Those with a medical condition, what do you wish people understood about it?

a year ago by Lady Butterfly to c/ask

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RebekahWSD 20 points a year ago

Yep I sure do look normal! Would be nice if I had more energy than negative five. Oh? You have energy waking up so I'm lying about how sleep doesn't refresh? Thanks! Yeah my doctor knows and is baffled but my insurance only covers so many tests! Guess I'm just exhausted until I die! Oh I'm still doing stuff? I HAVE TO TO EXIST.

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Moonweedbaddegrasse 7 points a year ago

Oh I feel you. Until I was diagnosed with sleep apnoea and put on Cpap my life was a hellscape of brain fog and exhaustion.

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RebekahWSD 3 points a year ago

As far as we can tell, not enough sleep apnea to qualify for a machine (well, insurance won't)

So I get to clean a cpap every morning for my husband but not use one! Ah well.

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boldtransdev 3 points a year ago

This reminds me I should probably clean my cpap way more than I do...

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RebekahWSD 3 points a year ago

I clean it every morning because it's just easier to do. Hose is one a week, checking filters and everything once a month. I found unscented dish soap and a toothbrush to scrub it all with. Fuck distilled water though, but the hard water is why I scrub every day.

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boldtransdev 2 points a year ago

Noted on cleaning frequency, I need to get better about it, esp the mask itself. Why fuck distilled water if you dont mind me asking? I use distilled water from Krogers and its been totally fine.

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RebekahWSD 2 points a year ago

I pay for water from the city, and by the gods, I'll use it!

More seriously, the distilled water needs to be purchased, brought inside, used, only for a lot to be wasted (since the machine never gets to dry out, he doesn't sleep long enough) and since I am cleaning it every day, it doesn't build up enough to be an issue.

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