I've now been out of hospital for just over three months. I was admitted in February this year for flu, pneumonia and severe septic shock and was in a coma for almost a month in ICU, then in a general ward for another 8 weeks before getting out.
I do have ICU-acquired weakness in various bits of me - neuropathy in one foot which is getting better. The neuropathy in my arm is almost gone and I have been left with a shaking right leg. I think all I can do for that is increase my strength.
The first month out was spent trying to recover from extreme weakness and I did. My breathing muscles felt good, I started to be able to lift things, to be able to release the handbrake of the car so I could drive again, I started to go out for walks every few days. I lifted weights to try and strengthen my arms etc.
As I'm a hillwalker (this is my main thing that I absolutely love to do) I was keen on doing that again but I knew I would have to build it up slowly. So I started walking for longer on the flat and started to do small hills. I did leapfrog one or two levels here as just a few days ago I climbed Ben Lomond, which is a Munro (mountain over 3,000 feet) not far from Glasgow. I took it very easy going up with lots of rests. I was aware that once you go up, you have to get down too so made sure I would be able to by keeping energy in reserve for that. My feet and ankles did get sore on the way down but I'm extending my baseline constantly. When I first started building up, I could only do about 3km of walking before they got sore and I can now do 10km before they get sore. They're getting stronger all the time.
I know I'm nowhere near how I was before the flu hit me. I had tons of stamina, I could walk up hills carrying a tent in my rucksack, I could do multiple hills not very fast but at a steady pace. That's a long time away, I know that. But to get close to that again, I need to climb hills now - just single ones to build up my strength.
I feel I'm doing the right thing; I know when to push and when to rest. However, my family doesn't and a lot of my friends don't. They still see the person who almost died in February.
Does anybody here understand this? I can't rest forever and anyway, I feel its bad for me personally to rest too much; I get really depressed.
Best,
Helen
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You sound like you are getting on just great - it’s always a fine line that I’ve trodden between doing enough and doing too much - tbh my body now let’s me know and I tend to just fall asleep.
Others may be very cautious too - after all, they have seen us first hand near death’s door and will be feeling ultra protective - for our loved ones - a side effect of ICU can be hyper vigilance.
I still have to be quite careful about explaining what I’m doing and how long I’ll be which I often forget and just get on with it like normal - only to return home and everyone is in a fluster.
Thank you Sepsur. I know it's hard for loved ones to accept the changes. My husband seems to be doing fine though as I talk everything through with him before I do it. I also leave him details about where I am, route for day etc but did do that beforehand anyway for safety, good idea for solo hillwalking.
Helen, I am sure you are doing the right thing. I was a former marathon and ultra marathon runner, who, nine years ago, spent sixteen weeks in hospital, eleven of which in an ICU and three of those on ECMO, as a result of a very nasty lung disease which was doing its best to kill me. I was told that my marathon running days were over. What a challenge! It turned out they were not. From day one out of hospital I pushed myself physically as hard as I could from a very low starting point (I could only manage to walk a couple of hundred yards when I came out). First it was walking, adding more yards each day, and then slopes followed by hills. I bought a cheap cycle and had a couple of sessions in the gym each week. After about five months I felt up to returning to running. The first sessions were a couple of hundred-yard staggers accompanied by very supportive friends. I gradually improved, and after another three or four months I was back running with my running club. I have never looked back. I will never be fast again (I am now 69 years old and the top part of my lungs no longer function) but since that horrible event I have finished two full marathons and am currently three months into a ten-month training plan to try and complete an ultra trail marathon. I am convinced that when trying to recover from serious, life-threatening illness, movement and determination are key. Good luck to you. You are doing great. Keep going. It is nice to come across a kindred spirit.
Thank you, and great to hear that you are almost back to ultra running I feel the same; that movement and determination are key to getting back out there. I'm starting back at work too, on a phased return.
I do find that my heels and ankles get sore (I think from the impact) but my baseline is constantly improving. I can walk roughly 10km now without pain and 15km is longest hillwalk yet. I'm slightly concerned about lifting weights in a gym - I think it might have been in a very busy gym where I caught the nasty flu that nearly killed me. I suppose I can't think like that though and be scared to go back into them - I do freak out a bit in big crowds and tend to avoid them. I have dumbbells and exercises I do at home instead.
