I hate CPAP.

DynoDad · Post by **DynoDad** » Sun Apr 15, 2012 3:21 pm

Wow, I seem to have touched a nerve here! I just thought it would be interesting to be open about how I feel about CPAP, and see whether it was normal to feel like this, didn't expect such an outpouring of vitriol for daring to speak the truth.

As to the super-helpful people (particularly nanwilson, chunkyfrog & goofproof) who called me a 'crybaby' and said 'man-up' - thanks awfully for your support, it means so much to know that you're there for me. Seriously, I'm touched. That's what we Brits call 'sarcasm' by the way, in case y'all are not sure I bet you liked pulling the wings off flies when you were kids.

Captain Patronising I'm all for staying positive, but there's a difference between optimism and bullshit. I don't need to be told why I'm using CPAP, I know perfectly well why I strap the god-awful contraption to my face every night, and I explained all that in my post.

I've no idea where the idea that I'm 22 came from, I have children that old! But it's true that I'm not a wheezy old coffin-dodger who's grateful that each breath isn't my last.

Thanks for the various helpful tips, there's a few things there I hadn't tried yet.

Serious point:

If more people were honest about the negatives of CPAP I wouldn't have had to write what I did, as it is all this relentlessly optimistic "it's all great here" stuff actually leaves some people thinking "How come it's so great for them and not for me?" That's hardly being supportive, which is surely the point of a community like this. Endlessly hearing about how everything is fantabulous and how you are sung to sleep by a choir of angels every night, when your own experience is the opposite is quite soul destroying. It seems that my version of reality is actually shared by quite a few others however, which is reassuring to know that I'm on the right road.

Elle · Post by **Elle** » Sun Apr 15, 2012 3:28 pm

I have no idea where I got that you were young. I must have been reading two threads at once. In my defense I had on an old mask (discovered my Aloha pillows still smelled of baby shampoo at bedtime so grabbed an old one) and had a really crappy sleep.

See how stupid poor therapy makes one?

Maxie · Post by **Maxie** » Sun Apr 15, 2012 3:37 pm

You do have a point. I could have those feelings but I won't let myself go there. I just absolutely will not let those feelings in because I know I might be stupid enough to do something stupid. So I may not be cheerful about the whole CPAP experience, I deal with it the best way I can. I do spend time making sure that I have a mask that is comfortable for sleep, comfortable pillow, padded straps and that everything that I am able to control is working as well as absolutely possible!

BlackSpinner · Post by **BlackSpinner** » Sun Apr 15, 2012 3:53 pm

DynoDad wrote:
If more people were honest about the negatives of CPAP I wouldn't have had to write what I did, as it is all this relentlessly optimistic "it's all great here" stuff actually leaves some people thinking "How come it's so great for them and not for me?" That's hardly being supportive, which is surely the point of a community like this. Endlessly hearing about how everything is fantabulous and how you are sung to sleep by a choir of angels every night, when your own experience is the opposite is quite soul destroying. It seems that my version of reality is actually shared by quite a few others however, which is reassuring to know that I'm on the right road.

You know something, there are almost no negatives. I put that mask on and woke up happy the first morning. Compared to migraine medication, menopause and child birth it is a breeze.

Yeah wow it wasn't instant relief for you, you expect drive thru medicine maybe? When you broke a leg you expected the cast to provide you with the ability to run a marathon the next day?

What should be reassuring for you is that everyone who thinks positively and keeps working at it eventually gets the benefits.

Yes you vented and now deal with it. You would probably have more patience fixing your car then your health.

Shirokuma · Post by **Shirokuma** » Sun Apr 15, 2012 3:59 pm

I look at it as an opportunity to control my breathing air, using filters and humidity control. I once was waking up to a bloody nose, with no means to keep a high humidity in the room.

carbonman · Post by **carbonman** » Sun Apr 15, 2012 4:16 pm

carbonman wrote:I don't want to live in a fog....
I don't want to wear a mask...
I don't want to choke in the night...
I don't want to have to rely on numbers and graphs.....
I don't want to wake up to rain in my bed.....
I don't want to glue and strap my mouth shut....
I don't want to wear panty hose on my head....
I don't want to forget what I just said....
I don't want to be plastyed or have splints in my head...
I don't want to rely on a machine to be able to think.....
I don't want to go on a journey every night to sleep....
I don't want to wake up dead....

I want to be a kitty and sleep in the sink.

portiemom · Post by **portiemom** » Sun Apr 15, 2012 4:22 pm

I'm jealous that you are getting the cpap relief that has taken me 7 years to get, and I still struggle. Sometimes, tough love works, the folks that gave you a hard time here, ARE THE FIRST TO HELP YOU WITH ALL YOUR CPAP ISSUES! They are caring, supportive, and willing to share their wealth of knowledge with you. They will download, interpret and help tweak treatment, even give you a phone call or give you there telephone number. But they will NOT LET YOU SINK IN TO A SELF PITY MODE, or GIVE UP ON A TREATMENT THAT WILL SAVE YOUR LIFE! I know because they have held my hand many a time, and walked me through this life saving process and continue to do so, even when I'm whining about not getting the mask I want. So, that said, stick with it, hate it if you must but remember, PUSHING UP DAISIES WILL BE A LOT HARDER...on YOUR LOVED ONES! Best of luck.
P.S, Ever hear the story of the man with no shoes? He felt pretty bad for himself, until he met the man with NO LEGS.

xenablue · Post by **xenablue** » Sun Apr 15, 2012 4:34 pm

DynoDad - please understand that compared to Americans, the British are a pretty touchy lot - I'm Australian, so I 'get it' as I've been living in the US for 15yrs.

