Am I the only one who feels this way?

[mrcrayola]

I've been using my CPAP almost every night since Nov. 12th. To be honest, I am still having difficulty accepting the idea that I'll be doing this the rest of my life. Part of that is from the frustration of constant variations in AHIs. I have yet to achieve an average below 5, and have occasionally topped 20. The other part of it has to do with the sense that it is completely unnatural, i.e., more like engaging in a nightly wrestling match with mask and tube, with the added irritant of air being blown in my face or feeling like I'm being inflated like a balloon.

I used to really enjoy going to bed at night, even knowing that I have moderate sleep apnea. Now, going to bed is no longer a refuge from the daily stresses of life and my career but, rather, an extension of it.

Anyone else feel this way? I'm particularly interested in feedback from those of you who have been walking this path for more than a few months. If you have, or did, feel this way, how did you get beyond it?

Thx,

MC

[Rainmom17]

I feel your frustration. I'm 5 months in and can't really say I feel better. I'm getting better AHI than what you've said, but as of yet it isn't making a difference, at least that I can feel. But, there are a couple of positives for me that make me feel fine about wearing the mask every night:
1) over time, I've learned to sleep through the night without even really being aware of the mask, machine, and blowing air. They are mostly tuned out at this point
2) I can't breathe very well through my nose without the mask at night, but using the mask really opens up my nasal passages, and 3) when I had a cold, it resolved very quickly and was merely a minor nuisance, possibly because of cpap.

I'm hoping to feel the difference at some point and wish the same for you.

[jnk...]

. . . I am still having difficulty accepting the idea that I'll be doing this the rest of my life. . . .

I felt that way when starting out. I assume that feeling is universal with this or any other lifetime therapy, no matter how hard or easy or degree of benefit.

. . . frustration of constant variations in AHIs. I have yet to achieve an average below 5, and have occasionally topped 20. . . .

Variation may, or may not, be something to accept. For some, that is to be accepted even when therapy is absolutely completely optimized for them. For others, time or changes in therapy can change those numbers. You want to get the numbers as low as you can but not have stress from the numbers if they don't lower or balance out. Remember that the numbers are given to you for TRENDING purposes, so the average over long periods of time is the prime thing, not one night of high AHI. Ask for suggestions, post charts, etc. for hints for lower AHI, but high AHI now and then is by no means a failure, even if some are able to get their AHI very low. When I started out, I had very high AHI reported to me from my machine, but that machine was known for giving high hypopnea numbers in order to be especially helpful with trending. Frankly, I miss that. My new machine gives me such low numbers that I consider them useless for trending purposes.

. . . the sense that it is completely unnatural . . .

I once felt that way. But then I realized that compared to surgery and drugs, a little air pressure is the most natural thing in the world.

. . . nightly wrestling match with mask and tube . . .

I found that sensation to go away in time for me. I now embrace the entire experience and feel deep satisfaction from having found ways to manage the mask and the tube in my own ways.

. . . I used to really enjoy going to bed at night, even knowing that I have moderate sleep apnea. Now, going to bed is no longer a refuge from the daily stresses of life and my career but, rather, an extension of it. . . .

Understandable. At first. But now I am more irritated with brushing and flossing than I am with PAP therapy. Brushing and flossing have to happen while I'm awake. PAP is automatic and I'm asleep through it.

Now I look forward to strapping on the mask. It makes me feel healthy. I feel proud of myself for finding a way to do it faithfully and successfully. It is my secret weapon for life that keeps me sharper, more focused, calmer, more content, and energized. It has brought aspects of life back to me that before PAP I was slowly losing. It makes me a better husband to my wife, a better friend to my close friends, associates, and acquaintances. It is an act that shows respect for the lives of the other drivers on the road the next day when I'm behind the wheel. As I strap up, I think about how much better this act will make tomorrow, the next day, and the day after that. I consider it a thing of beauty and peace that makes me thankful and appreciative for the discoverers who figured out just how life-saving positive pressure can be for people like me. I don't feel the least bit silly mentioning the little mechanical wonder on my nightstand in my prayers. (Just don't tell anyone that; it can sound a little over-the-top to some people. Not to me.)

Maybe you won't fall in love with PAP with the way I have. But give that little box of air a chance. You may find over time that you have bonded with it to the point that you love it more than your car/tv/phone combined.

[Wulfman...]

