Handhold, in HDU with respiratory failure and terrified

[Seafour]

Just that, is anyone awake?

Room for another? and a lovely little Yorkshire terrier (not a yappy one I promise) I'm more than happy to look after all the animals on the top deck 🦒

I'll bring plenty of food thanks to all the steroids I'm on and I'll sit quietly doing my crochet for Wooly Hugs who kindly sent me a beautiful blanket over the summer when I was feeling rubbish

That is one seriously cute dog purpleunicorns

Purpleunicorns absolutely love your dog, so adorable and she will enjoy playing with Lola. Love the fabulous Woolley hugs ladies you are awesome. Welcome aboard.

Today I feel like crap, my chest is congested and I'm dizzy and light headed, I need to consume some calories, I've been nibbling all week. The fabulous PA is making soup for lunch and I'm venturing out to have my pneumococcal pneumonia vaccination.

I have parcels to pack for NZ and advent calendars to send to my dc's. Need to find some energy from somewhere, has anyone got any spare they can send my way.

I'm writing this on the shiny new iPad, with the pencil which I love, still waiting for amazon to deliver the screen protector and case, until then it stays in the box. I have form, when I bought my original iPad I smashed the screen on day one, dropped and ran over the replacement on day four and didn't use it again until I had armour plating for it.

I may need a wee corner of the bus to stay in with my cats. They’re not very good at being away from me. They’re also terrified of strangers, which isn’t ideal, I realise... They decided that they are Indoor Cats. They have ventured into the garden a couple of times since then, but only briefly & to be right by me, in supervisory capacity. They do generally feel the need to keep an eye on what I’m up to & will call to me if they’re not sure where I am. (The first time I was in hospital after getting them they tried calling for me a few times. Apparently it was heart-breaking as well as slightly ear-splitting. Now if I’m ever admitted they spend as much time as they can not just on my bed but on the bits where I sleep - as it were - because it smells most like me. They go mad rubbing their faces on me when I get back, too, so that I am clearly marked as Theirs again. They (sensibly) hate the smell of hospitals though, so they have little shuddery-blechs as they go about this Vital Work.

Am sorry you’re feeling so crap: hope your lungs behave soon. It’s lovely you still get your DCs Advent Calendars - are they chocolate ones?

Sadly can’t help with the energy front. I changed my bed last night (after a hairwash-including shower), did some Guiding stuff this morning & am apparently unwittingly taking part in a festival of nosebleeds so cooking & eating lunch has me thinking it’s naptime. (Need to set an alarm though, because have to make a phonecall. Which hate hate HATE doing. Any volunteers? Delicious vegan snacks [not an oxymoron, I promise] available as bribes...)

Marie double seat reserved for you and your cats, when the paramedics came for me last Wednesday Lola went mad, she cried out and dh thought someone had stepped on her so I know how distressing it is for pets when they have their "hewmans" taken away.

Vaccination done, so today is the first time in over a week that I have been dressed in outside clothes as opposed to loungewear. I look like a bag of shit, I really do.

Advent calendars all sent, a complete mixed bag, tea, chocolates, herbs(home made), Lego, buttons (home made), beauty(home made).

Dh is in a bad mood, he changed the key safe number to prevent ds getting into the house (sad) and now it won't open!!! I did internally scream "why the fuck didn't you check none of the keys stick on your new code, before you locked £60 worth of key inside it" but instead I just said "oh no that's terrible, how crappy for you it must be a really rubbish key safe".

I'm back in bed on the ventilator until dinner time, feeling rubbish and worrying about next week. The countdown has begun seven days ladies.

Any room for one more. Dog is most certainly not coming, she's in disgrace (Stole a nearly full pack of ham), and certainly would encourage all the lovely animals above to misbehave.

I will happily spare energy. I've not got much, but I'm sure it'll do two. Might even persuade youngest child to make Brownies at the weekend, they're deadly, 250g plain chocolate in an 8“ square Brownie.

On my way home. Checking in here. Dont usually post on social threads.

Those advent calendars sound fab. Thats such a lovely thought. Tell me the herbs were dried, not fresh ...

My cat thinks she's a human - can she come? She does pick fights with other animals though so maybe she'll need her own built-in cage on her seat. No pictures on my laptop I'm afraid :(

Thank you Bobbiepin, Seafour and Marie for your kind words about my Mum. It was a decision I never thought I'd have to make but I hope I did the best for her, not me.

On a lighter note, can I bring Harry on the bus please? I'd worry about him too much if he was left to his own devices. He hasn't got many teeth so he doesn't bite!

That was. Hands down. The BEST thread I’ve ever read on mumsnet. Not obviously wanting to read it. As in. I wish you hadn’t gone down that way. etc But that was one hell of a story. You ever thought about writing a book? I stopped watching my iPad for this thread. Trust me. You should feel honoured 😂😂. Wowie. Awesome.

