To ask what you’re doing awake post-midnight?

[5YearsLeft]

I had a day that just really banged me about, physically, emotionally, just all the ways, and now, I’m laying here awake and staring at the ceiling.

So why are you awake? Crying baby? Can’t stop thinking? Worried about something tomorrow? Pain somewhere in your body being an arsehole?

Welcome?

Evening all

@5YearsLeft I'm really confused about what time zone you're in, or where you might be.. not sure if this is due to random sleeps by you, by me, or by both of us

@jowly Ah, crap, I started the thread too soon. So I’m an hour ahead here in Geneva, Switzerland - it’s 00:49.

Me too. Well Germany at least. Just finished working at my computer. Bleak.

Never too soon @5YearsLeft when I've already been in bed over an hour

Switzerland is high on my places to visit one day btw. My late mum travelled extensively in the 1950s (quite brave of her in those days I think) and she told me lots of stories of her adventures there when I was a child.

@Alonelonelylonersbadidea Ah, those nights when work gobbles up the entire thing until 1am are tough. I hope you can still have a bit of time to relax, for yourself, and morning doesn’t come too early!

@jowly New thread motto: Never too late; never too early. Ha. Switzerland loves visitors! It’s a great place to visit, though admittedly expensive, but summer can sometimes be cheaper than winter (less rich people skiing yet just as beautiful and lots to see). That is very brave of her during those days, and I imagine you cherish those stories - I’m sure they’re very special.

I get to escape the house for a few hours tomorrow. OK so it is only to take the biggest fosterling to his appointment with the paed but I get out of these four walls. I haven't left the house in weeks (shame I have to cancel my hair appointment on Saturday but hey ho, I can't find anyone to be here with DH so I will have to miss it again). Meanwhile, I still can't sleep. I lay here counting DH's breaths and noticing the irregularities in his breathing. He looks yellow again today. Not as yellow as he was before he was diagnosed but yellow all the same and his bilirubin levels in his wee are through the roof.

Fell asleep for 4 hours once I got in from work and now I'm wide awake

Doing Wordle before I go to bed!

@bloodywhitecat you are living through what many of us would say is one of our worst nightmares.

I know you had respite from Marie Curie earlier in the week.. isn't there anyone else who could help? I'd happily do this as a volunteer for anyone local to me (retired nurse, not fazed by medical stuff) and there must surely be others.

I do get you don't want to waltz off leaving any old someone in your home.. is there no voluntary organisation for this..?

Life is so bloody cruel. Sending best vibes x

DH taken to hospital unexpectedly after work so have been running about after my work dropping off clothes, toothbrush etc and collect cars with DS... ate too late as was starving now in bed uncomfortable trying for a MN distraction

@itbemay1 hope your husband isn't too unwell. It's hard to wind down after a shock like that, hope you get to sleep soon.

If not there's usually someone around.

[quote 5YearsLeft]@purpleme12 Hoooooray child! It must be great to see them again. And I suppose hooooray bin! I mean, it needs taking out and you’re doing it, so that’s good![/quote]
I'm looking forward to it!
But let's just hope she's ditched the attitude and horrible way of talking to me sometimes (please god let that happen!)

Got covid and feeling crappy with chest pains despite the three vaccines...

@bloodywhitecat I’m so sorry. I know you said you had the Marie Curie nurse for a few hours; was that just one time? Are there no carers who can help? It sounds like someone is involved if they’re checking the bilirubin levels in his wee, but they’re not involved enough to help you take a break maybe. It just seems so difficult for you to be trapped in your house like that. I know it happens to caretakers all the time, and I know you’d feel somewhat trapped anyway, with your DH so close to the end, but you’re right that you really need a bit outside your four walls. Trying to watch someone and figure out if they seem worse (breathing more labored? More yellow?) is an incredible stress. And I’m sorry to hear his bilirubin levels are peaking; not a wonderful sign, of course. It’s all just really unfair, and I’m sorry.

@momls20 Ah, I hear it! Been there, done that, got the tee shirt. I hope you can find some rest!

@Hunderland Great reason for being awake, ha. I did pretty well on it today!

