficult this time round ( I was also in a coma for 6 weeks 3 years ago but found the recovery "easy"). I too feel like I've hit a brick wall. I am walking, driving, cleaning, I'm pushing myself constantly but I am so tired, I can't actually be bothered doing anything, I just want to lie down all day long but I know if I did that I would literally get even worse. I don't even want to socialise because like you, it drains me, I'm too tired and just want to be left alone. I can't function mentally either, feels like a fog over my brain. I hope you're ok xx
I was 'only' in ICU for 6 days , but am assured by a research group leader I spoke to that a shorter time in ICU still doesn't necessarily mean you recover any easier. I did have CPR and having sent for my medical records discovered I stopped breathing in ED and had delirium in the unit. I know I'm lucky to be alive but its hard! I had to surrender my driving licence because I had a seizure and though I've sent for it to be renewed my head couldn't cope with driving yet. The loss of independence is overwhelming. Am back to pacing again after 3 major setbacks..we unfortunately live in a very hilly area so inclines are everywhere and they are very difficult for me. I was SO fit before, could walk miles and was always very busy in a full time volunteering role, as well as working on our farm and in our very large garden. I have always hated sitting down so it goes right against the grain to 'rest'. I miss people, but its all too draining as you say. I get very tearful as its all so endless. Last time I spoke to my psychologist - 4 weeks ago ...I felt I'd turned a corner. But had obviously overdone it and crashed a few days later. Luckily I have an appointment this week. Am going to chase every bit of help from support groups people have mentioned . Thank you for your input..every little helps!
Oh gosh yes, 6 days is still very significant and this is totally normal, 6 days or 6 weeks, you're allowed to feel all your feeling. It's hard though isn't it, we are trying to push ourselves beyond our capabilities because we so desperately want to be like we used to. We know in our heads we should take it "easier" but that is certainly harder than said! Xx
Dunkin Doughnuts cold coffee sold in supermarkets feels like it has more caffeine than over the counter. Try it daily to make you sharp again. I am recovering from a sepsis coma after dying twice.
Everyone is an individual and what is right for someone else may not help you. Are there quiet activities that you can enjoy such as being outside on your farm in fresh air. There is no set timetable to impose on yourself. You say talking is tiring and it may be that you are a quiet person. I too find certain situations overwhelming and need space away. I hope you find peace and know that it’s okay to go at your own pace and not measure yourself against others.
See my reply above...from being the busiest person around I'm struggling with the person I've become! One thing my psychologist said was 'you might not like the new you' . She has given me a book called 'The Reality Slap' which tells you how to cope when life is not as you hoped. I've read it once, then thought I was improvong...after several crashes - physically and then that sends me spiralling down mentally - I need to start from scratch and read again! Thank you for your input, it all helps with the struggle!
Hi there,
So sorry to hear your struggling at this stage of your recovery. Fatigue, physically and mentally can often be the most challenging symptom to tackle following an intensive care stay, but its great that you have recognised this and are motivated to reach out and try and do something about it. Here at Addenbrookes Hospital in Cambridge, we also run a support group online (as well as face to face) and we actually have our wonderful ICU occupational therapist lead coming to speak about fatigue on the next online group on the 18th October 7pm-8pm. If you would like to join us, and like others have said, just listen to others with no pressure to contribute, then email the critical care specialist nurse team at Addenbrookes on cuh.criticalcarecns@nhs.net for the log on details. With fatigue, it is often the way we manage it at different times, that can help. On the Cambridge University Hospital website, there is a great fatigue management work book created by our ICU Occupational Therapists, that you could take a look at also, here is the link: cuh.nhs.uk/patient-informat...
Keep taking care of yourself as best you can and be gentle and patient with yourself, you deserve it!
Thank you so much. I will definitely book in for that meeting and download the booklet.
I'm not a medical person but it took me nearlt 3 years to start becoming my own advocate again - taking charge of my own life. I had no support when I came out of hospital just as we went into lockdown but it did join a support group now known as Critical Care Support Network, where we have access via zoom to weekly drop ins and daily exercise classes. An opportunity to talk is really good. I also paid for CBT which helped me bulid strategies for every day.
I am finally get a response to meet some of my medical needs including managing pain where at last it was recognised that I have PTSD. Recognition was a major step.
It has also helped to recognise, for myself, that I get depression and I'm working through different ways to manage it - not always sucessfully.
BUT things are getting better setting achieveable targets i.e. things I want to do helps otherwise the monotony of taking tablets, wearing a CPAC mask and not going out too often can get on top of you.
#It's good to talk.
The lack of support was appalling from my hospital, as was the care on the ward after leaving ICU. I was back in A & E 24 hours after discharge , sent there by my GP who now tells me she didn't think I was going to survive. My partners daughter is an ICU sister in another hospital and it was only though her that I heard of ICU Steps and found out about follow up clinics. There was no diary kept, I have sent for my medical notes,- which were an eye opener - but theres still a gap from the ICU stay as they say 'its on our computer so not available'. I won't give up as I know I was given drugs that have caused damage and I just want to know what happened. I will def join the support group. My partner, family and friends just don't get why I should need this but will push on! I have never been someone that was depressed but am definitely recognising I'm struggling. Thank you for your reply.
They should provide your computerised records. At one hospital it was mixed and the fully computerised and I had all of them.
