Lived Experience Forum

[Birdofparadise8]

Ah, okay, I hope you are alright. 

Will you go to sleep? 

Is it hard to sleep with it in your mouth?

@PinkFlamingo 

[Birdofparadise8]

Hey @ENKELI 

I hope you have a good night and a great week at work. 

I chat with you next time you're around. 

Your Princess 👸🏼 👑 

[PinkFlamingo]

Hey there @Birdofparadise8 🙂🌺

I hope the chat went well last night, and you got some sleep ☺️

I’m ok thank you 🤗 just fatigued sometimes and breathing becomes difficult to do so I need a bit of mechanical support to make it happen 🙂

I did eventually sleep - I’d not had much sleep the week before so I think an earlier sleep was a good thing. 
It’s a bit to get used to, having a bunch of equipment on your face and straps around your head, and tubes and leads (pump pressure tube, oxygen tube, and oxygen monitor on fingertip) everywhere 😉

im used to it these days sweets 👌🏻🙂

No more heart monitor leads since the heart monitor implant was put in my chest a few weeks ago - that makes life easier…I’m officially wireless and sending Bluetooth signals to an app instead 🙌🏻😊

How’s your day looking today? I hope it goes well 🌺🙂

[PinkFlamingo]

Hey there @ENKELI 🌺🙂

sorry about the delay in reply - sometimes fatigue eats what is left of my time in the day… it’s like my energy just flubbers out like air from a whoopy cushion! 🤭☺️🌺

How was your weekend? I hope you got the time to catch up and recharge? That’s very understandable regarding your dads family - there’s only so much any person can do in situations, and if it’s not working, as hard as it might be, sometimes it’s healthier to take a breath and a little step away for a minute or two 🌺🙂💜

I only cleaned and cooked on the weekend, and I caught up on some reading and research prep I needed to do for a study being submitted for funding - it’s a really good cause and these scientists are working diligently to include lived experience, so being their LE person on the team, I gave it my all to contribute the lay persons perspective 🙂💜

I hope your week is going well so far, and I hope you have a nice evening ☺️🤗🌺🦩

[Birdofparadise8]

Hi @PinkFlamingo 

The chat was good fun. 

Ah, okay, I'm sorry. 

I have been busy studying for my exam on Friday. I went to the shops and got a new baking tray and peeler. 

Hi @ENKELI @Blackbird11 @ArraDreaming 

How is everyone tonight?

[PinkFlamingo]

Hey there @Birdofparadise8 🌺 🙂 

Glad to hear the chat was good fun - I hope to make it to one one day! I just have to plan.... 🙂 

Its ok sweetheart, I know its a bit weird for someone to live with lots of things like that, but I'll always try to do my best alongside all that, and get my backside to the forums when I can xx 🙂

I always love chatting with you, and hearing about your days!

I hope the study for Friday exam is going well and on track xx

The new tray and peeler .. these things are soo handy aren't they? I have a special peeler that makes it easier to peel anything, which I would be kinda lost without it 😉

I hope your evening is going ok there xx

[Birdofparadise8]

That's okay. If you can make it, then that would be great. @PinkFlamingo 

Aww, thank you. I really needed to hear that tonight. 

Yeah, I should go okay.

Yes, my other ones weren't good, but Myer had 30% off, so that was good. 

It's alright, I guess, I'm not feeling great, the sadness and loneliness like to wash over me. 

I'm watching an episode of Grey and Anatomy, so that is good, at least. 

[PinkFlamingo]

Yep, I'll keep aiming, and one day it'll happen xx @Birdofparadise8  🙂 xx

Of course sweetness, you are such a lovely person, with such a good kind heart that it totally makes my day to see your notifications in my inbox 🙂 xx

Thats good re the upcoming exam - I know you work hard and diligently 🙂 

Sounds like good bargains to be had at Myer today!

Im sorry to hear the sadness and loneliness are there, but please know even though we cant pile in the room with you, we are with you here online, when we can be 🙂 

I hope watching a bit of tv is helping distract from those feelings, and you can relax a bit nicely for the evening xx

[Blackbird11]

Hi @Birdofparadise8 

Well done on your study, it's hard some days.

I'm doing ok, on the couch watching master chef. 

[Birdofparadise8]

You mean the world to me @PinkFlamingo 

Thank you. Yes, a good sale. 

Yes, it's not very fun. Eh, it's over now, so I will think of something to do while I'm on here.

Will you be around for a bit?