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Since I was diagnosed last month, everybody and his brother has come out of the woodwork as a cpap user and I quickly realized that I am not *alone*~~not even in my own extended family. My aunt, my nephew, my niece's husband, my daughter's father in law......all on cpap. My son is next but he's procrastinating on making his sleep test appointment.

I was thrilled to find out I had sleep apnea. For years doctors never believed me when I said I couldn't sleep and that I woke up tired everyday. They doubted I had sleep apnea because they said it doesn't happen to skinny women. Whatever!

I have felt like cr*p for years, and so finally, after spending a small fortune on medical tests trying to figure out why I felt like a zombie all the time, I have an explanation and a treatment plan! So I was quite happy to be told that I have sleep apnea. I'm not saying I *like* it, or that I'm glad I have it, I'm just grateful to finally have an answer to my issues. Yes it's a pain in the arse to clean the mask everyday, not to mention to wear it every night, but things could be worse, you know? So for now I'm not complaining, nor am I asking "why me?"

secret agent girl wrote:Show of hands, please--Who flashed on at least one nightmare image of the Borg after being told you needed cpap treatment? Who resented the thought of being tied down by a machine, and spending time fussing over its accoutrements? Who wanted to stand on a mountaintop and yell "I am not my diagnosis; I am a human being!"

(Raising my hand for all the above!)

It is a process of adjustment, first to the diagnosis and then to the therapy. But I'd rather wear a mask for eight hours a night than die early.

To tell you the truth, I felt great relief when I found out I had sleep apnea. Finally, there was an explanation for so many things. "CPAP would help me feel better?" Sign me up!!! I have had the inevitable challenges to work through, but results for me have been nothing short of amazing. I didn't fully realize how rotten I felt until I started to feel good again -- restful sleep, renewed energy, clear thinking....it's great!

I'll come back later to read other people's stories. Glad you're here, secret agent girl! Welcome to the Sisterhood of Hoseheads!

May you live long and prosper,

DreamOn

I can't tell you how horrified I was at the video I was shown just prior to my sleep study (I was dog tired, but had never considered the problem was sleep apnea for various reasons, and I'd never before heard of CPAP).

I received my equipment immediately prior to a group retreat for which I had planned to share a bedroom with 1-2 others. My story was immediately jumping to the conclusion that I would ruin everyone else's relaxing vacation with my vacuum-cleaner machine. I did end up with private and quite cozy sleeping quarters in the laundry room on a nice air mattress and sleeping bags, no one could hear me outside the room, and we all had a wonderful time.

I had weird things like having to drink cafiene all day long..waking up all night long. I wasn't exhausted but had memory loss and groggyness . Oh and snoring. I love my cpap. I never once worried one bit about it. I worried more about falling to sleep on a plane or embarassed about snoring and gasping while visiting at someones home. I used to get sinus infections and thought I had "allergies". Nope all apnea.

Whew, it's not Alzheimer's! Whew, I knew I wasn't just lazy! Whew, I'm not dying! Whew, there's hope I can get a life again! Oh, but wait, that means wearing this gizmo FOREVER? I can't. I don't think I can. I don't want to. But this ain't living, so I'll try. This is harder than I thought. This is taking longer than I thought. At least I don't have to be afraid to go to sleep any more. This can't be the best it gets. Hey, it's not!!!! YES!!!!!!

It was a long time coming, but one small taste of REAL sleep and getting a glimpse of the light at the end of the tunnel, and there was no stopping me. It was like a drug - would do nearly anything required of me to get that feeling again, and again, and again. Funny how one person's desire is another person's norm. I mean, it's just sleep, but to me it is life.

How did the tone of my self talk change? At first, "Do or die" pretty much summed it up for me. At some point "do and live" held a greater lure. The inconvenience of CPAP - just the price of admission to Dreamland.

Kathy
Over 4 years since my 1st try, 3.5 years into 2nd time around

When they put the mask on me during titration, I slept better than I remembered in the preceding 10 yrs or so(wires & straps & that irritating nose sensor)...whatever it took to feel that good again I was gonna do. They asked me how long I thought I'd slept and I said maybe 3.5 hrs...it was barely over 2 hrs! No challenge was going to deter me because I knew what I needed. I had much misgivings before my sleep study about sleeping hooked up, hosehoodness did not appeal -- then the shazzam awareness of what good sleep was blew away any concerns.

After going thru heart failure, and finding out I needed XPAP to live it was a no brainer, Had I used the XPAP ten years earlier, I might have more heart left to work with now. Jim

DreamOn wrote:

secret agent girl wrote:Show of hands, please--Who flashed on at least one nightmare image of the Borg after being told you needed cpap treatment? Who resented the thought of being tied down by a machine, and spending time fussing over its accoutrements? Who wanted to stand on a mountaintop and yell "I am not my diagnosis; I am a human being!"

