I posted a while about my terrible insomnia after my 3 week ICU/HDU and further 3 weeks on the ward. Thanks for all the replies to that post. I've been home for 5 weeks now, still can't sleep but also have another question!
So I guess my recovery is continuing in the right direction but it is very slow & frustrating. Before getting sick I was a hugely active person-running, swimming, cycling, triathlon so to be reduced to pottering around the house and finding the stairs exhausting is pretty alien to me. I miss my endorphin kick! I'm still very irritable, a bit forgetful and am finding that I'm a little down in the dumps. I hate the fact that I'm still off work. At what point do you say this is all a very natural reaction to a massive life event vs being depressed?!!
I'd rather not have to resort to yet more medications ( I'm on enough as it is) but how much time should I give it??
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SECBristol
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SEC I'm so sorry you are suffering. However, you have only been home 5 weeks: I'm afraid in the grand scheme of things (ie post- ICU experience/recovery) this is a very short period of time. I realise this is not what you want to hear! especially if you are normally a very active person with a job. If your 'previous identity' was based very much on these two things, then you are bound to feel irritable and down in the dumps that you can't, for the time being, do all that you used to. Perhaps you feel that you are letting yourself down and not living up to the image you have of yourself (as an active, busy, person) But pottering and taking things slowly is very good - even though it may not be your usual style
Give yourself time and be kind to yourself! . Try and get enjoyment out of small things, and don't punish yourself for not getting better quicker. I doubt you are clinically depressed , but maybe in order to cope with all this, you may have to try a different mindset about being 'slower' generally, and maintain a positive attitude. Think longer term: for example, how much you will have improved in 6 months time.
I hope I haven't lapsed into therapy-speak jargon here, but I do think that having been an ICU patient has massive implications for one's sense of self, as well as its effects on the body - both of which may never be quite the same again.Not necessarily 'worse' but certainly different. So, post-ICU experience is as much about getting one's head around what happened as well as having to recover physically.
I couldn't agree more with this ; Never underestimate what a positive attitude can do as well as looking after yourself well also remember to celebrate every little victory you make during your recovery no matter how small !
I had a similar stay to you because of trauma suffered in a cancer operation. I dont want to be negative but I am not back at work yet. I suggest you do some study on PTSD, ICU acquired weakness and sleep patterns post ICU.
I know this is blunt but it has been over two and a half years and in that time I have learned a number of things. I have not met an ICU survivor (and I'm happy to be corrected) {I have read that as many as 80% of us do not recover} who got their old life back.
There are some rules that I found helpful.
1) the body you have now is not the body you had before you fell ill.
2) Don't push it too hard because it will push back.
3) learn all you can about it. It likes light exercise, sunshine and rest.
4) Doctors don't know why this has happened to you and sometimes won't acknowledge that it has. The only way to improve your situation is to become a knowledgeable as you can about treatment (both main stream and homepathic) options. Try them out and see what works best for you.
4) You brain has been fried by drugs, you can beat the depression et all but you will never be the same person again. Get professional help from some one with ICU survivor experience.
5)Embrace your new self and find joy (I write poetry amongst other things) Not bad for someone who used drive semi trailers and became a very driven business man.
6) Avoid stress as an occupation. As time goes by you will need less help and have something close to a normal life . It just wont be the same as it was before.
7) Be patient, don't beat yourself up. Think in terms of years not days or months.
Both of the above is good sound advice. I was 32 days in ICU and I did not go back to work for 5.5 months. I lost 3 stone while in ICU but that was muscle as the body eats itself. I was moving with a zimmer for 2 weeks and sticks for another 2 weeks just to get about, after being discharged. I know now how lucky I am to be here and that is my positive fall back. I still have problems sleeping and I have a number of heart and lung problems along with arthritis but I try to have PMA at all times.
Hello SEC, it's now four years since I spent a month in ICU and another month in a ward, and I still only sleep for about four hours a night. But I don't mind. A shorter night means a longer day. I still get tired, and need to rest in the afternoon, but I don't waste that time, I lie with my laptop open on my chest and do my shopping.
I think maybe you feel you are wasting time, now you're not able to do all the things you did before, and that is a depressing feeling. But why not get on with something you can do now? Maybe you've always wanted to write your life story? or paint a masterpiece? or work out a maths problem? or like me sew a gorgeous patchwork quilt? You can start by just lying on your bed with a pen and paper, and thinking about it, and writing down ideas.
Not everything worthwhile has to be physically exhausting, and it's good to lie and think of something positive and interesting, especially as you no doubt have unpleasant memories of ICU.
Don't push yourself too hard, you've been very ill, but make sure you do get something done that you can be proud of in six months time.
Hi SEC I totally agree with all the above , I have no memory of what happened to me in ICU and for the next 3 months after that , but I know now I have a totally different life which I'm afraid I have had to adjust to . This was 21 months ago and I have just started anti depressants !!!!!! for ages I was in denial saying I wasn't depressed , but since I've been on them I am so much happier and really sleeping well for the first time in ages . There is no quick fix but good luck in your recovery x
Oh, you are not alone or unusual! It was a good 3 months after I left ICU before I got a full night of uninterrupted sleep. I think someone said that while under sedation in ICU you are not actually asleep - although it appears that way. The body adapts to that, and basically becomes use to a sort of cat-napping rest pattern. It takes a while to re-adjust from that, and well as for your bladder to get back to proper capacity after 2 months on a catheter!
It was 4 months after I left hospital before I went back to work. I was told the rule of thumb is 1 mth for ever week under sedation, so I was a bit early, and I did struggle. The important thing was to share that with a very understanding boss who cut me a bit more slack (having put up with a 5 mth absence as well). And to let a few close friends and colleagues know that things are not back to normal just yet, despite appearances.
