Feeling Down

[ziuaploia]

Hi Everyone,
This is my first post here, and I stumbled across this forum while trying to find some tips and tricks for getting used to using a CPAP machine. I just started with mine about 5 days ago, but I'm having the hardest time adjusting. It isn't the machine itself, or even the mask really, so much as I just feel overwhelmingly depressed that this is my new nighttime life. I don't feel as comfortable at night, I no longer look forward to going to bed, and I just feel sad that going forward I will need to wear this every time I sleep.

I don't want to just pop on here and complain, but I wanted to ask if anyone had any tips for dealing with these changes mentally and learning to adjust. Everything I google is tips on getting used to wearing the mask, or breathing with the pressure, but all of that is going along more or less fine. Did anyone else feel like this when they first started? And did you really just get used to it over time? Or do you still sometimes feel down that you have sleep apnea and require a CPAP machine?

Thanks to everyone who responds, it is very much appreciated.

[the baker]

I too am a newbie, just hit my 30 days and do feel like you, especially in the first few weeks as I struggled to adapt to new sleeping positions..missing how I used to feel in bed...my feelings have been improving somewhat as I get used to it, I haven't adapted to sleeping well with the machine so the sleeplessness doesn't help.. And I suppose as my sleep improves my acceptance of my new circumstances will as well.

I cracked myself up last night woke up with an itchy nose went to scratch it and forgot I was even wearing the mask..bang!!!

[chunkyfrog]

IT GETS BETTER
I promise you.
The trick is getting used to it.
Depression can be deadly, so if you catch yourself with destructive thoughts,
GET HELP! There is no shame in seeking help for depression.
Brace yourself--here comes a big, wet, froggy HUG.

[Miss Emerita]

I think it’s pretty common to feel sad, depressed, or angry that CPAP therapy will be an ongoing part of life. I also suspect that isolation can make these feelings worse, so I’m glad you posted about this. There are lots of us out there who have had similar experiences.

I’m five months in, and somewhere along the line I started feeling as though CPAP is more like brushing my teeth than like a permanent blight on my life. Some of this was getting used to the night-time experience, and some was being able to notice daytime improvement.

I also found it helpful to use Sleepyhead. The data were interesting and allowed me to make some good changes. This in turn helped me feel more in charge of my therapy and less as though it was being imposed on me.

If you could use a little help from a therapist to get you through these early weeks, I hope you can find it. In any event, I’m betting your patience and perseverance will be rewarded. All best wishes to you.

[jnk...]

My getting the diagnosis was traumatic. My first week was panic and dread. Then came the grief.

Now I look forward to sleep and feel a downright inappropriate positive attachment to my machine. The diagnosis and treatment are two of the best things ever to happen to me.

Wearing glasses is a hassle. Flossing is a hassle. In comparison, using the machine during sleep is no hassle at all. It is my secret weapon that gave me back my life.

[zzz1]

I’m two months in so I know exactly what you’re talking about. These feelings were quickly outweighed for me by how good and alert I felt after I started therapy. I remind myself that there are many health benefits beyond feeling alert and awake. That’s what I focus on.

For a week or so I dreaded going to bed. Now I look forward to it. I also remind myself that when I was sleeping without the machine I wasn’t really sleeping anyway. I was struggling to breath and waking myself and my wife up in the process.

[nanwilson]

I was very happy to finally get a diagnosis and help that I was able to go to bed and to finally not be waking up gasping and then not going back to sleep. Once I got the machine dialed in and was sleeping well, I didn't look back, I had gotten my life back to what it was and was looking forward to bed EVERY night.
You will make the adjustment in a few weeks and realize that you are feeling soooo much better that you too will sleep peacefully and be happy to be a HOSEHEAD along with the rest of us.
Cheers and happy sleeping and best of all.... better health!
Nan

[CPAPSteve]

I remember when by pure dumb luck that I found out I had sleep apnea. I was t devastated as I was shocked. I had a choice to do nothing since mine was quite mild or to try cpap therapy. I chose the cpap route knowing it is a proven method for treating osa.

First few weeks were a bit nerve wracking and sleeping with something strapped to my face is obviously very foreign. That being said I didn’t really like using it much but I knew that if I didn’t, that I’d remain this narky, nasty, flustered beeyatch.

I just embraced cpap and talked about it with friends and family here and there and I found it quite helpful. Turned out that my family members were thinking of cpap therapy too or felt they needed to be on it. I also found out a few of my friends had recently started treatment which helped me realize that I wasn’t the only person that needed an alien in my face at night.

It just takes time and most importantly the right attitude. My kids like playing with it and tell me they want to be in cpap too because they think it looks neat - like a fireman!

Rather than being afraid and apprehensive of cpap therapy I just embraced it and took it day by day. Today I cannot possibly imagine sleeping without it. I occasionally miss a night or nap here and there without it but I always pay for it with crappy sleep and a nasty headache when I wake. I have come to love and appreciate my cpap machine and would never think of leaving home without it. The community here is filled with a plethora of technical and support information that can help you through all of this.

Just one step at a time and you’ll eventually get the hang of it.

Wish you the best of luck!

[ziuaploia]

I 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!

[Julie]

Every. Single. Time.

Because every time you don't wear it, you put yourself back in the fog, the arousals (whether you're aware of them or not), the potential cardiac problems, etc. etc.

[snord]

I 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 (89.74 KiB) Viewed 5083 times

[the baker]

Snord: I have that exact set up...I like the blue fabric that you have is that custom???

[snord]

Yes, its custom: needle and thread and pieces cut out of an old fleece coat.

I just wanted ziuaploia to know, if you just keep trying things, little by little things work out.

This sewing project was my way to bond with the machine and make peace with the struggle (and solve the elastic cutting into the back of my head).

[the baker]

Yes, its custom: needle and thread and pieces cut out of an old fleece coat.

I just wanted ziuaploia to know, if you just keep trying things, little by little things work out.

This sewing project was my way to bond with the machine and make peace with the struggle (and solve the elastic cutting into the back of my head).

I try and "bond". When I put it on at night I welcome the healing that it brings and thank the universe ...

[ziuaploia]

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.

I absolutely love this suggestion - I never would have thought of it! Thank you so much. Plus, the idea of not having my room look like a hospital would be huge.