My first night in the Cthulhu machine

[truepenny]

Well, the assimilation is off to a rocky start.


Yesterday I went to get my CPAP machine (after a little bit of drama about whether my health insurance company would authorize the damn thing before my appointment: there was a message on the answering machine Thursday night saying they needed to reschedule because the authorization hadn't come through, but mercifully, when I called yesterday at noon, the nice woman on the phone double-checked for me, and they'd gotten the authorization that morning--insert huge sigh of relief here). The sleep clinic does not itself provide the machines; one has to go to a "home health" provider--the one I chose, purely on the basis of geographic convenience, is in a strip mall. It's next door to a furniture store, so, basically, the interior of a warehouse has been converted into a cubicle maze. The effect is a little unheimlich.

My respiratory therapist was very nice, very patient, and clearly used to working with people who are not even remotely comfortable or confident when faced with a piece of new technology. He commented several times on how quickly I picked up on things, and I refrained from telling him that there was nothing to pick up on.

Which is just as well, because the blow to my pride is heavy enough as is.

So I brought the thing home, got it its distilled water, and last night set it up on the two-drawer filing cabinet that serves as my nightstand. And plugged myself into it.

The first problem I have with the CPAP machine is purely on my end, because it's the insult to my dignity. For those of you who also have to assimilate yourself at night, I'm starting out with the nasal pillows, rather than either of the more strap-heavy mask options, and I just feel goddamn fucking ridiculous. I am reminding myself, believe me, that this is necessary; that it is probably going to improve my quality of life immeasurably; that it is a piece of medical equipment; that there's nobody to see me but mirrorthaw, and if I know anything in the world, it's that he won't think less of me; but I still just cringe. From this perspective, and this perspective alone, the mask would actually be preferable, because I wouldn't feel quite so much like I was wearing the world's worst elephant costume.

But anyway (as Mike Ford always said when looping back from a tangent). That's an attitude problem, not actually a problem with the technology. The second problem--and I'm sure I'll learn to cope better--is that I could not, last night, figure out how to sleep in any configuration except lying on my side facing the machine. Which isn't terrible--it's better than sleeping on my back--but the combination of the RLS and the remaining stiffness (and titanium) in my ankle joint mean that I kind of need to roll over occasionally. And every time I tried, the weight of the tubing pulled the nasal pillows down enough to break the seal. When I go to bed tonight, I'm obviously going to have to practice before I turn out the light.

The third problem is the stumper. I woke up once last night around two, went to the bathroom, came back. No particular difficulty, aside from trying to negotiate the machine and the tubing and the nasal pillows in the pitch black dark and agonizing over whether I was making enough noise to wake my long-suffering spouse. Then I woke up again around four-thirty, went to the bathroom, came back . . . and managed to do something to the machine that my kind and patient respiratory therapist had not taught me about. All it would do was sit there and blink its status light at me. It would not light its menu screen, it would come on, it would not go off. It just sat there and fucking blinked. I unplugged it and plugged it back in again. No joy, just the blinking as if it was trying to tell me something in Morse code. Possibly S.O.S. By this time, I had woken my long-suffering spouse, so I turned on the light. I still couldn't see anything wrong. Finally, I said fuck it, if I haven't used the machine for the required four hours, I just won't be in compliance tonight, and--(I admit) with a certain amount of vicious satisfaction--unplugged it.

By that time, (a) I was pretty thoroughly awake and (b), worse, my RLS was awake. Even the relief of being able to roll over wasn't enough of a counter-balalnce. So I got up, came downstairs, and wrote this blog post. At some point later today, when I feel less like heaving the machine through the window, I will have to get out the manual and try to figure out what I did. But for tonight, my quality of sleep has been drastically disimproved by my little Cthulhu machine, and I am sitting here doing a slow burn at my unoffending computer monitor. I know that it's just that it's new; there are inevitably going to be some, er, teething problems (although that's an image I would have been better off not coming up with). But seriously. Goddammit. The offered solution for my sleep disturbances is seriously disturbing my sleep.

I disapprove.

