Hi. This is my first post. I spoke to a lovely itu nurse today who suggested I post on Here..
I was in itu over Xmas with septic shock due to a stuck kidney stone.. I don't remember the few days at home before my kids found me in bed really poorly and hallucinating.
Idon't really remember much about my time in itu but I do vividly remember the hallucinations and I think dreams.. although I'm not sure if they were dreams..
I thought once I got home after I'd feel better and get over it.. then my hair started to fall out, in handfuls.. I can literally run my fingers thro it and have loads of hair in my hands.. my legs hurt, right deep in the top of my calf muscles.. some days I can't stand up straight..
I have critical care physio starting this week so that's good. And I'm now really hopeful that the help I need is all falling into place
I just feel so sad, all the time. I can't stop thinking about it. I feel so guilty my kids went through it, I'm cross with myself for letting it get to me..I have really bad short term memory and get jumbled up trying to explain and have conversations so most of the time I don't even try anymore. It's harder to chat sometimes than just sit quietly..
I feel like I'm whining and moaning.. jeez I'm alive!
I'm absolutely terrified that I'm gonna get it again because I have kidney disease and that causes rapid formation of stones.. I've been admitted loads of times with renal colic, stones etc and been really poorly but not quite like this. So my fear of it happening again is an real possibility. . I'm still waiting for the surgery to get rid of the stones that's caused the sepsis to start with.
I barely sleep and my appetite is not great, I do however now have a appointment to see a dietician next week.. I just can't put the weight I lost back on.. so I'm 6ft and weigh 9 stone. I look awful, none of my clothes fit and its all just miserable. .😒
Anyway... this is all quite normal I'm told.. I just don't feel normal at all..
I feel like I've had a major trauma yet I don't know what it was.. I don't even know what I feel most of the time.. I find it all quite embarrassing to talk about with family and friends.. I'm a bit of a toughie normally so this just isn't me to be like this..
I just want to feel normal.. not have mad thoughts and silly things that trigger what I think are from icu but I'm not sure.
I don't even know if this post makes sense... it does to me..
X
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Natalie1969
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Firstly don't beat yourself up about it, you have been through a major trauma and everything you are feeling and going through is quite normal for us ICU survivors, I spent 3 months in ICU at the Conquest five & half years ago, the first seven & half weeks I have no memory of, they were full of terrifying nightmare and some bizarre hallucinations, in reality I was very critical ill with double pneumonia, severe sepsis, multiple organ failure and later ARDS, my wife and family being told I wasn't expected to survive but thanks to the amazing doctors & nurses I came through it, the worse nightmare was the two weeks on Tressell ward before being discharged.
It was when I got home that the reality of being so close to death hit me and became my darkest days but I was lucky my niece is a nurse in ICU at the Conquest and help me get an early follow up appointment (at the time it was 6 months) after 3 months with the ICU consultant who help me get psychological counseling as my head was all over the place, you need to allow 18months to 2 years to get to the level of recovery where it will probably be your maximum level of recovery but it's only a guide as everyone is different, the important thing is look after yourself and try not to feel guilty of what you put your family through as there is nothing you could have done to prevent it.
I know there is a Hastings ICUsteps support group as I help set it up back in 2012 before moving on to become a trustee of ICUsteps, it's a great way to meet others at different stages of recovery that understand what you've been through which can be very rewarding knowing you're normal and have joined a exclusive survivors club.
Best wishes on your continued recovery & try not to worry about it happening again.
The length of time spent in ICU is irrelevant the trauma is just the same, unfortunately many people will tell you they can remember nightmares and hallucinations like it was yesterday, but they do fade and become less intrusive with time, 6 months is still very early days so don't feel you're being a fool by crying, most people will never understand how terrifying being so close to death is, they think you leave hospital and suddenly everything is normal again, if only that were true.
I can promise you things do get better with time and you'll find it easier to talk about, I found talking about it at conferences in front of a lot of people was my way of dealing with it but that is quite extreme.
