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Tired and emotional after coma

Hi everyone. I came out of hospital 3 weeks ago after 3 weeks on CCU and 3 weeks on a ward.i was in an induced coma and paralyzed for 12 days. Although I am doing extremely well physically and moving from a frame to crutches today, I am emotionally all over the place and still so tired all the time. I have very short concentration. I am not having any flash backs and have no memory of being in a coma. Just wondering how long it will take to not feel so tired and emotional? I sleep about 10 hours every night but still tired in the day. I am currently living with my sister as I am still unable to walk upstairs and be totally independent. Is there anyone else going through the same or been through the same? Just want some reassurance? Thank you x

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Depending on your age & fitness pre-ICU - it can take 10-14 days for everyday that you are in hospital to fully recover.

The emotional rollercoaster is as a result, in part, of the withdrawal from sedatives/medication. It took me a few weeks to balance out emotionally. My level of Stamina & exhaustion took a long time to recover from.

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Thank you Sepsur 😘 I'm 52 and was fit and healthy before. It's the forms for getting help financially that I find daunting as usually l live on my own. Thank you for your reply I was just feeling isolated and a bit traumatic yesterday but better today. I know it's up and downs but this site has helped reading other people's experiences. Thank you for your reply x

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I think about the four horsemen of ICU - ICUAW- muscle waste & weakness - ICU delirium- hearing & seeing things that are confusing because they appear to be real - post sepsis syndrome ( joint pain/ tiredness/ trouble hearing/ trouble focusing etc) & cognitive dysfunction - this one meant that I found I couldn’t remember words sometimes, people’s names, places, meanings and how to perform routine tasks. I struggle still nearly 3yrs later occasionally- I find mustering up the concentration & energy to read dense text or fill forms really onerous.

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Hello. This radio programme by a former ICU patient may be helpful. It’s only 14 minutes long. I visited my brother in hospital every day this time last year when he was in a medically induced coma. He is 1 year on doing really wel. I hope this reassures you. Best wishes

bbc.co.uk/programmes/m0001jpv

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Thank you Copse77 I will listen to it and let you know. Thank you for your reply x

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Yes found it informative thank you. Especially about the nurses as I often thought they were sticking pin's in me to see if I was dead or not! X

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I have a blog, which may help. 3 years post coma.... SFU..... still F’d up x

comarecoveryblog.wordpress

I still can’t fill in forms.... xx

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I am glad you found the programme useful. It will take you time to heal so please be kind to yourself. Spring is coming and the prospect of better weather and plants and flowers coming to life is good to see. Take care and wishing you all the best for your recovery.

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Dear Beautyandbeast, First, congratulations on getting out of hospital and being strong enough to write the message you've wrote here. That is an accomplishment!

Now as for recovery: I don't want to discourage you, but it can take many, many months -- sometimes even years -- to recover physically, mentally and emotionally from an ICU illness. ICU patients are the sickest of the sick and recovery isn't a single event. It's a long process.

I know that from personal experience. I was unconscious and in ICU almost exactly a year ago, and I'm now back to about 80%. Will I get the other 20%? Probably not; now I've chosen to celebrate the 80% I have.

My advice to you:

-- Go very easy on yourself. Your body and mind have suffered great trauma. It's easier to celebrate progress when you don't feel you have to meet a set schedule. I know the ambiguity is hard to take -- I certainly felt that and it lead to anxiety -- but the ambiguity of "when will I be well" and how "how much can I recover" are very real parts of the post ICU experience.

-- Read as much as you can about Post ICU Syndrome. What you learn will be a roadmap of sorts. And if your situation is anything like mine, online info will be invaluable as your medical team may not tell you much about what a good recovery looks like and who might be available to help you.

-- Be demanding if you feel your care team isn't helping you enough. It's common for people to suffer mental and emotional after-effects from their ICU stay -- and for the medical pros to ignore or downplay this because they're more focused on physical recovery. If you have adjustment problems, make sure to ask for help -- even months later.

-- Request your medical records (mine were free online from my hospital) and read them. Doing so helped me understand what put me in the hospital and what was done to save my life. Those had been huge, unanswered questions that caused anxiety. Reading my records also helped me realize issues I needed to bring up with my doctors, issues I wouldn't have known to ask about otherwise.

-- Finally, treat yourself. You want to eat lots of chocolate? Eat lots of chocolate! Finding a treat and indulging is one thing you can control at a time when you feel you can't control much.

I hope this helps and I wish you all the best going forward. You're going to have good days and bad days. Eventually the balance will tip to the positive.

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Thank you so much Venna. I know it's a long road ahead. It's just so good to hear other people's experiences to give me hope.

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I want to give you hope. My younger brother was in his late 40s when he was on life support through sepsis from flu. A year on he is doing really well.

This is a great supportive community which helped me and I wasn’t the person that was ill. It was very traumatic for me watching my brother suffer so much but I am so grateful to the NHS for saving his life and to the kind people who post on here and help each other with information.

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When I was in hospital, I was also paralyzed and placed in a drug induced coma, mostly to prevent my fighting the breathing tube, for a period of 11 days. After i was brought out of the coma, I still had the tube in place so was still restrained to my bed, however, Physical therapy did come in twice a day and make me get out of bed and sit in a chair, but still restrained. I couldn't believe how weak i was...I couldn't even lift my arm or hold my head up. After tube was removed, I remained in ICU for 5 more days before being transferred to the rehab floor where I stayed for a week before discharge. I was sent home with a walker and oxygen..when I got home, I thought I would be able to get around my small apartment without a walker or other help but I learned within the first five minutes how very wrong i was!!! I had sat down on a chair in my dining room when everyone finally left. I quickly found that I couldn't get up. Fortunately I was able to scoot the chair over to my couch and have something to help me get up. I learned that lesson quickly. I've been home a month now and I still experience many of the same problems you have mentioned. Although I am able to take a few steps without my walker, I find it tires me out more quickly. Fortunately, I don't have any stairs inside my home but do have to navigate some steps whenever I leave for appts...I'm still not strong enough to drive but I'm hoping I will be able to soon. I find I'm tired alot too! Some days I sleep almost the whole day and others, I can't seem to sleep at all. Physical and occupational therapists have been coming in four times a week and it has been very beneficial...I've improved my strength and just need to work on my stamina. My main struggle is dealing with depression and anxiety which may also contribute to my fatigue. Just take all the time you need to get yourself better...As my doctor reminded me prior to my discharge from the hospital, you're living a "new normal" for the foreseeable future. Our bodies have been through a great trauma and it will take however long it takes to get better! You're doing just fine!

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Thank you so much hansbandu I appreciate your reply x

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