You are doing great. Look back at the condition you were in when you first left hospital. You have come a long way in a comparatively short period of time. You should feel proud of yourself. Many people would have given in and have been content with a life as a couch potato. Keep taking baby steps forward, nothing too silly too soon, and you will be amazed at what can be achieved. Do not let an odd set back hold you back - just find another way around. You can get very lightweight camping gear these days and, with continued determination, you could be making up a remote hill with hubby or friends for a bit of wild camping next summer! Getting back to work will, I am sure, be good therapy. You will be stretching about bending over to get into low spots, lifting lots of heavy mugs of tea.... all the normal things - and your colleagues will soon realise how good you have got and will quit mollycoddling you. Talking to you has been a privilege and has taken me down memory lane. I remember the low points when I was lying helpless in a hospital bed unable to do anything for myself and with everyone having so limited expectations for me (constantly needing oxygen and a mobility scoter were on the cards). It will be a constant journey for both of us - but the scenery is lovely. Good luck lady.
I think it’s great to get back to the things you love and your determination will mean you get back to where you want to be fitness-wise. Personally, after spending 2 weeks in an induced coma and further 2 weeks in ICU after contracting fungal meningitis in Panama I was desperate to get back to running, but my knees hurt just from walking. I was really worried I was damaging something so I paid for a private session with a physio and he said it was completely normal after so much muscle wastage and not to worry at all, as long as I incrementally increased my exercise, as you are doing.
I was able to get back to running after just 4 weeks out of ICU (very slowly and over a short distance to begin with) and built up from there.
I think after serious illnesses like we have experienced, we become experts in our own bodies, I think we know when we can push and when we need to rest and I had to explain this to my loved ones who were worried I was pushing too hard. They will also have their own PTSD from the whole experience and fears about your well-being which will last a a little while. I think it took around 6 months for my family to calm down a bit 🤣
I am 12 months out of ICU now and stronger and fitter than before my illness. You’ll get there, just listen to your body - they are incredible!
Wishing you all the best in your recovery and sending best wishes to you and your family. I understand what you’re going though ❤️
Thanks Stevie, it's good to get confirmation of the muscle wastage and pain in knees. I figured that was the case with my ankles and feet. I'm being sensible too and not exercising every day. For instance, I'm not walking today; it's very hot here in Scotland and would be great to go up some hills but there's also dehydration to consider (I've got damaged kidneys from sepsis) so I'm erring on the side of caution today
I found after my illness. I no longer have a reserve of extra strength to count on when times get tough. As long as you have a backup plan, in case you need help. There is nothing wrong with trying. You'll never know unless you try. Even if it doesn't work the first time. You'll learn more about your body.
That's an interesting point but I've had thyroid issues for the last fifteen years and that removed the well of energy anyway so I'm used to operating without it. I'm able to keep energy in reserve, by eating wisely. I also take a great B complex and find that gives me a load too. As I've been building up strength, I'm also building up stamina, and even the days where I don't manage to go walking, I'm improving mental strength or driving stamina - it all adds up
Go for it. When I was in ICU, the idea of doing another Munro was a massive motivation. I did Ben vorlich (loch earn) within a year, followed by Ben Nevis, amongst others. You deserve some joy.
Hello, I have full admiration for you and it sounds like you are doing very well indeed. Enjoy what you enjoy doing, but don’t overdo it. Check with your GP. and if they say it’s ok, then continue with your enjoyment. Well done. Onwards and upwards as they say x
Thank you but I disagree that the GP would be able to help. I'm not a typical kidney patient. Even the consultants in the hospital didn't know how fast I would recover (ie really fast). My GP is pretty useless actually. All the good ones took early retirement and the practice is run with locums, so no long term knowledge. I go to a six monthly renal clinic at the hospital and last time they said, all well, just don't take ibuprofen, be careful of supplements, drink lots of water and avoid infections. That's it. I'm a bit paranoid about the infections, now getting scared of close quarters with lots of people but generally doing pretty well.