I can’t really articulate what I want to say. You’re heroic. For sure. You could and would help others so much. I love your humour!!!! You’re witty. Intelligent. Articulate.

I feel truly humbled to of read about your life

Thank you for sharing.

Not much energy to share here. Had some childcare issues earlier in the week and although I've had some support DD hasn't been in nursery and it's put me back a bit. I managed a trip to a supermarket for dinner but it's done me in. You can have whatever is left though.

Evening! Hope you’ve a bit more energy tomorrow Sea.

I’ve spent the evening listening to my 8 year old practise the viola. I’m not sure I’ve ever heard a noise like it . He was so excited though not even his big brothers could voice their true thoughts on the racket music he was making.

Vaccination done, afternoon and evening spent on the ventilator which meant no dinner. Dad daughter came to visit which made me very happy. It's lovely, two years ago she would have said a curt "hello" and then ignored me for the evening, now we can chat, compare photos on our phones, play with Lola and she's asked me to collect some bits from a local shop for her, huge progress and hope for the future.

The new iPad has a cover so has been removed from the box, I also have a wonderful new Littman Stethoscope to replace a mediocre one I've had for a few years.

The handyman is currently onboard the bus installing cat hammocks and scratching posts, downstairs next to the toilets are a row of self cleaning odourless litter trays and the onboard menu now includes a range of pet meals and treats. Catnip is available but only once a day.

Inflag welcome aboard find a seat.

Zen all advent calendar herbs are dried and of the legal variety

Yawning welcome to you and your feline

Sparkly of course Harry is welcome. What you did for your mum was a selfless act of love, never think of it any other way. The selfish thing to do would have been to keep her alive, unhappy and suffering. If she could talk to you now she would be saying, how proud she was that you could put her first and been brave enough to let her go and strong enough to convey that to the doctors.

@jubba Why thank you, I do indeed feel honoured that you should pay me such compliments, please stick around and hop on the bus for some nail biting moments to come as I go through surgery and come out the other side.

Bobbipin bless you for sharing that little bit of energy with me, it's been very gratefully received.

Diangled oh the pleasure and the pain of listening to children practice their instruments, will you have to endure a Christmas concert too?
The first year that dd was in national youth orchestra was the year we got married, we returned from Paris where we'd honeymooned to meet up with eldest dd (who had heroically spent her extended holiday from NZ looking after her siblings) and her partner to go and watch little dd perform in the orchestra, I swear I could here her instrument over everyone else's.
Poor thing I embarrassed her because I still had my tiara on, having worn it every day for a week. I was so happy I never wanted to take it off.

Ventilator going back on, Lola is having a sleepover in our bed because she's had a bath and smells lovely and is extra soft and fluffy, she's grunting and snuffling next to me.

Tomorrow I need to eat more, if I'm up to it I'd like to go to our local farm shop for breakfast, then it's off to buy a Christmas tree so that I get a few days of enjoyment before I go to hospital.
We have two of the dgc coming on Saturday for a sleepover, it will be the first time they've stayed since we told their df that he wasn't welcome overnight. They've been very upset, they have stayed for three nights a week for the best part of two years.
They have planned the weekend, bowling followed by Wagamama's for lunch, a spot of Christmas shopping, an evening of movies and a buffet dinner (Christmas party in their minds).
Pancakes on Sunday morning and a dog walk then decorating the tree and building Santas grotto. My son's latest ex is coming for lunch with their baby half brother which will be lovely.
This year will be the first that they won't be waking up in my home to open stockings with us, their dm has met someone, he's lovely and is a good role model for my dgc which I'm happy about. But inside my heart is shattered into a million pieces.

Anyway it's the last time I will spend with them, other than Tuesday after school and I want it to be wonderful. In the back of my mind is also the reality that this could be the last time they ever see me. There is a very real possibility that I could die next Thursday or in the few days that follow surgery. But if it's my time to go there is nothing anyone can do about it, no surgeon or intensive care team can change that so I will trust God that he has more work for me to do, there will be more pain and suffering too, it's just the life I've been given to live, one day it will all make sense. Apparently there is a book to write too.

@WheresTheCoffee I quite forgot to welcome you yesterday, how very rude of me, I do apologise. Take a seat please.

Oh poor wee Lola-bunny...

