So Upset about the Cpap

JohnBFisher wrote: If you have never faced anything as difficult as this, then I rejoice that you have had such a wonderful life.

We don't know if ReadyforRest has had "such a wonderful life." And we don't know the particulars of why, for her, this has been the hardest thing she's had to do.

Read Reneee's thread -- she's another new poster who has openly expressed her negative feelings towards using her cpap machine (and her hope that losing weight will eliminate her SA). Turns out she watched her son pass away while on a ventilator less than two years ago, so she has some very painful psychological associations to overcome between the cpap machine and her memories of that ventilator. I'm sure she'll do it. But prior to her posting this part of her story, someone posted the following message to her:

Q: What's the most common medical term used to describe people who decide to treat sleep apnea with weight loss?

A: Dead.

We never know someone's backstory unless they choose to share. But whether they share or not, what if we were to just accept and honor when someone says they are struggling or suffering, and ask what we can do to support and help.

kaiasgram wrote:We never know someone's backstory unless they choose to share. But whether they share or not, what if we were to just accept and honor when someone says they are struggling or suffering, and ask what we can do to support and help.

Words of Wisdom!

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.

This is a board for support, not for moralizing.

49er

Hi Kaiasgram,

Sorry, I didn't mean to imply that because "tough love" is effective for some people, it should be used on this board.

Actually, I felt that because it is isn't always effective and we don't know the stories of the person who post (I have said that constantly), it should not be used at all. Your point about Rennee's situation is a perfect example of that.

By the way, I have had a horrible adjustment to cpap treatment. The longest I have been able to sleep on the machine is 4 hours. And I was someone who was greatly looking forward to getting a machine

One reason I haven't posted about my plight is I don't want to to be told I have a bad attitude or to get over it. I have had so many tears of frustration that that is the last thing I need to deal with.

Great point by the way about accepting people where they are.

49er

kaiasgram wrote:

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.

49er wrote:

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.

This is a board for support, not for moralizing.

49er

ROFLMAO! Really? Isn't that what you were just doing? Moralizing how we all need say "oh poor you, you have it so tough" and never ever point out that the other side consists of Depends, insulin shots or funerals?

For crying out loud guys and gals....hasn't this subject been beaten to death enough. Why don't you all stop the rhetoric and shake hands...we are all supposed to be friends here helping each other out by suggesting ways to optimise our therapy. Not arguing about who said what to whom!!!!!!!
Cheers
Nan

49er wrote:Hi Kaiasgram,

Sorry, I didn't mean to imply that because "tough love" is effective for some people, it should be used on this board.

No worries, I was just acknowledging as you were that some people respond positively to the "snap out of it" approach. I know you're uncomfortable with it as am I, and for the same reasons.

I just spent 5 days in Las Vegas with 25 people in 2 houses. Despite there being plenty of privacy, I was with a bunch of my hubby's classmates and their spouses (most of whom were also in the same class). They ALL ended up knowing I use a CPAP and use insulin - instead of feeling embarrassed or humiliated, these great people were full of admiration that I stick with my therapy, and with us all in our 50s, were asking many questions.

You don't have to announce your XPAP therapy publicly, but there's no need to hide it and feel embarrassed or humiliated - you'll be surprise how many other people you know use one - or they know people who do.

Hang in there - this gets easier - you won't succeed instantly.

Cheers,
xena

kaiasgram wrote:... We don't know if ReadyforRest has had "such a wonderful life." ... We never know someone's backstory unless ...

Wow! It's not often someone accuses me of being heartless and taking others to task for showing that there are many sides to any story. I try very hard to help others see the benefit of xPAP therapy and to help them adjust to living with a therapy that can save their lives.

I do NOT need to be lectured by you that it can be a hard thing to accept. My point was exactly that we do NOT know what the poster has seen. If this is the toughest thing, then their life has been pretty blessed. But I doubt that is the case. People who fear / fight the therapy often have other issues. It matters not to me if they seem valid or not. I don't matter in that equation. What matters is the person that's struggling with the therapy.

I have *always* tried to help others. I do NOT need to be taken to task for not caring.

Basically, go to hell. I think I need a break from the forum.

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

For me, it took scare tactics, but it was not initiated by anybody. I have known for years that I have sleep apnea. Probably bad for at least 5 years. Who knows when it actually started. My mom has sleep apnea and had used a machine on and off for years. I hated her machine. When traveling, it was loud, and I had trouble sleeping. She didn't snore, so she was actually quieter without it. And for years, she only had a nasal mask, so I thought that was how it had to be. I also assumed that sleep apnea was about waking up multiple times a night, and thus a version of sleep deprivation. It never occurred to me that it was causing more problems like heart problems.

A couple years ago, my doctor started warning me that my high blood pressure was putting me at a high risk of stroke. I was in my 30s. It was easy to dismiss. Then, a year ago September, I had a big scare. I was traveling, and woke up in the hotel room with severe vertigo. The room was spinning, and I couldn't even walk or keep a sip of water down. I had to go to the emergency room. In the ambulance, my blood pressure was 197 over something. And I remember the doctor saying it was NOT a stroke. What hit me was that he CONSIDERED it.