Hi Bill. I really hit a low one today. I felt things building up for several days. I lost interest in cooking and just ate because I had to. Even lost interest in Bluebell and is only a means of Transport to me now. I went out today. I met my friend and collected something from him but as I left I said something really strange to him. I said "Phil, whatever happens to me please keep a watch over Linda for me" I don't know why I said it but could feel something like an enormous wave building up inside of me. I went to look at my parents old house and the shambles it now is after they left such a wonderful place and full of memories for me. I got home and as I sat on the settee I just burst into uncontrollable sobs and kept repeating things like WHY ME, I JUST WANT TO BE HAPPY AGAIN and other such like phrases. This carried on for about an hour until I felt able to call the Surgery. I told them what was happening and that I was concerned for my own safety and within an hour the Emergency Dr on call rang me back. She made sure any shortfall in meds was made up and sent to me by taxi. I am seeing her tomorrow to discuss what happens next so at the moment am a little calmer. I saw my Psychologist on Monday and we started Mindfulness strategy. Bill, it just doesn't work for me. I can't go around smelling the fresh air or appreciating the smells of flowers or look at and admire their texture. I am 65 next month and it's the old dog new tricks scenario. I know someone it has worked wonders for and she is well on the road to recovery whereas I am on the side of the road with four flat tyres. I just want to be ME again. To fee happy and occasionally wake refreshed to a new day instead of waking from some horrible dreams on the verge of nightmares which take most of the day and all of what energy I have to get rid of. I look at jobs that I could be getting on with but just turn away. I just don't know what happens after my 16 weeks allowance of Psychology. As I keep saying it looks like I will just be "Hung Out To Dry" again with nowhere to go or anyone to talk to. Why can't the powers that be wake up and see how many of us are out there in this condition day in day out. ICU, Critical Care and Intensive Care alongside Induced Coma are areas which the NHS only seem to scratch the surface of and brushed aside with such remarks as ""You Will Get Over It In Time" They never quantify the TIME and unfortunately. For some. That TIME is running out.
I do feel a bit better today after speaking to the icu nurse this morning and your replies tonight..
thank you very much.
these feelings etc are so far from the person I was.. I'm normally a brush myself down and get a grip kinda person so even getting teary and feeling so scared is alien to me.
it somehow is easier to type it.. I don't end up crying.. Talking about it just ends in tears.. People don't get it, so I just don't say anything..
I'm so greatful for the advice, support and help I've been given today.. I honestly thought I just had to deal with it and there was no way out.. And to know these feelings are normal is a massive relief. I believed I was going mad. Thank you so so much
All of that sounds completely normal Natalie. My stay in ICU (3 months, same as Luckyone) was nearly 4 years ago, and I would say it's only been the last 18 months that I've felt truly myself. I came out telling people it would be months not weeks. Hah. Think I meant years not months.
You WILL get better with time; the bad memories will fade, the dreams will calm down and hopefully your guilty feelings about putting your family through it will disappear soon! There's no time limit on any of this though. Everyone at their own pace. It sounds like you're doing some useful things to help.
Oh my what a terrible experience. If it's any consolation, I too find it so frustrating After being fit and healthy and now being pathetically weak. But each day of physio etc is making me stronger and you will I'm sure, feel the same as you get more mobile.
Feeling low is apparently quite common, I have a psych nurse coming to see me to help me rationalise. Perhaps you could find out if you can get some counselling?
Don't blame yourself, you are doing brilliantly well.
Hi Natalie - I hope you are encouraged by the comments here: it's a space for ex ICU patients and carers to share their experiences - and their wisdom!
don't beat yourself up: you may find it helpful to - if only temporarily - try not to compare the 'old' you, with the 'you' you are at the moment. (Hope that makes sense)
Because it seems you are only increasing your frustration and feeling that you 'ought' to be doing better than you are......instead, be kind to yourself.
You say you are not eating or sleeping properly. It may take some time to recover your appetite - I'm no dietitian but would it help just to relax and eat what you feel like, when you feel like it? little and often, sort of thing. with added fruit.
Re the sleeping: I do believe that a good night's sleep is essential, and when I had trouble during my recovery, I had no hesitation in asking the GP for medication. I don't think there's any shame in doing so. But I realise that people differ on this subject.
And re your hair: we had some posts here about this recently. It will grow back over time (I'm afraid the time thing is quite important!) meanwhile, may I suggest you use a very mild shampoo, avoid strong styling products, don't towel your hair dry, and avoid a very hot hair drier. If you are really worried about it - well you can always buy a wig! seriously. Again, there's no shame.
good luck with your recovery, and do check in here, I have found this site of immense value and comfort.
