Using CPAP forever!

[Bluecat]

My mother caught a very bad virus when she was in her early twenties that killed her pancreas and left her an insulin-dependant diabetic. When she comes to my place to stay, I get into my nightclothes and am lying in the bed in the dark with the machine up and the light is still on in her room... It takes much longer for her to get ready as she needs to test her blood sugar before going to bed and then maybe eat something and wait for some time before going to bed...
And in the morning, I take off the mask and have a normal day... whereas she needs to inject herself with insulin, test blood sugar regularly, ... (and she is very lucky as she has been very good at managing her diabetes and has no complications, 40 years after being diagnosed...)
It's true I would rather have no problem at all, but honestly masking up at night isn't that bad!

[pollyanna40]

Im 37days into it all,and im ok now!! but its still hard,this site helped,I made a comment about how im only 40yrs and its not fair! kinda comment,and the response was Brill,saying how lucky i was to get sorted so ealy in life and how other have gone for yrs stuggling with tiredness,i was the lucky one,even though i didnt feel lucky,it changed my mind about how i thought, i still stuggle but abit better than 36day ago, im getting there! x x x

[DreamDiver]

Many of us have asked that same question not long after starting. After a few years, it gets to be as familiar as wearing glasses or contacts. Yeah, it's a PITA, but not everyone wears glasses either.

[Pugsy]

Pre CPAP my sleep wasn't all that blessed. In fact I avoided it as much as possible. So being given the diagnosis was actually a relief to me. I am not crazy about wearing this stuff but the alternative was so much worse it simply was never an issue. I have always tried to be the type of person who looks at the glass as half full. I have always felt that if we look for negatives we will surely find a lot of them but if we look for positives we can find them also. Sometimes maybe not as many positives as we would like but they are there. The mind is a most powerful drug. It can really help up or it can really hurt us. I choose to have it help me.

[Paula J]

I think what has helped me accept using my cpap machine more than anything is my beloved son-in-law. He was diagnosed in May of 2010 with ALS. He is only 44 years old. After only one year of the disease, he is in a wheelchair and has been sleeping with a bi-pap machine for about 7 months. It helps with his diaframe(sp) breathing. Now he has to use it not only at night, but also a lot during the day. He and our dear daughter are dealing with this disease daily as it progressively gets worse. They have 2 children, 12 & 15. They are a wonderful family and have such faith in the Lord to help them cope with this. When I think about him, there is no way that I cannot use my machine. At least it is making me healthier. He has absolutely no choice about using his.

[JohnBFisher]

We all have different reasons why we put up with various medical contraptions.

I started wearing glasses in first grade. Why did I put up with those all those years? Especially during all those years when other kids tormented me because I wore thick, ugly glasses? I continued to wear them because I border on legally blind without them. Running into things, being able unable to read signs, being able to SEE the world around me, and frankly a little bit of "cussedness" kept me wearing them.

Why did I start using CPAP 20 years ago? Well, I was the father of two children then. That was part of my reason to use CPAP. Also, at the time my sleep was so bad that I would dream when I blinked my eyes. Wow! So, the very first time I had the mask strapped onto me and I fell asleep into a deep sleep for the first time in months and months, there was no doubt about using that contraption. I took a week off from work and slept and slept and slept. It was wonderful.

So, for me, it was more about living well, rather than just being well. I wanted to "BE there" for my wife and children. I wanted to enjoy my time with them. I wanted to feel well when I awoke. That mattered more to me than living longer.

But again, we all have our own individual reasons why we put up with the therapy.

[archangle]

I really never had that much trouble accepting it when I started around 7 years ago. I didn't really feel that much different, but I did sleep somewhat better.

A year or so ago, I got my machine set wrong and started to have some health problems. It took me forever to realize apnea/CPAP was the problems. Now I'm a true believer.

[Mary Z]

Who knows what they'll come up with in the future to treat OSA. They have already come up with an implant. There are also dental devices available and improving every day with greater variety. I'm sure some pharm. company is working on a pill. There is always a trach which is fully reversible.
Hang in there! It's like AA- one day at a time.

[deerhound]

I can't imagine not hooking up to my hose at night. My sleep is so much better I look forward to hosing and going to sleep.

[SleepyT]

How did you all come to grips? I mean, think of the carefree days of just plopping in bed, not worrying about leaks in your mask, the air tube not reaching where you are trying to move to in the middle of the night. Other intimacies... The little itch on your nose that makes you pull your mask off for a moment, or keeping your mouth shut, so you don't gasp... I was talking to my wife about this, and how life changing/cramping your style it is...

