I was put into an induced coma and was ventilated for 9 days…..I’ve been home for 3 weeks and am literally i different person In the hospital I had severe delerium which eased after about a week but I can’t get the memory’s out of my head, I have nightmares and only manage a couple of hours at a time, i constantly cry. I know these are a mix of my mental health and side effects of the ventilator but the physical side of things I think or feel there is something is really wrong……i have a large patch on the bk of my head about the size of my hand…..basically all the back of my head that’s numb and the area round it is agony to the point of I can’t touch it it hurts that much and the headaches are really severe to the point of nearly being sick. I’ve spoken with my gp who said it can take weeks/months to get back to normal but now it’s the top of my foot and toes…..my foot was pins and needles but now it’s just numb. I’m worried about the numbness spreading? Does it heal? I’m having panic attacks and get exhausted at the smallest of things, i have been told this can also be related to pneumonia which I got during ventilation. I was in icu then when being extubated I had 6 more days in hospital then discharged home because there was no beds so there wasn’t really much support or advice about recovery…..everything I read online is terrifying and all conflicting so I found this site and wanted to enquire. Will I ever be me again? I’m on medication because I went to A&E not feeling well and struggling for breath and now have a chest infection and crackles on my lung which is making panic attacks worse, I’m terrified of dying…..every twinge I get I think this is it, I’m constantly at the gp’s, calling 111 or going to A&E because I don’t know if I’m supposed to feel like this? I don’t know what’s normal or not normal, the back of my head and my foot are scaring me will the feeling of them but I’m so confused right now…..any advice would be appreciated.
Thanks
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Alfiedude99
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Hey Alfiedude99 - maybe it’s worth starting from a different view point - there is nothing ‘normal’ about ICU or the recovery afterwards - BUT there are feelings and experiences that many of us have - I like to refer to them as being ‘usual’.
You might still be experiencing flashbacks which can be a sign of PTSD which is common amongst our group. Various therapies will help this - CBT or EMDR are especially suitable.
The tingling and numb sensations could be signs of neuropathy which is nerve damage. This can repair but nerve damage repairs at a rate of 1mm a day - so it takes time. In fact peripheral neuropathy can explain numerous weird sensations around the body, excess sweating, dizziness, loss of appetite etc etc.
Sleep patterns are also often interrupted for a time - a prolonged time for some.
Can you get back to your old self is a hard question to answer - I am not the same as I was but I’m just different not less than.
Hello - you are most definitely not alone. My situation was very similar - pneumonia (3 kinds), 11 days intubated, a month in the ICU, lost 40 lbs and had to start over standing, building enough strength to pick up a spoon, etc. Fatigue is common, and I was told a year to recover - a year and a half later, and I still get tired more than I used to.
Vivid nightmares during sedation are common, and it takes time to get over those. It can seem like a different reality, or the "real" one. I still remember mine far better than the 2 weeks before going into the ICU.
Fearing the next cold or flu was a notable issue for me, and still is. I've mostly learned to stop short of panicking or assuming the worst, but I avoid crowds and sick people. I think that is normal considering what we've endured, and most of it is likely unwarranted fear, but all the same, the fear is real.
Numbness also seems common. I had numbness in one leg for months, but that has slowly decreased in range and severity, though it still comes and goes at times. I also had a cranial optic nerve damaged which caused severe double vision for a while, but that has mostly healed - maybe 90-95%.
Sleep seems to vary, and it seems it is also impacted by fatigue recovery. I still don't like going to bed for some reason, but if I have a busy day or exercise, I end up sleeping 10-12 hours the next day to make up for it.
It all takes time and patience. As Sepsur said, getting back to "normal" may not be the same for everyone. I know I've changed and am still trying to figure out how to move forward.
I hope this offers some encouragement. Yes, everything you mentioned can and probably will improve, though it takes time. How much improvement, and how long it takes for each issue varies from person to person. Be patient, but also be encouraged. Take it one day at a time.
It all sounds so familiar! Check my posts ... last Dec I was in ICU .. not intubated but seriously ill and having sent for my medical notes only just survived.
But the main point I'm trying to make is that I'm only just seeing the light at the end of a very dark tunnel. I was back and forward to GP and A&E (at GP's advice) spent months not sleeping , feeling dreadful, am left with all sorts of odd problems health wise. This group has been a life saver for me ..through this I got a follow up appointment that led to a psychologist and physiotherapist and I have joined in with research groups where I met so many people with similar stories. 3 weeks is very very early days. The hospital didn't even mention there was a recovery time ...my GP was the one that said it would be 12 months or more . No one understands especially family who think you should be grateful to be alive and can't see why you should be in tears. I still tell them sometimes I wish I hadn't made it as there's so much I can't do ....that's in the bad moments . But I AM getting stronger . I have just been able to drive agsin for the first time ...that's a huge bonus. My psychologist recommended The Reality Slap...an excellent read when you feel up to it. So much more I could say ...shout if you can think of anything else!