Don’t forget that your family and friends also went through their own trauma and have to find their way to overcome their issues. Unfortunately some people not patients don’t understand the recovery process all they experienced before are the films where someone jumps out of bed after their coma and is back to normal straight away.
Thanks for assuring me that ICU records SHOULD be available...I went through PALS and they were with me within the week! So much info that my GP should have been given let alone the cardiologist who had no access to these. So many drugs given, so many problems with heart rate and delirium, none of which my family were aware of. I still need to read through slowly again and again as there's a lot there ...but explains an awful lot! What sort of system did we have that there's no holistic approach looking at the whole picture of an ICU stay? Many many wasted appointments with GP and cardiologists and endocrinologists because they didn't have access to this information!
Unfortunately the NHS works in "silos". Im under 6 different disciplines at the moment left hand >>>>>>>>>>>>>>>>>> right hand
For those of us who have been through it we are very aware that everyone’s rod to recovery is different, and difficult. My surgeon told me when I woke up after six weeks that I had died been brought back round and although the road would be tough there was no reason that I should not recover. I am a little older than you any little adventure was about 2 and a half years ago. Everyone told me it would take two years to recover from everything that had happened to me. And I like you expected it to be quicker. I can tell you that before my adventure I was travelling all over the country conducting and after I could face neither mental effort or the physical,effort.
It was worth looking at the two aspects separately as they create a vicious circle were failing in one cause failing in the other. And if you can manage to concentrate on one at a time after a little they will probably join up.I couldn’t think or move straigh and because of this I didn’t want to meet anyone. Walking my dogs helped enormous;y. Not very far to start with and only ten minutes.But the ability to this gave me a bit of self respect back and with that self respect the willingness to talk to people.
I am now back to conducting playing and writing music again. Although after 8 months I had not lost g stopped using a zimmer frame. The magic words to me were ‘ never look forwards at how far you still have to go, look back and see how far you have come. It’s not always straight forwards progress you must not expect that cos it doesn’t work that way but be aware of progress and be aware that much more is possible. But give yourself a bit longer before you allow yourself to get down
Thank you for that ...sounds hopeful . I have just in the last hour had the devastating news that my son in law collapsed and died suddenly. a few hours ago ...so I now have my daughter and grandchildren to support through this dreadful time. Let's hope I can find the strength with help from this wonderful forum!
I am so sorry to hear of the loss of your son-in-law! I will be praying for you and your family.
After a year and a half, I was just commenting recently to someone about hitting a wall that is somewhat hard to describe to those who haven't been through an ICU stay. The wall may move further over time, but I've noticed it is very different from how I could formerly push myself in exercising - i.e. there is no longer that good but tired feeling of pushing harder Just a full stop. Maybe sedation and other medications inhibit our adrenaline or dopamine.
I typically will have to sleep more the next day after a busy day, and most especially a stressful one. Stress seems to bring me to the wall more than physical activity. I've had to distance myself from most stressful situations, including large groups, changing my career goals, and being methodical rather than ambitious about physical exercise.
Be sure you take time to rest often, especially during this terrible time of loss for your family.
Thank you for your kind reply and your understanding of the wall is very helpful!
I'm seven months in after a 8 week induced coma causing nerve damage and a bit of brain damage as well, progress is ice berg slow and there are big crashes but it does get better in the long game... Concentrate on the good days and concentrate on the wins... It will get better but it's a very long process....My thoughts are with you...
Paul at the Steampacket Inn Knottingley....
Thank you Paul ..I'm struggling with this family crisis now and hoping I have enough strength to get myself well enough to help ...
So sad to read your post and hear of your isolation. My husband is just home from ITU after 120 days there and he appears to he facing the same issues.
Keep strong
Reading this describes my son exactly. He has been home for 7 months now and recently turned 20. He was in a coma for a while following a car accident and has been left with brain injuries amongst other things. To look at him, he looks normal, like any 20 year old and it can be frustrating for him because he cannot explain how he feels because he cannot make sense if it. One activity will tire him out for days and he gets frustrated because he feels he should be getting better and not worse. I think as time goes on your expectations also go up but its important to remember that you have come long way and it will take time. Dont rush it and take it a steady pace. My son has stopped talking to friends because he doesn't feel the same but I can probably see his progress more than he can. Dont be hard on yourself, this is a very hard journey but a steady pace will get you there. There is no timescale as everyone is different. Try doing things to uplift your mood like watching a comedy, talk to someone even if it over the phone. Build things up gradually. Just remember where you were at the start and where you are now, you are heading in the right direction it might take a little while but you will get there x
I identified with you on everything you have been through, I spent nearly two months in icu after contracting covid. my journey had been super crazy & coming out of it it was hard for me to distinguish what was real from the delirium I went through coming out of this I also lost my self confidence and suffered with post dramatic stress disorder, anxiety, as well as all the health conditions related to long covid.
I have set up a Facebook page to have deeper conversations & specialist guest speakers my Facebook page is ⭐️what doesn’t kill you makes you stronger.⭐️ ourinvisibleworldwellbeing@gmail.com
My boyfriend isn't waking up from a coma, has anyone experienced this?
where can you get help to deal with what’s happened..?
Please tell me I’m not alone ?
And the doctors treated me like I was crazy !!
Post ICU Struggle
