Re: Feeling Down
Posted: Wed Mar 20, 2019 5:14 pm
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.
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