Hi all.I was in icu hospital for 3 months this time 4 years ago with acute respiratory failure and pneumonia. I was on ECMO for 25 days with 4 failed attempts to have it removed before I finally managed without it on the 5th try. I experienced all the common effects of this , learning to walk again, muscle weakness as well as fatigue , delirium, sleeplessness, etc, etc.
What I would like to know, is, does anyone still feel easily tired and weak this far slong the line?
I still don't have the same enthusiasm and energy that I gad previously. It's not as frustrating as it used to be, more annoying and I'm impatient and want to be hoe I always was before I got so sick.
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Sleepalotmore
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yes because I am altered by critical care for ever. Equally I believe incrementally I improve everyday although the aging process is working against me. I take longer to recover from everything too. At first it was an impossible idea to ride a bike, for instance, balance issues for one & stamina.
I can now ride a bike, run short distances, climb an assault course with my young nephews & nieces etc etc - all of these were almost unthinkable in the first few years. I am 7.9yrs out.
Because ( I doubt) we have ever met someone who has been seriously ill in ICU for a prolonged time - we have nothing to compare it with - normal has to be exchanged with ‘what is usual’
This is very interesting as it nearly mirrors my own situation. I was in ICU for 3 months during this period three years ago.I was on ECMO for 31 days, with ditto numerous failed initial attempts to come off.
My third anniversary of coming home is late Feb and I am concerned too about my energy and fatigue levels. They are nowhere near my pre-covid illness levels.
As well as feeling weary by late afternoon, there is a muscular or skeletal ache after the smallest physical tasks.
I agree it is frustrating as there is a cognitive fatigue element too, as I am surrounded by unfinished books and half-watched films etc. Hopefully time will prove to be a continuing, but apparently slow, healer!
I am only 12 months post a much shorter ICU stay and continuing to struggle with mental and physical exhaustion. I was told my shorter stay didn't make it any easier as my body had more or less shut down and nearly died twice. I've now had covid over Xmas and what a shock that was ...2 weeks in and feeling am so weak and unwell. I feel like my life has been taken away and despite psychotherapy am finding it so hard to accept. I've written on here before that she told me I might not like the 'new me'. I'll be 67 next week, and lost all of last year . Sepsur...saying you can now ride a bike which seemed unthinkable ...gives me hope . But I do struggle daily with trying to build up...I've written here before about feeling I hit a wall at 8 months . Now this covid has knocked me right back to a very low base. I'm really hoping this is post viral fatigue...both my partner and I were knocked for six by this virus...the first time for us both. I hate to think what it would have done to us without vaccines...
Oh yes. I was actually considering posting asking about this as well.
It was 2 years ago just two days ago when I went to the ICU for a 4-week stay with 3 types of pneumonia. Similar experience in the long recovery as you and others.
I go for walks and try to exercise, but can't seem to gain much stamina, or at least what I used to consider stamina. I used to run several miles a day, though that had dwindled a bit before getting sick due to age and injuries. Now, there seems to be a "wall" unlike we used to push through during the normal stages of increasing running distance or exercise reps. Now it feels like my body simply has nothing to fall back on.
I have little enthusiasm for anything and can't focus on anything for long. I fall asleep almost every time I try to watch TV or a movie, no matter how long I slept the night before. I dreaded getting another cold and cough, and now have had a very mild one for 6 weeks that hasn't helped my confidence in recovery. I stay up nights because I don't want to sleep. Then when I do, I don't want to get up. I sleep more, but feel less energetic than I used to.
I can seem some improvement since the first year, but perhaps we are fooled by how quickly we relearn the basics - standing, walking, etc - and just assume the rest will move as quickly, but it doesn't. I also sometimes wonder if sedation wipes out some of our bodies' ability to draw on reserves, adrenaline and/or dopomine.
I guess we just have to take the slow, incremental improvements as they come, and just keep doing the best we can.
I am coming up to my first anniversary on the 8th of this month.
Everything all the people above have mentioned resonates with me also, yes although we learn to walk again get up off of sofas and the bed, the fatigue , moving limbs that did not work as they did before being admitted, memory loss frustration don’t seem to subside. Before my illness (see my journey) I was cycling 25 plus walking 10mies , swimming 2-6 miles a week are a long distant memory. Im now only able to cycle a short distance, walk yards not miles, swim .6 mile all with total exhaustion after. I concure with Lux95 concentration is hard I’ve got lots of half started things and noinclination to get them started again.
I hope for all of us things get better but the words new normal ring in my ears as I keep trying to push my limits.
I’ve set stretched goals for myself this year, loosing weight, more exercise, and trying to work on my concentration if I can.
Good luck to all and
Happy New Year to all of us surviving ICU patients.
I also wish there was more understanding out there regarding ICU recovery....I am now getting really fed up having to explain why I can't do things despite looking 'well' . These groups help immensely but it's still a battle we have to fight on our own when faced with the same old comments....🤷♀️...if you have a stroke , heart attack or cancer there is always plenty of understanding. This really has to change for the up and coming ICU survivors ...hospitals need to discharge patients with far more resources to get through this....all I got was 'don't do any vacuuming ' ....ridiculous advice as I couldn't even stand unaided!
Totally agree, I have even been accused (after the usual ‘ you’re looking better’ comments) of using my walking stick - which I still need for residual foot drop and fatigue - as a ‘comfort prop’.
It is really frustrating, and no-one wants the health issues patiently explained to them, somehow they know best.
Totally get that! We look well snd get on with life as best we can. To others we appear back to how we were. I often feel like I'm making excuse to get sy, but tats dar from the truth. Just want people to understand that I'm just no longer capable of a lot of things! My most recent experience was going on a school trip to a London museum. The journey on trains and tubes plus walking around the museum and the journey back to school. By the time I got home I vould hardly move! I ached badly from head to toe! I've now explained to the school that I can never do those type of trips again. Fortunately they have been OK with it. But I do feel like I'm just 'wagging it'
I wasn’t as poorly as you were but I was intubated in ICU and I don’t think I will ever be the person I was before - neither physically nor mentally. It was 6 years ago for me and I have come to accept this is the new me. It’s not easy though and it’s a process. Some days I am more accepting and tolerant of my limitations than others.
I wish there was more understanding out there! I always feel like I'm ' putting it on' when I feel weak/tired and unenthusiastic. Plus at the anniversary time of being poorly and put on ECMO, which is this time of year for me(put on ECMO on 5th January 2020), I always feel low without consciously thinking about it and can't help having thought like 'this time 4 years ago, this or that was happening to me'
Totally agree, anniversaries of various parts of my ICU/ECMO journey also keep cropping up. But it is reassuring, if that is the right word, to see how many people - although we wish we were not - are in the same fatigue/recovery boat with regards to this discussion.
After all those replies above, it won't surprise you to hear that I have experienced exactly the same. It's very frustrating not having the physical or mental energy that I used to have - I used to race bicycles for fun pre-ICU and could ride 100+ miles at speed without thinking twice about it. It's hard to see myself getting back there. Plus the mental fatigue, especially in the afternoons when I find myself getting less and less productive with my work. But it's better than it was a year ago and that was better than two years ago, so the passage of time is helping.
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