The psychology of cpap

[carbonman]

As I continue my cpap journey, and my involvment in the forum,
it appears to me that although the mechanics of cpap are important,
the psychology of cpap maybe much more important.
If the psychology of cpap is not over come, the mechanics are meaningless.

The psychology of cpap involves personal introspection, which is difficult
in many cases and down right scary to some. CPAP requires one to
step outside their routines and comfort zones, and in some cases
to leave them behind, for good.

I think everyone that starts cpap suffers from a low frustration tolerance.
It may be wise to forcefully bring your LFT to the surface, and realize
that without consciously and deliberately enduring various kinds of discomfort,
you have little chance of changing your situation.
Blame the delaying of your therapy efforts but never blame yourself
for this delay. Blame the mask. Blame the noise of the machine.
I overcame my LFT through my desperation for some relief from the
chronic fatigue and pain I had lived w/for years.
It is pointed out here time and time again, that the discomfort of
the mask is, infact, small compared to the affects of OSA.

I just had a conversation w/a co-worker. He started cpap 2wks after I did.
He didn't know what machine/mask he has. He is not feeling any better and
is ready to quit. He was asking me about using a chinstrap.
He has one of the cheap pieces of crap that the DME gives you.
I offered to let him try my Papcap that I don't use anymore, but he said
it would be too hot. Not even going to try.
After talking w/him and looking at pics on cpap.com, we determined
he is using a Mirage Swift II Nasal Pillow ....BUT, NOT using the upper side connector.
He said it is always leaking. .ahhh....yes..... After he looked at the pic, he is going to "find" the
connector. I asked him if he was going to get a data capable machine and he said no.....it
would take too much time to talk to the doc and "all that stuff."
I asked him how much time his brain was worth. ......WOW......

As I recover from the ravages of years of OSA, my heart goes out
to those who post their stories here, and those who need this therapy,
just as badly as I do, but can not seem to come to terms w/it.

Thought/comments/suggestions

[Slinky]

Yup, either you CARE enough to educate yourself and put forth some effort to help yourself or .... your choice.

[birdshell]

I like what you said, and it is so true for many of us.

However, it is not true for all--there are some of us who took right to the therapy. Maybe it has to do with the desperation one feels to actually be clearer in thinking, more able to be active, to sleep less, and to protect one's physical health?

Still, isn't it frustrating to see another react as your coworker has? One has to wonder how much the sleep disordered breathing has affected such folks.

[SeaPappy]

Carbonman,

You really GET IT, don'tcha. You are a true inspiration for all here....keep on rollin'.

[jnk]

. . . using a Mirage Swift II Nasal Pillow ....BUT, NOT using the upper side connector. . . .

I don't run the mask hose up the side either with my Swift II. I'm mostly a side sleeper, so the less bulk to the side, the better, for me. I do find it important to hang the hose from the machine up behind the bed so that there is no tug on the nasal pillows, though. The mask comes with 3 sizes of pillows, so your coworker may need to try one of the other sizes.

As for the psychology question, I guess people are gonna do what they're gonna do, and not gonna do what they're not. It's easier to help people when they ask for it. But like many things, the first step to getting the help is often getting to a point of acknowledging the need for help.

I think it is similar to the problem some have with trying the therapy at all. Some people just don't get it that they are drowning every night in their sleep. If they don't truly understand that they are drowning, then they see no need to reach for the line even when it's being thrown right at them. Others are so mentally and emotionally traumatized by the diagnosis that they get overwhelmed into a kind of shock and don't seem to have what it takes to reach for the line. Some may be just plain lazy. But I try to assume it is shock, grief, and denial that is paralyzing them unless I see evidence to the contrary. Hopefully a friend, family member, or coworker can pull them up onto the beach of reality one day. But you can't save someone who doesn't want saving. If they aren't our children, we can't stop by every night to put their masks on for them.

I have a few close friends who were diagnosed, tried the machine, and then gave up. All I know to do is to set the example as best I can and to speak about it when they bring it up. It's hard for me to figure out what else to do. All I really know is that I don't look forward to attending their funerals one day.

[lookin4sleep]

Carbonman, this could be a really important thread. I know we all say "stick with it or die" more or less (right slinky?) but the whole concept of what psychological barriers there commonly are and how they can be overcome, is a vital one. Your story of your coworker is significant. If he/she really truly thought their life was at stake, they would not just blow off your advice. In fact, they would be standing at the door of the DME pounding on it, demanding service, correct fitting, better monitoring tools, and probably supplemental oxygen! Well, maybe not that particular person, but many more of the "unawakened" cpap users would be with us, and we wouldn't be lab-ratting the masks or home-knitting our rainout covers. The radicalization of our fellow cpapers, not just those who _like_ the tinkering or who have had a health scare that pushes them into taking some responsibility for their treatment, would change the landscape of sleep disorders. We need to identify psychological barriers, and we need data-supported methods to deal with them. After all, it's not really the machine that helps us, it is OURSELVES. I think we need a movement, or a march, or something very 60's (as in 1960's, not birthday 60's, all you snickering folks out there ) for this. Buddies and help are great, but there is nothing like a large voting block (voting politically and with dollars) to foster change. Cpapers UNITE, you have nothing to lose but your stockings tied to your mask!!! (with apologies to Rested Gal, and it has saved me many nights.)

