Question for Veteran Hosers

TomDac · Post by **TomDac** » Wed Feb 07, 2007 3:22 pm

10 years ago I put on my first CPAP system and I struggled too. The whole, "I gotta do this the rest of my life" thing was big for me.

I also struggled with getting to sleep and fighting the exhaling into the mask against the airflow (it was set on 7 initially)... I tried a couple of different masks and finally got one that I liked and was comfortable with.

I'm not sure when it happened, I think about 3 weeks into it, that I just changed somehow..... When I put my mask on, I was conditioned and comforted by the fact that I knew I would be sleeping soundly very soon.

So I think the struggle you're experiencing is normal for some of us. I say now that I can't and don't want to live without my CPAP machine. I never ever sleep without it.

Good Luck!

Tom

Severeena · Post by **Severeena** » Wed Feb 07, 2007 5:00 pm

I am so thankful for Tom coming into my life. He is the one that read my doctor's report of my sleep study and insisted I find a doctor and have him or her look at those results.

I found a doctor, he read my results, not conclusive enough so I had another sleep study and I was put on CPAP immediately.

I had a terrible time with the mask, which I felt I was forced to use and not the one I really wanted.

After weeks of sleepless nights and a mask that made terrible noises I found one that worked for me and Tom still checks to see if I have my head gear on because of no sound from the mask.

I was put on the CPAP before Tom and I were married and we have been married little over a year now.

I feel lucky to have built in CPAP support in my own home.

It takes time to get use to, but what would you rather be and have? A good night sleep and not fall asleep behind the wheel of a vehicle.

I want both and now I am using my APAP all the time and Tom is using my CPAP all the time.

We are a CPAP-APAP family and we share the oxygen concentrator.

birdshell · Post by **birdshell** » Wed Feb 07, 2007 5:29 pm

I wanted so badly to sleep well. It was a relief to get the long-awaited machine and first mask after only a MONTH!!

At first it was a bit exciting, trying to get everything set up properly and learning the ins and outs of treatment. Next, I was researching masks and tried a few different forums. I joined each, but discovered this wonderful place.

There are so many wonderful, intelligent, funny and helpful Forum Folk here that I count myself among the exceptionally blessed to have my apnea problem. Had I not had apnea, I should never have found all of you.

Would I hope for a better interface/mask? Absolutely. Should I be on the lookout for a better designed machine? Just try and stop me! Could there be a less bulky, more efficient way of delivering therapy in our future? I SURELY hope so!

But, would I go back to sleeping over half of my life away, at 12-14 hours a day? No way.

For me, xPAP is the icing on the cake that is making my life a better one every day. I have slowly decreased my sleep time to >9 hours, and still moving down. That alone makes it all worthwhile.

I actually feel somewhat sorry for the folks who are unable to be apnoeics. Although I shouldn't wish risks on anyone, there is a benefit. Adversity unites those experiencing it, and we are (as I am wont to say) all better together than we are individually.

HappyHoser · Post by **HappyHoser** » Wed Feb 07, 2007 8:59 pm

Coming at this from the perspective of near fatal heart disease at age 47, I truly thank GOD every day for my treatment. I look forward to "strapping in" each night. It's only a dumb little overpriced vacuum cleaner and the worst thing it does to me is mess my hair up. Suprising, given how little I actually have left. That little machine is now part of my life, but it's not going to rule it, ever. As a function of my work, I am frequently in hospitals and medical facilities and there I see folks who are experiencing truly cruel diseases and intrusive treatments. If you have any doubt at all, let me tell you that we are blessed to have only what we have. Focus on what you might do to ease other peoples pain and your own inconveniences will be virtually forgotten!

chrisp · Post by **chrisp** » Wed Feb 07, 2007 9:29 pm

Look at it this way, You Owe lets say 2 years in sleep debit. Now we will give more sleep to those that already have plenty, and take away what little sleep us untreated OSA sufferrers get. Now give that to those with plenty of sleep. In 5 weeks your sleep debit will be all paid ? : ......................................HUH.........................Well it worked for President Bush.

:twis ted:

Wulfman · Post by **Wulfman** » Wed Feb 07, 2007 9:45 pm

chrisp wrote:Look at it this way, You Owe lets say 2 years in sleep debit. Now we will give more sleep to those that already have plenty, and take away what little sleep us untreated OSA sufferrers get. Now give that to those with plenty of sleep. In 5 weeks your sleep debit will be all paid ? : ......................................HUH.........................Well it worked for President Bush.