Just adding to what the others have said it’s not like the movies - jump out of bed and you re better! It does take time, we are heal differently, and yes we are different. You are lucky that you feel you can go to A&E I won’t go anywhere near the place although going through the front door of the hospital is ok. It’s good that you have a gp that takes an interest as many have never had contact with ‘x’ icu patients. Things to get better.
Hi there, just adding to what has been said also. I only spent a week in ICU intubated and I've been home almost 5 weeks. I have facial numbness from all the surgeries I had which I've been told is normal and they don't know when the feeling will return. I'm also going through the diagnosis stage. I'm being fast tracked to MRI and having lots of tests. You are allowed to be concerned about what you are thinking and feeling. I feel concerned everyday and try to remind myself that it's early days, but I do speak to my medical team if I have concerns. I've found ringing the ward more helpful then going through switchboard so don't be scared to do that. Heck I was ready to go back the gym but I've accepted it's a long way off now. Focus on you as much as possible and don't let anyone make your feel bad for it. Being so ill that you end up in ICU is rare and awful. I couldn't even hold a cup when I woke up.
Keep speaking to this forum we've all got different stories but we've been there and it is good to air off those thoughts. You are more resilient then you think. Just look at everything you have been through and I wish you the best of luck in your recovery.
I agree with everyone that has replied. You can read my journey when you have time, but you are as Downthemoor says in very very early days of recovery
I try and answer your questions relating to how I have been and am now I’m nearly 9 months from discharge.
Delirium is very common, and debilitating in more ways than I can say. Yes it’s hard to put things together and the nightmares are scary, I still have these at the forefront of my mind. Crying getting upset again is a theme, I still just bust into tears at the drop of a hat and was reading Downthemoor’s recalling about family’s not understanding, that is the same fir me I wish I hadn’t pulled through. With tears in my eyes
Numbness like Sepur says neuropathy takes time a long time to ease, I have damage to both arms, just had 2nd MRI scan to investigate, but like you I have pins and needles in my feet and numbness on my skin on my left chest.
Panic attacks, anxiety are common and flashbacks of time in ICU or still thinking you’re in ICU. I sometimes pinch myself thinking that I might still be there.
Getting tried, exhausted, lethargic is very common, just doing the simplest things make you tired. It will get better, but this is a marathon not a race, it’s hard to think that you’re not getting better quickly but like others would say, it’s a new normal. But don’t give up just pace yourself, set achievable goals and leave it at that.
I’m not sure about others but I still wear a mask when ever I’m in the hospital for appointments but also when shopping, in crowded places etc as I also am terrified of get anything that could take me back to ICU.
Not sure about you’re local authority but when I left hospital I had a team of people come in a assess me at home and put in equipment that would help me in everyday tasks like showering, sitting in the lounge, purchase chairs to be able to sit in the kitchen etc Also you say your doctor is the only health professional to tell you anything, ask him or phone the ICU you were in and ask if you should have a rehabilitation team assigned to you, I have and it’s really helpful
Also no one ever tells you what you can claim for and believe me there is a lot of help out there Try calling citizens advice and ask them what help is out there.
Sorry for the overly long reply but in short you are not alone in this journey, post anytime you want to know anything and the group will try and help, we are all in this bout together
thank you so much for all of your replies it all is still early days and i don’t know if I’m coming or going, the gps have been great but so confusing! I saw one particular dr and he was really good but said recovery would take months but then spoke to him less than a week later as I had to get a fit note certificate thing and he wrote one for 3 weeks……I actually got really positive thinking I’d resume to ‘normal’ within 3 weeks and then start a return to work as it’s good for mental health , he even asked why I was in hospital though…..I’d seen him less than a week before? I’m getting so much different advice……stay in you’ve got a chest infection….go out and get fresh air…..if your body tells you to sleep then sleep but then stay awake till a normal bedtime I literally have no idea what advice to take! It’s 4 weeks on Friday since I came home and I think I’m in some sort of denial, acting and thinking that it all didn’t happen or ‘couldn’t of been that bad’ but then speaking to family that travelled across the country to say there goodbyes and friends lighting candles because there was a very high chance I wouldn’t wake up…..all very surreal. One part of me pretends like it’s not really happened but then the other part of me is having nightmares/not much sleep so exhausted/very confused about a lot of things…..my head is spinning with it all. Again thank you for responding it’s reassuring that it’s not just me being a hypochondriac and a bit over dramatic!!