Comments

[lydy.livejournal.com]

Hey, hi, I'm a sleep tech. Some nasal pillow systems have a way to take the hose up over your head and kind of anchor it to the top of your head. If your system does that, then that might help with the rolling over part. Getting used to CPAP is a pain in the ass, speaking as a CPAP user, but it does get better. On the other hand, it is quite common for it to feel disruptive for the first week or two. I do know that some people have had success with using it while watching television as a way of learning to adjust to it. So, put the damn thing on and do something distracting while wearing it. Feels silly, may not address your particular problems, but it's a thing I know and now so do you.

Good luck.

[truepenny.livejournal.com]

Thank you! It always helps to know I'm not the only one. :)

[carbonel]

Getting used to CPAP is a pain in the ass...

Damned straight.

but it does get better.

I can testify to that one, too. And having good technicians has made a huge difference for me.

It's still not perfect, but I'm mostly sleeping through the night now.

[oracne.livejournal.com]

My sister has one, and so does one of my local friends. Once they got used to it, the improvement in sleep made them feel measurably better. So I hope it works out!

[heresluck]

Well, that certainly sucks. I am sorry that the adjustment period is getting off to a rocky start! I am all in favor of your being able to breathe, but I do hope that using the machine becomes less of an ordeal both physically and mentally.

[nancylebov.livejournal.com]

If anyone should have 24 hour help lines, it's makers of CPAP machines.

[matociquala.livejournal.com]

I have nothing but <3, but I have a shitload of <3.

<3<3<3<3

And Bowie.

[truepenny.livejournal.com]

Proving once again that Bowie is never the wrong answer.

[matociquala.livejournal.com]

Bo(wie) knows insomnia.

[etrix.livejournal.com]

In my experience, it is impossible to troubleshoot technology at 4 o'clock in the morning, unless it's your job. Then your brain is pre-geared to understand manuals, buttons, and pretty, flashing lights.

Hopefully, last night's frustration doesn't bleed into today's attempts to fix it. So, in the ultimate act of techy fix-it know-how, I shall cross my fingers for you.

[ckd]

It's tough to do even when it is your job. I tend to think 4 am should just not exist....

[etrix.livejournal.com]

That's why most try to sleep through it, I guess.

[fidelioscabinet.livejournal.com]

Swell.
This does put sleeping with four heat-seeking cats who do not all like each other into perspective. If that's any consolation…

[pameladean]

Failure of sleep technology at four a.m. is just not permissible. I hope the manual is useful.

I know people who feel ridiculous in the mask too, though that doesn't mean you would.

P.

[swan-tower.livejournal.com]

Oh god, do you have my sympathy. I tried CPAP briefly (under circumstances where it was more a "this might help you" kind of thing than a "you really ought to be on this" kind of thing), and I could. not. fucking. sleep.

At all.

The pressure drove me crazy, and also drove my mouth open. I got one of the straps to keep it shut, and not only did this fail to work, it gave me jaw pain. And I couldn't sleep. I am not somebody who goes to sleep easily under the best of circumstances; strap that thing on me, and the only way I'm going to pass out is when I'm at the point of exhaustion so severe, I'm about to cry.

This is not true of everybody. I have any number of friends with CPAP machines, and their quality of sleep has been immeasurably improved. But I ended up deciding that if this was a "this might help you" kind of thing rather than a "you really ought to be on this" kind of thing, then I was just going to live without it.

I hope you are able to get the tech problem fixed, and arrange a workaround for being able to roll over, and that this brings you glorious apnea-free sleep in the near future.

[mithriltabby]

I call my wife’s CPAP mask her “dream snorkel”; she finds that a more pleasant way to think of it.

[kellymccullough.livejournal.com]

All I've got is sympathy and hugs, but you are welcome to as much or many of both as you would like.

Yes it does suck...

[mia-mcdavid.livejournal.com]

or more precisely, blows, but the difference it made for me is dramatic. Well worth the horrible adjustment period; I no longer HAVE! TO! have a three-hour nap every afternoon. Much better.

Hang in there...