When I got home, I looked up vertigo online, and it can be a symptom of a stroke. A couple days later, it started again, and I had to go to the local emergency room. Again, the doctor ruled out stroke, but did a cat scan to make sure it was not something really serious. This really scared me. During the next few months, my primary doctor added blood pressure medication, then doubled it, then added another, then doubled it, and added another. It was down a little, but not into the normal range. Then I saw something on the news. Sleep apnea causes high blood pressure, heart attacks, and stroke. I had another appointment in a couple weeks, so I decided to confess that I have sleep apnea. It was time to deal with it and solve it. That was March. I had my sleep study in APril and got my machine on April 30th. Most nights are okay to good. A few are really awesome, and a few are really bad. I have not completely mastered it yet, but I feel better overall. My blood pressure is better, even normal if I have multiple nights in a row that are good.

For me, it really did take some scary warnings from my doctor and scary symptoms that matched those warnings to get me to move forward with mastering my fear of the cpap machine.

I do not feel humiliated about sleep apnea or my machine. I don't feel as shy about it as I expected to. I have no problem with somebody seeing me in bed with it. I share a hotel room with a family member or friend, and that has not embarrassed me at all. But I do not feel comfortable wearing it to the bathroom where I might get seen. I don't understand that at all, but I guess not everything makes sense about how we cope with things.

I was worried that my cats would not sleep near me again, but they adjusted quickly. Within the first 2 nights, they both came up and sniffed the mask while the machine was running. And within 2 weeks, Quinn was snuggled up against me again. I do try to make sure I don't aim the exhaust at her.

Basically, go to hell. I think I need a break from the forum.

John,

I have always enjoyed reading your posts even though I never responded. I also greatly admire how you seem to persevere in spite of all the challenges you keep facing.

But is it necessary to use the above language in response to someone who did nothing to deserve that in my opinion?

Of course, no one is perfect and I certainly have not always worded my posts in the best manner on this forum so I am not condemning you at all.

I am just saddened that someone of your stature felt the need to do that.

49er

I'll bet when folks are diagnosed with Diabetes, they spend time telling about blood sugar levels, how to monitor it, etc.,.

But with Sleep Apnea, doctors spend 15 minutes with you & hopefully go over the results & explain them.

But they spend little or no time talking to the patient about how to deal with being diagnosed with the disease or the process.

See you in 3 months & make sure you use the machine for at least 4 hours a night!

The DME folks typically spend enough time to show you how to operate the machine and wear the mask. I personally don't recall getting any instructions on how to solve leaks.

you get home later that day with a bag full of equipment, a mask & a hose.

Good luck!

No wonder the CPAP compliance rate is less than 50%!

49er wrote:... But is it necessary to use the above language in response to someone who did nothing to deserve that in my opinion? ...

You are correct. I should not have posted the way I did.

So, to kaiasgram in particular, and the forum in general ... Please accept my apologies. I can offer excuses, but they are just that. And poor behavior is not really excusable. So please accept my humble apology.

Because I seem to be in such a poor mood - and have been criticized recently for my comments - I probably will only comment on specific issues with ASV therapy. If my own personal feelings are negatively tinting my comments, then it's time for me to just deal with facts and specific therapy issues and not deal with feelings.

So, again, please accept my apology.

JohnBFisher wrote:

49er wrote:... But is it necessary to use the above language in response to someone who did nothing to deserve that in my opinion? ...

You are correct. I should not have posted the way I did.

So, to kaiasgram in particular, and the forum in general ... Please accept my apologies. I can offer excuses, but they are just that. And poor behavior is not really excusable. So please accept my humble apology.

Because I seem to be in such a poor mood - and have been criticized recently for my comments - I probably will only comment on specific issues with ASV therapy. If my own personal feelings are negatively tinting my comments, then it's time for me to just deal with facts and specific therapy issues and not deal with feelings.

So, again, please accept my apology.

John, this is why you are one of my favorite people on this forum. Anyone that can stop and take an honest look at their own behavior and reply the way just did -- aces in my book. For the record, I didn't think what you said was very offensive anyway, but the fact the some did and you are willing to accept the criticism like this -- I can't commend you enough.

You are a gentleman and overall, just a great human being.

John
You should not have to apologize, you were goated into it. It should be the 3 that were doing the bashing that should be doing the apologizing...not you. I replied to your post, as I saw it for what it was, but I was shocked by their out and out "gotta get somebody" mentality and I was too upset to respond nicely, so I erased my reply before I hit submit. I have never seen you be anything but a perfect gentleman whenever you have replied to posters questions, but this time they were out to squash anyone that had a different opinion to theirs. I still and will always believe that you are a gentleman and I and others do respect what you have to say.
Nuff" said on this subject..rant over..
Cheers friend
Nan