Hooking myself up... for the first night.

Heartful · Post by **Heartful** » Thu Oct 11, 2007 10:28 pm

Hi all,

Getting ready to share my first night with my dream machine!
Not too sure if we'll hit it off.. or if it's gonna be a love/hate relationship...
but I'm resisting the moment to get in bed.

I know it's the fear of the unknown talking... and the fact that I'm not yet in full acceptance mode... but it's like committing to something that will stick with me for the rest of my life and I'm there, looking at that machine waiting for me and wondering "hey, do I really have to do this or is there other options?"

This is silly and childish I know I should be thrilled this might make the difference and bring me back some aliveness!

So this really is a mind thing, I know it, and it's late... and I'm trying hard to be reasonable and forget that tonight is my first night toward dependancy. Yeah, that must be the real issue.. I can't stand depending upon anything

OK before this turns out into a psychanalysis, I better put my brain cells to rest. They have already suffered enough from hypoxemia!

Hope you are all having a good and restful night

Heartful~

Moby · Post by **Moby** » Thu Oct 11, 2007 10:38 pm

Hi Heartful,

I hope tonight goes well and you get some restful sleep. There are bound to be a few glitches with new equipment. Bring them here and someone will help you.

I think you're right, the dependency thing is a big hurdle. I hadn't faced it myself yet, at least not put a name to it. Guess I'm already dependent on my spectacles and orthotics and asthma meds...so it shouldn't be a biggie for me, but it is. "The rest of your natural life" sort of thing. Or "till death do you part"...

Di

snoregirl · Post by **snoregirl** » Thu Oct 11, 2007 10:48 pm

It just takes a while to get used to it.

I was lying in bed a couple nights ago and I was very surprised that I found myself thinking how nice it was with the air blowing up my nose and how comfortable I was.

I would have never thought I would be thinking these thoughts a year and a half ago when I started.

It just feels right now. The headgear, the ace bandage chin strap, even the tape on my mouth.

I know this sounds crazy, but it was a peaceful relaxing feeling.

DreamDiver · Post by **DreamDiver** » Fri Oct 12, 2007 1:41 am

Heartful wrote:...
So this really is a mind thing, I know it, and it's late... and I'm trying hard to be reasonable and forget that tonight is my first night toward dependancy. Yeah, that must be the real issue.. I can't stand depending upon anything

Heartful,

I'm pretty new to this too.

I've been trying to put a name to this exact issue. Thanks for defining it. I too am trying to come to terms with being dependent on a machine for the rest of my life. It's ironic to call it a mind thing because the baggage it comes with is also quite physical. Mine is black and fits discretely under an airplane seat.

ozij · Post by **ozij** » Fri Oct 12, 2007 7:50 am

Look at it this way:

We depend on food
We depend on water
We depend on oxygen.

And if we don't have them we become independent of living.

So having a machine supply the air we need but can't get when our airway collapses is'nt such a bad dependency....

O.

NeedinZs · Post by **NeedinZs** » Fri Oct 12, 2007 7:57 am

I'm with Snoregirl on this one!

I was just thinking last night how much I LOVE going to bed with this machine.
At first I NEVER would have thought I'd get used to such a weird thing blowing up my nose all night.

I can't imagine being without it now.

I really do look forward to going to bed, like Snoregirl said, it just gives me a peaceful feeling now.

After some time, I bet you'll experience the same thing.

Keep working at it!

DreamDiver · Post by **DreamDiver** » Fri Oct 12, 2007 8:10 am

ozij wrote:Look at it this way:

We depend on food
We depend on water
We depend on oxygen.

And if we don't have them we become independent of living.

So having a machine supply the air we need but can't get when our airway collapses is'nt such a bad dependency....

O.

Excellent points! As opposed to food and water, we have to have fresh 02 on a minute-by-minute basis. And I really do feel that much better when I get enough 02.