So that's my rant, and I stand ready to follow whoever can lead this ragtag band of... wait, that's another movie. I know I joke about this, but people, really, we need to graduate from tinkering to a real, customer oriented service-guided landscape. In the bigger picture, we need health care reform, but for ourselves, we CAN make a stand. If we got 50% of the dropouts to hook up with us, we would be POWERFUL. How about outreach, each one teach one (of the dropouts), there has to be a way, or lots of ways.

Let me know who's picking up the banner.
Chris

[billbolton]

I think everyone that starts cpap suffers from a low frustration tolerance.

I can't speak for anyone else, but I certainly didn't.

From my observation, there are others here who certainly appear to have had similar experiences to mine!

Cheers,

Bill

[zaquon]

I think the biggest obstacle with CPAP is that if you don't take to it like fish to water, then in makes the bad sleep you're already getting even worse. It took me less than 2 weeks weeks until it completely broke my spirit. I had planned to be one of the ones who took right to it, but that didn't happen.

I realized it was going to be a lot harder than I thought and so I had to change my strategy. My definition of success changed. I started celebrating the little victories.

Also, having the tools like a data capable machine and software to monitor my therapy was important for my piece of mind. That way I could celebrate my 1st <5 AHI night, or the 1st night I only had 1 apnea.

Everyone has a different disposition, and different strengths. Me, I'm very analytical. Once I started playing to that strength, I felt better. Even if my monitoring and tinkering didn't really help and it was just time I needed, it doesn't matter. To me I felt like I was outsmarting the machine. Each night I could come up with different tactic based on where I thought I might be leaking, or what medication/supplement was making things worse or better.

Psychology definitely plays a role.

_z

[dsm]

Carbonman,

A thinker - your insights suggest to me that your machine is working well

Very thoughtful. I was lucky enough to go on xPAP at a time that the Respironics distributor in Australia was conducting a survey on compliance (Mayo Heathcare Australia - Respironics Agent).

They chose approx 100 people to participate - 50 were given xPAP education & seminars where they asked spouses to attend. 50 were left to follow their own path in obtaining their machine & complying.

The subsequent report published in 2007 (IIRC) showed that the educated group had a significantly higher rate of compliance after the 1st 12 months.

Speaking for myself - there were approx 2 times in the past 3 years where I was sure I could end the therapy as I thought no longer needed it. I became convinced that reducing my weight to 85 KG from 105KG meant I no longer needed the machine. After a week I was sure I was doing OK but decided it would be prudent to check with my SpO2 recorder just what my SpO2 % was - I had many prior charts to compare with. I got a big surprise - regular desats. Went straight back on xPAP. That happened once more with the same result. Now I regard the machine as my life extender & don't even like the idea of one night without using one.

#(added)
The psychology aspect of my attitude was I believe, that I didn't like having to use one of these machines & was not yet comfortable with it & was looking for any opportunity to reject it. The fact that I tried twice sort of confirms such a subliminal attitude. Once I really realized I needed the breathing assistance forever and that it really was going to extend my working career & general health, I changed. Now I regard it as my special advantage, one that so many people have yet to learn they need. One of the senior managers at work called me to his office a few weeks back to say he had been diagnosed with OSA. He knew about my situation & he said that has made it easier for him to understand the challenges. When he asks for help I'll offer him what advice I can but will try to restrict it to just the topic he has broached. I believe newcomers can really only absorb small doses of advice at any one time. I really takes a lot of time mixed with experience to begin to comprehend the many aspects of good therapy.
(end addition)

One further big move forward for me was getting my hands on the current machine I use approx 8 months ago. I regard it as a Rolls Royce of xPAP therapy in that the quality of sleep it delivers is the best I can recall in 3 years of using many different models & types of machines. Sleep seemed ok before but with this machine sleep has become a very enjoyable part of my 24 hour cycle. It is so unbelievably forgiving - seems able to cope with massive leaks whilst continuing to deliver high quality therapy - it is very tolerant of my state (what I ate or drank that day) - my wife says that with this machine she sleeps better - she no longer feels any need to monitor me - also it is very quiet. If anything it is now her that needs to think about a sleep study.

There is a challenge when one finds what seems to be therapy nirvana & that is trying to avoid becoming a preacher & that can difficult. There are times when I think that each person just has to work things out for themselves. I used to offer what I thought were well thought out wisdoms in regard to types of machines and settings but there is too much 'clutter' that flows in some of those discussions & after a while it becomes easier to let many folk just work their way through it in their own way & just offer what encouragement one can. xPAP by example doesn't seem a very communicable concept. I do believe that most folk who come here do learn a lot & probably progress well.

The most rewarding opportunities here are being able to help those who have a sophisticated machine that one is familiar with & can see the user has not got it set up well & being able to steer them quickly to a big improvement in satisfaction and recorded results. All the old timers will know what I am meaning.

cpaptalk is a wonderful facilitator for improved therapy based on individual's own efforts and determination and the general wisdom that is on tap.

DSM

[Leonbergergirl]

What you-all so eloquently said.

I was diagnosed about 20 years ago, tried cpap, finally gave up. Not too long ago
a fellow teacher (on cpap with oxygen) died. She was a wonderful teacher and
human being. What a loss.

Since then my husband and i are both compliant, even if i do have two pairs of
tights wrapped around my face and blue painter's tape slapped over the mouth.
(We're prolly too old to play crazed weasel games anymore, anyway.) Hurray for
all of us who are trying.
Leonbergergirl