I've found the people here are incredibly compassionate, helpful and knowledgeable, but if you come here with a long laundry list of whining complaints - you're leaving yourself wide open for a good slap!

Seriously! Do you think ANYONE enjoys XPAP??? I don't know of one - BUT the ones I do know love what XPAP does for their quality of life. XPAP is definitely not a turn-on at bedtime among many other negatives.

What makes XPAP very tolerable is a positive attitude - being determined to make it work with the most comfort and least inconvenience possible. If this means a few months of experimentation with masks, liners, hose set-ups etc. - then that's what you need to do. Just spend some time reading here to see what amazing solutions people have come up with to make this work.

If you need specific help with fixing some of the problems, please ask - you won't be short on advice and suggestions. You've had your venting session, now move on and make XPAP work for you.

Oh, and I got the British sarcasm loud and clear.

Cheers,
xena

lcook7281 · Post by **lcook7281** » Sun Apr 15, 2012 4:50 pm

At work several of us use xpap. Because of discussions at work one will probably be returning to therapy in the very near future.

My boss was recently put on bipap, and his wife is at his side. In the 20 years I have known them they are so close to each other. One is literally nearly lost without the other. Every night before bed she makes sure he has his mask on before they go to sleep. If he has fallen asleep watching tv or something she has everything set up and gently wakes him enough to get the mask on. She nearly lost him earlier this year and knows the benefit of the machine. She loves the machine because she loves her husband.

the_nap_ster · Post by **the_nap_ster** » Sun Apr 15, 2012 5:00 pm

Hi DynoDad,

As a new XPAP user, I hear you. This is a party that no one wants to join, at least when the alternative is perfect health. I'm not going to tell you not to feel the way you feel, and I'm not going to deny that most people who use these devices have moments (or hours/weeks/months/years) of annoyance. I'm still waiting for the whole "feeling awake during the day" part to kick in, which makes me even more sympathetic in some respects.

I *am* going to tell you what works for me. I had to reframe how I approached this treatment. If I offered you a machine that would make you better/stronger/smarter/healthier every day, wouldn't you hook into it at night? Wouldn't most people? I'm lucky enough to actually own such a machine, and all my friends should be jealous. I work out, eat well, take fish oil... do what I can to keep myself healthy and happy. And now I have another tool to add to my toolkit. I find that sort of awesome.

And my machine is pink, which I find hilarious.

My partner is an engineer and numbers geek, so he is approaching it like an engineer: how can he jigger with things to get his numbers as great as possible? Yes, he finds it annoying -- worse than I find it, to be honest. But approaching it like a puzzle to solve gives him satisfaction, so that's how he'll work with it.

And his machine is also pink, which horrifies the DME/his doctors, which HE finds hilarious.

There might be a way to approach the annoyances that excites you, or at least mitigates the downsides. All of us have things we enjoy naturally. I think there is something to be said for turning the act of taking care of ourselves into something we enjoy, by whatever means works.

Best wishes to you!

ameriken · Post by **ameriken** » Sun Apr 15, 2012 5:02 pm

DynoDad wrote:Am I the only one?

No, no one likes the feeling of a mask being plastered to your face while a machine whines as it force air at pressure down your throat.

But the thought of having a resulting stroke and then being confined to a wheel chair unable to do anything while the left side of my face permanently droops is what keeps my attitude in check.

Guest · Post by **Guest** » Sun Apr 15, 2012 5:18 pm

DynoDad wrote:Wow, I seem to have touched a nerve here! I just thought it would be interesting to be open about how I feel about CPAP, and see whether it was normal to feel like this, didn't expect such an outpouring of vitriol for daring to speak the truth.

As to the super-helpful people (particularly nanwilson, chunkyfrog & goofproof) who called me a 'crybaby' and said 'man-up' - thanks awfully for your support, it means so much to know that you're there for me. Seriously, I'm touched. That's what we Brits call 'sarcasm' by the way, in case y'all are not sure I bet you liked pulling the wings off flies when you were kids.

Captain Patronising I'm all for staying positive, but there's a difference between optimism and bullshit. I don't need to be told why I'm using CPAP, I know perfectly well why I strap the god-awful contraption to my face every night, and I explained all that in my post.

I've no idea where the idea that I'm 22 came from, I have children that old! But it's true that I'm not a wheezy old coffin-dodger who's grateful that each breath isn't my last.

