CPAPtalk.com

Hi
Welcome...Im new here myself...Im sorry that someone told you to "get over it" that to me is very hurtful when your going through a stressful time. You obviously came here for some kind of sympathy and you deserve it. I am in the same boat as you about being embarrised wearing it. I still cant let my husband of kids see me wearing it. Some people just dont understand how hard it can be for some people. I am at the point where it was become so stressful Im on the fence about just chucking the whole thing in. Thankfully I have found some lovely people on here that have been a tremendous help and thats the only reason Im still sticking with it. They have shown me there is light at the end of the tunnell so I keep plodding on. Hang in there hun...I feel your pain, just remember your not alone..hugsss Daisy.

Hi unhappy,

I'm in my second month of cpap use. I didn't feel ashamed at having to use the mask however I was angry. My problem is related to having overly large tonsils that are collapsing and closing off my throat. I can remember begging doctors when I was younger to take them out because of all of the sore throats I would get including strep multiple times in one year. I'm not sure why your DME started you with a full face mask unless based on your answers they thought it might be best. I am on my second mask, nasal pillows, as the first head gear setup hurt my ears. The second head gear went over my head and I felt like my head was being squeezed in a vice. I have now received the Pilario Nasal Pillow set up, which has a strap around the back of the head, and absolutely love it. It takes adjustment and for me the big adjustment came from being a stomach sleeper to a side sleeper. Please give it a chance and do what some of the other parents suggested about explaining to children. I know they will appreciate mommy having more energy in the future. Keep visiting the forum with questions as there are so many experienced users here.

Best of luck!

Deb

Daisy004 wrote:Hi
Welcome...Im new here myself...Im sorry that someone told you to "get over it" that to me is very hurtful when your going through a stressful time.

Well, sometimes, "Suck it up, Buttercup!" IS the right answer. The trick is to get people to listen.

archangle wrote:

Daisy004 wrote:Hi
Welcome...Im new here myself...Im sorry that someone told you to "get over it" that to me is very hurtful when your going through a stressful time.

Well, sometimes, "Suck it up, Buttercup!" IS the right answer. The trick is to get people to listen.

Life isn't always fair, in reality it's not even close for most people. You have been taught (In the last 30 LIBERAL YEARS) that nothing is anyone's fault, what happens to us is always the fault of the other guy. While Socialism look good when you don't think you are getting your share, it only drags everyone in the country down.

It's soon going to be time to take responcabilty for your own problems, because the government can't do it without more people pulling the load, right now we are pulling our wagon with two horses, and dragging four dead horses behind the wagon. The two still pulling are going lame. For us to surive we are going to have to stop the wagon, cut off the horses, and try to keep the two tired horses in the pull. (Marshall Law).

What it comes down too, work at getting your health back, only you can do it, it doesn't pay to look good in a open casket, I'd rather life better and have the casket closed. Jim

archangle wrote:

Daisy004 wrote:Hi
Welcome...Im new here myself...Im sorry that someone told you to "get over it" that to me is very hurtful when your going through a stressful time.

Well, sometimes, "Suck it up, Buttercup!" IS the right answer. The trick is to get people to listen.

After initially wanting to disagree, out of curiosity, I consulted Dr. Google:) to find out if scare tactics are really helpful in getting people to change health behavior for the better. According to this link, the evidence is mixed:

http://www.inforum.com/event/article/id/339320/

"When researchers interviewed obese African American patients for a study published two years ago, they uncovered some interesting nuances about how these patients perceived the use of weight-loss scare tactics. “I like to be scared. Scare me with all the bad things that can happen if I don’t lose weight,” one patient told the researchers. But others didn’t like it and even found it intimidating. “I look at it as a threat. The only thing the doctor should do is encourage,” one patient responded.

The upshot? Scare tactics seem to work sometimes, but they don’t work all the time and with many patients they’re counterproductive. Clinicians would do well to tailor their message, the researchers wrote.""

In my opinion, since this is a board for support and we don't know the poster's history other than what they mention on this board, I think it is totally inappropriate to to use fear based tactics to scare people into using their cpap machine. This is particularly true for first time posters who have a million things going through their mind regarding adjusting to cpap and probably feel the last thing they need to hear is they are going to die tomorrow if they quit using the machine.

I feel that sticking to your own personal experience is best which many folks on this board do a great job of.