I agree with Downthemoormoor, it’s sounds to me that you’ve been left high and dry by the people that are supposed to have your health and welfare foremost in their minds. I’m speechless at the way you are being treated. Yes your GP would be the last place I would go to be supported and understood, they are not trained or understand the issues you have been through and will go through. My GP has contacted me only once in 8-9 months and even then did not mention anything about how are you feeling do you need any help!. As I mentioned before ask your ICU unit if they have a rehabilitation team or similar that can help you. The ICU and teams associated with it are the only people that can help with your immediate medical needs and guide you with your ongoing recovery. I have been told it will! Take at least 18 months to get to normal and that normal might not be your old normal, I had my first appointment yesterday with my thoracic consultant, from which I am going to have a CT scan and then lung function test plus bloods to see my infection markers, this is 8-9 months after discharge. Again listen to your body if it says rest then rest it does this fir a reason, the more you ignore it the longer the recovery. I would say if your able to get out in any shape or firm then try make sure your protected ie warm etc. just get some fresh air and a change of scenery good fir your mental health as well.
No one knows what you e been through or are going through, you sound like your suffering from “Post-intensive Care Syndrome” I’m not medically trained but this was my diagnosis. I am still having psychological therapy.
You mention going back to work and only been signed off for three weeks? That’s sounds horrendous! I don’t know your physical situation but it’s taking me this long to even walk 50 m on the flat and energy levels still not great and rest during the day. I’m still wearing a mask in inclosed areas were lots of people are and told yesterday to keep doing that until I’ve been told I’m well enough by my consultant. Like I said before this is very very early for you to be told or think it’s business as usual , it’s a long road. Be kind to yourself.
One thing that stands out here...you say advice confusing re sleeping in the day. The ICU follow up appointment doctor told me to use yoga nidra in the day, this puts you into an almost asleep restful phase so you can get through the day (can do it several times a day if needed) ..it really works. I only wish I'd known about it in the early months . Looking back those early months were a total nightmare and terrifying . As for GP s ...I know the one that understands ICU now and knows me (she told me that she didn't expect me to survive the first time she saw me the day after I was discharged...she sent me straight back to hospital) . One who I would like to see struck off told me to buy a book on psychogenic hyperventilation!! She told me it was all in the mind that I was breathless and shaking! I'd had to get out of bed , dress, be driven to the surgery then walk a long way to her office with a body that was SO weak .....and she says it's all in the mind! So be assured it's not in the mind, the physical and mental stuff after ICU is REAL ... if you can get that follow up appointment you will benefit enormously. I only got mine after 6 months of struggling ...but you see a whole team and they give you forever to talk and explain. Give yourself time to feel stronger if you can't face doing this yet...but if you can get the wheels in motion it's something def to help with your recovery.
Oh and thinking it couldn't have been that bad.....my partner was convinced of that which didn't help. With advice from here I sent for my medical notes ...yes it WAS that bad! His take was that it hadn't been a stroke (which was initial diagnosis ) but severe hyponatremia ..and as they told him that was treatable he thought it wasn't that serious despite the fact he'd witnessed a seizure and had to do CPR on me! From the notes I stopped breathing several times and was lucky not to be intubated. My heart struggled throughout(it's not great now) and they weren't able to control delirium with two doses of haloperidol and dexdor. The amount of drugs I was given is terrifying. So do not underestimate the effect that ICU has in you ...my follow up team assured me of that as I only lost 11 days of my life. They said the effect is just the same due to the near failure of all the body organs. Oh and make sure you get full bloods done by your GP...mine were horrendous in the first few weeks...everything was struggling..liver, kidneys, iron levels etc .but recovered quite quickly .
thank you again for your replies, I’ve been told I’ll get a follow up appointment after 3 months of leaving the ward and I’ll be invited back to look and talk about my time there. My sister said I shouldn’t of been discharged home especially after such a short time and I was basically pretending everything was ok, if anything I should of been on the phsyciatric ward because of the delerium I was convinced that I was in hospital on the other side of the country, then in a different country. I was convinced I’d killed people, babies in particular which was really upsetting as I thought it was real…… I live next door to a funeral home (true not delerium) and whenever I saw the ‘van’ bringing people in I’d go straight into meltdown thinking they were my victims…..horrific! A lot of it has eased but still all is in my head, I had help from the crisis team as it was self inflicted attempt to end my life (sorry if this is selfish when so many people are fighting for their life and I was so reckless with mine) . The crisis team support ended after less than 2 weeks but I now have a cpn and I’m having weekly support until I get more long term support…..it took a year of refusals to the mental health team and a million urgent referrals to be put in even complaints from my gp’s to the service and unfortunately I went on a manic episode and it ended how it did. Like I say I’m so sorry. Your right I was left high and dry not only by thier being no beds on other wards so I was okayed to go home…..I couldn’t even walk up my stairs and had to have friends to come and help me shower, I bought my own shower seat. My 2 children helped me (13 & 18) move my bedroom downstairs which was too much responsibility for them and my youngest thought I was back to my normal self…..he’s autistic and didn’t know the reason for me being so poorly apart from I was very ill because my tablets made me poorly. It’s all a mess and coupled with my medication for mental health isn’t fully working as it’s all got to be fully in my system, the crisis team even halved one of my tablets which was shocking considering I was at the lowest point I’ve been in my life……basically kicked while I was down. Apologies for the essay reply!
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