That fleece looks fantastic and soft and snuggly. I love it! I am not crafty but maybe will try something like that for my hose.snord wrote: ↑Wed Mar 20, 2019 2:23 pmI just started CPAP 15 days ago. I was lucky enough to find this forum before I even started, and felt somewhat warned about what to expect. But someone in the forum said something like...some people just take to CPAP like a duck to water. And so I adopted that as my mantra and whenever I felt anxious, I would tell myself you are going to take to this like a duck to water. I seemed to make it through the sleep study and felt a glimmer of hope that CPAP therapy might just be what I need to sleep better.
But after my first night on CPAP, I was utterly crestfallen - it was an extremely painful experience both physical and emotionally - I had NOT taken to CPAP like a duck to water (I thought).
Still, my AHI was less than 5, so it was apparently working, so I told myself I just had to be patient. I was able to do 2 things to help myself, and after 2 weeks, I am happy to say I have a more positive view of the machine.
1. Having been through cognitive behavior therapy, I knew I had to reframe my negative experience in more positive terms (hard to do when you're in pain). Instead of just lying there thinking how much I am feeling choked or claustrophobic, I turned off the ramp and faced the wind head on. I have an Airfit F20 full face mask, and I was able to tap into something primal - something comforting about nuzzling into something - just like being in a fetal position seems comforting, being able to bury my face with the mask into the pillow and still breathe, even under all my covers (like scuba diving) was comforting. When I would fidget with the mask itching my nose, instead of getting frustrated, I just pulled the mask away from my face, let it snap back in place and nuzzled in with confidence.
2. So, I keep a sleep journal and write down all my complaints every morning, for example, the headgear elastic was cutting into the back of my head. Once I am awake and had my coffee, then I try to find solutions to my issues. I just keep trying something new every night. I tried loosening the mask as far as I could, but the back of my head is lumpy and the problem persisted. So, I found that you can buy padding for the headgear to make it more comfortable. Unfortunately, I can't afford to buy anything, so I decided to cut up an old fleece jacket and sew it onto my headgear. It took me a couple days because I have joint pain, but despite having to rethread the needle a hundred times, I kept at it, and the sewing project became my bonding experience with my machine. And as someone mentioned in the forum, having your tubing covered makes your bed look less hospital-like. Ultimately, my initial hatred for the machine (which on day 1 I nicknamed, "the paingiver") was transformed to pride in my sewing project, comfort in my head, finally getting the mask fit right, and focusing on nuzzling under the blankets with my "scuba" gear.
So obviously everyone's experience is unique, and we each have to find our own way, but I encourage you to keep trying new things and work at your own pace. Every night doesn't have to be like last night.
After only 15 days of painful hard work, I would say that I DID take to CPAP like a duck to water. The mask is comfortable, doesn't have to be adjusted every night, and I am compliant and under an AHI of 5. I wouldn't say I look forward to sleeping yet, but I just put the equipment on, and look forward to better days - I'm not really thinking about it anymore, and its not keeping me up all night. I have made peace with "the machine." Something that was beyond my imagination when I started.
I am reminded of the lyrics from the song, Takes A Little Time:
It takes a little time sometimes, to get your feet back on the ground
It takes a little time sometimes, to get the titanic turned back around
It takes a little time sometimes, but baby you're not going down
It takes more than you've got right now, but baby give it time.
Fleece.jpg
Feeling Down
- babydinosnoreless
- Posts: 2363
- Joined: Fri Nov 02, 2018 2:53 pm
Re: Feeling Down
_________________
Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier |
Mask: AirFit™ N20 Nasal CPAP Mask with Headgear |
Re: Feeling Down
The first couple of weeks I didn’t wear it during naps. I would wake up with a headache and feeling crappy in general. Then it sort of hit me like a brick why I felt like crap after a nap and started using my machine every time I laid downziuaploia wrote: ↑Wed Mar 20, 2019 1:41 pmI genuinely want to thank everyone for their responses. I don’t know anyone in my personal life that has sleep apnea or uses a CPAP so as one person mentioned, it does feel very isolating.
Having such a welcoming and kind community means a lot and I hope as I stick with it I can a positive outcome like
So many of you mentioned?
One more question! Do you wear it every time you sleep? Even for short naps? Or just bedtime?
Thank you all!

_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier |
Re: Feeling Down
i was feeling the same. i am about 6 months in using it. just this last weekend i went one day without it. what a mistake that was. i was miserable the next day and truly realized how much this machine helps me.
do not worry about not having the ah-ha moment right away.
believe me once you do get used to it, and you eventually will, you will not want to be without it.
just don't give up, it took me 2 months to get my ah-ha moment.
good luck, and don't give up, almost all of us have been through it in our own way.
do not worry about not having the ah-ha moment right away.
believe me once you do get used to it, and you eventually will, you will not want to be without it.
just don't give up, it took me 2 months to get my ah-ha moment.
good luck, and don't give up, almost all of us have been through it in our own way.
- katestyles
- Posts: 610
- Joined: Sun Jan 06, 2019 9:08 am
Re: Feeling Down
I have been going through a difficult time getting back into PAP therapy. I can feel the depression settling over me. The days when I am yawning on the drive into work, or struggling to keep my eyes open at 8pm....And this is because the leaks and tweaks keep me awake - I slept before Christmas - just had headaches and no memory and crabbiness before Christmas.
It can be hard to accept any chronic illness diagnosis though. Diabetes, crohns disease, arthritis - they all need adjustment and a good attitude.
Feel free to vent here - you are not alone
It can be hard to accept any chronic illness diagnosis though. Diabetes, crohns disease, arthritis - they all need adjustment and a good attitude.
Feel free to vent here - you are not alone
_________________
Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier |
Mask: Bleep DreamPort CPAP Mask Solution |
Additional Comments: Back up mask - anything in the drawer |
- Steve of Cornubia
- Posts: 73
- Joined: Tue Mar 12, 2013 10:19 pm
- Location: Brisbane, Australia
Re: Feeling Down
My first few nights were so bad I genuinely believed I would NEVER be able to sleep while using CPAP. I remember one night in particular, when I simply couldn't stop the mask from leaking and I threw a massive hissy fit - something I do so rarely I can't remember another example. I was so incredibly frustrated.
The subsequent few weeks saw a gradual acceptance as I developed the necessary techniques required to sleep with a face hugger and hose attached to my visage. Getting the right size mask is the most important thing, also the right brand to suit your particular anatomy (this goes for nasal delivery, not just full face). Then you have to get the strap tension(s) just right - which should eventually mean the slackest you can have them without leaks, and NO tighter. Then learn how to lie in such a fashion that you don't push the mask off. Then how to move around without throttling yourself with tubing.
Is it any wonder this all takes a while?
There is absolutely no way, back when I was having my initial tantrum, that I would find myself where I am today - so used to using CPAP that I never, ever sleep without it. In fact, I can't sleep without it.
Don't beat yourself up. Accept that this process will take a while but, just like when you have a cold or the flu, just keep reminding yourself that things WILL get better.
I promise.
The subsequent few weeks saw a gradual acceptance as I developed the necessary techniques required to sleep with a face hugger and hose attached to my visage. Getting the right size mask is the most important thing, also the right brand to suit your particular anatomy (this goes for nasal delivery, not just full face). Then you have to get the strap tension(s) just right - which should eventually mean the slackest you can have them without leaks, and NO tighter. Then learn how to lie in such a fashion that you don't push the mask off. Then how to move around without throttling yourself with tubing.
Is it any wonder this all takes a while?
There is absolutely no way, back when I was having my initial tantrum, that I would find myself where I am today - so used to using CPAP that I never, ever sleep without it. In fact, I can't sleep without it.
Don't beat yourself up. Accept that this process will take a while but, just like when you have a cold or the flu, just keep reminding yourself that things WILL get better.
I promise.
Last edited by Steve of Cornubia on Wed Mar 20, 2019 9:45 pm, edited 3 times in total.
Re: Feeling Down
Hang in there. Use it daily and you will start sleeping better and feel better, which won't take long - you'll never look back. I have been using the CPAP for several years and would not ever skip using it.
IT WILL MAKE YOU FEEL BETTER!!!
IT WILL MAKE YOU FEEL BETTER!!!
ResMed AirSense™ 10 AutoSet™ CPAP Machine
Mirage Quattro™ Full Face CPAP Mask with Headgear
Mirage Quattro™ Full Face CPAP Mask with Headgear
- Happynapper
- Posts: 2
- Joined: Wed Mar 13, 2019 4:11 am
Re: Feeling Down
I’ve been on CPAP for many years. I pretend I’m a fighter pilot in my plane. Works for me.