When I had an NJ tube a couple of years ago the cats were hugely suspicious of the Nutricia Homecare nurses when they came by. Blond!cat will quite often brave investigating Strangers if I’m there, but my black!cat will, at most, peer at them from the stairs. With them, though, he was so convinced that they were Up To No Good that he suddenly shot into the room, yowling, & did a lap of Fierceness, then was clearly desperate to leave, but wouldn’t abandon me, so instead settled on sitting on top of the door voicing his discontent about the whole situation: any time one of the poor women tried to touch me he yowled the house down... to be fair, for some reason they insisted on aspirating the tube, which you don’t do with NJs & you really don’t with teeny tiny mini supernarrow ones. (So SO uncomfortable. Bleh.) Same week blond!cat insisted on trying out the HENS team’s scales when they turned up on their first visit before he’d let them weigh me. (Less stellar behaviour = them chomping their way into box of tubefeed to get to a leaking tetrapack & then chew the pack right open because apparently soya+ feed is delicious if you’re one of my fluffy little weirdos.)

Thank you for being so understanding about them though. I got them when they were 8 weeks old - they’d been living in a loft with almost no human contact & are superbonded to me. I picked them up the last evening of the Diamond Jubilee weekend & let them just hang out in the kitchen with food + water + litter tray + bed + carrier to hide in. Next day (after a trip to the vet...) we all stayed in the kitchen & they occasionally snoofled at me. (They also played with litter from their tray because they didn’t understand what the toys I’d got them were...) Next day I took them to the sitting room & they started by sitting about a foot away from me. Then there was some sprinting across me. Then sleeping right next to me. The next day they were sorting out who slept where on me & blond!cat was showing off his purr made for a lion-sized cat. Black!cat took much longer to get to purring & was scared of his own purr when he first purred - he tried to back away from it, all wide-eyed & eat-swivelly. They both let me clean sleep from their eyes & check their claws & clean their teeth & give them medication, so they do seem to think I’m some kind of odd mummycat-type...

V glad you got your jab out of the way. Am confident, thanks to my extensive litter-tray emptying experience, that you very definitely do not look like a bag of shit... appreciate it is a miserable feeling, though, when you get yourself dressed & find yourself thinking that actually you looked better when you were schlepping about in your jamas. Or at least, there wasn’t the improvement you feel there should’ve been.

The advent calendars sound lovely. A friend made me one a few years ago because she was really sad for me that I didn’t get to have one (the whole dairy = my untimely death Thing cramping my style again) & it made me feel very much cared about. To have that from your mother must be absolutely incredible - it’s obvious you do heaps to show them how much you love them & how special you think they are, but I can imagine how lovely it would be to get that daily-tangible reminder of having a mother who cares about you enough & knows you well enough to make you something like that. (I’m still excited about my death-free advent calendar mind you... even if having a calendar of my own seems a bit weird... I’m going to be terribly sad if the chocolate is grim, but...)

Keysafe Thing = exactly sort of thing my brother does. He also then goes all stompy & sweary & VERY Woe Is Him. (He works away but prefers living in London so is here as much as he can be.) Hope that you can get keysafe fixed & that your DH has calmed down by now...

How very fine re: shiny new iPad. Having it all sorted before going into hospital = key, no? I wish you much joy of it. Also your new stethoscope: enjoy all your scoping up steth...

Vvv pleased that visit from your DSD went so well. Hope that relationship-rebuilding keeps progressing well. Will hold my thumbs for you. Also really hope that you have an awesome time with your DGC & can get through it without any of The Sad sneaking in. At least you have us here now for ifwhen the Sad+Scared ambush you. Letting yourself feel them is important obviously - nice as it would be to get to skip them - but being able to articulate “I might be going to die next week & I’d much prefer not to thanks awfully” = so so SO important. Bit of an arse there’s not much to say in response beyond that obviously we also prefer you doing the alive thing & it would be a low blow, even for The Donkey Of Destiny, famed for crapping on people from a great height, to put a stop to that.

PinkSparklyPussyCat
Oh but Harry is so cute. My Daddy’s last cat had no teeth. She was an elderly lady - no teeth & no tail but lots of love to give. Current cat (all hail the awesome Cleo[catra]) arrived from someone who’d rescued a dog. C was being bullied by said dog & her lack of size = partly due to dog eating her food. She’d already had a litter of kittens though she was only around a year old too. She is now, despite still being on the small side Boss Cat of the neighbourhood, routinely beating up anyone who looks at her funny. She also brings in mice & frogs on a regular basis. And worked out how to unlock the old catflap, necessitating a replacement. (On non-cat matters, am glad could help even a tiny bit. I spent a VERY long time convinced my mother’s death was my fault [that if I’d realised she was going hypo rather than talking the sort of nonsense you do with imaginative 10yos then I would’ve treated her hypo; she wouldn’t have had to go to hospital OR maybe could have gone to hospital where her care managed, not local one; then she wouldn’t have been given too much insulin & died a horrific death...] & carrying around guilt like that is terribly destructive. Putting it down, of course, isn’t a simple thing, but I really hope that now you’ll be able to put that guilt away & enjoy remembering your mother’s life. Am worried that sounds all wrong &/or patronising & it really isn’t what I want-mean, but I cannot find the right words much less the best ones. Sorry.)