Kharris · Post by **Kharris** » Fri Oct 12, 2007 8:15 am

My first night was a week ago. I had a meeting and got home late, and my
wife had put the box on my bed------ because of the snoring and jerking around trying to breathe we haven't been in the same bedroom all night
in years---- it was late, I read the books, and went to bed without it.

I have tried to make it the last thing I do before sleeping. No reading,
no tv while hooked up. Take the time to get it right and as good as possible, then.......hose on, lights out.

For me, and it sounds selfish, I am doing this for ME, yes it will help in all
aspects and relationships of my life. Its already helped with my customer service, I am way less irratated and grumpy. My wife says I don't walk
in a fog anymore when I first wake up. but in truth, my not sleeping affects
Me first. Sleeping better will affect ME first.

Ritual and intimate are not the right way to describe it, both sound kind of
kinky.....hoses....beds...masks...wow what are we doing here????
But in is very personal. Take your time getting used to it, get it set up
any way that works for you. Wearing a hunk of plastic on your face
is not a natural. The more comfort you find the better you will do.
I have learned that my head changes size and shape from day to day
because some times what worked last night, isn't working now.

This forum is the best place to ask for help, to give advice, or just vent.
Hang in there.

Heartful · Post by **Heartful** » Fri Oct 12, 2007 8:29 am

Thanks for the encouraging words

I survived the first night. The good part is the mask stayed on all night and I didn't wake up tangled in the hose... so I'll take this as a good start

Knowing that others felt the same way about wondering how to adapt and how it turned into appreciation for that machine really encourage me.

I agree with you Ozij that there plenty of others things that we depend on, it is just that they are not apparent and attached to our face

I won't give up yet and will face my issues and give myself time to adapt.
That's what I meant about it being a mind thing... my body needs it but my mind is resisting.

I'm sure I will feel better about it in a few days. Your encouraging words will be helping for sure

Heartful

skits · Post by **skits** » Fri Oct 12, 2007 8:30 am

This thread got me thinking. I started Oct 1. Almost two weeks in.

After first week I changed masks. I could not handle the nasal pillows. I was using a Liberty Mirage. It seemed to rest on my upper lip and felt like it was too much pressure on my gums. Not to mention the ballooning of my nose.

Wed. I got a new mask, Ultra Mirage (FF again, but no pillows). It's better, but I'm still having problems. I've yet to sleep thru the night. I think one night I may have actually fallen asleep with the mask, but that wasn't until I got up at midnight, took half a PM and three highballs later. Which is NOT the way I want to do this -- but I'd reached total frustration. If I'm not asleep after two hours I have to take it off. I can't seem to lie on my side without air leaking everywhere. And I SO want to sleep on my stomach. Instead I lie there thinking on my back for hours.

But back to the comments. The part about dependency got me thinking. That may be part of the problem. I'm 54 and never had to worry about my health much. Within a month I'm on BP meds and a mask and they're telling me it's for life. But the funny part is I have an overnight trip tomorrow at a casino and I'm actually debating taking the machine. So maybe I have come to terms that I have a new buddy. There's worse habits I have.

One of these nights I'll be tired enough to drift off and forget about the mask being on. I can't wait. But in the meantime I guess I'll just be happy that for those two hours my brain gets some oxygen. That's probably what keeps me up...oxygen!

Sorry for the rambling...just working it out in my head.

Heartful · Post by **Heartful** » Fri Oct 12, 2007 8:45 am

Hi skits,

Thanks for your comment.
I was told by my inhalotherapist yesterday that those nasal pillows are a good choice for the people who needs a pressure under 8 otherwise, they blow too much air and it gets uncomfortable. So maybe that's why you couldn't handle it?

I chose the gel mask and besides some inevitable red marks in my face this morning, I think that was a good choice as there didn't seem to be any leaks. But still, getting used to sleep with something in our face and having to find a different sleeping position affects for sure our usual sleeping habits.

