Tired and emotional after coma: Hi everyone. I came... - ICUsteps

ICUsteps

7,457 members2,397 posts

Tired and emotional after coma

Beautyandbeast profile image
15 Replies

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

Written by
Beautyandbeast profile image
Beautyandbeast
To view profiles and participate in discussions please or .
15 Replies
Sepsur profile image
Sepsur

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.

Beautyandbeast profile image
Beautyandbeast in reply to Sepsur

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

Sepsur profile image
Sepsur in reply to Beautyandbeast

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.

Copse77 profile image
Copse77

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

Beautyandbeast profile image
Beautyandbeast in reply to Copse77

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

Beautyandbeast profile image
Beautyandbeast in reply to Beautyandbeast

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

BBDEBS profile image
BBDEBS in reply to Beautyandbeast

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

Copse77 profile image
Copse77 in reply to Beautyandbeast

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.

Venna profile image
Venna

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.

Beautyandbeast profile image
Beautyandbeast in reply to Venna

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.

Copse77 profile image
Copse77

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.

hansbandu profile image
hansbandu

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!

Beautyandbeast profile image
Beautyandbeast in reply to hansbandu

Thank you so much hansbandu I appreciate your reply x

Legan_gray profile image
Legan_gray

Hi Beautyandbeast! I'm glad that you're out of the hospital now. I was in coma 7 months ago and on life support because of cerebral edema and pulmonary edema. In just 4 months I was able to work at home and in 7 months I'm now working again in our office and living a quite normal life, though my knee hurts when it is cold. Let's just be patient and be kind to ourselves and please don't forget to celebrate small achievements. Waking up in coma is already an achievement, but I know based on my experience is it is only the start of a struggle. Just keep encouraging yourself please. And also try to listen to whole body regeneration - full body healing on youtube, that might help. I wish you all the best!

Mycoma profile image
Mycoma

I'm still going threw the same tiredness the aches n pains it's been 3 months now since I was discharge it's awfull .

You may also like...

PTSD after induced coma?

A family member was in an induced coma late last year for a couple of weeks and experiences...

10 months after induced coma

for advice last June I was put into a medical induced coma after having breathing issues due to a...

Physiotherapy after coma

Hi my husband spent 7 weeks in an induced coma,he had covid pneumonia which caused respatory failure

Coping with life after Coma

Hi All, I was in a induced coma two and a half years ago. Went from a sore throat to major infection

Walking after medically induced coma

only 5 days. When he woke from the coma he was unable to walk. It's been 2 weeks now and he still...