49er

"Suck it up, Buttercup." (SIUB) should be used judiciously. It's rarely the best choice for the first round of advice. Sometimes, it's necessary when other options fail.

archangle wrote:"Suck it up, Buttercup." (SIUB) should be used judiciously. It's rarely the best choice for the first round of advice. Sometimes, it's necessary when other options fail.

I am glad you clarified that.

However, in my opinion, that advice is used way too often on this board when we don't know the whole story. Other options can fail for many legitimate reasons that aren't the fault of the person with sleep apnea.

49er

49er wrote:

archangle wrote:"Suck it up, Buttercup." (SIUB) should be used judiciously. It's rarely the best choice for the first round of advice. Sometimes, it's necessary when other options fail.

I am glad you clarified that.

However, in my opinion, that advice is used way too often on this board when we don't know the whole story. Other options can fail for many legitimate reasons that aren't the fault of the person with sleep apnea.

49er

Yea, but sometimes it's SIUB and live with it, SIUB and find a fix, or die.

Far too many people choose the die option.

The first thing you have to do is put it in perspective. Yes it sucks having to wear a machine. But..... There are waaaaay worse things to be diagnosed with. Many that are alot more embarrising. Imagine trying to wipe your ass with Parkinsons or one of the many other motor function Diseases out there.

There comes a time where you have to ACCEPT that you have a problem, and eventually there comes a time to EMBRACE the treatment cause of how much better you feel. Denial wont make this go away. So please work on Acceptance. If you can accept what is happening it will make dealing with so much easier.

A Couple Tips.

Some people use a drawer that they open before bed to store there machine in. Then they put their mask away in the morning and shut the drawer. So you dont have to leave the machine out for everyone to see.

As for the panic suffocating feeling. Im not sure what machine you have so not sure what options you have. But, someone mentioned Ramp time. That will help with that feeling. What else will help is some machines have exhale pressure relief. Otherwise there are xpap machines called bipaps. That have different exhale and inhale pressures.

Whatever you decide, Good luck to you and I hope you can eventually feel better like I do. I havent felt this well in Ten Years.

I must agree with archangle on this one about suck it up buttercup. We have had some patients come on the forum that have been given excellent advice and choose to keep on crying about how this sucks and it doesn't work for me attutude. A good example is one poster that has been here about a year still ignoring everyones tips and advice and going on her merry way just complaining...that person has been told numerous times to suck it up and get on with the job and fix it.. to no avail...she doesn't hear it. We can give patients help and advice when they first come on the forum to try and help out, but if they choose to ignore that advice and help...then we tend to get cranky. Sometimes the scare tactics really do work to get that persons head turned in the right direction to stop complaining and get on with fixing the problems. I am sorry to tell you 49er, but when I first read your post about amazon not taking phone orders...I thought so don't buy from them..go to another on line seller.....easy peasy..don't give them your business, I certainly would not.

49er wrote:
In my opinion, since this is a board for support and we don't know the poster's history other than what they mention on this board, I think it is totally inappropriate to to use fear based tactics to scare people into using their cpap machine. This is particularly true for first time posters who have a million things going through their mind regarding adjusting to cpap and probably feel the last thing they need to hear is they are going to die tomorrow if they quit using the machine.

I feel that sticking to your own personal experience is best which many folks on this board do a great job of.

49er

Actually, what you are experiencing is common, you perceive what you want and not what is actually there. There are very few "scare tactics" used on the board. There was one in the entire thread which is several pages now. Considering the effect of not using cpap is generally extremely negative and can be death, not to say this at least once is negligence. Since we don't know the back ground and cognitive style of the person posting, all forms of support need to be provided.
We are talking to adults here, with responsibilities like kids, driving 2 tons of steel at 100km while falling asleep, it is quite possible that they and their kids and some other people will die tomorrow on some highway. In 2009, 33,808 people died in the USA in traffic accidents.

maddyn wrote:There comes a time where you have to ACCEPT that you have a problem, and eventually there comes a time to EMBRACE the treatment cause of how much better you feel.

I agree with you maddyn (though not everybody feels better on cpap). What I and others have concerns about is how little tolerance and empathy -- and ironically, acceptance -- we sometimes show to those who have not gotten to that place yet on their journey. I worry that the "get over it" "suck it up" "prepare to die" responses to those folks are more likely to hurt than to help. As 49er points out there is research showing that "tough love" is effective for some people. But I'm not sure it's the most effective response to someone who is vulnerable and struggling. Further, I wonder how many people who might have joined our forum for help and support, when they come to the forum if the first thing they see is a thread full of "get over it" messages to unhappy struggling newbies, decide not to seek help here. We'll never know how many are in that group, but I'd guess the cpap failure/quit rate is higher in that group than in the group of people who join here and continue to express how much they hate cpap. At least these folks are still 'in the game' so to speak, trying to make it work, even if their attitude rubs others the wrong way.