:twis ted:

That must be "Texas Math" (as opposed to the New Math).....since y'all are from the same state.

Heck....a few trillion here and a few trillion there and pretty soon it adds up to "real" money.

Good to see ya back here again.

Your posts of a couple years ago were very instrumental in my bypassing the "Evil DMEs". THANKS! (Plus, I "did the math")

Best wishes,

Den

seenas · Post by **seenas** » Wed Feb 07, 2007 10:15 pm

My therapy progress has been interesting. Initially, after finding the correct mask which as far as I'm concerned is half the battle with compliance was an immediate improvement in my memory after 3 weeks. I thought I was in early Alzheimer's Disease. The first month of therapy I was still waking up several times during the night, but as the weeks progressed and then the months I am now able to usually sleep through the nite with only waking up once (usually at the same time).
Physically, it has been a slow progress of regaining my energy. I have good days and bad days. I believe that this is related to having so many years of sleep deficit.
If you asked me do I want to be sleep with a machine for the rest of my life I would reply "No". But, I do not ever want to feel as I did prior to therapy. This therapy gives me a better quality of life then I had. I will use this machine until there is a better treatment. If it is the rest of my life, that is okay. My life is a lot better now.
Seena

sharon1965 · Post by **sharon1965** » Sat Feb 10, 2007 12:10 pm

i wonder if our attitudes change as we start seeing results...i'm so new to cpap, only 5 weeks, but i've noticed some subtle changes already...i have so far to go, as my health has deteriorated so much in the last ten years, but having my first sleep study and hearing the diagnosis of severe sleep apnea changed my life before i even started therapy...gone was all the guilt and shame i 've felt my entire life because i was labelled as lazy & unmotivated by my family of origin, when in reality i was just profoundly tired! i stopped beating myself up for not contributing as much to my own family as my husband does, and i stopped believing that i somehow brought this on myself because of lack of will and motivation...i'm so grateful for a diagnosis and treatment that the frustrating aspects (leaks, etc) are a small price to pay..do i lament the fact that this is for life? you bet i do; but i echo the response of so many people here: i'd rather have a chance at health and longevity than the alternative...and an interesting thing has started to happen.. i fuss and fool with the mask for a few minutes each night, then just before i fall asleep i realize i can't feel it on my face anymore...then again, ask me how i feel in a month and i may be back to bitching!
hang in , tom, we'll get there

rested gal · Post by **rested gal** » Sat Feb 10, 2007 7:06 pm

Chris!!! Good to see you, rascal! Along with your funny little grin!!
:twis ted:

msteve · Post by **msteve** » Sat Feb 10, 2007 7:32 pm

I'm in month 13 of treatment now and I can honestly say that the good nights are very, very good -- but then there are the bad nights. Like last night. I've been taping my mouth to eliminate the mouth breathing, and I'm going to give up on paper tape. Paper cuts. Ouch! The fabric tape I had was much softer, but not waterproof. As soon as the sore on my upper lip heals, I'll give the new fabric tape I bought today a trial run. In the meantime, back to the FF mask, which I hate. Like I said, good nights and bad.

Marie · Post by **Marie** » Sun Feb 11, 2007 9:42 am

After 2 years plus a few months of using cpap, it is like putting on eyeglasses, I am so used to the routine.
Only have gone one night without it, for a hurricane, when power was lost.
I was apprehensive about not using it, and I don't think I slept very well that night.

RachelM · Post by **RachelM** » Sun Feb 11, 2007 6:04 pm

I am now 6 months into CPAP. Initially I felt "sentenced" to a life of being confined at night to a mask and hose. I have been 100% compliant. Like diet, exercise, or whatever else, I'm afraid that if I let down at all, I might not start again. Masking up at night has become habit. What keeps me going is the memory of how exhausted I was before CPAP. No way do I want to return to that quality of life. If a better solution to the problem comes along I'll grab it but until then I'll keep hosing up at night.

teach · Post by **teach** » Sun Feb 11, 2007 7:25 pm

I have only been on cpap for 2.5 months now. I still really have a struggle with the unattractiveness of the whole process. I'm afraid my skin is going to wear out from the mouth tape and haven't found a peace of mind about my spouses reaction. I did however take a nap on the couch yesterday and was very surprised how poorly I slept. I snored so much I woke my self up and didn't rest well at all. I guess I will need to get over the self conscious deal and just live with it.

Software

Additional Comments: decapitated aura, comfortsleeve, padacheeks, papillow, pur-sleep, pressure 9.5, back to using polident strips

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Question for Veteran Hosers

a life sentance