Dealing with your peers

[quietmorning]

I have found in dealing w/"peers" that those that
want help will seek it out and those that are still
on the barge floating down denial, will not.
In the passion of finding relief from the pain and fatigue,
we all want to reach out. It's only natural for caring people.

In my passion to help, I started going to AWAKE meetings at
the hospital where I had my sleep study done. I went in educated
and loaded for bear. They were a total sham. It was painful for
me to look at the faces of these sleep deprived zombies, there
desperate for help, being fed the Company/DME line of BS.
At the end of the meeting, I wrote down cpaptalk.com on slips of
paper and passed them out as people were leaving.
One guy actually identified himself as having been at the meeting.
I think he made 4 posts. The AWAKE group was cancelled a few
months later. I'm guessing the patients, like me, are cut loose
to the DME's, just like I was. Very sad.

I have learned about people at my work that are cpapers.
Out of over a dozen, 2 will engage me concerning cpap.
None of them are regular users.

One morning I was sitting w/a customer and recognized the
mask marks still on his face. I asked. Yes he used it....
end of conversation. Whenever I work w/him I can see the fatigue.

There was a guy that started posting here that was opening
a private sleep lab. I actually went down and met him.
He gave me a tour of his new operation. It was very nice.
We talked about me starting a user help group in conjunction
w/the sleep lab. It never opened. I never heard from him again.

Good on you for wanting to help.
All the best.

Thank you, Carbonman - I'm thinking that this really needs to be something that if it goes toward the clinics at all, it has to be in a way that serves to educate the clinics, not vise versa.

Otherwise. . . lol. . . CPAP ANONYMOUS.

[quietmorning]

People I deal with day to day have no assumptions about apnea cuz they have no reason to have any. I suppose if they did, it would be because they too had OSA.

What is the purpose of your proposed workshops?

The vision is to begin to compile and write/make resources and tools for others and myself to take into our communities to raise awareness, educate and support. And it's a you gotta start somewhere, so why not where here.

[quietmorning]

See my post "what my boss said". I have a colleague at work who was diagnosed right after me I've been mentoring her through as I work through the challenges first.

Will do (probably tomorrow morning)! Thanks!

[quietmorning]

Why not write a book????

Because people have to buy books, and books are not face to face reach out and touch I care about YOU and what YOU'RE going through.

[John from Brookston]

What do my peers think?

A good number of them were "Welcome to the family, I've been on the hose for 2 years"...
Some of them think it's just an excuse for me to fall asleep face-down in my keyboard. (Yeah, like that's enjoyable)
My GF thinks anything that keeps me from falling asleep behind the wheel when we're driving is A-OK.

[LSAT]

Why not write a book????

Because people have to buy books, and books are not face to face reach out and touch I care about YOU and what YOU'RE going through.

So your workshop is face to face!

[quietmorning]

Why not write a book????

Because people have to buy books, and books are not face to face reach out and touch I care about YOU and what YOU'RE going through.

So your workshop is face to face!

That's the hope.

[mgaggie]

I have found most people have heard of sleep apnea, but they don't realise how it can/does impact on life in general. For example in the state I live in, you could have your license revoked if you can't treat/manage your OSA. My friends and co-workers didn't realise that I might be banned from driving. They just thought it was nothing worse than snoring

[kaiasgram]

At the end of the meeting, I wrote down cpaptalk.com on slips of
paper and passed them out as people were leaving.

You rebel, you! I love it.

[quietmorning]

At the end of the meeting, I wrote down cpaptalk.com on slips of
paper and passed them out as people were leaving.

You rebel, you! I love it.

+1

[porete]

I haven't found very many people who actually use CPAP in my area. In fact, most of my physicians, excluding my sleep doctor/Pulmonologist, are pretty ignorant about cpap, OSA, etc. Regarding ignorant/useless DMEs, I met a elderly lady in my primary care physician's office who brought up the fact that she has used CPAP for the last two years and that it was driving her crazy. Her mask leaks badly, thus disturbing her sleep even more. She said "I told him (the DME) that he's got to send me a new mask or I'm going to have to quit this thing." It was so sad that the DME apparently didn't care to help her find a proper mask, and she had no support system to go to for help. He didn't even offer to have her come to the office so they could try to personalize the mask to her face (it's a local DME). I so wanted to tell her all about the forum and different masks she could try, but I knew it would be of no use because she was quite elderly, probably doesn't use a computer, and has no one to advocate for her to the DME. Maybe if there were workshops like you suggest, individuals like this lady could come and get personalized help and education face to face.

