Day 6 Part II: CPAP, Anger, Torture & Waterboarding

Venting my anger:

I’m actually surprised at how seriously the sleep apnea initially, and my struggles with the CPAP machine over the last week, has negatively affected my life. I never imagined I’d be going through a struggle this intense.

I actually find myself, and perhaps reflected in the tone of my posts, going through the classic “stages” everybody talks about. Perhaps my initial posts were panic. Perhaps my joking-around posts yesterday were a time of denial. Well, it’s anger’s turn.

Some of my anger-venting here is going to focus on some things said, a little on this message board forum, and more in the chat room last night. If I mention anything you, reading this post, said, please don’t take it personally. I’m not angry at anyone here. On the contrary, I’m grateful to everyone here – not only the many kind words and helpful suggestions, but even the ones who said things that are angering me now, all of which was well-meaning and well-intended, because they’ve given me the focus with which I can vent my anger, which is really anger at the way my treatment is going, not at anyone here or in the chat room.

A few days ago, someone here in these boards suggested that I need to keep saying to myself, “I love my mask, I love my mask, I love my mask.” Now, I’m an eternal optimist. I’m the type of person who sees good in all people and in all things, who loves the beauty of nature and the wonder of the world, and who can always see a rainbow on the horizon.

I hate my mask. No, not just the mask. I hate the mask, I hate wearing the mask, I hate being unable to scratch my nose when it tickles without struggling with the mask, and I especially, especially hate, having air forced down my throat and down my esophagus and into my stomach painfully. And more than all those things, I hate the loss of sleep, and wandering around senseless, hopeless, not even able to have a conversation without sounding like a moron.

Last night, I said in the cpaptalk chat room forum that I would try adjusting my settings, but if it doesn’t work, I’m going to take off the mask and go to sleep. You’d think I told them I was going to kill a kitten, from the reaction I got. No! You can’t do that!

“You don’t understand,” I said. “Yes we do,” someone assured me. “We understand.”

They didn’t understand.

Later, someone said, “It’s all a matter of attitude.”
Those words were the proof, the confirmation, that they didn’t understand.

Sleep deprivation is torture.
Literally.

Sleep deprivation is one of the techniques that the military (on all sides of the various conflicts of war) has used to extract information from enemy combatants. Sleep deprivation is literally torture.

On Day 6, I had gone almost a week, with almost no sleep at all.

There’s recent debate in the past several years in political circles over whether waterboarding is torture. I do not want to get into that debate here on this forum, and whether or not that particular practice is torture is probably a matter of semantics.

But I can tell you this, first hand, my own experience: Sleep deprivation is torture. It’s torture. It’s torture that can break a person.

So to tell me that I need to say, “I love my mask, I love my mask,” is a little bit like saying, I have to say, “I love being waterboarded, I love being waterboarded,” and that saying those magic words will make it all better.

To tell me that it’s all a matter of attitude, and I just CAN’T take off my mask, is a little bit like telling me it’s all a matter of attitude, and I just HAVE to spend the night waterboarding myself.

I’ll do the best I can. I take my treatment very seriously. If I didn’t, I wouldn’t have gotten this far. I know I must have my sleep apnea treated. I know, even, that I could die from the sleep apnea. I desperately want to make this work. I've invested money, time, and energy, and have actually tortured myself, to make this work.

But if, IF my treatment fails, it WON’T be because I failed my treatment.
It will be because my treatment has failed me.

I’m doing the best I can. At THIS point, I’m thinking, tonight, I’ll take that level which was 16, and is now 14, and cut it all the way down to 8. May be I can start at 8, and if I don’t swallow air, move it up slowly and progressively, getting used to the machine and the sensations until eventually, I can get the level up where it needs to be.

If that doesn’t work, I’ll talk to the doctor about trying the Bipap. I'll try the tongue exercises. I read that there's some sort of dental piece used in Europe, I'd try that. As a last resort I'll even try surgery, though I want to avoid that.

I’ll also continue to try to make my CPAP work, including trying any other helpful suggestions. I’ve already tried propping myself up, but as I always sleep on my side, I’m not sure that does much. Seems propping yourself up is a back-sleeper thing to me.