We tell struggling newbies that they need to accept their condition and the treatment, yet we sometimes show a real failure to accept where they're at. We sometimes come close to shaming them for not feeling the way we think they should feel. And please also remember that there are some people who do not feel "much better" on cpap, so the idea of embracing is a bit much to expect, especially in the early months of cpap. I would rather have people staying on the forum, continuing faithfully with cpap and "whining" (as others would call it) the whole way than to see them go away and give up.

Here, here! I heartily agree, kaiasgram. I'm almost three months on xpap. And it's been the hardest thing I've ever tried to do. I guess not just because it involves the physical components, but also the psychological ones as well. It's simply a daunting experience. One that you are not prepared for at all when you start out. So many things to adjust to, pressure blowing into your throat all night, having a hose attached to you when you roll around at night, uncomfortable masks, finding the right mask, getting your mouth to stop fricking opening!, getting the pressure just right, getting the right machine ... then having to admit to friends and relatives that you are hosing up at night, having to face your husband looking like that ... wondering what he really thinks of you (and what you look like going to bed ... ugh).

All these things to deal with. It's a lot. Yet it's worth it to keep trying and to find out as much as possible from this place and your sleep doc and the techs and DME that you possibly can ... to make your life longer and healthier. It's coming to a place like this ... my "safe place" ... where I can rely on great advice and the years of expertise of people who are knowledgeable, that's what's gotten me through to this point and allowed me to have the success that I'm now having.

ReadyforRest wrote:... Here, here! I heartily agree, kaiasgram. I'm almost three months on xpap. And it's been the hardest thing I've ever tried to do. I guess not just because it involves the physical components, but also the psychological ones as well. ...

There's part of me that REALLY wants to say "Suck It Up, Buttercup!" to posts like this. ...

I've used a CPAP and BiPAP unit for almost 20 years. The past three years I've used an ASV unit. I need the ASV machine because it steps in and breathes for me when I don't reliably breathe on my own. And even after all these years my wife does NOT understand that I no longer can sleep without it. We were laid over in JFK due to a delayed flight, they offered us cots. My wife told me to "just get some sleep". Ugh!

I take insulin four times per day. That's 7 shots per day (I divide a large dose into three shots because it seems to do better when I do that). That's each and every day. Everyone dives into a meal and I find myself still testing and giving myself insulin. Or, if I'm lucky, I can give it before the meal arrives.

I've worn glasses since I was about five years old. I *had* to sit at the front of the class to be able to see the work on the black board. And the teachers always wanted me in the back, because I was taller than other kids my age.

You know what? None of these things are really a burden. Why? Because I decided a long, long, long time ago that if I needed something to allow me to do the best I can - my eye glasses at the time - then I would just use them. The "burden" of these things is not a burden if you do not think that it is.

But you know what? You are right. If you have never faced anything as difficult as this, then I rejoice that you have had such a wonderful life. But don't give up .. none of us should .. we are defined not by how we do when everything is right. We are defined by how we continue against all odds. THAT actually does build character. You can make it work. Your family and friends need you to avoid the horrible health consequences of not treating the sleep apnea.

So, hang in there (to the Original Poster as well). You can overcome this and thrive in spite of what feels as if it is an insurmountable problem.

I got a new mask on Friday and was elated that it might solve my leaks onto my eye... it only worked for 4 hours before I entered mask leak hell.
Most of Saturday was being spent frustrated and mad.... I surfed the internet for help tips, videos on fitting the mask... ANYTHING!!
Today, I sat down and spent a lot of time on the new mask and finally determined it was just a bit too big for me, which caused the thin membrane to wrinkle.

I was overjoyed that the leaks were not due to my overtightening the straps or by my "not sucking it up" and living with it.

in my humble opinion as a 3 week user.... we are all here because the doctor or the DME did not do a proper job of explaining the process during the diagnosis.

So we come here seeking help, support in dealing with it along with asking suggestions on solving issues and to vent our frustrations or whine.

some of us need to vent & whine more than other