I think you’re doing incredible well , don’t beat yourself up, if you use a watch to track progress just look back a month or two or three and see how far you have come I have do this as I don’t see any progress but it is there
I think most people that have had extended stays in ICU understand this. I walked, cold water, swam and cycled a lot. I’m just getting back into real exercise as of this month. I was in with Sepsis pneumonia, Acute Renal failure, and have Neuropraxia in both arms, Step A, collapsed lung, Heart Attack, multi organ failure🤷♂️ back in Jan to Feb 2023. I’m now just able to walk a Mile on the flat,, cycle 7 miles, and swim 1klm, and use the Tgo outdoor gym. I’m impatient and keep pushing and then pick up an injury, but like you I can’t just sit and wait I push for another .5 of a mile another 5 lengths etc.
That's a good point, I do use a Garmin Fenix watch and looking at the amount of activities and effort is useful. Even though there are some weeks when I'm really tired (this week as I'm almost full time back to work), overall my activities and effort are steadily climbing. I had everything you had bar the heart issues although did develop atrial fibrillation. Hardest to recover from is a mix between the kidney failure and the lung failure. I console myself with thoughts that lungs do regenerate and kidneys too (recovered from severe AKI to currently at mild to moderate kidney damage, on the milder side). I'll concentrate just now on walking, will maybe pick up the cycling next year.
Thanks so much for replying, it's great to hear that other sporty people are recovering too 😊
Sounds like you're doing really good and exactly the right things! I have no ICU experience myself, but lots with mental health - it's all about listening to yourself, your body, going step by step with what feels good/doable as well.
What you and all other commentors have been sharing gives me lots of hope for my boyfriend. He's been admitted to hospital and then ICU less than 1h later with massive issues breathing due to streptococcs infection and an abscess at his throat, then sepsis and pneunomia with another bacteria. He's been in the induced coma for a full month, waking up for a week and now what's considered awake since Sept 30th 2023, just another week.
He has a tracheostomy, doesn't fully breath on his own yet, and has lost all muscle strength, currently practicing to sit on the edge of the bed multiple times a day with support, from what I'm told...
He loves walking and hiking and traveling a lot, also carrying heavy gear (either for camping or photography), and has been going on a fast-paced 35km hike at least once a year. That's more fit than I am. With reading how you did and are doing, it gives me so much hope he will be fine eventually, and able to do what he loves again. He is a quite impatient to get stuff done and very dedicated person, and those characteristics for sure will help him during all of physio and recovery...
He's living in another country than me, so I haven't been able to visit him since he's awake yet. His family didn't know about my existence until the day he was admitted, for very understandable reasons from his perspective. It's a very tough, weird situation for all of us and I am struggling with not getting as much detailed nor timely information as I feel I need from his sister, who's the next of kin the hospital talks to. Thank you again so much for sharing your personal experiences and recovery journeys; it gives me hope and helps fill in blanks more realistically, and shape some more realistic scenarios of what to potentially expect for the time to come. Luckily, I'll be visiting him in 1.5 weeks for a week, so hopefully can at least give some direct personal comfort and support then, and most importantly communicate again (we haven't had a single day without talking since day one we met, up until when he was admitted to hospital).
Do you have any tips of how I can support him? Maybe also how I can support and be there for him from afar, while I can't be physically? What did you appreciate most from your partner, loved ones, close friends when coming back to yourself and while recovering? What to avoid?
Sorry if this is too off-topic for here.
Thanks again for sharing your experience! Keep on what you're doing. It seems to be working and making you happy, so it's just right.
Good luck with your further recovery, and to all the future hills you're going to walk and enjoy! 🤗
Thanks for commenting. The physical issue was hard, as I've been where your boyfriend is with zero core strength after waking up from a coma. I too had to learn to get stronger to be able to roll from side to side in the hospital bed while they cleaned me up (no dignity at all in hospitals; you just have to shit the bed. You can't move) so that's hard to get your head round at first. It took me a good few days before I was able to sit up unsupported. I had no doubt however in my head that I would one day get back to hillwalking and it helped that my husband also had no doubt that I would and a few consultants too.