There are perhaps some interesting parallels with your case. Perhaps set yourself the goal of doing something physically challenging to celebrate your illness "birthday", and raise a bit of money for the people who saved your life?
For the record it is now coming up to 3 years since my illness. I have completed 7 half marathons in that time, and a 140 mile cycle ride to raise money for Help for Heroes. My daughter has got married. My mum has celebrated her 80th birthday in great style. I nearly missed all those things. ICU is a dim and distant and slightly surreal memory. And I sleep like a log!
First thing, have you got in touch with the hospital? I dope to my gp after my ICU stay but they don't know enough. Going through all my notes with an ICU sister made me feel human again. Her saying that my lack of concentration and my inability to do even simple maths in my head was mainly down to the drugs given. Some of these can take as long as 6 months to be fully out of your system.
Second thing, have you a dog/pet or can you borrow one. I could swear my recovery has been helped immensely by my puppy. If it wasn't for him, I would have spents days in bed. He's help my fitness so much. I'm 5 months down the line and I've not returned to work, my children now walk faster than me, when it was always me telling them to hurry up. It's taken me a long time to adjust to my body post ICU and it's limitations. It's changes you, that's all I can say. Take stock of what's around you, set yourself achievable goals.
Iv just had a very sad day with my sister , she has been in ICU for 109 days and has finally gone to the ward I week ago , at first she was still very sleepy ( during the day ) but night times she is wide awake , she is so down today ,, as she can't do much for herself , it breaks my heart seeing her like this , we have been told she will problery be in hospital untill at least Christmas , it doesn't matter which way she lays she just not comfortable , she is on a drip feed and a high victim drip , she stood on Wednesday by a special machine for 35 seconds , and we cried with joy , but to my sister she just isn't getting anywhere , she even held a cup half filled with water today it shook in her hand but she still managed to hold it , also today she held the controller to move herself up and down , the bed , she was still so sad thinking she couldn't do it , we know it's going to be a very slow long journey ahead but we never thought in a million years it would take this long , I saw a young lad walking in the corridor and wanted to ask him how long he took to walk , and was shocked as he said 2 months I wanted to hug him and felt so proud that he did it , soon that will be my sister xx your comments has helped me understand my sisters fears , and how she must learn to live with the life she will have ,,, not the one she had , thank you xx
Yes, it appears that we who survive the trauma have become different people than we were prior to our events. Between the administered drug therapies and attempting to begin our lives again with some or many physical limitations, it's not a surprise to find many of us are experiencing PTSD and/or depression. I believe recovery is different for each and everyone of us but think just knowing that our experiences are the norm rather than the exception is the key to navigating our paths. For a few years I just kept thinking (and was told) that I should just be grateful to have survived. When you are released from hospital or rehab facilities why are you not warned about the psychological and emotional impacts these events have on an individual? Physical rehab is certainly addressed. It seems like you are only given half the information needed for recovery.
I am thrilled to find this website and I hope to get responses to what I have to say. I agree with so many of you about the trauma of ICU, the length of recovery, the medical doctors' inability or unwillingness to comprehend the toll an extended ICU stay puts on the body and spirit.
A little over two years ago I had a planned open heart surgery. I am middle age, young for this surgery and was in good health and shape. Regular exercise, full time work, lots of activities.
Unexpected complications followed my surgery resulting in DIC...multi-organ failure and small multiple strokes in my brain. I was in coma nine days, ventilated for 11, and in in-hospital rehab for two weeks and then discharged to five months of outpatient rehab. When I was at my worst I wasn't expected to live. I had numerous 'hallucinations', visions or dreams, whatever you want to call them which at this point in my recovery I understand as reflections in symbolic form of how my body and spirit/psyche was understanding what was happening. Initially I found these rather scarey but now I see them as informative and helpful, because I have no recall of the 2 week period I was in ICU. I did receive excellent health care and the support and care of many family members and friends.. And I survived.
At this point, 2 plus years out I experience myself as a different person in ways. I was able to gradually return to work but I decided to work 3/4 as opposed to full time. I don't have the body I used to have...it is changed, and I don't have the energy or endurance that I had before. I have more headaches. I have been able to return to exercise but less consistently than I was before. Some times I am mad about this and a lot of times I feel lonely about it because I don't look sick and few people understand the magnitude of my experience. I definitely fit the diagnosis of PTSD but the symptoms are much less severe now.
When I am in a good place about all of this I can accept my limitations and be grateful I didn't end up with more severe problems. When I'm not in a good place I'm frustrated and mad and I feel a sense of loss for how my body used to be. I will say, overall, that my sense of my spirit is stronger and my art (a hobby) is different. I'm more spontaneous with people. I more easily can consider meditation and do yoga.
A good friend who went through a similar but less severe experience in hospital told me it took him five years to feel he's really recovered. This was actually relieving to hear.
After only a week in ICU it has taken me 12 months to feel anything like myself and to get to this point I have had to push myself all the way, I started back to the gym after about a month just doing 5 mins each time and then gradually doing more, i too could not sleep, did not like putting the light out,did not want to go to bed. i could not use my mobile phone or my computer for weeks, my eyes were not focusing properly, i cried a lot thinking that I was never going to feel well again and oh so many things that did not feel right and now after 14 months i am almost there although i am still a little tired.so i think that you are expecting too much way too soon. the one thing that did help me was the 12 months of aftercare meetings that i had with the ICU department, they helped a lot to reassure me that what i was going through was to be expected, so i would contact the ICU that you were in to see if they do a follow up program, a lot of them do. so try take it easy, step by little step and i am sure you will feel better in time
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