Lived Experience Forum

[PinkFlamingo]

Yes, sometimes it’s elusive isn’t it @Birdofparadise8 , as to why sometimes feeling not so good are more or less at different times 💜🫂🌺

I’m sorry I couldn’t get back to the forum earlier - I was hoping to, but the day got away from me with a few things that came up, then a GP visit, which always gives a bit of fatigue afterwards. Sorry it was much longer than I anticipated 🙂🌺

Other than that it was nice to be out and about in the car for a little while.. I had someone at the parking lot watching me slowly inhaling from a balloon (I’d put some oxygen in them for the drive), clearly thinking I’m doing something a bit shifty lol 🤭 which made me laugh! 
the other thing which was quite nice is where I usually park to pick up from the chemist, it was packed, so I asked a random person if they would walk in the chemist and pick up and drop to me while I waited in the car… I explained that I have issues with immunity and would they like to use my sanitiser, and they did. So I rang the chemist, and described the nice stranger - they gave my stuff, and the kind person dropped it off carefully. I sprayed everything like I always do (mask still on), and this actually really made my day… the kindness and random generosity of a stranger who didn’t mind helping out someone to get medication while unable to quickly run inside (they could see my crutches and walking frame in the car when they came over) was such a really nice thing. They just did it without hesitation 🙂🌺💜

I smiled all the way back home 🙂

I thought I’d share that with you ☺️🌺

[Birdofparadise8]

It's okay truly it's a thing I need to work on. 

Wow that is very nice they did that for you. 

I'm confused why did you need to blow up a ballon? @PinkFlamingo 

How do you normally get your meds if the carpark isn't full do the staff come out at give them to you?

[PinkFlamingo]

I understand @Birdofparadise8 🙂🌺💜 gently does it, and always remember there’s loads of care and support here for you 🙂🌺

Yes, it was so kind 😊

usually the staff run out, but they don’t like to run across the Carpark as it’s hard to see..I was stuck on the other side as the entire lot was double parked. 
ah - the balloon had oxygen in it from my oxygen concentrator here at home, which I ‘sip’ with small inhalations as needed, because I don’t have oxygen tanks to take mobile/out and about ☺️

it’s like a small top up, like having the little prongs under my nose at home, they give a flow that you can inhale more or less of, depending on how deep you breathe, or whether you breathe in through your nose or mouth instead. 
🙂🌺

[Birdofparadise8]

Yeah I know thank you @PinkFlamingo 

I know you do a lot. It means a lot to me. Like a team in my corner so to speak. 

Yeah that makes sense. 

Oh so whenever you go out you always have to take the ballon it must be pretty bit to last while you're out. What do you do if you run out can you last long without the ballon or do you just go straight back home. 

I know the prongs I had two in my nose for the study one clear one like what you use and then a black one that was a sensor. 

[PinkFlamingo]

Yep, a team in your corner @Birdofparadise8 🙌🏻☺️🌺

Yes a balloon to sip oxygen… it tends to last quite a while, because it’s pretty much 93-95% oxygen, but the flow rate I use is only just over 1L per minute most of the time at rest, so that means on top of the approximate atmospheric concentration (sea level) of oxygen being 20%, an additional 1 L per min increases the concentration to 24-25% concentration, because each litre per min of flow tends to increase the available concentration of oxygen by 4-5% (so, 2 litres per min wound be 28%, 3 L per min = 32%, etc). 
so, with having a balloon full of 93% oxygen (made by the concentrator), I can take a very small amount of oxygen from the balloon, while taking a big breath of atmospheric air, to approximate the concentration to approximately 24% which is the level I need at rest to boost blood oxygen levels to the lower level of normal range 🙂🌺

I’ve worked out just the right amount of oxygen to inhale while taking a full breath to get the right amount☺️

oh, yes - that sounds like a piezo thermoelement of some sort that you’ve had there under your nose maybe? They are a flow sensor: they give a wavy line with regards to in breath and out breath detected at the entry to the airways (nose and mouth) 🙂🌺

The interesting thing about those is they usually are correlated with the breathing effort and oxygen concentrations to help determine where any obstructions are situated, in the instance there’s observed sleep apnoea, from what I can remember, back in the day 🙂🌺💜

[Birdofparadise8]

Wow, that sounds very complicated @PinkFlamingo 

Yeah, they were assessed for sleep apnea because of how tired I am, even when sleeping 8-9 hours. 

[PinkFlamingo]

Yeah, it’s a little bit trial and error, but I finally got to that point @Birdofparadise8 🙂🌺

Ah, that makes sense 🙂

they should have some good results if the thermoelement stayed in place overnight (which they usually do). 
I hope the results give some answers for you sweetness 💜🌺🙂

[Birdofparadise8]

Yeah, everything did @PinkFlamingo 

I'm going to say goodnight now, but it was lovely chatting with you tonight. 

[PinkFlamingo]

Alright @Birdofparadise8 , I hope you get some good rest tonight, and your day goes well tomorrow sweetheart 🌺🙂

take good care and sleep well 🤗🌺

[ArraDreaming]

Hey @Birdofparadise8 how are you