Aua aua autsch. Woke myself up by subluxing an assortment of my joints in my sleep & can’t seem to reduce all of them. Did let me catch up here, but I quite need to sleep. Time to grab some icepacks (you mean you don’t keep a box of single-use ice-packs by your bed at all times?) & see if I can persuade my left side to calm down enough to let me sleep, at least..,

Sea I hope you're feeling a bit better today and manage to get out for a lovely breakfast

Countdown to surgery, Six days to go.

I feel better today, actually woke feeling refreshed for the first time since I got ill last week, it's a feeling I lived without for over 10 long years.

NZ parcels must go today, also need to show PA how I want the presents wrapped as this will be her job, revisit Christmas lists and wrap December Birthday presents, make cards and make sure everything is labelled correctly in the wrapping room (yes we have a wrapping room at this time of year).

I also need to make a final to do list for hospital, sadly life experience has taught me that I can leave nothing to chance, not even the potential life saving sign to go above my bed that says "PARALYSED DIAPHRAGM DO NOT LAY FLAT cloud result in respiratory arrest"

So even though I will spend my entire stay in Intensive Care and High Dependancy I won't feel safe. Alarms will be set on my phone to ensure I'm repositioned regularly, daily skin checks for signs of pressure wounds must be carried out in the presence of PA or DH and recorded. (I have always left hospital with at least one pressure sore).
Then there are the splints, my body is kept in the best possible condition by following basic neuro plasticity principles, my body should be aligned, supported by carful placement of many pillows and my three non working limbs splinted overnight to ensure the muscles don't become contracted over time.

I keep my own checklist for really basic stuff like oral hygiene ( shocking in my experience) in all of the months I've clocked up in hospital I can count on the fingers of one hand the number of times I have been encouraged to brush my teeth. I would love any hcp out there to comment of this, is it something that is taught as part of a nursing degree? Are med students aware of the potential health implications of poor dental hygiene, especially for long stay hospital patients?

So people, I have a question for you - to blog or not to blog? I can't keep chatting here and maintain a blog. I love the chat element of this thread, it gives me a lot. But I could potentially reach more people with a blog.

Is it right, is it fair that I have to rely on my husband to get me ready for bed every night for the duration of my hospital stay????????

A blog would reach more people, so go for it. I have just read this thread all the way through. You write beautifully. Glad you are feeling better today. You have gone through so much.

seafour I trained as a nurse 31 yrs ago before a degree was deemed a necessity to be a nurse and daily oral care ( toothbrushing, cleaning of dentures, mouth wash ) was drummed into us along with bedbathing and fluid balance charts
I'm astounded ( but sadly not surprised) that patients hygiene is often neglected these days...unfortunately staffing levels are not helping...I think 12 hr shifts were the worst thing to happen to nursing
We used to work a mixture of 8 hr early and late shifts, which meant there was a period of 2 hrs in afternoon when the ward was extremely well staffed ( and student nurses were expected to do their fair share of the work) .i used to go home tired, but nothing like the tiredness of working 12 hrs without a decent break...nowadays nurses are expected to work a mixture of 12 hr shifts ( days and nights often within the same week)...it's a crazy dangerous way of staffing and one reason so many staff as burning out and leaving the profession

Where are you all today?

I need your feedback and I'm still open to questions, you can really ask me anything about my life my medical conditions, my experiences of dv and coercion or my bizarre childhood and totally dysfunctional family.

I'm here - I'm currently being used as a cat chair because I had the cheek to leave early for work...my cat was most put out!

I don't have any questions though!

A blog would reach more people, but the selfish part of me is also enjoying the friendly, chat type interactions...tough call!

No way should your DH have to get you ready for bed when you're in the hospital, your care should not need to be his responsibility. Unfortunately, it doesn't surprise that it is!

MrsSchadenfreude, thank you.

Havering I'm old enough to remember old fashioned nursing, I actually think that the old Nightingale wards must have been easier for nurses too.

I've never managed to subscribe to blogs so for selfish reasons I'd prefer you to stay here 😀😀

Delurking to offer my personal care skills (including dentures and teeth brushing ) in exchange for a seat on the bus.
I can also bring my feline lump but don't bother fitting a cat flap, she won't use one.
That Is What Humans Are For.

I am here and selfishly much prefer this thread to a blog. I like the chat aspect much more. With a blog it all feels much more one sided.

Shocking thought about the oral care, but in truth given all the other serious misses it should not shock me. Your lovely DH may just feel that this care is a good way to show his love. Thank goodness for him.

So glad you feel like you today. Nothing better than awakening in good spirits and feeling well. Long may it last. 😍