Hey Natalie, I'm so glad you've posted on here and found this website. Luckyone (Bill) and co got me through my dark days having been discharged in March. My hair is now falling out and I've had it cut very short. My nails have ridges in too as everything stops growing when you're in a coma, no matter whether it's days or months.
Get yourself and your family along to icu steps support group, I've just attended my first and it's amazing!!
I completely understand what you mean about memory loss and typing being easier than speaking, I've started a blog (comarecoveryblog@wordpress.com) and feel free to read it. I'm only 3 posts in but I will be sharing my nightmares, as well as the impact on my family and friends, but also the strength they gave me to get better. Please don't hesitate to reach out to this community anytime.
My nails are ok, I wasn't in a coma tho. Although I don't remember it all I know from family and the bit of memory about my time thereI was delirious and very confused. I was transferred from Eastbourne itu to Hastings and don't remember any of that. I don't know if I was sedated or not.. in fact I know little.. I'm looking forward to going through my notes, day by day of when I was in.. it will help me to know exactly what happened and why..
I do remember the day I was moved to a ward and the nurse that looked after me. I was very upset, in denial of how poorly I was and worried about my daughter so got in my head I was going home. The nurse went above and beyond for me, sat with me, chatted and really reassured me.. she was my life line that day.. a total Angel.. I'll never forget her kindness..
I have days I feel I need to go back and see for myself what it was like, then I have days that the thought of it fills me with panic.. the last time I was there I was having 3 different hallucinations and they are as clear in my mind today still.. I know it silly but I'm so scared of them still being there..
Luckily for me I had a very thick long head of hair.. I'm quite a fan of thinning scissors so I don't mind the thinner hair.. I was just mortified when it started falling out, had no idea why and filled with dread of going bald. Thankfully its eased off quite a bit.. it's still coming out but nowhere near as badly.
I'm just totally focussed today on the follow ups I'm getting.. I'm determined to do my very best to get my head straighter and my legs working.. I'm hounding my consultants Secretary for my operation date as then the fear of it happening again might lessen.
Your all so kind.. thank you for sharing your stories with me. It really helps to know I have a listening ear and people that understand. . I can't begin to try to explain to friends etc..
It makes perfect sense as I have experienced the same problems. Its well over a year now since Sepsis attacked me. And suddenly today, without warning I arrived home feeling fairly low when I broke down into uncontrollable fits of sobbing which went on for about an hour. I phoned my surgery for help as I was fearful for my own safety and the Dr who called me backed has arranged to see me tomorrow. I did a Post on ICUSteps earlier and I genuinely believe that I went through some sort of Personality change AMD no one will convince m otherwise. I have a few more weeks of one to one Psychology and then nothing and just left hung out to dry yet again; Don't beat yourself up. What you are going through happens to us all which is why we are here on this lifeline website. Yes you are alive and obviously grateful to be but you are not whining or moaning but just expressing your feelings fears and sometimes joys. Keep posting. There is always someone here to listen and it does make a difference, Taker good care.
Hello Natalie, you will start to be feeling normal soon, but please be patient with yourself and don't expect instant fixes. Time heals most things and I have had similar issues like you. I found being with my partner, cat and my family were very important healing and was able to move on more quickly.
I can totally relate to you Phil, I hate my personality now, I have a very short temper and burst into tears for getting frustrated. I'm on 30mg of Citalopram but I've always had depression since I was 15 and bi polar runs in my family. I was always very happy go lucky and controlled my illness with meds, but now i am just desperate for my brain to heal and to become myself again.
My friend told me yesterday she has 12 months left to live. She has her second acute leukaemia within 18 months and it will always come back. I didn't know what to say, I was numb. Before I would have burst into tears and cuddled her but I just sat on the sofa going "well, you must fight this and get better". She said its terminal and she won't get better. I can't face into someone I love dying right now, so I went home, slept for 6 hours, then was awake all night praying and researching her illness. This injury to our brains is stupid and frustrating!! I'm 38 and am supposed to be a relatively liked and respected man manager, how can I unleash my short temper and irritability on a team of innocent people?
No matter what, if anyone offers you counselling, drugs, therapy, take it!!!! Get along to icu steps, take your family, be there for the full 2 hours and you will benefit greatly by exchanging numbers and or email addresses.