The point of the post is not to point out better sleep you get now, I have luckily already experienced that with a non-data machine, nor is it to point out that you will live longer averting heart failure or stroke, etc...

The point is coming to that realization that you are not "normal," for lack of a better term, and will ne strapping a Darth Vader mask to you face for the rest of your life... What was that process like? While I am all in... I am still coming to terms with that notion, my life hangs in the balance of this machine, and it is not like popping a pill before you go to bed, it is combersome...

Any thoughts...

Well...I do know what you mean. I don't know your age...so I cannot tell if this is part of the middle age syndrome for you. For me, sleep apnea hit in my late 40's....so I lump having this on-going disorder into the same category as "losing my youth" as it were. (If you're in your 30's...this won't apply...yet!) I do miss falling asleep on the sofa watching TV...going camping (although I COULD still arrange that....but sleeping on the ground lost its allure a long time ago)....all the things getting older or SDB took away from me. Not to be negative...but part of life is about loss. The great trick is to keep a great attitude through the losses...to not let the turkeys get you down! So it's normal to miss the things you lost, I think...as long as you remain grateful for the things you still have! Acceptance comes...and goes...and comes around again...in fits and starts. One day....you won't even think about it anymore...

[Dive Apnea]

Thanks for the responses, this post was just to see how everyone coped in their own way.

FWIW, I am 39, pretty fit, play full court basketball 5 days a week... but I don't view getting this diagnosis as a middle age crisis for me. I am pretty pleased with my results using CPAP, just coming to grips losing my "freedom," is where I am at. From reading the responses, the positives will out shine the PITA CPAP, and over time, it will be just a part of the routine.

[Tre-C]

However, when I learned that I had sleep apnea, it was a celebration for me. I wasn't given a death sentence, but a second chance. People out there are getting terminal diagnoses of cancer, alzheimers, or suffer through some other kind of debilitating disease or illness. Someone here mentioned bone degeneration. And me? As awful as I felt, do I really have something I can complain about? I have an easy fix and a second chance, a chance to feel good again and live a normal life because the solution is so simple: all I have to do is sleep every night. Sure, with a mask and machine, but BFD. That's a hell of a lot better than being hooked up to a dialysis machine or chemotherapy or oxygen, a catheter, or some other kind of wiring and tubing, while permantently stranded to a hospital bed.

I really wonder how those people come to grips and how they feel about the carefree days they once had? I have mine back, they don't.

So, for me, there was no coming to grips with it. I've been blessed and will gladly wear my CPAP forever. My first day I was so excited that when I got my machine, the first thing I did was put my mask on and take a nap. The second thing I did was put my mask on and go to bed early. I pray for those who have it worse than me, and I thank God that I've only had a minor setback and slight inconvenience because I have not been diagnosed with something that people really have no chance of surviving.

This is exactly how I feel about it. Get back my energy and vibrancy just by sleeping with a mask??? Well, then give me the mask! I was so exhausted that I feared I had cancer. No joke. I feel so grateful that my dx was sleep apnea, a treatable and easily-managed condition.

I think of my machine as a health machine. It's all about perspective, I suppose.

[HPM]

There's no "right or wrong" way to feel about being on CPAP and realizing what a long term venture it is. Everyone will handle it uniquely, just as everyone handles grief diffently. It is sort of a grieving process - loss of how things used to be.
Yes, we can be thankful that sleep apnea is treatable. I honor your posting this thought. I've been on CPAP for going on 6 years and adjusted relatively well with a few bumps in the road. Being female, I'm wondering how other gals feel about the following... for whatever reason, I am starting to feel so ugly and unattractive when I mask up. This hasn't bothered me at all till the last few months. The swift fx for her helps but I stillhave to wear chin strap. My husband does not make me feel this way - he is very accepting. Men may have similiar issues but I wouldn't know. I agree that using CPAP can be a burden to think about life long so I try to do like previous post said - just take it one night at the time. Stay in the present.

[LinkC]

I can't imagine not hooking up to my hose at night. My sleep is so much better I look forward to hosing and going to sleep.

Yep! Me too. I see it as my little "cocoon". The rhythm lulls me to sleep. The machine noise is comforting...and blocks outside noises; kinda like a white-noise generator. And, of course, I associate it with sound, restful sleep; and NOT being "fuzzy" in the morning. As to "intimacy", my mask comes off and on in just a second or two. Morning or night.

I would feel too weird to sleep WITHOUT hosing up.

[archangle]

You know, maybe we need to make the machines look friendlier. Have a little plastic part that snaps over the mask and looks like Darth Vader's nose. Or a mouse nose. Or an elephant with the hose playing the part of the trunk.

Or something like this: