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Vonixscotland
Unread post  Post subject: Personal issues regarding wearing masks  |  Posted: Tue Mar 20, 2012 6:20 pm

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As an RN working in sleep medicine (UK) I talk to both men and women who are very embarrassed about having to use CPAP and having to wear a mask. Especially those who do not have a partner living with them. There are some people who have been married for many years and has never let their spouse see them with the mask on since starting CPAP as they feel so embarrassed. Their spouses have no problems with the CPAP and cannot understand what the issue is. Can anyone offer advice regarding personal issues so i can share with our service users. I have mentioned a 'buddy' system in the past for people starting CPAP (this seems to work for people in areas such as people newly diagnosed with diabetes) but was declined, even though a lot of people who are established on CPAP have offered to become 'buddys'.....but too many issues /red tape re confidentiality etc...
We do discuss health benefits and things like 'would your partner prefer you snoring++ all night or they are frightened because you stop breathing' etc.
Any advice or suggestions would be very grateful.
Oh and I will print off contact details of this forum site and hopefully some of our service users and my colleagues will join in.
It would be good to get 'international' .


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TheLankyLefty
Unread post  Post subject: Re: Personal issues regarding wearing masks  |  Posted: Tue Mar 20, 2012 6:55 pm
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I notice that same phenomenon. I often theorize that it has something to do with sleep being a very personal thing. We have been sleeping for "X" number of years and then we are told that in essence, "you aren't doing it right." Then they are told they need to have a machine encroach on their personal sleeping space. Just my theory based on stories I hear from many patients. It is very very common though...don't you think?

The buddy system is great. It lets people know that they aren't alone in this and that help is out there if they need it. Online anonymous forums are great for skirting the confidentiality problems. Discussing the health benefits and the improvement in the quality of life (for all people involved) is usually the route I take.

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Sleepy1
Unread post  Post subject: Re: Personal issues regarding wearing masks  |  Posted: Wed Mar 21, 2012 7:15 am

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Jason, have not been on the forum in a while. Just happened to see this post and I identify with what you said. I have been on cpap for about over a year and have always skirted around the subject with my wife and friends, even to the point of not putting the mask on until after my wife goes to sleep! Not sure what the stigma is. That is why your videos have been so helpful. I have never even seen anyone but myself wearing the FitLife mask so it is helpful to get tips about right and wrong and hear issues that others are having. It is also educational to hear about new products and trends. Thanks for putting up with all the questions and helping where you can!!


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kyhrsluvr
Unread post  Post subject: Re: Personal issues regarding wearing masks  |  Posted: Sat Mar 24, 2012 6:19 am
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I can relate......even though cpap has improved my quality of life by just making me less tired and more energetic, I am still embarrased about it. Even though a few of my collegues at work know I use it, I never mention it unless they ask me a direct question about how I am doing with it. I usually say I have a love/hate realtionship with it, but am feeling better and I don't elaborate on anything else. With my husband, even though he is fine with it and has seen the improvement it has made with me (less irritability with him ;) ) I still don't like him to see me with it on especially, with the lights on. And I can say it has diminished, no I should say eliminated, the cuddling and those types of things that were nice especially on cold winter nights :( .
I guess I am hoping that some day, medical technology will evolve to the point of not having to depend on cpap :!: Hey, a thought just occurred to me......I am looking for a new job, maybe instead of pursuing one in microbiology, I should find something in sleep studies research. Problem is, I'm heading back to Wisconsin, so it has to be there. Of course, the University of Wisconsin at Madison would be an ideal location. Does anyone no anyone at UW that can give me a reference :lol:


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adam
Unread post  Post subject: Re: Personal issues regarding wearing masks  |  Posted: Wed Jan 02, 2013 12:16 am
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The mask has never bothered me....I even posted pics of me wearing it on facebook! lol
At bed time I put the mask on with a short hose piece and chase the kids around like I am a crazy elephant.
I just try to have fun with it...because it is a necessity!

As for your partner not being intimate...when I'm wearing it...it has never interfered so far...
I think just have some fun with it if you can. ;)


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kaiasgram
Unread post  Post subject: Re: Personal issues regarding wearing masks  |  Posted: Wed Jan 02, 2013 2:37 am
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kyhrsluvr I also keep thinking about how I might make a contribution to this field. Being a psychotherapist the obvious thing for me would be to offer a support group focusing on the kinds of issues being brought up in this thread. Jason and vonix, have you noticed whether your young adult patients struggle more with embarrassment and self-consciousness than older folks?