I've been using my CPAP almost every night since Nov. 12th. To be honest, I am still having difficulty accepting the idea that I'll be doing this the rest of my life. Part of that is from the frustration of constant variations in AHIs. I have yet to achieve an average below 5, and have occasionally topped 20. The other part of it has to do with the sense that it is completely unnatural, i.e., more like engaging in a nightly wrestling match with mask and tube, with the added irritant of air being blown in my face or feeling like I'm being inflated like a balloon.

I used to really enjoy going to bed at night, even knowing that I have moderate sleep apnea. Now, going to bed is no longer a refuge from the daily stresses of life and my career but, rather, an extension of it.

Anyone else feel this way? I'm particularly interested in feedback from those of you who have been walking this path for more than a few months. If you have, or did, feel this way, how did you get beyond it?

Thx,

MC

Not me!
I was so thankful when I found out what was wrong with me and that this therapy was going to be sooooo easy.
So, I took it one night at a time and soon a whole lot of time had passed.
Get your mind in the right frame and accept it. Learn as much as you can about it. Don't have the "Woe is me!" attitude.
There are MANY more people out there dealing with more serious medical/physical issues who don't give up or take a defeatist attitude.
Take control of YOUR therapy. NOBODY will care as much about it as YOU will.

It's "baby steps".


Den

.

[chunkyfrog]

To some degree, I have been doing the nightly mask dance for 8 years.
The better the fit between the mask and face, the easier the dance becomes.
Put on something restful, and dance away.

[SewTired]

Of late, I've been wrangling the hose as well. I think it becomes an issue because you are already not sleeping. In my case, I can identify my nightly disruption (pain from bursitis). I'm thinking of getting a hose buddy to reduce some of the wrangling.

[jnk...]

. . . to reduce some of the wrangling.

This helps me when I travel:

https://www.amazon.com/North-American-H ... B0034CHMRU

It looks like this when used:



It assembles and disassembles in seconds, and it fits in my case.

[Janknitz]

I absolutely felt that way at first. When you look down a long road called "forever", it seems depressing.

I made it my goal to be able to put on the mask and go to sleep with no big deal, just like I put on my p.j.'s at night. It took a LONG time to get there, but I eventually made it. Now it's no big deal.

One thing that really helped me is to stop thinking about "the rest of my life". All I could think about was that night. That hour, that minute. That really helped. "I only have to put this mask on right now tonight". Eventually, a lot of "tonights" add up. I let the tomorrows and forevers take care of themselves.

Now I cannot imagine going to sleep without it. When you get your settings and mask dialed in for good control of your apneas, you will have a morning when you wake up peaceful, calm, comfortable in the world. THAT's what you are aiming for. I had apnea so bad for so long before CPAP I didn't even remember waking up like that. When I finally got a morning like that, the last time I really remembered feeling that way was waking up in my crib when I was a toddler (and truthfully that probably is the last time I slept without apnea because of structural issues in my airway). And our little secret is it feels GREAT to wake up feeling that way. So I wanted more. I worked very hard to dial in my CPAP settings and my mask comfort until I could achieve that morning peacefulness most of the time. Now I wake up nearly every morning feeling that way. I'm reluctant to get out of bed, and I like to lie there with my mask on, enjoying to cool, filtered air until I absolutely MUST get up. It took me a long time to get to that point, but so worth it.

How can we help you with the issues you are having with therapy? I don't read every post anymore so I'm not sure if you've asked for help or posted your data. There are things we can usually help with--you just have to ask.

[TalonNYC]

I've been where you are, and it does get better. I know that doesn't mean a ton, but after 5 years of CPAP therapy I can tell you it does make a HUGE difference, and it's worth getting used to the mask and hose for the benefits it will bring into your life.

But that's in the future. You're struggling now. So here's something that might help short term.

There's a great book, written by someone from these forums. It's called "This Book Blows - A CPAP Bedside Companion" by Mike Moran. While it can be corny, there are some absolute laugh-out-loud moments in his stories that will help you through this time. The book is designed to be read as you're getting used to CPAP therapy, and takes a humorous approach to getting used to living with CPAP. Grab a copy (perhaps from a Library, and it's available in paperback on Amazon too).

Also, if you are into gadgets or tech, focus on that. Focus on how you're going to fiddle with the settings and controls and gear just like any other tech project. If you're into building things, look toward how you can build ways to keep the hose off your body - some folks here have done amazing DIY projects to do that, and it can help take your mind off the worries you're having right now. If you're into crafts you can make pads and other things that will make the gear more comfortable - some folks on this board have even made that into a business. In short, find something that can integrate the gear into your life in a positive way today that doesn't focus on apnea.