So having no doubt that your partner will eventually get back to how he was, is very important.
I had a tracheostomy too and couldn't communicate very well. I learned to write again pretty quickly so I could at least try and write down what was bothering me.
Being there virtually and being in touch - I really valued the people who wrote to me, some wrote letters or cards, some sent me text messages and emails, some sent pictures every time they thought of me and I really appreciated all of them. My husband as well as visiting also video called me every morning and sometimes at night-time too, and we had an ongoing long WhatsApp conversation. I got much closer with his sister than I had before as she was the point of contact for my husband's family.
What to avoid - any stress or power struggles. While my husband's family was awesome, generally lovely and supportive, my own family wasn't. Parents were annoyed they weren't next of kin, every rule was broken or argued against, unfortunately that has led to a bit of a rift. I can't quite forgive them for doing this, for adding to my husband's stress at the worst time of his life 😔
Hope this is useful - please ask me more questions, as my husband's experience of the whole thing is completely different from my experience. He wrote a journal of the whole thing which I found really useful for me for timescales. I was totally confused about how much time had passed and each aspect of recovery when I was really sick.
Hi Helen,Thank you so much for that long answer, it's incredibly useful! <3
I've actually been wondering about bowel movements in the induced coma and with the feeding tube also later on, but couldn't ask anyone. The catheter for urine was mentioned, the other type of waste was not. So thanks for clearing up that unasked question first.
I trust in my boyfriend's dedication and stubbornness. He wants to get back to his feet as fast as possible, and he will. He loves his independence.
Sadly, some kind of power struggle is already going on... it feels like I have to fight for every tiny bit of information regarding him and his situation, like a dog who gets tossed a small piece once in a while and then is told to calm down and be patient again. I am calm and patient, and I would just like to know what is going on with my partner. Sometimes I have to wait for more than 31 hours to get the promised daily update from his sister, resulting in me being really anxious and getting panic attacks. I don't dare to ask for an update earlier, since I don't want to stress her in any form, and have received negative reactions to very normal questions earlier. She is the only access I have to my boyfriend as long as he can't communicate clearly and without being asked yes-no questions yet. And I'm not sure whether he still tries to keep me secret from his family, for reasons that him and me have talked about some months into our relationship, and that I get to understand better each day with the experiences I make. I'm not sure he will/can remember that I have met his sister with him being present and thus knows his family knows about me; it was only in the last hour before he was admitted to hospital, on day 4 or 5 of him being sick.
When he was completely fit, he often needed to get away from his sister and mom for some peace and quiet. They can be really suffocating. Currently, he can't get away, and that must be so difficult to stand for him. I feel like that might be a huge motivation for him to recover fast, although not a positive one. Some days he sends them away really fast again, or doesn't want a visit at all, from what I'm told... I just really really hope that we'll be able to communicate directly soon, and that me wanting to visit him doesn't cause or add any stress or turmoil for him.
From day 2 or 3 since he is in hospital, I have started sending him messages. Written first, but figured it might be easier and nicer for him to also see me, so I switched to mostly short video messages. It might be a bit overwhelming at first once he has his phone back and gets so so many videos...didn't considered that it would get so much and take so long at first, and now I don't know how I could change it. 🙈 Sending those messages really helps me cope. I don't censor myself, he gets my thoughts and emotions in each moment raw and how they are, both happy and less so. It feels a bit like normal communication with some time travel added - I'm sending what I want to share with him now, he will receive it and can react and answer to it later.
Writing a diary about his journey and recovery doesn't work so well for me at the moment, as I barely get enough infos to piece together a half realistic image of how he is doing, trying to fill the gaps with what I learned from reading lots of general medical articles, studies etc about the topics, and about personal experiences and journeys here. I am so grateful for any experience you and everyone else is sharing! 🙏 It helps so much in getting an idea what my boyfriend's current experience might be. What I currently really know from him and his situation is anything but comprehensive.
I'm still counting and keeping the days for him in my calendar since he's been admitted, when his meds were reduced to start waking up, when he got the tracheostomy, and since when he's considered fully awake, and am adding little notes about how he's been doing that day and what was new, if I get that info.