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TheLankyLefty
Unread post  Post subject: Re: Personal issues regarding wearing masks  |  Posted: Wed Jan 02, 2013 6:12 pm
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kaiasgram wrote:
kyhrsluvr I also keep thinking about how I might make a contribution to this field. Being a psychotherapist the obvious thing for me would be to offer a support group focusing on the kinds of issues being brought up in this thread. Jason and vonix, have you noticed whether your young adult patients struggle more with embarrassment and self-consciousness than older folks?
Young adult patients I would say "all" are self conscious. Those feelings seem to linger longer with women as the ages go up.

I've dealt with this with people I see in office by either pointing out that they can have an honest conversation with their partner so that it's out there and talked about. I also go the route of "would you rather wear a mask at night or have a stroke/heart attack?"

I think that with education about their condition, the importance is realized. Some folks are honest with me and just flat out say they aren't going to use it. There really isn't much I can do about that.

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kyhrsluvr
Unread post  Post subject: Re: Personal issues regarding wearing masks  |  Posted: Wed Jan 02, 2013 8:20 pm
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kaiasgram wrote:
kyhrsluvr I also keep thinking about how I might make a contribution to this field. Being a psychotherapist the obvious thing for me would be to offer a support group focusing on the kinds of issues being brought up in this thread. Jason and vonix, have you noticed whether your young adult patients struggle more with embarrassment and self-consciousness than older folks?


I think some of us struggle with all kinds of issues and wearing a mask can add to such feelings of insecurity or perhaps our own mortality. Sometimes it's just vanity but whatever the case, I think MD's and/or DME's (I know some are better than others) should offer advice, counseling, and or some sort of support network. That's probably a utopian thought but perhaps, just as the masks themselves have improved, as sleep apnea becomes more recognized and "mainstream", the more health systems will address these issues at more than just their "face value" :oops:


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kaiasgram
Unread post  Post subject: Re: Personal issues regarding wearing masks  |  Posted: Sat Jan 05, 2013 8:44 pm
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kyhrsluvr wrote:
I think some of us struggle with all kinds of issues and wearing a mask can add to such feelings of insecurity or perhaps our own mortality. Sometimes it's just vanity but whatever the case, I think MD's and/or DME's (I know some are better than others) should offer advice, counseling, and or some sort of support network. That's probably a utopian thought but perhaps, just as the masks themselves have improved, as sleep apnea becomes more recognized and "mainstream", the more health systems will address these issues at more than just their "face value" :oops:

It may be a utopian thought but I really believe that the lack of the kind of support you mentioned has a lot to do with the sad compliance stats for cpap.


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larrytpost
Unread post  Post subject: Re: Personal issues regarding wearing masks  |  Posted: Wed Jan 09, 2013 8:41 pm

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I have been on CPAP for 24 years. I am still uncomfortable about wearing a mask with the light on. :oops: As to talking about sleep apnea, CPAP, masks, etc., I have found that some of my friends also use CPAP and we compare notes about masks, filters, rainouts, forums to read ... Must be my age-group. :lol:


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Cherylgrrl
Unread post  Post subject: Re: Personal issues regarding wearing masks  |  Posted: Wed Jan 30, 2013 4:19 pm
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Everybody who has to use a CPAP should visit:

http://www.cpaptalk.com/viewtopic.php?f ... e+dog+dare

A new CPAP user "triple-dog dared" other forum members to publish a picture of themselves with their masks. The replies went on for 28 pages! She definitely struck a nerve, and I think it really helped to see real people in their masks. Some decorated them!

When I had to start wearing a mask and I said "I hate this!", my husband said that I sleep so quietly now that he knows I'm getting rested and healthy. We both sleep better now that I'm not snoring. As my pulmonologist said to me, it really isn't that hard to die in your sleep. But it's pretty unpleasant for the person who sleeps with you! They should be happy to see you with your mask on!


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TheLankyLefty
Unread post  Post subject: Re: Personal issues regarding wearing masks  |  Posted: Wed Jan 30, 2013 10:42 pm
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I may have to post my pic here as well.

Last night I was testing another mask. This time with a twist. I was wearing a CPAP not just to test out the mask, but also as a person/technologist that really felt like I would benefit from wearing a CPAP (APAP to be exact).