But no way, no how, is anyone going to tell me this is about my attitude, or that all I have to do is say, “I love my mask,” and this will all go away. This isn’t about attitude. It’s about being tortured. Because that’s what sleep deprivation is. I don’t care where you stand on waterboarding, I know where I stand on sleep deprivation and I know where I stand on pumping air into my stomach all night, because I’ve been there, and I’m there now, and it's torture.

Thanks, everyone here, and in the chat last night, for all your help. Thanks for listening. Thanks for the helpful advice, including how to set my machine and my manuals. Thanks for being good friends through a rough time. And thanks for giving me a focal point for my anger at my frustration over my treatment.

I’m not going anywhere, I’ll be here, and I’ll continue my fight for my health and a good night’s rest.

Peace.

IT IS about attitude!

And if you value the quality of a healthy life, you will value the effort you make with your therapy.

It IS that simple!

If you think I have made no effort, then you didn't read the post above, or I didn't express myself well.

I have not only made an effort. I have invested money, time, and literally, tortured myself.

I value the quality of a healthy life. If I didn't, I wouldn't have put myself through the pain I've already endured, and I expect to endure.

And if my treatment fails, I hope that it does not, and will make every effort I can to make my treatment work, but if my treatment fails, it will be my treatment that failed me, not me that failed my treatment. A human being can only endure so much torture.

This isn't about my attitude. I'm doing all I can. I'm taking all I can endure.

Peace.

wow, someone has some issues!
I, too am a noob to the cpap generation, and like everyone else, not by choice.
I am not overweight, just (6 weeks ago) quit smoking, have always been in good health...
it was a chronic snore that I casually mentioned to the ENT (I had a clogged ear) that put me into
this crazy world. I agree with you, it sucks!!!
I am not at the point where saying I love my cpap is gonna help me; when I was told I have OSA
and my choices were UPPP surgery or a cpap I began to research. and then I researched some more.
I came to the conclusion the cpap is less painful, reverisble (unlike surgery), more effective,
and permanent (unlike the surgery from hell as it looked to be). I decided then cpap was for me.
I completed night 4 last night and it was the worst night yet.
I have not registered on here yet, but here is my equipment: resmed elite cpap, setting of 8 or 9 I think?
also has the humidifier with it, and the mask. yea. the mask. I have the respironics profile lite gel.
anyone else familiar with this mask? It is a nose only mask. sort of a trangular shape. night 1 half way
thru the night, I had to take it off, it was hurting the bridge of my nose to the point I could not sleep.
night 2 I made it thru the night. night 3 it hurt again, badly. I tried using a cotton ball above this little piece at
the top that the headgear attaches to... seemed to help, but now starting to get random air leaks. yea, frustrating.
yesterday the bridge was killing me like I cannot explain. it looks like someone punched me between the eyes, with the
indentation. Not only that, but I am getting blisters (pimples?) all around that area. by force I purge them, but they
keep coming back. last night I only had it for 3 hours and I had to take it off. the pain is unbearable. Let me also add
I have been adjusting the mask (looser) every night. constant air leaks, I tightened it during the night (too tight) and still
had leaks last night, and the bridge was in killer pain. after 3 hours I took it off last night and still slept like crap.
I am waiting for a call back from pulmocair... I need a new mask. not a full face, they give me the willies... anyone else use a nose only mask that does not hurt them to the brink of insanity?
it was trying to research it yesterday that I stumbled upon this site.

Dave

CharlesVer wrote:
I hate my mask. No, not just the mask. I hate the mask, I hate wearing the mask, I hate being unable to scratch my nose when it tickles without struggling with the mask, and I especially, especially hate, having air forced down my throat and down my esophagus and into my stomach painfully. And more than all those things, I hate the loss of sleep, and wandering around senseless, hopeless, not even able to have a conversation without sounding like a moron.
semantics.
Peace.

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 most that start cpap suffer 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.

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.

Charles,

Sleep deprivation is torture. And I think your attitude is fine, frankly.

My first week or two with my treatment was a roller coaster of emotions. I distinctly remember at one point ripping off my mask, chucking it vehemently on the bed and going into the den to have a mad-at-the-world-why-me pity party on the sofa. I seriously considered going and grabbing my CPAP machine and throwing it through the window. I pictured myself happily stomping my tubing flatter than roadkill. And boy! do you feel like the only person on earth in those early morning NEED MY SLEEP times of difficulty.