[splitting the post before it gets too long]I have so many more questions. Sorry about any that might be too personal or difficult to answer, or if it's too many questions in total.
And I am really interested to learn about your husband's experience as well. How did he cope? How did he relax? How did he deal with all the uncertainty and
Sometimes I don't know how I'm still standing, getting through the days, sometimes even being happy about random little things like seeing some birds outside, a colourful sunset or a nice memory (which I'm then sharing with him in a time-traveling message ☺️), and being patient and really polite and friendly and understanding with my bf's sister...
When could you start using your phone again?
How was the time waking up for you, do you remember any of it?
When were you "fully" awake again, ie able to remember the past day(s) and know about your situation?
Did you experience delirium? How was that without being able to communicate at first with the tracheostomy?
Is there anything you would have wanted to be asked (yes/no style) but were not? What did you want to know/ask about but could not?
What did being fed by tube feel like?
How did you learn to swallow and cough again, and how long did it take?
When could you start eating again? Were you strong enough and able to feed yourself then yet? Did your eating and drinking habits change, long-term?
How did you get off the tracheostomy? What was the process, and did you get a speaking valve? Did you get procedingly smaller tubes, or was it just removed without being changed?
How long did you have the tracheostomy, and how far were you with physical recovery in the rest of your body when it was removed?
Have you been in the ICU/same hospital all the time? What was the milestone/checkmarks to be reached to leave the ICU, and where did you get next?
My bf was moved to another hospital's ICU on day 3 after being awake already. I was told that he'll be moved to either yet another hospital or to the Ear Nose Throat unit once the tracheostomy can be removed, and that would be the step out of ICU as well then.
Could you start wearing your own clothes l (or at least some of them) again while you were in the ICU/in hospital?
When did you start to practice walking (putting your feet on the ground, taking a first step) again?
Thank you for reading through all of this and sharing your experience so openly and answering my questions! 🙏
All the best and may your feel always stay warm & dry on your walks,
I'll try to answer these as best as I can. Do remember though that although there are huge similarities with everyone, we're also very different. What seems similar here is the drive to be independent, although I have to say I found myself being protective of myself and resting more than the nurses wanted me to. However the consultants wanted me to rest. I did what I could exercise-wise when I could, but it wasn't til close to the end of my time in hospital that I improved physically super fast, learned to walk, did stairs and then was discharged. My body was doing that unconscious healing thing without my conscious mind before that.
1. My husband had an awful time. He was luckily supported hugely by his sister. He found that writing a journal helped him too, as it was all a letter to me. He didn't show it to me until I got out of hospital. He also showed me all the communications he'd had with my boss, my dad, my friends after I got out of hospital. He really struggled with relaxing, I think he managed a few times to be with his family with some drinks. He found himself praying at points, going to a church after visits (he's not religious). It was all a huge shock to me (for instance, I have horizontal ridges on my toenails from the shock; and he has them too).
2. Phone - we actually didn't know where it was for ages! Our flat was in a mess from paramedics moving stuff out of the way to get to me. So it was at least a month before I had it, possibly 6 weeks.
3. I don't remember there being a hard border with waking up. It was more gentle with shades of not sure if you're sleeping, aware and not sure if you're awake. This ties into your delirium question.
4. Fully awake - the times when I thought I was fully awake, I wasn't. I was still on a bit of sedation. So, I'm not sure exactly when I was fully awake. I was in ICU for 5 weeks I think. I was definitely fully awake by the end of that
5. Delirium. Oh yes!! I had an awful series of nightmares - I attribute this to reading a lot of sci fi and fantasy and horror books and watching horror films. I figure that every time the sedation was being reduced, my brain was a bit more aware and came up with a nasty load of situations to explain. Without going into too much detail, I thought me and my husband had paid for a sort of medical escape room. I didn't know I was in hospital. I was going through rooms , like the film Cube, that would reset themselves but I was constantly trapped and trying to find my way out. Then I was in a place I called Gepeto's workshop with two evil scientists who were doing experiments on me. I kept trying to get away but I was trapped by a cable round my neck and my legs were tied up. This morphed into being held hostage by carnies over the river Clyde and if I didn't do what they wanted, they were going to drop me into the river Clyde and I knew I would drown cos my legs were tied up. My heart was going like the clappers. I wonder if it was this that caused my heart to go into overdrive, or the sepsis causing my heart to go into overdrive and this was what my brain came up with. I don't know! I was confused waking up because of this. The carnies/evil scientists became doctors and nurses. I was convinced they were hurting me. Although I couldn't speak, I was apparently mouthing "liars" and "phone the police". So that kind of answers the waking up question too
Also my husband's sister is deaf and can read lips well. My husband was useless at understanding me. The nurses were better but I realised that I would have to learn to write quick sharp before they could understand me. So I went from a scrawled line, to printing in capitals to writing within a few days. Good exercise for arms and hands too.
