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Is there a good article somewhere to help others understand what we go through?
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TheManseHen Offline

Preferred Members-2

Posts: 243
Joined: Jan 2015

Machine: RedMed A10 Airsense 10 Autoset
Mask Type: Nasal pillows
Mask Make & Model: Resmed Airfit P10
Humidifier: One that came with machine
CPAP Pressure: 7.6-14.0 EPR 3
CPAP Software: ResScan SleepyHead

Other Comments: Started C-pap Boxing Day 2014. Tortured sleep more or less since 2000. Trigeminal Neuralgia.

Sex: Female
Location: San Francisco

Post: #1
Is there a good article somewhere to help others understand what we go through?
Hi Fellow and Non-Fellow (ba dump bump) , Pap-ers,

I am new to this, just short of two months in. I get the sense that there are many who hear that one has apnea, or know that one misses things due to fatigue/bad night/ etc who probably think that apnea is no big deal, or that it is just someone's excuse for whining, or that we may be lazy or have low pain tolerances or what have you.

I'm not saying this is a common thought, but in my circle (some idiots) I have found very little knowledge or understanding of apnea, much assuming etc.

I try to put in a good word for c-pap, and how do-able it is and how I love my machine because I think they suffer from PR problems.

Has anyone found a really good article, blog, that one could print out and share with those who think this is mickey mouse and one should just buck up and pull through?

Has anyone else encountered ignorance or a sense that we aren't really suffering?
NO I am not wanting others to be sympathetic, I'd prefer not to be seen as that sick woman, but I do want others to stop their judging.

Thoughts? I'd love some kind of handout (-:

The Manse Hen
02-22-2015 04:30 PM
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AshSF Offline

Advisory Members

Posts: 356
Joined: Oct 2014

Machine: PRS1 D560TS
Mask Type: Nasal pillows
Mask Make & Model: ResMed P10, Bkup: Airfit F10 & Quattro Air
Humidifier: PRS1 60 series with Heated Tube
CPAP Pressure: 8 - 8 w/ Aflex 3
CPAP Software: SleepyHead

Other Comments: Using APAP mode with fixed pressure

Sex: Male
Location:

Post: #2
RE: Is there a good article somewhere to help others understand what we go through?
Google "sleep apnea infographic" and look for image results. I am sure you can use some of the images to show around in your "circles". :-)

Started APAP 4-20, Closed range to 7.5-14, then straight 8.0 w/ Aflex 3
RDI always below 1. But sleep much much better at straight pressure.
Started on F10, Tried Quattro Air successfully. Finally settled on P10.
02-22-2015 05:05 PM
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TyroneShoes Offline

Preferred Members-2

Posts: 505
Joined: Oct 2014

Machine: Resmed S9 Autoset
Mask Type: Nasal pillows
Mask Make & Model: AirFit P10
Humidifier: Resmed H5i
CPAP Pressure: 10-14
CPAP Software: SleepyHead

Other Comments:

Sex: Undisclosed
Location:

Post: #3
RE: Is there a good article somewhere to help others understand what we go through?
Jeez, I think you may have crystallized the feelings of many folks here.

But recovering alcoholics are alcoholics typically for a long time before they see the light, and what I mean by that (which is not to compare us to alcoholics) is that the human condition is to be misinformed until we are eventually informed. We skim the pages (and the posts; many are skimming this one right now); we make a lot of uneducated guesses about everything we don't understand rather than taking the time to learn. It takes a long time for stuff to sink in, which is usually our own fault. Some of the people who professionally write articles about depression (another group that sometimes contains idiots) don't even understand what the definition of clinical depression even is, because they haven't done the due diligence to find out. Stockholm syndrome exists for all of us, and not just for publishing heiresses kidnapped by the SLA, meaning we all accept what we see around us as the status quo, even if it is not the truth and there might be a better truth we just haven't been exposed to quite yet. People act like idiots, not because they aren't intelligent, but because they are fundamentally lazy. Waking up and smelling the propane is not exactly our strong suit.

Enlightenment isn't easy; it takes hard work and dedication. And, generally speaking, people are lazy, so it also takes motivation. And I think this is exactly why I waited decades before instantly being 100% on board with xPAP therapy, and I think it also explains why among 11 million sleep apnea sufferers in the USA, a full 10 million of them are not being treated by a therapy that has few if any side effects and is virtually 100% effective.

So there are some articles and things; if you use the wiki on this and on other forums, or simply google, you can find a cornucopia of info. SleepyHead contains a lot of good links. But I think it still takes motivation. People don't want to be bothered by something that will take them away from their Twitter or Instagram or those last few episodes of "Here Comes Honey Boo Boo" sitting on their DVRs, because there is no motivation to take the intuitive leap when you can't see the reward, which is ironic, because taking the leap often reveals the reward.

But who has time for that, who isn't already motivated?

As far as being an evangelist for xPAP, I only do two things. I tell people "if you snore at all or a loved one snores at all, you/they should get a sleep test". Not than many listen to that advice. I probably ignored it for far too long. But I also tell them "it can mean the difference between making it to 70 and making it to 90". For me, that was all the motivation I needed. How many millions of dollars would it be worth to someone to extend their lives by a couple of decades? What if it didn't cost nearly that much, and what if your garden-variety Obamacare might even pay for it? It's a classic no-brainer.
(This post was last modified: 02-22-2015 06:15 PM by TyroneShoes.)
02-22-2015 05:58 PM
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TheManseHen Offline

Preferred Members-2

Posts: 243
Joined: Jan 2015

Machine: RedMed A10 Airsense 10 Autoset
Mask Type: Nasal pillows
Mask Make & Model: Resmed Airfit P10
Humidifier: One that came with machine
CPAP Pressure: 7.6-14.0 EPR 3
CPAP Software: ResScan SleepyHead

Other Comments: Started C-pap Boxing Day 2014. Tortured sleep more or less since 2000. Trigeminal Neuralgia.

Sex: Female
Location: San Francisco

Post: #4
RE: Is there a good article somewhere to help others understand what we go through?
Thanks Y'all,
Very helpful and thoughtful responses. You are of course right,TyroneShoes, one cannot make others learn.

Not sure which infographic, if any particular one was in mind, from AshSF but it was interesting to look at them all. Never thought of using that as a search word. Thanks.

The Manse Hen
02-23-2015 04:26 AM
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