Then, don't think about the rest of your life right now. That comes later - after you feel the difference in your life. After you feel how it feels to wake up after a full night's sleep without apnea waking you up every 5 minutes. After you begin to live in a way you never knew you were missing, because apnea sneaks up on us and makes it feel like what we're feeling is normal. Then you can look at how you will use CPAP long-term.

And please, keep reaching out. We've all been through this. Every one of us has felt exactly this way. You are not alone, and you have a great community here who will help you every step of the way.

[Jimmy D]

No, you are not the only one that feels that way. It takes a long time to accept and adjust to CPAP. You are making a major change in your life. It takes time
but soon it will become a new habit and second nature. You will feel much better too - and very soon. Hang in there and have a great New Year.

[Jimmy D]

Oops, I forgot to mention that you really should ignore (starting tonight) your AHI readings if you are feeling refreshed in the morning. I've been doing CPAP going on seven years and stopped caring about my AHI readings about, ahh, umm, oh yes - seven years ago. As long as you are getting a good nights sleep and feeling good in the morning you are doing good.

[Snorzz]

Had sleep study, waiting score. I dread going to bed each night; wake up 6-10 times/nite, constant threshing, roaming all over the house on each wakening. I'm scared to death will be told I have no sleep apnea, already told it is not my prostate. It does worry me that you all have trouble adjusting to CPAP, and I'm sure I will too, but if I could get more than 3=4 hrs of sleep(restless sleep), I'd strap a cat to my face each night.

[TedVPAP]

I've been using my CPAP almost every night since Nov. 12th. To be honest, I am still having difficulty accepting the idea that I'll be doing this the rest of my life. Part of that is from the frustration of constant variations in AHIs. I have yet to achieve an average below 5, and have occasionally topped 20. The other part of it has to do with the sense that it is completely unnatural, i.e., more like engaging in a nightly wrestling match with mask and tube, with the added irritant of air being blown in my face or feeling like I'm being inflated like a balloon.

I used to really enjoy going to bed at night, even knowing that I have moderate sleep apnea. Now, going to bed is no longer a refuge from the daily stresses of life and my career but, rather, an extension of it.

Anyone else feel this way? I'm particularly interested in feedback from those of you who have been walking this path for more than a few months. If you have, or did, feel this way, how did you get beyond it?

Thx,

MC

Your attitude would likely improve if your therapy improved. Is there a thread which discusses this?
I had no problem accepting the "lifetime sentence" once I felt the benefit of effective treatment.
Try not to worry about the future, focus on the now - one day at a time. The future often changes.

[mrcrayola]

@Snorzz re your cat comment - Another part of my frustration was the fact that I didn't feel that I wasn't sleeping well prior to my sleep test and so on. My cardiologist was the one who pushed me to move forward, although I suspect the margins he reaps for home sleep studies are huge. Hey, it's a business, I get it. Finding and sustaining new revenue streams is essential. I was bummed, however, when BlueChoice essentially dismissed the entire suite of PAP and components. Then again, they're a business, too. As I often like to say, "sigh..."

But thanks much for your insightful comments and encouragement. I'm on the verge of walking away from a 27 year "relationship" with my employer and hanging out a shingle as a consultant. I anticipate continuing to travel to Africa, Latin America and Southeast Asia on business trips. I cannot imagine hauling my Dreamstation with me, so I will soon be exploring some of the travel-designed PAPs, but that's another topic altogether.

TalonNYC, I am a tinkerer and started doing that on my third day after finding a Youtube video that showed me how to crack the "code." Alas, I essentially went back to the prescript settings since my tinkering wasn't leading to better results. Then Pugsy took me under her wing with wisdom and kindness, and my numbers are improving. I'm a numbers kind of guy. I love metrics, so it'll be difficult to ignore AHIs, OAs, RERAs, etc., altogether, but I can get into trends as well. If I only slept for three hours a night, my AHIs would be super, but alas, it's the inevitable second shift that nails me. Also interesting to discover that most of my "action" occurs during REM. Kind of makes me wonder whether depleted oxygen triggers my dreams rather than the other way around. Possibly worth exploring.

Anyway, thanks again. This is a great community and a cool place to hang. Hopefully I can get past this and graduate to "counselor/cheerleader" myself.

Happy New Year!

mc

[chunkyfrog]

At this point, I feel weird if I lie down without my "sleep gear".