It's strange how the perspective changed from "wearing this is only temporary because I'm just testing x mask", to "this kind of sucks that I may ACTUALLY need this to sleep.

I got over myself after an hour and slept like a log! :D

It is comforting to see that there are others out there going through the same thing and there really is no shame in it.

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kaiasgram
Unread post  Post subject: Re: Personal issues regarding wearing masks  |  Posted: Wed Jan 30, 2013 11:31 pm
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It should be acknowledged that Cherylgrrl was one of the good sports on that 'triple dog dare' thread. :) It was a fun thread, and really interesting to see the faces that go with some of the names of 'regulars' on the forum. I so wanted Pugsy to post her pic, but all she'd let us see was her tattoos -- Cherylgrrl, remember the spider? Amazing!

Jason, are you developing OSA?


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TheLankyLefty
Unread post  Post subject: Re: Personal issues regarding wearing masks  |  Posted: Thu Jan 31, 2013 10:54 am
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Short answer is yes, though it is likely temporary. Last night was my second night using APAP as a need.

It's really interesting to me that now that its not being used by me to test equipment, the psychological implications (mostly self conscious) are right there. My wife just said its better than my snoring and maybe we can both get some sleep. She is very supportive and was the one prompting me that I should probably use it to see if it helps.

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kaiasgram
Unread post  Post subject: Re: Personal issues regarding wearing masks  |  Posted: Thu Jan 31, 2013 1:15 pm
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TheLankyLefty wrote:
Short answer is yes, though it is likely temporary.

Oh god don't say this on the cpaptalk forum, you will get pummeled with the message that you're in denial, there will be mockery and sarcasm, you will get suggestions that you pick out your nursing home and ask your wife if she is prepared to spoon feed you and catch your drool. :shock: There's a lot of good on the forum but there is a rather militant core group and they would show no mercy. You've had such a warm and welcoming reception there already, right :? ?

Quote:
It's really interesting to me that now that its not being used by me to test equipment, the psychological implications (mostly self conscious) are right there. My wife just said its better than my snoring and maybe we can both get some sleep. She is very supportive and was the one prompting me that I should probably use it to see if it helps.

Your wife sounds like a gem. :) And thanks for sharing what you're experiencing as you go from "only trying out a mask" to "this is what it really feels like to be a patient with this." I feel for those who do not have a supportive spouse or partner.


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TheLankyLefty
Unread post  Post subject: Re: Personal issues regarding wearing masks  |  Posted: Thu Jan 31, 2013 5:46 pm
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:lol:

I only say "temporary" because that's what my doctor said when I mentioned it to her. Spousal support, or any support for that matter, is integral. My wife really is a gem!

:lol: at the reception. I've had some people say that through PMs to me here. Not my reception, but theirs! People have opinions and that's simply the way it is. If There were more people visiting here it could easily have the same comments.

:lol: Drool and being spoon fed...... Love it! :lol: That made my day!

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kaiasgram
Unread post  Post subject: Re: Personal issues regarding wearing masks  |  Posted: Thu Jan 31, 2013 6:01 pm
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TheLankyLefty wrote:
I only say "temporary" because that's what my doctor said when I mentioned it to her.

Oh sure, yeah, mm hmm, ok -- double denial !!! :lol:
I "triple dog dare you" to post this "over there." :lol:


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TheLankyLefty
Unread post  Post subject: Re: Personal issues regarding wearing masks  |  Posted: Thu Jan 31, 2013 8:23 pm
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No way!!! :)

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Paul Trethewey
Unread post  Post subject: Re: Personal issues regarding wearing masks  |  Posted: Sat Mar 30, 2013 7:31 pm

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My wife refuses to sleep in the same bed with me now because the noises from the CPAP machine, the air blowing on her from the mask's exhaust ports, the "face farts", and the whole scene were just too much for her. I am looking for alternatives to the CPAP "gold standard".


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TheLankyLefty
Unread post  Post subject: Re: Personal issues regarding wearing masks  |  Posted: Sat Mar 30, 2013 10:51 pm
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Paul, what was your AHI and RDI from your sleep study? How long ago was the study? There may be some options available depending on all of this.

http://www.freecpapadvice.com/Surgical_Treatments_For_Sleep_Apnea.html

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