Support for Cacoethes (Beckie)

[Elmer]

Do you have things to distract yourself with during and after the times the NG feed is running? Maybe something to watch on your phone?

It's gonna be OK <3

[Cacoethes]

Thanks tamo

Thankfully it's a bolus feed. So not on a pump. I'm not sure what the difference is between the 2, apart from the obvious.
It seemed like so much. And took so long. Pretty much had a panic attack and i hate it and want to go home.
I'm watching doctor who as a distraction. And messaging people.

Thank you <3
It doesn't feel like it atm, but i trust you

[Elmer]

Oh I see! I don't know much about tubes and stuff I just assumed it ran like a drip, but the bolus thing makes sense I guess cos it's more like a meal?

Have they written you up for PRN or anything today? Sounds like you could really use it right about now (and also several hours ago). I'm glad you have Dr Who to distract you.

[Cacoethes]

They do have ones that run as drips too.
Idk why they choose which one.
I guess they're giving me a chance to have an actual meal at the set times rather than a feed?

I'm not actually sure whether i have prn or not
But really, i have to learn to deal with it. I can't take prn every time i have to have a feed. Because i think i have to have a fair few throughout the day. Need to get over myself.

[Zurg]

Oh Beckie <3
I Think trying to manage without prn would be okay but please don't feel like you have to toughen up. Something is basically being done to you without your consent and no matter the neccessity of this, you are allowed to feel it like a violation.
Please don't feel bad about the crying and breakdowns. It is totally okay!! I really hope it'll help you to feel better soon so you can come off the tube feeding and start feeling like you're more than a serious illness, as i'm sure it feels a bit like right now.

I wish i knew of something to say to make it a bit more bearable. I hope they are at least being as nice as they can while they are keeping you.
Findus is sending a nose boop and a tiny poop instead of a card <3

[Cacoethes]

Thank you zurg <3
And findus!

Yeah you're right.
I will still try to go without, but will ask if i feel i need it.

I asked about the number of feeds, and it's not as bad as i thought it was going to be. Which is a relief. Still a lot, but not AS bad.
But i will try to give food a go tomorrow. Because this tube is awful. And the syringes are massive and it seems like A LOT. It's not, but it just looks like it.

[Auror.]

re bolus/pump

bolus is essentially quicker and just given gravity - so takes shorter time and means not having to be continually connected
pump makes it take longer and usually means continuous connection

cannot comment re why choosing one over other as not your medical humans but if having it done bolus feels like too much at once you could ask for pump to space it out or vice versa

could also be using different types of feeds/amounts/etc for each so basing it on that too

[Cacoethes]

Thank you for explaining Camden

I'm not too fussed.
It's gonna be the same amount whatever the method, i guess. Maybe.
Possibly best to get it over with, rather than have the chance to try and disconnect it or something stupid. It would probably feel like more. Even if it wasn't.

[Elmer]

I agree with Zurg - you're being so harsh on yourself, when what you need is kindness. You're allowed to do things that make all this a little easier.

[Cacoethes]

Thank you Lio
I think i can be hard on myself. I'd never think or say these things to anyone else

[long road]

I think a lot of with a mental illness at elike that Beckie a lot harder on ourselves than we would ever dream of being on someone else.

[Cacoethes]

Very true Jen

[Zurg]

How do you feel today, Beckie??
Did you get any sleep??

[Cacoethes]

I had a really good sleep thanks!
Remember being woken up for sugars and vitals, but i was only half awake so dropped right back off again.
I actually slept through breakfast! They had to try really hard to wake me up for meds

I'm not sure how I'm feeling tbh.
Physically i feel bloated and eugh.
I'm worried I'm going to go home 2x the size i am now (not saying any bigger is bad, but y'know, ED shiz)
Having the feeds has turned out to be distressing, but actually easier in some ways.
Every meal time i think 'I'm going to try something'. But when it comes to it, i chicken out and say no. Ffs.

[one_step_closer]

Keep going, Beckie. This is a lot to process and your brain isn't being too helpful but I know you can get through this. <3

[Cacoethes]

Thank you lindsay

Just seen PLS.
Apparently it is looking doubtful that i could be out as soon as next week.
She said to cancel stuff.
She doesn't know for sure though
It's still sad.

[Cacoethes]

So apparently i have to follow the meal plan AND have the feeds.
They're gonna see how i get on over the weekend then reduce it, depending on how i do
I asked before i ate, she said she'd come back and talk to me after I'd tried the sandwich. I assume the dietician said not to mention it until I'd eaten.
I'm rather upset. But I'll deal with it.

[one_step_closer]

It does sound overwhelming and upsetting and I can see how you feel like it's a huge task. How did you manage with the sandwich?

[Cacoethes]

And that's over the weekend as well. So that's probably why it's a couple of days. Dieticians don't do weekends apparently. So i can't even see them after a day and try to convince them to reduce the feeds.
Ugh.
I did actually do ok. Not 100%. But even the grumpy kitchen lady who literally never smiles or says anything said well done to me when she collected all the plates! Still didn't smile, but the well done was sincere.

[long road]

Aww means a lot coming from grumpy kitchen lady. I have encountered many a grumpy housekeeping staff member in my time.

Well done from me re sandwich as well.