Once I was more capable, I wrote the whole thing down. Due to that, it doesn't bother me in the slightest. It's out of my head now.
6. Fed by tube - fine, I just didn't feel hungry is all. It was a night time feed. I can tell you though that I accidentally pulled it out twice! Not used to there being something in my nose. The first time they replaced it was horrible, I choked a lot. The second time, a nurse replaced it in 6 seconds - which was awesome!
7. Swallow and cough - only a few days after I woke up. I had seven - ten days in ICU after being in a coma. The big event was getting the tracheostomy out. I don't remember exact details. Yes, I had a speaking tube but I, at that point, had a lot of lung damage to heal and was on a lot of oxygen. I had to have what I call extreme suction, where the nurses get you to cough and you bring up phlegm to the trachy and they clear it out with a suction tube. So when this was calming down a little, then they started making moves to try me on less oxygen and then a speaking tube. To wake the voice up, they put stuff down the trachy - that made me cough a lot and that woke my voice up. They told me that your voice is a muscle and to exercise it as much as possible
8. Eating - this was a major issue. We didn't know that having kidney damage and a tracheostomy was going to basically remove my appetite. I was scared of eating as I had a hole in the inside of my neck but also much reduced appetite. My husband was at his wits end trying to get me to eat, not helped by truly awful food in the hospital. He kept bringing me in big sandwiches that I couldn't eat. Best things were soup and fruit. The hospital referred me to the dietician team and they put me on wee yoghurt drink supplements called Ensures which had all the vitamins and minerals you need. So that kept my weight stable but I did lose a lot through sepsis. I was on the Ensures when I got out of hospital for about 2 months. They did make me sick if I drank them too fast though.
I'll try and get back to your questions later. I'm too tired just now. I think I have a cold.
Hi Helen, glad you are slowly getting back to hill walking and getting stronger by the day. I think walking out in the countryside is the best medicine out there. I was told by the consultants if I wasn’t as active as I am with the hiking , I probably wouldn’t have made it out of ICU. The week before I was admitted to hospital in May I had driven to wales to do Pen y Fan four peaks, to test myself I went back to do the same walk about a month ago and managed to complete it, although about 90 minutes slower than before. Everyone tells me I shouldn’t be doing as much walking but it helps in so many ways (physically and mentally). Keep going with the walking and you will eventually be where you were before the flu hit.
Thanks, I was told the same. Was expected to be in ICU for at least a year, and it was just over a month. They reckoned my stamina was what led to a much quicker recovery.
I know I started improving when my husband finally managed to take me outside in a wheelchair and I got the sun on my face. I went out every lunchtime for a few hours and it made a huge difference to me.
I have still to do Pen y Fan (I'll add that to my list of hills to do). I'm also a bit slower going uphill, same speed on the flat and descending (probably moderate pace) so I know I need to build lung capacity. I'm going to try and do some swimming to help with this.
I get you with the physical and mental benefits from hillwalking. To keep my family happy, I'm replacing my worn out kit, getting better waterproofs and warmer gear.
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I feel the same; that movement and determination are key to getting back out there. I'm starting back at work too, on a phased return. 
Is stress hard to deal with for others?
And the doctors treated me like I was crazy !!
How can I help my intubated father in ICU?
Can a person gets back the memory after getting up from coma? 
I did my revisit