(Raising my hand for all the above!)
DreamOn

Not Me! I simply couldn't wait to get that mask on my face when I learned what was causing my Alzheimers-drunken-addle-brained--cranky---body-dying symptoms!! Seriously. I framed the cpap therapy as my life-saver and a blessing. I just never let myself go to the negative places which relatively speaking were so superficial when compared to death....which I believed I was headed for. No drama here. It was just my perspective, and it made cpap a wonderful event. Like carbonman, I find the sound of the cpap and the feel of the air in my mask to be an incredible comfort--and I truly look forward to putting it on every night.

Me either! I remember my sleep doc asking me if I thought I could sleep with a mask on? I said "If I could get a decent night's sleep, I'd wear an elephant on my head!"

After drugs to handle migraines that turned me into a zombie, endless pain relief practice, CPAP therapy was blessedly easily, simple and had no side effects and it WORKED!!!

Posted 7/09 after completing my 3rd TripleByPass bike ride.

Zen of the Mask- Recovery/Rebirth

Zen-direct experiential realizations toward obtaining an awakening.
The practice to discover, through daily, or in this case, nightly,
experiences that will lead one to ultimate enlightenment.

All things are brought to each of us, for a reason.
Why OSA???

In OSA therapy, the mask, is everything.

recovery
a regaining of something lost or stolen

rebirth
regeneration of something destroyed: the regeneration of something that has died or has been destroyed

Hard exercise does not build strength and endurance.
Hard exercise tears the muscle down.
Proper nutrition and rest build strength and endurance.

Silently, alone in the dark of the night, from deep in the abyss of my brain,it seeps out.
Quietly it flows throughout my body and I am recovered and
reborn.
HGH-human growth hormone. Secreted from the pituitary gland during REM sleep.

From the 5th morning, after 5 of the most horrific nights of my life,
I felt the first stirrings of the recovery/rebirth. I had just lived through the first
5 nights of cpap therapy.....and survived.
It wasn't much. Just a slight easing of the pain in my legs as I walked up the stairs at my work.
It was enough to convince me to keep trying.

Last Saturday, ~2 miles from the summit of Vail pass, my rebirth was complete.
My mind, firmly in control. My body, begging to stop this madness.
Mind dictating to body, you're fine.
Today is our day.
Today we are reborn.
Today, through cpap, we are recovered.
In retrospect, the strongest ride of my life.

So, 1yr after starting cpap,
at the tender age of 58,
I am reborn.
What was stolen from me for years, has been found.
What was dying, has been rebuilt.

With every night of cpap, the horizon continues to stretch farther away.
The boundaries of my limits continue to expand.


Yin/Yang of life-
MY choice to embrace or reject, the mask, and in so doing,
chose quality of life.

I have chosen quality of life.

NOT having to take a drug, NOT having to have surgery, NOT having to do anything differently while conscious, all made the idea of PAP therapy an absolute dream come true for me, as others have said. What could be easier than keeping a little device next to my bed so that all I had to do was just let my life get better WHILE I SLEPT?

Sure, I went through a certain grieving process in coming to grips with a machine being a part of the rest of my life, just like people have to adjust to and grieve over the wearing of glasses, dentures, or a hearing aid. But to my way of thinking, those are all things you have to wear while you are AWAKE to improve your life, which makes the adjustment and grieving over them more difficult. I figured that if I had got used to wearing glasses, while awake, in order to see my life, then I should have no trouble wearing a mask, while asleep, in order to have a life, one that was worth seeing.

So I broke it down to one night at a time and learned to look forward each day to using my secret weapon in the fight against misery--a miracle machine that allows me to breathe and sleep all at the same time.

It doesn't make me different from everyone else; it allows me to once again be like everyone else. And maybe even have an edge, in some ways.

jeff

Right on to be thinking about the story you're telling yourself.

Mine's pretty simple: I have a sleeping disorder that can be effectively treated with air while I sleep. The treatment helps keep me healthy and makes me feel great while I'm awake. This is amazing and I'm grateful.

And my context (which is crucial to understanding the story, right?): My husband is paraplegic and we have many friends who are paras or quads. They have to do all kinds of things just to live their daily lives. Like ... going to the bathroom is a production for most of them. Constant attention to not getting pressure sores that can land them in the hospital for months. Travel means hauling around all kinds of special paraphernalia. One of our quad friends uses a ventilator 24/7 -- or he dies (as in right away, not 10 years later). They have all kinds of medical equipment (and DME stories to beat any I've read here).

And yet ... most of them -- the ones who are our best friends -- live happy, active, relatively drama-free lives. They'd find my little APAP routine interesting but trivial. Who am I to make more of it?

This is not "I feel good 'cuz I'm comparing myself to other people with more problems." It's just keeping stuff in perspective. This is really small potatoes in the grand scheme of things.

That's my story and I'm sticking to it.

Pam

Who wouldn't want to look like Seven of Nine?