I haven't been here in FOREVER!

[mzlaura1884]

... I am enjoying life and then just feel like i got something from my past depressed self shoved back in my face. Hard to explain anymore feelings then that really.

Hey Laura, no need to explain more because you identified it well -- big disappointment and an unexpected, unwelcome blast from the past. We all harbor hopes about things and we have to grieve when our hopes are dashed. I remember you from last year. How ironic that your snoring husband was having such a hard time supporting you when you first went on CPAP -- is the lack of support still an issue for you and if so, is it part of why you're feeling the embarrassment you mentioned? And is it part of why you hate your mask/machine?

To me it sounds like you're going through some big life changes and definitely the road gets bumpy when we're in transitions -- even positive ones like your impressive weight loss. Moving forward almost always means letting go of something, and we need to grieve our losses. The loss of hope that you'd get off CPAP is a legitimate loss. I like the Buddhist approach to emotions which is not to fight with them but to just feel them and allow them. They have much less power to dictate our choices that way. I know people here will have a lot of good practical suggestions about hose management, masks, etc., so I just wanted to offer a little support and encouragement.

BTW I hate my cpap too (don't tell anyone), and I know at least one other committed cpap user here who hates it as much as I do, so you're not alone. The trick is to use it faithfully despite hating it, not shaming yourself or letting anyone else shame you into using or not using it. Also, make it a daily choice rather than focusing on it as a life sentence. Even at 60 I can bring myself down quickly by focusing on having to use the contraption for the rest of my life. And if it helps, after a year of using it faithfully I'm finding that hating it is sometimes replaced these days by a more peaceful sort of resignation.

Hang in there. Best wishes.

Yes definitely agree 100% with this! I have also been on daily oxycodone since my surgery in March for various things... gastritis, post-op surgery, herniated disk causing horrid sciatica down my left leg.. i am sure this could be influencing numbers as well and i KNOW the risks associated with sleep apnea i have just been in denial "again" and refusing to use the machine. VERY dangerous for me especially when i am taking oxycodone every 4 hours "respiratory suppressant" and Ambien "sleep medication" and other days just a shot or two of alcohol but that is not a common occurance just tried a couple of times. I am definitely embarrassed. My husband is much more supportive of it now it doesn't phase him anymore. He helped me pack it up yesterday to see the DME. I am even embarrassed to have it on in front of him he works 3rd shift now so only 2 nights he is home i usually don't wear it.. it's usually my self feeling disgusted by it rather than him it's an issue within me and i know this.

The DME put it quite simply i am using a 9.5 pressure 95% of the time.. actually i went there too because i thought i lost my SD card and my kids were playing with it so i went for a replacement as well until i felt like an idiot when she told me it's in there had i known that i would have read the card on my sleepyhead software I THINK i still know how to use it. I think i was feeling for the other slot. Anyway i used it last night after putting on the new cushion and decreasing the humidity was definitely better then some previous night but i still rip it off around 7am and go back to sleep without it. I am due for a new mask in September so i am going to go back to the DME and try on some other stuff. My pressure settings are already pretty low 6-10 at the max. DME said my leaks, and AHI is amazing!!! My AHI is 0.2 with my machine obviously. Hopefully i can get back into the jist of things i don't want a set back like any weight gain, stroke, heart attack in the future so i guess i just have to come to terms with almost dealing with this all over again.

[mystydragonfly]

Hi,

I too stopped CPAP for about a year and thought I could get away without using it. It was very difficult for me to get used to it. I am still having a little difficulty using it, but since I have been back on it I am feeling better. I became so much more tired and now wish I would have kept working at using it. Since I've been back on it for several months again every night, I find that I don't dread it as much as I used too. I now think of it as my lifeline, instead of something I have to live with the rest of my life. Since I found this group, I feel very encouraged that if I just keep working at it, I will eventually get to have a full nights sleep. I think Pugsy has a great way of looking at each problem that you have with CPAP. Break each problem down and work on the solution. People here are great in helping you do just that. The bottom line is I found that when I stopping using it, I was only fooling myself. Keep coming back to this forum, it really helps.

[Pugsy]

Take one step at a time. Pick a problem and work on it...one at a time. Don't try to fix everything (mask issues, hose issues, attitude issues or whatever issues) all at once.
When I am in this sort of situation where I am sort of overwhelmed and simply don't know where or how to start I try to pick one thing (the easiest usually ) and try to work on it first.

With the weight that has come off...your whole face structure is going to have changed... get a different FFM mask...different size...heck try a different kind of mask. Worried about ineffective therapy with a different mask or mouth breathing....well how effective is the mask if you don't use it at all?

Start with the hose management thing...that's the easiest issue to try to fix.

We are here to help prop you up and listen if you need us.

[49er]

Hi Mzlaura1884,

Welcome back. As one who also has great struggled with pap therapy, it has been my experience that when I accept so bad feelings, they have less power over me. So in my opinion, there is no such thing as a correct or wrong feeling.

Regarding hating pap therapy, it is totally understandable. Perhaps Kteague's advice in looking at it towards accomplishing a greater health goal might be useful in getting back on the saddle.

I also agree with Pugsy's advice to tackle one issue at a time. In my situation, falling asleep prematurely before bedtime which leads to narcolepsy like moments is derailing me big time. Because it resulted from not being able to sleep for any significant time on the pap machine, it has led to a viscous cycle. But I gotta solve the problem no matter what.

One problem I need to solve which sounds similar to what you are experiencing is when I have awoken prematurely on the pap machine, I can't stand having the mask on my face. It doesn't bother me initially because due to being so tired, I fall sleep immediately. But when I wake up, I can't get it off quick enough even when my AHI has been very low.

Anyway, I may try the Quattro Air since it is supposed to be very light. Perhaps, that is a mask you want to consider for yourself if you are limited to full face masks?

I wish you nothing but the best.

49er

[zoocrewphoto]

I have had my own ups and downs. Some nights great and some nights a total miss. I feel bad when I mess up (both mentally and physically).

I really do like how well my machine works for me. Even when I miss a day, I still feel better overall than I did before treatment started. Way better.

I tend to miss because sometimes I fall asleep while watching tv. I have not mastered wearing my mask and watching tv. Within minutes, I have to blow my nose, so I need to fall asleep before I care about that. I also tend to drool which means I will take the mask off and be too sleepy to get it back on until I have a trip to the bathroom.

Just last night, I fell asleep with an upset stomach, woke up later and got sick, and went back to bed. I didn't intend to fall asleep originally. And once I was sick, I didn't want to put my mask on, in case I got sick again. So, I went all night without my machine.

One of the reasons that I stay on this forum and participate every day is that I need the daily encouragement and reminders to keep at it. I don't hate my machine, but I do find that I can get lazy. And I need to keep pushing myself to use it all the time.

[mzlaura1884]

ty everyone

[drj130]

We're here to help, support, annoy, and maybe even push, pull and prod each other to that we feel better.
Glad that I could help in some small way.