As many of you will know I had massive problems with HE in the past. I know how bad it can be. I was in and out of hospital for months with it but as many of you know, there was a big Orange Order march in Glasgow on Saturday which prompted my memory of the same march so 2years ago. I was in Glasgow royal ward 9 at the time, my home from home. So the parade passes right past it and it’s a blummin loud affair. So that all goes off for about an hour then it quieted down and a normal Saturday ensued. I was totally fine and didn’t have any HE symptoms, or so I thought. Cut to the next morning. Starts off as a usual Sunday. Woken by half 5 with the stream of light coming through the massive windows on the ward. Then I’m just laying there. Trying to doze back off and all I can hear all around me are northern Irish accents. I’m still as you be, just listening to the chatting around me. So from further down the ward I’m hearing, ‘god I can’t believe we did that last night’, did you see what sammy did. Blah, blah,blah.
I’m not knowing what’s going on. So I take out my note book( used to have it as I was always forgetting stuff so I would write everything down) putting down that they were disappointed as they thought they were due a cooked breakfast, disappointment with the cleaning facilities, lack of towels and so on. Basically giving the hospital a hotel review.
Whilst all this is going on and I’m scribbling away, the doctors start doing the rounds at 10. I’m sitting there thinking right the doctors are here, this will all get sorted out now, normal service will be resumed. But NO!!!!!
All I heard was well you had far to much to drink last night so the police brought you in to sober up as you were causing disturbances and in the cells the doctor said you all needed medical care. ‘Now remember to see your consultant when you get back to Belfast’.
I must have heard that about 10 times. So I’m laying in bed, scribbling all this down and that it was all a plan to get a bed for the night and how they were all going to do the same next year. I’m thinking I’m going to be running out of ink and how I was going to the papers with the fact that the hospital was being used as a hotel and how this was a disgrace and putting the ward to rights. You know the sort of tangents you go off on. I’m laying there with me note pad in my paw, waiting, just waiting till visiting time.
My sister comes in and I’m starting to tell her everything, she’s looking at me all strange. So where are they now?? Oh down there, watching the telly. The ferry doesn’t leave till 5. She turns and goes to the lad in the next bed, so what do you make of all this? Fellas pipes up with, ‘all what?’. Further strange looks. I’m pointing to all the notes I made she takes a look at a blank page. Oh it’s before that. I’m turning page after page of blank pages. She then goes, oh wait here. I’m still laying there raging that nobody believes me. Nurse comes in. Well William, we just need to give you this. Can you roll over on your side and pull your knees up to your chest. You guys know what’s coming........
After that, my sister comes back in. I’m not talking to her now cos she sold me out. Snitches get stitches was that only thing I was willing to say to her.
For the next 24 hours I was so pumped full of laxatives I lost count of my sprints to the toilet. Eventually I fall asleep that night and wake up the next morning as if nothing had happened. So much so that I thought perhaps I had dreamed the whole thing. Well until my sister came back in to visit and decided to mock me for the next few hours.
It strange that even although I was obviously deep in HE at that point I can remember everything about that day, down to minutest of details but most of it never happened. It’s ok that I can laugh at it now and even the next day, but for those 24hours god knows what the nurses and doctors were thinking that I was doing.
Anyways, it cheered me up just thinking back to the way that I was to the way that I am now. Well I say that but as we all know it can strike again if your not careful........
Have a great day everyone and take care.
Mind how you go.
William.
Written by
Willh0
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About 5 minutes ago 11.20am I arrived at my gym after attending the hospital for numerous blood tests which my GP has requested today and not at the end of August as I'm having a few itchy issues!
Anyway I've just read your interesting detailed message above which I must say I quite enjoyed reading whilst biking away. It's amazing how our brain can actually play tricks and make certain things seem so real at times! Maybe you could extend the story and write a book? 🤔🤔🤔
Take care my friend and hope your well otherwise !
Thanks for your response. I was in bed last night at about 4 and I too have the dreaded itch. I’ve had it for just over a week now and out of all the problems I’ve had it is undoubtedly one of the worst. I’ve got a narrowing of my bile ducts which is effecting my levels and in trying not to itch but it’s one of the hardest things not to do. Itch one spot and it moves. It’s not good at all but as with everything we’ve just got to try and power through it. It was that bad that I got up and put together a rowing machine, but that’s another story.
I’ve only ever really commented on other posts before just to try and keep people’s spirits up and we all know what a stressful, upsetting and dark these issues can be at times but I’ve liked the thought of sharing my experience both good and bad to try and help people feel included as it can be a very lonely place dealing with this illness and I’ve lost many a good friend to it.
As far as a book goes, it’ll be more likely be something pamphlet sized although I do have a habit of going on about things. My only wish would be for anyone that’s having a bad time of it just now to know that you can get through it. I’m nowhere near finished with all the tests and other things going on with everyone’s treatment but I just thought a wee light hearted tale of it might raise a smile for everyone that might be struggling with it.
