Lived Experience Forum

[PinkFlamingo]

Hey there @Snowie 🌺

thanks so much for asking, it’s super kind of you. Sorry for delay…I haven’t been keeping up very well at all. 
ptsd and anxiety have come crashing in the front door like the bloody unwelcome f*cks they are due to some additional stressors directly impacting on survival…the replacement ventilators (third lot) are faulty, and intermittently failing overnight so I am having periods while asleep where I’m not breathing at all (I don’t notice because I have brain damage to the area that controls breathing, oxygen/carbon dioxide monitoring, and depth of sleep), and I’m waking up feeling unwell and with low oxygen levels. The response from the company was “speak to your doc”…really? How is that going to keep me alive ..how about you give me my tens of thousands of dollars back and I go buy a ventilator that will not contribute to deoxygenating brain injury overnight? 
sorry… it’s not that easy sometimes taking on corporate giants without any legal, social, or other support…at times I feel like an ant under the foot of an elephant, holding it up so I don’t get crushed. 
anyway, amongst the other crud going on, there’s the straw that breaks the camels back, so to speak. 
Not to worry. I’m trying my hardest, that’s all I can do. 
Not a very good peer guide right now… hehe 

I hope you’re doing ok 🌺💜

[PeppyPatti]

Wow @StanD 

What a lovely message. I'm getting that book. 

Iv put it on the cart of my Amazon list. I have a list which when I can budget I purchase and the book is only $8.50. 

Last week, I purchased something on my list - the top was Paul Newman popping corn.....  Okay ..  I'm getting there. ........for things I really need......maybe this purchase was a treat. 

[StuF]

Hey @StanD  🙂

So great that the medication works!!! Sucks you have to wait...hope it goes alright.

Things are good enough here thanks. In fact, I think I have lined up some volunteer work so I'm a bit excited about that!

[PinkFlamingo]

I hope it was helpful in some way @Adge 🙂🌺

take it slowly, pace yourself, and practice practice practice 🙂

when I was learning to drive a crash (gear)box truck, each gear change included a double shuffle (clutch pedal in+stick to neutral, clutch pedal out+rev engine while in neutral, clutch pedal in+put into next up/down gear), which ended up in the gears getting a little bit of ‘cleaning’ (aka scraping due to my lack of coordination). So I sat for a while without the engine running practicing my changes. 
I did the same on the bike when practicing rev match clutching for track days (clutch lever in+rev engine+down gear change) to prevent rear wheel loss of traction when changing down more then two gears quickly at a time coming off a straight and heading into a corner. Takes practice, till it all becomes second nature. The more you sit and run through the movements, the easier it gets when you’re riding. And there’s more brain space available to deal with all the variables like traffic and road/weather conditions 🙂

Will be so nice to get back out there 🌺

[MDT]

I regularly discover faults or failings in me that i didnt know were there. Often the only reason I discoever them is because someone has pointed them out to me. As disheartening as that may be as much as it feels like a step backwards, it's actually an opportunity. It's an opportunity to learn a lesson, solve a problem, and take two steps forward. Or you could ignore the opportunity and always be one step behind. To find happens, don't walk away from problems, because they are opportunity in disguise
Simon Kennedy, 9/11 and the art of happiness

Very good book

[MDT]

Hi @BlueBay
Nice to hear from you

(Hams here, got a new name)

[creative_writer]

@StanD I think I need to do lots of work on my cptsd. I’ve never seen it before, might have a look, hopefully I remember to.

@PinkFlamingo sorry to hear you’re not doing so good. I wish you the best 💖🫂. Feeling restless rn, morning matcha calmed it but I think im due a lunch break and another cuppa. So hard to concentrate for long periods of time on uni

[PeppyPatti]

@MDT 

@creative_writer 

@PinkFlamingo 

@StuF @saturnzoon 

@Shaz51 @TAB 

@Glisten @Appleblossom 

@lavenderhaze 

https://youtu.be/tb1-C5j_OUg?si=kBdILKkXIWz-7vrn

A very nice podcast I'm listening to ...

@tonys 

@Faith_Hope_Love  @Pem  , @Appleblossom , @Adge @Healandlove , @Krishna @ , @Healandlove , @BlueWren @Bluewren57  @Trishcarer  @TGKC  @Blu@MedicinalGypsy @  @Friendlyflutter  @@Duckie  , @Lucia2024 @Big_red @ @Equestria101 @ , @Mother1  , @greenpea @ , @MermaidHair  @tyme  , @Jynx @Lilmamma  ,@Blat @LilMapleLeaf 

It's long. 

[lavenderhaze]

Hi @PinkFlamingo,

That must be so scary for you. I am so sorry to hear that.

I can't believe the company can't help you with this - that's unacceptable.

You're always a wonderful peer guide, I hope you know that ❤️ 

[Snowie]

I'm sorry things haven't been going well for you lately @PinkFlamingo 

I certainly can understand the need for a good and reliable ventilator. My Dad used to be on one when he was alive.

I think you are a great peer guide. Being able to relate to people and have a lived experience makes it so much easier to talk to you.

I hope today goes well for you.