Good luck all, we will heal, all of us, eventually xx
I went on Thursday to my first follow up.. I literally walked in, saw the physio and itu nurse and burst into tears.. it was all very overwhelming.. they were lovely to me. Made me a cuppa and we just sat talking. I went through my notes and feel better knowing what happened.
I'm feeling poorly today, my right kidney is absolute agony and I've been sick. I have checked my temperature and its fine so I'm praying its just a moving stone and nothing that's going to turn into something nasty.. why do these things always happen on bank holidays?
Thank you all for your replies.. if I still feel grotty tomorrow I might ring 101 doctors and get some advice.. I don't want to risk infection getting septic again. God its terrifying.
On a good note my kids have bought me a sun bed.. so I can relax on my bed and get some uv rays.. I know its not good for your skin but I feel much better in sunshine so it's worth trying.
Thank you so much for your reply it really did help me move forward. I am a lot happier over the last couple of days as I have been asked to attend a Conference locally and will cover ITU and subsequent problems following discharge back home. It is the Sister of the Critical Care Unit it who has put me forward and feel really honoured to have been asked. It is my dream to set up a Support Group here in Nottingham and District. At last it may happen. I am getting a lot of help and support from LUCKYONE and have until November to get it all done and ready. Not sure if you live this way but would love you to come along and attend the conference and see what sort of a job I make of it.
Thanks. I hope you have a good Bank Holiday weekend. Bill (Luckyone) is looking at setting up an online support group probably using Skype. Probably 25 people on line every 4 to 6 weeks. Might be something you would be interested in. All my Best. Phil x
Definitely bought a smile I can't image getting in mine if I were able to have a baby bump never mind two large setters.!!!! Will take that thought with me to bed tonight. x
I have visited my ITU ward twice now and both times, I've seen something that triggered a memory from my nightmares/dreams. I was gutted to learn that the staff nurse had retired, I really wanted to thank him for everything he did for me. I took them in cakes and chocolates and they were very grateful, an ideal thing to do on a Friday afternoon.
I had dialysis for just 5 weeks but my kidneys still hurt occasionally, luckily mine are healed now.
I went to doctors, got some help with sleeping and pain relief.. I have my operation date now on 19th July.. So that's good..
I'm getting there, slowly but surely.. Feeling bit better since I told my family how bad I was feeling.. My fears of it happening again so we have strategies in place now in case. Which really helps my peace of mind.
Hi. Just to let you know I am still around and not gone to ground.!! Had my left knee replaced few weeks ago so that is both done now. The pain is still there but will fade with time. I reached my BIG 65 last week and think back to the times I thought I would not even reach 35!! Psychology Sessions do not seem to work for me and coming to the end of the 16 week sessions. GP referring me to the Adult side of Psychiatric Services to see if they can have some input. Bluebell is doing well and has been fitted with nice new plush two tone coloured leather seats and lovely new radio with Bluetooth so I can talk hands free. I still smile when you told me about your Setters and can just imagine them in Bluebell with ears flapping in the wind.
Thinking back my sessions are only 12. I will know better tomorrow when I see her. Hope you make right decision re your foot. I think anything that gives us better physical well being is worth a try. As I said my GP thinks the Psychiatric Team will try and wean me off some of my meds but to be honest they are what helps me function on a daily basis. Maybe I am reliant on them but at my age I don't think it good to change that. It was sad to hear you lost one of your dogs last year but lovely that you rescue them and cats. We do Guinea Pigs due to being in a flat but they all want a home if they are not wanted.
I know exactly how you feel the same thing happened to me in April ..i was septic because the Er the day before sent me home failing to see the serious kidney infection because of the blockage so the hospital was blaming my medications on why i was crashing and hallucinations..No it was the Infection..so for almost 3 weeks in ICU life support and then to a rehab facility for another week .because developed gangrene on toes and fingers that is heeling slowly im lucky im alive and got to keep my fingers and toes now my hair is falling out the whole thing has left me feeling just how you described..i hope you are well soon u know that we are blessed to be alive..but i totally understand your stress
First don't beat yourself up and secondly i also am a 2x survisor of sepsis and I'm still learning to do things 12 months have you tried the simply Sepsis group on fb they will help you with your fears and are a brilliant bunch
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Need to vent, in 2 years I haven't been able to discuss this
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