Lived Experience Forum

[PinkFlamingo]

Sounds like really great supports @PeppyPatti 

i haven’t experienced anything remotely like any of the supports you mention; yes, it’s a very different trajectory contrasted here for sure. 
Sounds like the services have been quite helpful also (I’ve never had any effective counselling so I wouldn’t know what that is like over time, despite trying to access for decades). 
Regarding emotions and compassion, no - I was my usual self, just angry I was being treated very badly within a multilayered broken system. 
it was just regular anger from being threatened and harmed for two decades by systemic failures. 

otherwise I developed a sense of compassion for myself first - why should these broken and harmful systems have any say in how I feel. 

It must be lovely to have these networks - very nice to hear you have such a large amount of support ☺️

Have a great day.

[Historylover]

Sending good wishes your way, too, @tonys. Hoping all is well with you. Just taking things day by day here. Enough to keep me busy but nothing to write home about. Take care.

[PeppyPatti]

Dearest @PinkFlamingo 

Thank you for the message.

Your message opened something up in me. I don't know. I know I'll get through this time. I think it's because iv got words to put to it which help me identify it. Though I wish I had your language......

But ...the words are that I'm not present in my sons lives. 

I went on numerous astrology websites not to learn but to get a birth sign statement I felt spoke to me and I found the write up of birth sign on astroseek.com was very me. 

The astrology wrote that I get my own support system and I realised this is correct - 

Since from early childhood I had support. I was working in art/craft stores at age 13 which gave me a huge look into the art world but was up to me whether I took advantage of it. 

 this is one of my pieces of artwork. It's quite big and I drew the ship - the basic design. - and put photo transfers on it. 

I also studied Psychotherapy for a while I think the poem went 

" I look up, 

The whole world opens up wide, 

I turn my head down 

  To the horizon 

And sunshine 

Time is upon us 

Ships swim on the water 

Night crosses the sky 

You know the motion of the moon and the stars

My beloved

[Lila3]

@pettypatti that poem & artwork is just stunning. Thanks for sharing.

[Jynx]

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@PinkFlamingo wrote:

@Jynx  I posted about sleep apnoea which may be helpful for others, but I can’t remember which thread it was in. It was for @TAB , in one of their threads. 
I used to work in the area of sleep disorder diagnostics and treatment so it may be helpful in understanding the mechanisms and treatment options…. Maybe it’s helpful

---

Was it in Tabaluga's, @PinkFlamingo? Our search function is... less than ideal when it comes to finding specific posts. You could go to your profile and look back through your history to see when you posted in that thread - if you remember the date it might be a little easier too. Also, ignore the time stamp on the post history on your profile, it doesn't list when you posted it lists the time for the most recent post on that thread... I know, it doesn't make sense 😅 But it is in chronological order so you might have to scroll back a few pages, just depends how much patience you have to go looking! 

Otherwise, feel free to make a whole new thread! I reckon a thread about sleep, sleep hygeine, and tips and stuff, would be really useful to a lot of people! 

[PinkFlamingo]

I’ll see if I can find it @Jynx ….

I have left a few posts detailing relevant info - quite a comprehensive bunch of info…in the as of now unknown thread (edit: see below)

And also one comes to mind in a chat on another thread with @SmilingGecko  regarding CPAP/MAS devices … that would also fall under that category. 

I’d be happy to collate the info into a dedicated sleep thread: I worked in the industry for some long years, and specialised in second tier (complex cases/complex ventilation/alternate evidenced therapies), as well as my back ground in occupational therapy (my undergrad), where sleep hygiene was critical amongst the discussions I had with my clients/specialists’ patients. 
feel free to let me know, otherwise I’ll try to find particular threads and link them (however I think pasting them into a dedicated sleep equipment/sleep hygiene thread may be more precise to access…maybe including the interaction of various medications and sleep breathing would also be great to include in that area? Many different meds - by their mechanism of action - impact on a variety of key sleep breathing attributes: brain, mechanical function, lung diffusion, etc.. I used to teach anatomy so I have some basic understanding of these interactions, and can source evidence based data to share if people are interested). 
🦩

mandibular advancement splint/mandibular advancement device (MAS/MAD)/CPAP/ventilation: 

MAS MAD  p8237 09/3/24 my posts discussing apnoea. 
🦩

masks and CPAP: CPAP and masks  p8225 07/3/24 my posts discussing masks and CPAP.

🦩

[PeppyPatti]

Creative wild intellect of @PinkFlamingo 

I just got caught up in your sleep knowledge 💤,,,,,, who would have known hey ?? 

Here I am struggling with a clinical book writing notes yes iv covered 15 pages in 2 months and @PinkFlamingo 

Just types out knowledged.....information. I have a few years to get there. I'm definately not jealous but very impressed. 

Because it's being used in such a compassionate way. 

 

[Jynx]

@PinkFlamingo oh wow, what valuable knowledge to have! Yeah I wish it was easier to rustle up old posts, but alas combing through your post history is probably the best approach, and can be tedious. I know well the other kind of tedium too - rewriting stuff you've already written and trying to remember it all! Lost too many uni essays to computer crashes and insufficient frequency of saving the document 🤣

So up to you if you want to create a new thread!! I think it's a great idea, the only caveat being that discussion of sleep medications probably wouldn't work, since it's against guidelines. Unless you think it's still useful to talk about them more generally (like we can talk about SSRI's, or antipsychotics, but just not name them specifically or talk about dosages, nor make specific recommendations) of course! 

I'm also more than happy to kick start the thread myself, and I can then tag you and anyone else that might be interested. Whaddaya reckon?

[PinkFlamingo]

Thank you kindly @PeppyPatti 🙂

Im not as quick or adept as I used to be pre brain injury, however I sometimes can access vast amounts of information that I gathered prior, which is like a little window into a large library. 
anyway, if you’d like a thread on sleep hygiene, apnoea, interactions, and devices, maybe we can see if anyone else is also interested..? 🙂

@Jynx @tyme @TAB  @Shaz51 @SmilingGecko  @tonys 

And anyone else who thinks it’s of value..

[PinkFlamingo]

Hey @Jynx 

if you think it’ll be handy, I think starting a thread about sleep hygiene, apnoea, equipment, interactions, and anything else sleep could be handy. 

please allow me to clarify: medication interactions are nothing to do with the specific meds used to induce sleep per se; it’s about any class of med that creates a barrier to healthy sleep (be it keep you awake or cause breathing problems, or some other issue), and not a named drug. That’s where I can come in with helpful evidence based supportive info. In this context, no names, doses, or other specified info is necessary in the parameters of the discussion type. 

feel free to start if you like, and I’ll kick off with informative posts when I receive a tag (starting with copying in my posts already discussed)

🦩