Handhold, in HDU with respiratory failure and terrified

[Seafour]

Just that, is anyone awake?

Unless your Secret Identity = Bed Manager for relevant Hospital/Trust AND you’re Working From, er, Bed, that’s some EPICALLY misplaced guilt...

Everything that Marie ^ said!

You’re doing fantastically

You are doing so well and it is great to see you sitting on the side of the bed. Don’t worry about bed management that isn’t your monkey. Do you know that expression?

Today has been shit, started so well with me sitting out in my wheelchair for an hour. Then my back went into spasm around the same time as my morphine pump was removed, I did argue that moving more means more pain so could they leave it a day or two but they have fucking protocols to follow etc etc.
So since midday I have been in a shit ton of pain, at times, screaming and sobbing which is just not like me.

I needing huge doses of morphine 30mg per hour plus intravenous top ups from the intensive care anaesthetist, I hate doing this because it's not good for my breathing, so needing the ventilator more and more.

So their master plan to get me up and moving more was shit and right now I wish I was dead.

seafour sending you well wishes. Sounds awful, I can't imagine what you must be going through right now. Hope they can control your pain management better xxx

Wishing you a good night's sleep, plenty of morphine and to wake in the morning feeling much improved

Protocol is shit. Really shit.

I hope they get your pain under control soon x

I've been following your journey and I'm sorry to hear you've had a shit day.

You're simply an inspiration and I hope you are able to get some sleep and going forward either there's an improvement in your pain or they replace the morphine pump

Protocols are shit. Guidelines are marginally better because at least you can individualise.

Hoping for a better day tomorrow.

Protocol works great in theory and on paper but when it comes to applying it to humans a huge dose of common sense and flexibility is required.
So sorry to hear you've had a rough day hope they can get your pain under control and make you more comfortable.

Oh, no, you don't really. But you are going through a very difficult time. (That's an understatement.)
Could you manage to ask for your lovely doctor (sorry, I've flicked back a bit and can't find the name) to come and see you now?
I think you should.
Call anyone and everyone who can help you. This is a desperate time, but I hope you will get help.
You are not alone, Sea.
We are all here with you. Sending you much love and strength.

What an utterly idiotic protocol... can pain team not intervene/anaesthetist overrule? How did they not plan for this properly the buckeejits?!

So so sooooooo much better for people to be on low dose with bolus (or possibly bonus, according to autocorrect ) as necessary via the PCA than uncontrolled pain & relying on IV push as available.

Am really sorry you’re having such a bad day lovely. Hope that they sort out appropriate analgesia ASAP; that you’re able to sleep tonight; & that you feel better tomorrow.

Please please keep posting to me. It really helps. Even if I'm not posting I am reading, I'm feeling very alone right now despite having lovely nurses caring for me. If anyone wants to visit in rl I would love that, I'm in the midlands.

I posted yonks ago, but then missed the bus although I've been reading ever since.

How amazing you are for everything you've come through in the last week, not to mention beforehand. It frustrates me so much how patients have to fight their corner so often. It sounds likely you've been on the raw end of things today but you know you have it in you to get to the stage where you're getting the longer term benefits from this operation.

Hope you manage to get some sleep.

Just checking in with you Seafour, doing my nightly round to see how you are doing. I'm sorry to read you've had a crap day. I hope things improve. I'm trying to think of something that might amuse you, but am not coming up with much, so here's a picture of some guinea pigs eating coriander instead

Hello Seafour, just checking in. Sorry you're feeling so alone tonight, that's a rotten feeling. I've had a mad busy day in central London meeting a client then a decided to do a bit of Christmas shopping. I was exhausted when I got home. I fell asleep with a young cat on my chest. I'm nodding off- just wanted to send you a hug first though.

Xox

I also posted a while ago but haven't had a chance to reply recently.
I have been reading though.

Seafour my words aren't enough and I couldn't articulate them well enough. But you have been in my thoughts frequently. The same as many others I'm sure.

You're not alone, we are here. 🦋

oh my dear Sea that is a sorry tale you tell. Protocol Shmotocol be damned! I do wish I was near - I would come and help rant for you (give you a wee rest) and smuggle in some forbidden fruits of some sort. Alas, I am far away. I shall give you a giant (gentle) hug right here in my heart - feel that? Now just settle in there for a minute or two. It helps, doesn't it? I shall refrain from the rather vigorous patting that I tend to add to my hugs. You have enough pain to deal with.

Can we perhaps have a virtual concert? We can pick something from your playlist and play it together. Would they throw you out of the entire hospital (and surrounding areas) if they know you are closely linked to utterly responsible for the rabble rousers on that darned bus double parked, and inching ever closer to you? Go on. Music is the food of love, and we all love you, just as you are. ALIVE. So come on our girl, buck up. We are all here to keep you going, especially when the going gets ever so much tougher.

Hey Seafour, I’ve been lurking (and admiring your fortitude) from a distance (Australia). I’m not at work today and it’s only 10.30am here, so happy to sit up with you for a bit.

I’m trying to do a photo book of a family trip to Bali and am getting increasingly pissed off with trying to convert nef files (proprietary Nikon format) to jpgs, grrr. Anyone know of a simple free software program that does this?

I’m about to have a cup of tea, this is my summer-y garden view.

I’m so sorry to hear about your bad day - a little bit of common sense would go a long way, wouldn’t it. Hope you get a good sleep tonight.

Hi Seafour, I haven’t commented before (I don’t really post much at all) but have been following your thread and thinking of you so much.

I’m so sorry today was so awful and I desperately hope you get some relief ASAP. I wish there was more I could offer than words.

You’re an absolute inspiration and even though I don’t know you I am so, so proud of you.

I’ll offer up a song for the Virtual Concert! My contribution is Hallelujah (the Jeff Buckley version) because it has lulled me to sleep on many a sleepless night.

Sending you all my good thoughts.

Thank you all for the posts, they are holding me together right now.

We had our work Christmas do yesterday - my Labrador attended (it is a vet hospital!) and looked super cute.

You poor thing. I've not read the whole thread. Are you still in HDU? I've twice gone from an induced coma on a ventilator in ICU, to HDU on to a ward then home, both times spending about a month each time between ICU and HDU so can empathise a bit with your frustrations. x

Her name’s Gracie by the way, and she is lying on her bed snoring gently behind me while I struggle with this photo book. Good thing she doesn’t care about swearing.

I do hope you’re sleeping now.