Oh how I wish I was signposted to this site 18 months ago

[Gurberly]

I'm going to stick my neck out and say that I enjoy reading the posts here. Why? Because somewhat belatedly, they reassure me that I am not the only one!

For those that wonder if things will improve, my story.....

It was a Sunday in March 22 that my partner found me collapsed at home with a brain haemorrhage. It was operated on successfully at hospital the next day.

My recovery from surgery was however not without complications.

Whilst in ICU I developed pneumonia and a few other infections which led to an 8 week stay at hospital bouncing between ICU, HDU and back to ICU. It was then that they discovered I also had vasculitis.

I don't really recall my time at ICU/HDU at all. Apart from the odd thing, my recollections start from a recovery ward in about week 9.

What I do remember though are the ICU dreams/hallucinations/delusions.

I didn't tell the nursing staff about them as I thought that they would think I was nuts! I told my partner that I believed I was actually living three different realities.

I am sure others have had similar "dreams". No cute and fluffy kittens, it was all about pain, lack of control etc.

I guess many of them were linked to my treatment at the time.

Being held hostage by the PLO/medicine sans frontier = I think this is how I viewed the nursing staff

A broken wine glass stem through the septum/nose = being intubated?

Being trapped on a capsized/sinking yacht = being washed/bathed?

Being frozen and shrunk down to a miniature and being made to work on nano scale building sites = MRI scans

I've still not quite figured out what the anal rape was about...and I'm not sure if I want to!

And there were plenty more.

18 months on and the dreams are still very clear, I can recall them like they were yesterday.

The road to recovery is not short.

I had to learn to hold a knife and fork and eat again. Bowel and bladder control took a while.

I had to learn to walk again. First off, the physio staff got me out of bed into a chair. Then from there to using a walking frame for a few steps, then from there to walking with two sticks, then with one stick.

It was at this point I made my "Great Escape" 😀 I tailgated a visitor out through the ward security doors into the main hospital. Staff found me about an hour later in the hospital cafeteria 😂

All this took time though. 8 weeks in ICU takes a lot out of you, weight loss, muscle wastage. I still have balance issues, and if I try and run, I'm told I look like Forrest Gump.

Things did keep improving for me.

Approx 6 weeks after leaving hospital I began a phased return to work with my employer. (I have a desk job and had started working from home during the covid lockdowns). Cognitively I still remembered my job, though I got tired very easily.

6 weeks or so from then I was allowed to drive again. That is when I really started to feel “normal” again.

I think that I am now at the point where I am as good as I am going to get.

As mentioned, I still have balance issues. I think I remember most things but you do start making strategies to help remember things, post it notes etc. I have regular infusions of rituximab for my vasculitis which is now well in remission.

That said I am nervous about coming off rituximab as it is possible if not probable that the vasculitis caused my brain haemorrhage. The thought of the vasculitis flaring up and going back in ICU and having those dreams again does terrify me. Though as rituximab makes you immunosuppressed, I am just as likely to end up in ICU through acquiring infection?

Work life is good. Social life is good. Despite being immunosuppressed I feel OK to go out shopping and mix with other people, though I do tend to try and avoid sick children...the little germ balls 😁

I guess I am a success story?

Good luck everyone.

[Alfiedude99]

I’m so glad it’s not just me with the hallucinations/delerium……I went from thinking I was trapped in a tower being impregnated then once I’d given birth at the top of the tower then put back down to the bottom for the process to start again…….in my ‘dreams’ I was counting to 15 for my leg going really tight and going to expose ‘the tower’ my friend told me I had things attached to my legs that inflated and deflated to make sure I didn’t get clots so that’s linked to that……had some really awful and terrifying ones that are causing nightmares for me at the moment because I’ve not even 4 weeks home yet but reading everyone’s posts have really helped because I thought I was messed up because I struggle with my mental health aswell. My sister was amazing and now I’m finding out some of the more typically me experiences……I tried to break out about 3 times….walking round thinking I was one of the staff…..organising a charity match with Tyson fury!! The ridiculous list goes on. Today has been a good day after an awful and emotional weekend so I’ve appreciated every minute of it because tomorrow it could be the opposite…..so so tired though even washing the pots is a 3 step process and end up going for a nap afterwards. Yes you are a success and everyone’s replies from my post shows me I’m not alone in this

[Gurberly in reply to Alfiedude99]

I'm sure if we all got our dreams/delusions down on paper it would make for a pretty interesting read.😁

Funnily enough a few of my dreams were on a repetitive loop too.