Thanks for the various helpful tips, there's a few things there I hadn't tried yet.

Serious point:

If more people were honest about the negatives of CPAP I wouldn't have had to write what I did, as it is all this relentlessly optimistic "it's all great here" stuff actually leaves some people thinking "How come it's so great for them and not for me?" That's hardly being supportive, which is surely the point of a community like this. Endlessly hearing about how everything is fantabulous and how you are sung to sleep by a choir of angels every night, when your own experience is the opposite is quite soul destroying. It seems that my version of reality is actually shared by quite a few others however, which is reassuring to know that I'm on the right road.

Using the word "hate" in conjunction to this therapy......in a forum full of people who are desperately trying to HELP people get their therapy working and overcome some of the obstacles is similar to waving a black piece of cloth in front of a swarm of Africanized honey bees (aka "killer bees"). In other words, you got what you asked for......whether it's the response you thought you'd get, or not.
Apparently you didn't do a search on the forum for the word "hate" before making your first post. It's typically been the response to others who did the same thing.

Maybe you really wouldn't "hate" the therapy that much if you had a fully-data-capable machine and the software to tell you how it's actually working (assuming the machine in your profile is the one you actually have).

On the other hand, some people just go through life with a chip on their shoulder and try to find anything they can to bitch about.

You've only been on this therapy for about five months? If you take this therapy one night at a time, pretty soon the years pass by pretty quickly.

Do I wish I DIDN'T have to strap the mask on every night????? You betcha! But, I don't want to revert back to where things were before I started. The morning of the completion of my first night on therapy I said under my breath..... "One night down, the rest of my life to go."

This is a helluva lot easier than many other health challenges that many others have to deal with.
"I cried because I had no shoes until I met a man who had no feet."

Everything in life is relative and none of us are getting out alive. Try to improve your attitude.

Oh, about your statement about people being honest about the negatives of CPAP........ BULLSHIT!!!

By the way......I HATE "whiners". Was that famous Brit, Winston Churchill a whiner? The "Iron Lady" Margaret Thatcher?

.

nanwilson · Post by **nanwilson** » Sun Apr 15, 2012 6:12 pm

Oh, I get the Brit sarcasm...I was born there. I don't like this therapy either, but you don't hear me whining about it. If this is what I have to do to be able to see my beautiful granddaughter graduate from high school, then go on to university and get her degree...them I'm for it. Whatever it takes, I'm in, I've been at it for 2 years now, still don't care for it, but its what I HAVE to do! So, stop whining and get on with it, ask any question you like concerning your therapy, we are here to help...if you want to whine..then go someplace else. If you don't like my tone or my sarcasm, take it anyway, its seems to be what you need. Good luck and good health.

Madalot · Post by **Madalot** » Sun Apr 15, 2012 6:14 pm

DynoDad --

I hear you and will not tell you you shouldn't feel that way. I get it and understand it. I really do. That said, how about a bit of a reality/perspective check?

I hate everything you do. Really hate those things. But I also hate:

I failed both cpap and bipap and have to use a high-end (high cost) ventilator that I will never own, plus an oxygen concentrator that sounds like a fricking airplane in my bedroom.

The fact that am now almost totally wheelchair bound because of a rare and currently undiagonosed Muscular Dystrophy and can no longer do normal things like fix meals, get my own meals/drinks, or walk back and forth across my house.

My eye muscles are so compromised that I rarely drive and can only read with Kindles (but I'm so happy that I can read with them that I call this a wash now).

I can no longer count on my bladder muscles to hold long enough for me to maneuver myself to the bathroom and I have soiled myself several times.

I had to break down an buy a handicapped commode because I couldn't get off of a regular one and I really hate how much it cost my husband to do it.

I can't hold glasses securely enough and must use a straw with all meals.

I can't be a normal mother to my kids and do "normal" things moms do.

My hate list goes on and on, but I hope I've made my point. Despite all these things that I really hate, I am okay and I have a lot to be happy about and thankful for. And I am.

And I also know there are a lot of people out there that deal with far worse than I do, so I am thankful it's not any worse than it is.

Life is too short to waste energy hating this stuff. It is what it is and it's easier to accept it and not waste too much time hating it.

BigTex · Post by **BigTex** » Sun Apr 15, 2012 7:44 pm

I get it...

I hate the CPAP too. Stupid mask.
Damn machine, I hate the hose.

But so what?

I love my wife and I love my son.
I want to be a better husband and a better father.
I tell myself that every day. Its always room for improvement.
Lack of sleep makes me feel bad.
It makes me feel tired and it sure makes me more grumpy.

When my son ask if we can go and ride bikes I want to tell him yes.
I want to have the energy to do so.

When my wife has a bad day at work and needs to vent about it.
I want to have the energy to do so.

The cpap is a small prize to pay for the things I love.

In about 6 weeks I had one night I did not wake up after I got the damn machine.
I am going to win the battle and I am going to tame the mask and machine.
I will conquer.

My family is worth it and I am worth it...

I hate CPAP.

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Mask

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