[DreamStalker]

People I deal with day to day have no assumptions about apnea cuz they have no reason to have any. I suppose if they did, it would be because they too had OSA.

What is the purpose of your proposed workshops?

The vision is to begin to compile and write/make resources and tools for others and myself to take into our communities to raise awareness, educate and support. And it's a you gotta start somewhere, so why not where here.

Well I feel as though I can profile (I know it's not considered politically correct but we all do it intuitively) people who have OSA just by looking at how fat they are and/or the shape/size of their chin. At first I tried to make others aware but found it to be futile. So now if a conversation re: symptoms comes up, I'll let them know about my own OSA/CPAP experience and if they want to know more I'm happy to help them in any way I can.

It's like trying to wake people up about the collapse of civilization that we are going through right now but people do not want to know or cannot believe it because it is occurring so slowly and imperceptible .... oh well, all we can do is prepare and take care of ourselves.

[quietmorning]

I think I've dealt with both support and the lack of support from people. . .and often the SAME people - as there seems to be a threshold of what someone wants to deal with. (Everyone has a bad day, I'm sure.)

But the thing that surprised me somewhat was the statement that a person understood my lack of participation (as opposed to my full previous participation) because sleep apnea "effects the quality of life". What I got from this (and I may be completely off base, but I didn't have a chance to ask and clarify as this was said in passing.) was that my lack of participation was due to how I felt - a feeling that could be overcome by some effort if I really wanted to - that this is not something that truly effects my health or something that can endanger myself and others if I choose not to listen to the fatigue and ignore this symptom.

I have been thinking about this process and how it would best work within a support group setting and in public awareness. I think the best way to do the 'workshop' part is not so much to hold workshops, but to design (write) workshop activities that can be chosen to use one or two in a support group setting. An activity can take five to fifteen minutes and can be the introduction of the meeting's topic. Then the meeting can follow a support group format from the end of the activity to the end of the meeting. This will be a lot easier for people who do not have 'trainer' experience to jump in and accomplish.

If you all will continue to post what you've experienced from your support or lack of support peers, I will compile them and will write activities both for the newbie cpaper and for the cpaper's support. If these can be compiled within a notebook, then the activites can be changed by choice and by the person facilitating the meeting that night. Meeting leads can change according to the group dynamic so that there isn't a power unbalance within the group.

I will post the activities here and you can either copy them from here or you can email me and I can send you the word docs via email if you are interested in starting something in your city.

I am leaving the medical profession out of this for the time being until educating the medical profession itself can be addressed.

Oh, one more thing - I am open to ANY suggestions - so feel free either before or after I post an activity to make suggestions of what you might want to change or take away or add to. The activities can only become better with more than my braincells.

[quietmorning]

What do my peers think?

A good number of them were "Welcome to the family, I've been on the hose for 2 years"...
Some of them think it's just an excuse for me to fall asleep face-down in my keyboard. (Yeah, like that's enjoyable)
My GF thinks anything that keeps me from falling asleep behind the wheel when we're driving is A-OK.

LOL. . .I can see it now. . .10 keyboards in the 'supporter's group - telling them to place their foreheads on the keyboard - and the first one to get really comfortable wins. . .lol.

**joking**

I like your GF, she's a sharp one, she is.

[quietmorning]

People I deal with day to day have no assumptions about apnea cuz they have no reason to have any. I suppose if they did, it would be because they too had OSA.

What is the purpose of your proposed workshops?

The vision is to begin to compile and write/make resources and tools for others and myself to take into our communities to raise awareness, educate and support. And it's a you gotta start somewhere, so why not where here.

Well I feel as though I can profile (I know it's not considered politically correct but we all do it intuitively) people who have OSA just by looking at how fat they are and/or the shape/size of their chin. At first I tried to make others aware but found it to be futile. So now if a conversation re: symptoms comes up, I'll let them know about my own OSA/CPAP experience and if they want to know more I'm happy to help them in any way I can.

It's like trying to wake people up about the collapse of civilization that we are going through right now but people do not want to know or cannot believe it because it is occurring so slowly and imperceptible .... oh well, all we can do is prepare and take care of ourselves.

Politically correct or not, I agree, that's how our brains are wired, and once we are educated in something, we tend toward filling in the space between the perceived info. I do this too. Hopefully, it serves to help someone when the opportunity arises.