I used to have to wear these mittens in ICU as apparently I was quite bad and pulling tubes/drains out of my head, arms etc. These mittens were impossible to remove yourself and they featured in a number of my delusions.

Typically these were when I was trapped in a burning building/room/boat/caravan and so could not open doors turn on taps, pick up a phone etc.

I think it really is about baby steps. You just don't wake up from an ICU experience and everything is hunky dory from day one.

Take care of your self.

[Alfiedude99 in reply to Gurberly]

The gloves 😂 I thought I had big white boxing gloves on but my sister said I was agitated pulling at wires so they put some sort of gloves on, and I remember clear as day when I was awake I was trying to make phone calls and talking to my children with a box of tissues!!

[BigH63 in reply to Alfiedude99]

It’s good to find the funny things now in the Delirium state, ive got 13 nightmares I can recall easily, but the leg issue was so annoying, when I got home I had a 101 questions for my partner, and this was one “ darling was I shackled to the bed like a criminal?” as every time I tried to bring my legs up they were being pulled back. And yes the answer was the leg cuff inflatables. But I was convinced I was shackled to the bed.

😂.

[Mycoma in reply to Alfiedude99]

Thank you for sharing your thoughts I feel the same I came out of hospital in June 21 23 I was in for 8 weeks I stopped drinking n smoking too I sleep so much my body really hurts with the muscles and still I remember like a video in my head the hallucinations.

[BigH63]

Sounds like you’ve suffered a catalog of usual ICU related issues. Delerium, nightmares. Physical issue not being able to eat walk and daily personal things. The ICU syndrome is not good but it sounds like you are on the mend, the through of being back in ICU fir all of us is a thought to far, I to am still at risk of infection and wear a mask in crowded place because of it but it sounds like you’ve got a new normal and are somewhat happy with life ?

I hope that is where I end up in a year from now

Good luck and keep getting better

[Gurberly in reply to BigH63]

Thanks yes... it is a new normal. It is different from the old normal, but it is a normal I can accept.

[BigH63 in reply to Gurberly]

I am looking g forward to the day I can call normal what ever that is as I’m in Groundhog Day at the moment.

[Rhyl1 Partner Moderator ICUsteps]

Hi Gurberly just to address one of your delirium experiences. You said “I've still not quite figured out what the anal rape was about...and I'm not sure if I want to!” But I think knowledge is power and I suspect you had a tube put in your anus, which is done if you have repeated diarrhoea. This is done to protect your skin and is a part of good care. This is not uncommon in longer stay patients, particularly if you’ve had a lot of different antibiotics. I hope that helps.

[Gurberly in reply to Rhyl1]

Thanks Rhyl1 I certainly was on a lot of antibiotics for the various infections so it may well have been a tube insertion that triggered that particular .

[BigH63 in reply to Rhyl1]

Thank for explaining the rape, that explains one of mine as well 😀

[FamilyHistorian]

I really enjoyed that. My sense of humour has always been wicked but now it’s evil and equally my brain doesn’t control my mouth. Can be a little difficult sometimes but it’s not my problem.

I treated my hallucinations as living in another reality and that’s how I dealt with it. I can remember them all and I’m not bothered and certainly some can be related to icu but others have no connection at all and some related to places I’ve never been.

I really like your description of anul rape I remember the plumber sticking a tube up my ass and then sticking a camera down my throat the only problem was I don’t think I asked him if he washed his hands between the insertions.

Bladder problems, don’t go there, spraying everywhere and making sure you have a spare pair of trousers.

[BigH63 in reply to FamilyHistorian]

Funny you mention the no filter from brain to mouth, glad I’m not alone.