Coma recovery

[_Dom_]

Hi,

I've just signed up to ICUsteps, I joined because I am looking to talk about things im experiencing after being in a coma, to talk to people who have and are experiencing the same things and understand.

[Sepsur]

Hi @_Dom_

Welcome - we have been through a unique and fairly exclusive experience as have our families & loved ones. The ramifications of which go on for a considerable time after we have discharged home.

Why did my hair fall out? My skin and nails flaked for a while. Why did I feel exhausted doing the smallest activity? I seemed never to be able to sleep properly anymore. Why was it so difficult to concentrate, read or remember things? I felt like I was immersed in a permanent fog.

Why did my joints & muscles ache and why did the extremities of my body have pins & needles?

Was it normal to be so emotionally up and down?

The emotional and mental stress on my family had left them understandably neurotic and in pieces - was this normal?

Talking with others, confirmed that my experience wasn’t unique.

[Sleepalotmore in reply to Sepsur]

This just about sums up how I felt/ feel. With being on a ventilator from 30th December 2019 until the start of February, including 23 days on ECMO. Being discharged sharply 18th march 2020 to get away from the COVID 19 that was spreading. I feel I was left to 'get on with it's regarding recovery, although I had a few phone call and zoom appointments, I wish I had known of this site when I was isolated at home. Even now, 16 months since discharge, I feel a lot of what you point out including aching joints fatigue, memory loss and flashbacks that pop into my head out of nowhere!

[Sepsur in reply to Sleepalotmore]

It’s a long old road back to anything like a semblance of life before. We as a group were determined to have as good a recovery as was possible with all of our peculiar limitations ( each of us in different levels of weakness - whether it was muscular or being able to concentrate). We meet on zoom every week & have various strength building & mobility sessions each week too. cc-sn.org

Best wishes with your ongoing recovery @Sleepalotmore

[oscar2004 in reply to Sepsur]

HiI have just read your response and I get a sense of brushing over the main issue. "sleepalotmore" just like myself were in ICU, myself personally October 19, this recovery time is great if you are retired or wealthy but if you need to work you have no chance. These sessions should have been available after leaving hospital back at the time of leaving. Your response seemed to indicate to "sleepalotmore" that the comments of all the things that she has endured can now be helped through a screen, 16 months later. Just like myself I have endured the horrendous pains and flashbacks on a day to day basis. Do you not think a lot of patients that came out of ICU`s that had been in a coma, deserve better after 16 months of living with day to day issues be suggested that they attend zoom rooms, it seems that a lot of patients have been left to deal with it themselves

[Sepsur in reply to oscar2004]

Hey @Oscar2004

I think you may have misinterpreted my response and have taken umbrage.

I was in hospital 5yrs ago. I was in a coma for 57dsys & in ICU for 90 days. Whilst in ICU, I was told it would take ten days for everyday I was in ICU to recover from my ordeal.

I am self employed - no statutory sick pay or holiday pay - I have a family & mortgage that require an income, so I am keenly aware of ‘having to work’. I did my first piece of paid work 9 months after discharge, I was still incapable of kneeling, crouching or getting onto a ladder ( no sense of balance). My job is incredibly physical but my body was broken.

Speaking with loads of ex patients - I know that we were extremely lucky to be given a rehab gym class once a week by the hospital I was in - this enabled me to rebuild strength.

In response to how amazingly I was treated by all the critical care staff in ICU, including dietician & physios etc etc - we started up ( as volunteers) a weekly exercise group to help others less fortunate than ourselves who were struggling to rehab in the community.

Once the pandemic hit, we moved this one session to zoom. Most of our group were on the super vulnerable register- unable to meet.

We soon realised that we could expand zoom sessions and do many more a week - we now hold 6 sessions a week. An induction, a start up , 2 x intermediary & an advanced session. We pay for this ourselves.

I can only attest to you that our sessions work for many all over the U.K. & Europe on occasion.

There was nothing like this in the community, when I left hospital. To my knowledge - we are the only group doing it @ THE SESSIONS ARE FREE - to any.

We have people attending who came out of hospital 5/6yrs ago or two weeks ago - I’m sorry that @sleepnomore has had to wait all this time - it’s tragic. We are trying to offer a viable solution with limited funds.

I’m not quite sure what you are so upset with - we are trying to fill a huge void !!

Instead of knocking it - why not try our sessions out - it won’t cost you anything except a bit of time.

[raydee39 in reply to Sleepalotmore]

It takes time to get your head around what's happened..I still struggle 12 months on..I suffered cardiac arrest and heart attack ,followed by 3 months coma last year but still struggle with aches and pains and flashbacks. I've started cognitive therapy ,but that just seems to distract me temporarily .

We're in a fairly small club so just try keep smiling and remember that your still upright,which is all that matters ..

[Copse77]

The website link below may be helpfulcc-sn.org/about-us

[PeterJu]

hi Dom. Like you I was put under whilst on a vent in ICU. The recovery phase is challenging and you have done exactly the right thing in seeking out others who share the experience. It was an enormous relief for me to discover that what i was going through was normal, as opposed to unique! I run a post icu support group. We meet fortnightly by zoom. our next meet is this coming Wednesday at 7pm. If you want to join us, I can email you the details of the group. Just DM me your email. Good luck in your recovery, regards, Pete.

[_Dom_]

Has anyone had experiences of angry mood swings disappearing after a while?

I've been home for about a month now and I still have outbursts, mood swings that are just not me 😔 well....I wasn't like that before, I was in a coma for a little over 4wks.

Some memories have come back but I've lost alot of this and last year, I don't remember what happened, only what my family tell me.

I like different food & drinks and dislike ones I liked before I also forgot I smoked.

I can live with those differences but the angry outbursts and moods I find difficult 😞

[Sepsur in reply to _Dom_]

Yes, I believe the sedatives used on us are mood altering, I found that they also decreased my sense of what was appropriate or balanced. I found that I would swing from mild to murderous in a second. Or I could be really funny then morosely sad in the flick of a switch.

I was told that the sedatives could take weeks to fully leave our systems. I don’t believe that I came back to my normal emotional equilibrium for about 4 months after discharge home 😊 - but remember we are all different - some of us mend quicker, some slower…I just wanted to know that I wasn’t stuck “like this”….and I wasn’t. I also couldn’t drink coffee and hate olives - both of which I loved

[_Dom_ in reply to Sepsur]

It's a relief to hear someone has experienced it and it has gotten better with time 😊 there is hope 🙏