Again, many thanks you replying. Now to try and find the last 2 bolts that I dropped at about half 6 this morning that rolled under the sofa. Wish me luck with that badboy.
I must say once again I do find your tales quite addictive 😁! I so look forward to reading another of your imaginary stories which I'm presuming you could think up whilst rowing across the ocean 🚣♂️🚣♂️🚣♂️ should you find those 2 missing bolts 😂😂
I really don't know what to make of it, your tale is certainly strange. I think it would be (or actually it already is) a great short story! Just a thought, but I think you really have something there.
The brain has the most remarkable abilities. I love the way you can just hear the Irishmen going on about the accommodations, lol, and how you had worked out how they got there, and how they were leaving (by 5 o clock ferry!) And your outrage, priceless, lol. Thank God you are okay now. I don't know how or why this happened to you , but since it did, I would have to say you have been given a wonderful gift! 😅😁
That’s only one of many. I was in and out of hospital for 26weeks in 17. Thankfully my family and the nurses saw the funny side of things and the strangest part of it all is that I could remember most of it as it happened with no blocks or fogginess at all. Really stupid things like having a detailed conversation with someone over the merits of removing Glasgow cathedral from its current location as it was blocking the view from the hotel room(ward) and how we should turn that part of the hotel into a swimming area. The details and my recollection of nearly every episode I had are still so vivid that I could have sworn that they were real. Only reason I was thinking about a pool was I was on my way back to bed after having a shower in the morning and I had my dressing gown and towel with me.
It truly is amazing what your mind can come up with. Thinking every morning that the doctors would ask me what day and date it was? Checking my phone and hammering it in. Friday the 8th, Friday the 8th, Friday the 8th. Ok William what day is it? Friday the 8th doc. Ok, what month? Bugger, don’t know. Think we’ll keep you in for a few days more.
I’m just startled that I can remember so many details of it but it wasn’t really me doing it. I don’t know how the put up with me every single day. But that’s the NHS for you. Everyone is amazing. I just hope that by people reading this that they know that they are not alone in this sort of thing and no matter what stage their HE fits to that given the right care that there is an end in sight and a target for people to aim for.
Thanks for replying, although you’ve just spent 5 minutes of your life reading this ramble.
Hey Will I certainly do see the funny side of things too. It's the vivid details that make your stories seem real despite their absurdity. Glasgow cathedral becoming a swimming area! 👍😁 Good stuff. I recognize your talent as a writer even if you don't and if, as you say, there are no blocks or fogginess in your memories, maybe you were divinely meant to write these stories in particular. They have a certain amount of science fiction at their edges that is very appealing, I can easily understand you thinking that I must be a little off myself, but I hope you finally write them all down, seriously. 😅😁📝
To be honest boots, it has been something I’ve been thinking of doing for a while. Not a book or short stories per-say I was more thinking about you tube or something. Having said that, this was back in the day, so that I could show people my progress from the start to finish where ever that led. There was nothing I could find that I felt that I could associate myself with. You know the sort of thing, bored on a Sunday night, oh nobody knows how I feeling or going through. I’ll just go and have a drink or do something more serious. Not me but just somewhere or thing that would show people that they are not alone in all this, as not everyone wants to go to meeting or groups. Hard to explain but I’m guessing you know what I mean.
Then I quickly realised that perhaps I’m not meant for TV. Face for the radio as they say. My wife, well separated wife is a journalist and has the writing talent in the family so I guess I could talk to her about it. It certainly is something to think about. I think that there are lots stories that are fact based but not feeling based. It would be a bit of a tightrope between trying to keep the humour in it whilst trying not to make little of it.
I dunno. I’ll try and structure it in such a way that it would be able to cover all bases. But it certainly is an idea that I have had in the past.
I’ll need to have a think about it but having said that I’m not doing anything else just now really. Well apart from my non swimming rowing adventures.
Sorry for the delay, I wasn't able to finish my thought before it was sent! I am going to stop, I don't think I am putting it right what I wanted to say.
Brought back tons of memories reading this and the joys of h.e. Lol
You will remember them and they will feel so real for a long time to come but as long as we laugh at the wonders of the brain and the how toxins effects us then it's all good 😊
And your right the itching is awful have you tried a cooling spray? You can get from boots it worked wonders for me post transplant when I was suffering from rejection I wish I had discovered it pre it may have saved me a few war wounds x
That badboy is going on the shopping list. It’s really really annoying me now. It’s strange, I never had it pre transplant and only happens at night. But hopefully that spray will help.
With the HE, it’s good to be able to look back and laugh at it but at the time it was so scary. Hopefully it doesn’t come back.
Hi Will. When I had HE I thought that I was invincible. Wife said she doesn't know how she managed to keep me safe. Also, I thought that the hallway was the downstairs toilet, that didn't go down too well at all. Luckily I only had 2 short spells of it and both followed sessions of TACE. It's good that you are free of it now and hopefully it won't return. Regards Alf.