I'm like you - I take sleep apnea seriously and wanted to succeed. I did. It wasn't easy. Thank goodness for this forum or my CPAP machine would probably be at the bottom of our pond by now. I am now a proud hosehead, but I don't have to be happy about it.

I have no words of wisdom, but I wish you perseverance and time this weekend to take a nap or two.

Lisa (hosehead since 3-16-09)

CharlesVer wrote:If you think I have made no effort, then you didn't read the post above, or I didn't express myself well.

I have not only made an effort. I have invested money, time, and literally, tortured myself.

I value the quality of a healthy life. If I didn't, I wouldn't have put myself through the pain I've already endured, and I expect to endure.

And if my treatment fails, I hope that it does not, and will make every effort I can to make my treatment work, but if my treatment fails, it will be my treatment that failed me, not me that failed my treatment. A human being can only endure so much torture.

This isn't about my attitude. I'm doing all I can. I'm taking all I can endure.

Peace.

Perhaps you misunderstood me?

You seem to be attempting to give yourself an out for failure so that when the time comes it will be easy for you to quit.

I'm not saying that you are a failure. I'm saying that your attitude will make the difference between perseverance and quiting. By placing a high value in the quality of life, your attitude for quiting diminishes greatly. Don't quit! ... and don't give youself any reasons for quiting!!

Best wishes and best of luck.

I wasn't chatting with you, but I have seen several times where message board people were a tough audience. I normally don't see people doing this to be mean or without thinking. Nearly always they are trying to help. Getting used to cpap is not easy. Many of us have experienced the same or similar issues. Does anyone sleep through the night early on? Maybe a few lucky souls. My first mask took skin off my nose. I would have felt hopeless without the knowledge I had acquired here. Luckily, I also had read a bunch of posts where "tough love" was given, so I called the DME and got a new mask (of course with a few days of makeshift accomodations so I could keep the stupid mask on). I am into my ninth week on cpap: I am on my third Dr. prescribed pressure, have shown DME techs how to set my machine, own six masks (thank goodness for the Swift LT), have had EPR on every imaginable setting, regularly stick gel up my nose, my fiance thinks I buy cpap stuff as toys, and still have bad days - and I am a lucky one who had a relatively smooth transition. It only took a couple/three weeks to sleep through the night.

Somewhere I started to notice that less sleep on cpap (even with the adjustment issues) was better than much sleep without. Sleeping without the cpap is considered such a no-no because it harms SA patients. It doesn't just keep you from making the adjustment more quickly, it means less oxygen to your brain.

I now feel very lucky to have been diagnosed and put on treatment. And maybe even luckier to have found this site, so that the treatment wasn't a big waste of time in money like it has been for some I know (altough one has been inspired to get back on the hose, after I passed on knowledge gained here). I would encourage you to hang in and keep working at it, and to take what is said here to heart, even if some of it his hard to hear. (Will your wife read some threads to understand your plight?)

Anyway, good luck.

I'll agree that it is probably about attitude. Now, I'm going to hijack this thread for a few sentences. I have a life-threatening medical condition for which I take medication daily. This medication has side effects that are also unpleasant and often have to be treated as separate medical conditions themselves. I have a choice, though. I can not take this medication and die a very certain and likely slow (maybe 12-18 months of being very sick, based on my past history) death or take these meds, live life the best I can, and find something to enjoy every day. Others in my situation often are resentful that they have to take pills to stay alive. They complain about very real side effects. What's the difference between how they feel and how I feel about these meds? One word - attitude.