I'm glad my dependancy issue got you thinking When you've never had any health problems before, it is not an overnight thing to accept that now your life is different and especially until we get the full benefit of the CPAP and don't want to spend one night without it!!!

Acceptance, acceptance... never an easy one

I wish you luck on your casino trip!

Heartful

echo · Post by **echo** » Fri Oct 12, 2007 7:05 pm

hey heartful, glad to hear your first night went well! don't sweat it, it gets easier with time. On the other hand, if you do hit a few roadbumps here and there, you will have gained knowledge and experience in the meantime, and remember you have the power to take your own therapy into your hands and do what it takes to make it work for you! (i'm for sure plaguerizing Slinky or someone else here)

yeah sometimes it sucks, but hopefully you will feel its positive effects soon and will quickly become addicted to your xPAP like the rest of us

happy sleeping

rested gal · Post by **rested gal** » Fri Oct 12, 2007 8:53 pm

Heartful wrote:I was told by my inhalotherapist yesterday that those nasal pillows are a good choice for the people who needs a pressure under 8 otherwise, they blow too much air and it gets uncomfortable.

The therapist was mistaken, imho, about nasal pillows being "uncomfortable" at pressures over 8. Not necessarily so at all. Quite a few people on this message board use nasal pillows successfully and comfortably at very high pressures like 18, 19.

The pressure range I used on autopap was 8 - 20 (it rarely, briefly would use as much as 15 on some nights...mostly used 10, 11, 12.) The pressure range I use with bipap auto is IPAP 20 / EPAP 9, and that machine occasionally uses as much as 15 and 16 blowing in at me for IPAP (inhale pressure.) IPAP usually uses 11, 12, 13.

Except for my first 4 or 5 months when I was trying to use Full Face masks, I've used nasal pillows masks ever since.

First the Breeze with nasal pillows for over a year.

Then my favorite, the "Headrest" nasal pillows (also called Aura and Twilight NP) for the past two years.

I've also used the ComfortLite 2 nasal pillows enough times to know that that mask suits me well, too. I just like the "decapitated" Headrest the best of all.

Sometimes, for some of us, it takes tweaking and homemade straps to get ANY mask working well for us at ANY pressure (even low pressures.)

The notion that so many DME's, therapists, and doctors have that nasal pillows "won't work" or "will be uncomfortable" at moderate and high pressures is incorrect. Depends on the person. Depends on the particular nasal pillows mask for that person. Depends on the size of the nasal pillows (many DMEs think pillows that are smaller than actually ideal are a "fit."

Also depends on whether the DME is even aware of ways to make any number of masks work better.... like hanging the main air hose overhead to prevent weight of hose tugging at a mask.

Dig into the mask subjects on this message board and the Lab Rat Awards link -- I'll bet you'll soon know more about how to make masks work, and work COMFORTABLY, for you than any advice you'll ever get from the therapist at the home health care supplies place (the "DME.")

LINKS to MASKS - nasal mask, nasal pillows, nasal prongs
viewtopic.php?p=35286

LINKS to Lab Rat Trophy awards
viewtopic.php?t=15104

GreenIce · Post by **GreenIce** » Fri Oct 12, 2007 9:24 pm

I agree with RG about nasal pillow at high pressure. I have much success with Swift II at high pressure from 13 to 17. I was told too, nasal pillows are not suitable high pressure. Wonder why they (doctors, lab technician, manufacturer) think nasal pillows are not suitable ?

Take for example, respironics website about comfort curve mask,

http://comfortcurve.respironics.com/Ima ... ration.jpg

everson · Post by **everson** » Fri Oct 12, 2007 9:32 pm

me too first night and I'm nervous and scared. Dont know much about all of this and worried that my equipment wont work right. I'm grateful your'e all out there.
Everson the scaredy cat

Humidifier

Additional Comments: ozzie heated hose.

Mask

Hooking myself up... for the first night.

Hooking myself up... for the first night.

Re: Hooking myself up... for the first night.