Alf when I was at home at first I had the same problem with the toilet. Problem was that we had recently moved and the door to the old toilet was now where a door to a walk in cupboard now was. So I was clambering about with the lights off so I didn’t wake myself up too much. So that disturbed the Mrs who I’ll say kindly (it was more colourful language than that) pointed me in the right direction.
Sorry but I only just came across this on one of those related items sort of links you get on here!
Just had to say you really made me laugh (quietly to myself because wife is still asleep 😁) because it brought back so many memories for me. 😁👍. So thank you for that 👍.
Of course some of the hallucinations were OK and some not so 👎🏻, and as you say the worrying thing for me also was this inability to distinguish the real world from the one made up by your poor brain!
Looking back, it’s was a very scary thing. Didn’t really seem so bad at the time but that said I wasn’t really with it. It’s only when I speak to people that were about me at the time that it really hits home.
I was back in the ward the other day, volunteering, and just talking to the nurses made me realise how bad it was. When one of the nurses says to you, “you know, there was one night I was in the bath thinking of you, (calm down, not in that way, although I did have to ask) and I was thinking off all the stuff you’d went through and yet your still here.”
( can never remember if it’s “. Or .”, still I digress)
It makes you understand how bad things actually were. You make light of it, well I do I suppose as a sort of way to cope with it all, well at least I do.
I guess that’s just the way of dealing with it, make light of the situation but really deep down it scares the crap out of you. Yet everything seemed so normal at the time. I guess the main part of it is just doing what you have to, to deal with it all.
That’s far to deep for this time on a Sunday morning. That said a few years ago they would have you, up, washed, shaved, fed and watered by 7. All prepared for another day of laying in your bed all day with nothing to do all day apart from dream of some food with some seasoning on it. No salt mind, that’s the devil’s plaything. I would have killed for a packet or ready salted walkers. All I was allowed was a packet of salt and shake crisps(if your old enough to remember them) only without the small blue packet of salt!!!!
Yep - I’m afraid I still laugh about it - but I guess not in a funny haha sort of way but..well I know you know from what you say above what I mean! The thing is at that time I didn’t realise the damage it was doing to my brain ☹️ Boo hoo! But there was nowt I could do about it. Lactulose -maxed out - Rifaximin and then those dreaded self administered enemas 👎🏻. Thank god for my TP ending all that misery.
Sorry yes to early in the morning- especially a Saturday,
On that note, I remember all the tests that they used to do to test me on that. What the date? I dunno, I wasn’t reading papers or looking at my phone. I could have been weeks out. Then I hit upon the idea of asking a nurse in the morning. Quite a controversial method, I know!!!
6th of October, 6th of October, October the 6th. Over and over. Mr Hughes what’s today’s date??? Smart arse me, the 6th of October doc, sitting all smiles thinking got ya. Ok, what day is it??? He had me. Back to the drawing board.
I was sitting coming up with all these elaborate plans to remember the dates and things. Sitting there with my mind going like Wile E. Coyote and all to try and remember a date.
Talk about thinking your going mad!!!
Still that’s a few years ago now and long may it stay in the past. It just amazes me now how your mind actually works and how in the space of a few hours everything you know totally changes.
Haha yes I remember those sort of questions! So blurry infuriating. Bet you had the one where they said I’m going to tell you a house number and street name and ask you in 5 minutes what the address was. Aaaghh - I could sometimes remember part of the street name (but not whether street, road, avenue - no idea of course) but the darned house number not a chance in hell! 😁
Yes those times are long gone thanks to my lovely new liver which must have been so well looked after by my donor. Shame in some respects you don’t get told more about them except age, sex and why they died. But I understand the reasons why they don’t or can’t tell you....
If failed that test by a massive amount 1 day then got nearly full marks 2 days later. It was well weird.
My favourite was the name as many animals in a minute game. I was giving it meerkats, cobras, parakeets,platypus all these obscure animals. Not once did I say dog, cat, horse, cow, sheep etc etc. I rattled off about 15 in 20 seconds then the fog set in and I was just sitting there with a daft look on my face. Apparently.
Just so glad it’s over, well at least for now.
I think this is the main reason that I like this forum. Conversations like this as you can be so scared and worried about everything that’s going on to you and not have anywhere to turn and then you come across this site and know that your not alone and people are/have gone through the same thing that you have and it makes it not so scary anymore.
I think that’s why I go back and visit the ward I was in so often. I spoke to the nurses about it and they were saying that’s it’s a very good thing as they can point out, see that big goofy looking guy walking about?? He was in a worse position than you were but he stopped drinking and took the doctors advice and look at him now. Up here visiting and making a general pest to us all.
I think that’s why this site works so well as you don’t hear many successful outcomes when your in hospital.
Yeah, 10 months ago now. Off the steroids and slowly cutting down the medication. I’ve been more or less fine most of the way through. Had a blood clot in my chest and were worried about my bile ducts but they both seem to have settled.
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