I am sympathetic to your problems with CPAP and definitely think there are some adjustments to be made, perhaps in the machine's settings, type of machine, mask, and attitude. I'm fortunate that I can put just about anything on my face and sleep. I can sleep standing up outside in broad daylight given the chance. One thing I tell myself about many things in life, such as my medical issues, being hospitalized because of them, etc is that I'm not all that special or unique. Others have been on the same bumpy road I'm on. Some get tired of the ride, get off, and are no longer able to travel any roads (ie die). Some keep on, knowing that the bumps are just bumps, not obstacles or road blocks. I fall into the second group; to me, there's really no choice. Make the changes you need to make CPAP work for you.

raylo wrote: My first mask took skin off my nose.

that is nuts! I feel like I am on the brink of that now....
I an ot going to jack up the guys thread, but when you have that much
discomfort what mask do you use until that area heals?
I posted up above, and I am waiting for a callback from the place now...
I took the mask off about 2 am (8 hours ago) and it still feels like
someone punched me between the eyes. I have no doubt if I keep wearing
the mask I have now I will be losing skin too

Your equating cpap treatment with waterboarding and the torture the military has used on terrorist would be laughable if it wasn't sad.. You need to get a grip on reality or your chances of success are minimum.Your feeling of torture might be real in your mind but in reality it is not. It's like the person with a phobia....an irrational thinking. ... Maybe you need to talk with someone who is trained and can help you with these issues you have created in your mind.

DreamStalker wrote:Perhaps you misunderstood me?

You seem to be attempting to give yourself an out for failure so that when the time comes it will be easy for you to quit.

I'm not saying that you are a failure. I'm saying that your attitude will make the difference between perseverance and quiting. By placing a high value in the quality of life, your attitude for quiting diminishes greatly. Don't quit!

Best wishes and best of luck.

Perhaps you misunderstood me?

I'm not "attempting to give myself an out for failure." I think I was very clear that I'm doing everything in my power to make this work, and I'm trying, with every grain and every fiber in my existence, I'm trying, to make this work.

By suggesting I'm "attempting to give myself an out for failure," you're suggesting the very thing I adamantly say is not true. Let me make this perfectly clear: If the treatment fails, it will not be me who has failed my treatment. It will be my treatment that has failed me.

I have no intent on quitting. I am bound and determined, by whatever means necessary, that my sleep apnea will be treated. Quitting can literally mean my death, and I love life. I have a little daughter who is precious to me. I can imagine her crying, at my death, and I can imagine the possibility of my death, and the cause being that I stopped breathing in my sleep because I have a very serious condition known as sleep apnea.

So, knowing that I have imagined my little daughter's reaction to my possible death, I hope you can recognize that I take my treatment very, very seriously, and that I have no intentions of "giving myself an out... for failure?"

"For failure"? I'm sorry, but I must repeat: Such a failure, should it happen, and I certainly hope it does not happen, will not be my failure, but the failure of my treatment. So an "out" is not something I need. I'm going to say this, and yes, this is my anger coming out, but it is anger at my treatment and not you, so please don't take this personally, but it seems to me that that it is not me who is looking for an out for my failure, but you who is looking for an out for the CPAP machine, to say that this is the iconic treatment that doesn't fail people, but it's people who fail the treatment.

I repeat: If the treatment fails, it's the treatment that failed, not me that failed. I'm just the one that suffers the results of the treatment's failure.

I'm giving it my best effort, and I will put that mask back on, and I'll do it again, and again. I listed possible alternatives, and have considered them with great care. I'm open to other suggestions and alternatives.

But I'm not a failure if I can't endure perpetual waterboarding.

And if you don't see it as perpetual waterboarding, we can chalk that up to everyone being different. Some people put on the mask, sleep 8 hours and have no problem.

Have those who criticize my attitude considered that, may be, just may be, you really don't know what I'm going through, and may be, just may be, if some people have no suffering at all, and you suffered to a certain extent, that there might be a third group of people who suffered unbearably, more than you have, not because of any attitude problem that needs adjusting and not because of any psychological endurance problem, but because this treatment, for this person, was the equivalent of giving someone allergic to peanuts a peanut butter sandwich or the equivalent, of waterboarding, so the person who cracks really can't be blamed when even the strongest person will crack enduring that much?

Again, I'm continuing to do my very best, and I will endure more torture, and I want more than anything to come here and say, "Well, it's day 14, and I just had the best night of sleep of my whole life with my CPAP machine!"

But if that doesn't happen, it won't be because of some moral or psychological failure on my part. It will be a failure of the treatment.

And I will go to great lengths to maintain my health -- I will have serious, extremely painful, risky, invasive and irreversible surgery if necessary, and if there are no other options, and if the risk of the surgery is seen as less than the risk of the apnea.

But I'm no more to blame than a person with any illness is to blame, and my attitude is not a causative for my condition.