@itbemay1 Oh no, what an unexpected stress, and then once you finally get it sorted… your stomach won’t cooperate. Well, I hope DH is going to be just fine, and whatever the problem, he’s with the experts now, so please make sure you take care of yourself, as you need to be cared for, too. I hope your stomach settles soon and sleep can come to you.

[quote jowly]@itbemay1 hope your husband isn't too unwell. It's hard to wind down after a shock like that, hope you get to sleep soon.

If not there's usually someone around. [/quote]
Thank you. Not sure what's going on he's waiting a CT and review.. hard to get any info and he can't call me, hoping I'll find out more tomorrow

[quote 5YearsLeft]@bloodywhitecat I’m so sorry. I know you said you had the Marie Curie nurse for a few hours; was that just one time? Are there no carers who can help? It sounds like someone is involved if they’re checking the bilirubin levels in his wee, but they’re not involved enough to help you take a break maybe. It just seems so difficult for you to be trapped in your house like that. I know it happens to caretakers all the time, and I know you’d feel somewhat trapped anyway, with your DH so close to the end, but you’re right that you really need a bit outside your four walls. Trying to watch someone and figure out if they seem worse (breathing more labored? More yellow?) is an incredible stress. And I’m sorry to hear his bilirubin levels are peaking; not a wonderful sign, of course. It’s all just really unfair, and I’m sorry.

@momls20 Ah, I hear it! Been there, done that, got the tee shirt. I hope you can find some rest!

@Hunderland Great reason for being awake, ha. I did pretty well on it today!

@itbemay1 Oh no, what an unexpected stress, and then once you finally get it sorted… your stomach won’t cooperate. Well, I hope DH is going to be just fine, and whatever the problem, he’s with the experts now, so please make sure you take care of yourself, as you need to be cared for, too. I hope your stomach settles soon and sleep can come to you.[/quote]
Thank you! I've just scoffed a rennie so hope that helps. Tired but wired!

I checked his wee as he seemed to lose some continence over the last few days and you can see it just by looking at his wee, (I have to empty his bottle as he can't use the bathroom anymore as it is upstairs and he isn't). I thought he might possibly have a UTI so dipped his urine and his bili was off the scale. The district nurses are coming tomorrow to see him.

@itbemay1 Hope your DH is OK and that you can get some sleep tonight,

@bloodywhitecat sending hugs

@purpleme12 Ah yes, sometimes you do hope they’d grow out of certain phases a little faster. I’ll definitely have my fingers crossed that she keeps it together and lets the attitude go.

@FloatOnBytheStorms Oh no, I know it feels so unfair to feel so awful when you tried to do everything right and have all your vaccines and you still end up with a nasty bout of COVID (I had it last week, same thing - had all my vaccines). As awful as it feels, I remember when I first had COVID in 2020, it seemed like half the people I knew were ending up in hospital, so while we’re all grateful that’s not happening now, it doesn’t help when you feel like crap. I really do hope the chest pains pass ASAP and you’re able to get sleep so you can start healing.

Regarding the volunteer idea, I haven't thought abut but maybe the hospice he is under do something like this, I will ask them.

@itbemay1 Oh good grief, that’s really difficult. I know sleeping tonight will be EXTRA hard with the worry (or maybe you’ll fall right asleep from exhaustion) but you need rest to get through tomorrow, so I really hope you get some. And I really hope the CT provides answers.

@bloodywhitecat Damn. I was hoping when you mentioned the bilirubin in his wee, that meant someone was coming to check those things, not that you were having to dip it from (probably?) a catheter bag yourself. I’m glad at least the district nurse is coming tomorrow. Even though that doesn’t allow you to leave the house. What a crap situation from every angle. I’m just really sorry, and I hope it goes as well as it possibly can.

Keeping me company

@bloodywhitecat this sound so hard for you all I'm so sorry 😞

@bloodywhitecat When I worked in hospice, we would do this sometimes as part of pastoral care, even if the dying person wasn’t conscious. We would sit and read to the patient, so that the person caring for them could have some “time off” as that was considered spiritually caring for the patient’s caregiver as well. I think we also had volunteers who helped. But I know every hospice is different.

@purpleme12 Oh, look at that lovely, sleepy face. Very encouraging for everyone in the thread! Ha.