Charlie

track wrote:Your equating cpap treatment with waterboarding and the torture the military has used on terrorist would be laughable if it wasn't sad.. You need to get a grip on reality or your chances of success are minimum.Your feeling of torture might be real in your mind but in reality it is not. It's like the person with a phobia....an irrational thinking. ... Maybe you need to talk with someone who is trained and can help you with these issues you have created in your mind.

You aren't in my body, and you have not experienced what I have experienced.

Therefore, you have no idea what you are talking about.

And if you think sleep deprivation is not a military torture, I suggest you research its actual utilization.

The irony is that you may be partially right because you are completely wrong: Suffering from torture can and often does result in phobias and irrational thinking, and I believe I've suffered some of those as a direct result of the continued failure of my CPAP treatment. I'd be not at all surprised if I started suffering hallucinations, considering the myraid physical effects I've felt since I began treatment, the pain in my head and lungs and throat, the feeling that my brain is swimming. But that continued failure is not something I've created in my mind. It's something I've experienced.

Thanks for your compassion, though! Have a great day.

Charles, I understand the frustration you are feeling. Please try to remember that some of the folks here have been through the same thing as you. I remember days where aerophagia had me virtually unable to sit down comfortably. Many of us, myself included, have had water go up our noses while sleeping (literally) as part of the learning/adjustment curve. Some people on here have had worse. Sleep deprivation is a form of torture, cpap is a treatment for it that can sometimes throw your whole balance of life off during the adjustment phase. This board is full of people with horror stories about learning to cope with some of the issues that arise during cpap. It ain't easy and everyone here knows it.

Charlie,

When I was diagnosed, I think I was much like you. The machine was noisy. The mask actually hurt my face. When I complained about the mask I was told, "You'll get used to it."

huh? Here.... let me put this C-clamp on your nose and see if YOU get used to it, a$$hat...

There were SO many things to "get used to" that I quit. Screw this. Nobody can POSSIBLY get used to this. I'd rather just die and get it over with. Every once in a while I'd try again because my wife was complaining about my snoring. No way. This can't be right. And teh DME.... holy cow they're getting $85 a month from the insurance PLUS they're charging me a co-pay. I called them and told them they could either come and get this piece of crap or they could stop the copay. Nobody EVER checked compliance. They continued to bill the insurance company, but they stopped billing me the copay.

Time marched on

Within a few months I developed an irregular heartbeat. It wasn't going to kill me soon but it was annoying as hell and required attention. Then it was affecting my WIFE's sleep.... because now she was dozing with her hand on my chest so she could shake me and get me breathing again. Affecting her sleep and her health, and SHE wasn't the one who was sick!

Then I found this message board. I was no longer alone. LOTS of people talking about the same kinds of experience I was having. I had to do something. I was getting my wish about just dying and getting it over with.... but it was happening so slowly....

From this message board I learned about masks, machines, data capability, machine settings, and so much more. I BOUGHT stuff. I really didn't want to die like this. Being oxygen deprived puts a tremendous strain on your heart. I found a mask that actually worked. That was first. The mask is the key. It's almost a mantra here. You can have the best machine, the most bells and whistles, the most intricate and complete data, but if that mask sucks.... you're not going to use it.

Then I got a better machine where I could read my data. I basically told my insurance company and DME to go pi$$ up a rope for all the caring and help I had received.

Lo and behold I started actually sleeping with this SQUID on my face! Once I had that sleeping thing down.... holy cow I was feeling so much better in the morning and during the day and.... hey.... the irregular heartbeat seems to have gone away! Now that I knew how a mask SHOULD work, I tried a few others. Some worked great. Some sucked. But they don't hurt my face.... unless of course I've gotten used to it (not).

My story isn't unique.
And neither, my friend, is yours.

When we say "we understand" we mean it. Oh and you have explained yourself quite well. I am reliving my early time on CPAP through your posts. And remembering how hard it was for me then.

Perhaps saying, "It's all about your attitude" is simplifying it too much for you to absorb at this point.

But maybe reading MY story will at least give you some sense that we DO understand... and we're all here to help in whatever way we can.

Your choice.... live.... or die.

THAT is the simplest truth here. Like it or not. Believe it or not.

but bank on it