Does anybody else dread going to sleep?

Im2tired · Post by **Im2tired** » Thu Aug 04, 2005 10:59 pm

I dread going to sleep too. I think even before the dx of OSA I subconscienously dreaded it and would get irriated before bedtime. It's been 8 weeks and still I fight with air leaks and the pressure of the mask on my face during the night. I'm on my second mask (1st was Comfort Gel and second Mirage Vista) and thinking I may need another. Some of my problem now is congestion and keeping my mouth open.

Health-wise the last 2 years have been stressful. Starting with cataract surgery and then about 6 months later I was dx'd with celiac disease (an auto-immune disorder where your body treats gluten which is wheat, rye and barley as an invader and attacks your intestines - huge diet change) I thought that was the reason for the fatigue and then 6 months later I was dx'd with rheumatoid arthritis (all this on top of being a type 1 diabetic for over 30 years). Again I thought this explains why I'm tired but didn't explain the brain fog, lightheadedness and cognitive problems. I kept telling all my doctors that something else was wrong with me. I had a MRI and other tests done with still no answers and then the neurologist suggested doing a sleep study. I was grateful for an answer but still it's stressful to have all these health issues to think about and then to not even be able to relax when I sleep! Sometime I put the mask on and the tears just start rolling down my face and I know that doesn't help at all! I know I'll get used to this but right now it all seeems so overwhelming.

Giving up on this is not an option because I know I will have no life without this treatment as I am barely able to drag myself to work everyday. I try to be positive about it but still that feeling of "not another night" of this comes over me.

dsm · Post by **dsm** » Fri Aug 05, 2005 1:48 am

Im2tired wrote:
Giving up on this is not an option because I know I will have no life without this treatment as I am barely able to drag myself to work everyday. I try to be positive about it but still that feeling of "not another night" of this comes over me.

Amen

Yup Im2tired - I agree.

I am wrestling with alligators ...

- one is called aerophagia
- another called flatulence
- another called repetitive burping
- then are the mask leaks
- then I can't keep mouth closed with nasal mask
- bandage tape solution rips lips
- then there is constant nasal congestion
- nasal sprays are complicating congestion by overuse
- at 14cms wife tells me that when I am on my back I just stop breathing & the machines seems to have fits
- set pressure to titration recomm of 15 & all hell breaks loose,
- today my sleep clinic specialist (mrs 'D') says Hmmm, maybe we have to up you to 16cms Arrrrgggghhhh!

But you know what ! - I am having a ball & one way or another will have this xPAP purring like a kitten even if it kills me doing it - but I sure as hell will go down fighting

My 'will' now stipulates that I am to be cremated and that my coffin *must* contain my current xPAP device
-- I'll leave it to you to decide if that is an act of love or revenge

Hang in there - it is worth every bit of effort

Cheers

DSM

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CPAPopedia Keywords Contained In This Post (Click For Definition): Titration, aerophagia

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CPAPopedia Keywords Contained In This Post (Click For Definition): Titration, aerophagia

Sleepless on LI · Post by **Sleepless on LI** » Fri Aug 05, 2005 7:52 am

DSM, God bless you! You have a way of writing that put on smile on my face, even when the content is not really a laughing matter. You are a trooper and you WILL overcome all of this because of your great attitude.

I don't know how long you've been fighting with your cpap machine (and the other battles you wrote about), but you know it takes some people more time than others to adjust. It's just that positive attitude you exude that is going to make you a success. Keep up the great work, really.

Im2tired, please read my post earlier back in this thread. I, too, used to want to cry every night when I'd put on my mask. If you read my post, hope my input can help in you in some small way. My cpap machine is now my best friend, honest to God. Hang in there. It WILL work for you. And best of luck with your other issues, too. Keep posting...

Guest · Post by **Guest** » Fri Aug 05, 2005 11:49 am

But you know what ! - I am having a ball & one way or another will have this xPAP purring like a kitten even if it kills me doing it - but I sure as hell will go down fighting

My 'will' now stipulates that I am to be cremated and that my coffin *must* contain my current xPAP device
-- I'll leave it to you to decide if that is an act of love or revenge

I don't think I quoted correctly! I'm also involved in on-line support groups for insulin-pumpers and celiacs and they are all different.

Anyway, your comment about being buried with your CPAP cracked me up. I don't feel so alone knowing that I'm not the only one facing this challenge. On the other hand I do find it sad that there are so many of us that go undx'd for so long and suffer so much. It's the same with celiac disease. I probably had it for 15 years before dx and the average is 12 years. I consider myself one of the lucky ones to know that I have these 2 diseases that often go undetected. I'm 47 and I don't think I would have made it to 50 without knowing about these diseases and starting the treatment (gluten free diet for celiac and of course CPAP for OSA). I know it's counter productive to look back and be sad about how much I struggled and how much research I did to try to find out what was wrong with me. Still it is a loss in my life of time that I can't gain back and it effects my self esteem that I have not been productive at work for so long and it's been hard on the people I care about most.

Thanks to everyone for caring.

WAFlowers · Post by **WAFlowers** » Fri Aug 05, 2005 11:54 am

I don't dread going to sleep; I dread waking up feeling like I did yesterday and all the days before I got my machine!

Im2tired · Post by **Im2tired** » Fri Aug 05, 2005 12:07 pm

That last post was me. I forgot to log in!

Thanks Sleeples on LI - Your post and success is inspiring and it does help to know others have struggled and then gotten comfortable with the mask, etc. and feel the benefits of a good nights sleep. When I had found out about having OSA and read about the health risks, I was really afraid to go to sleep so I have never not used the CPAP since I got it. I was really feeling "not right" and thought maybe some heart trouble was pending.

The first night after using it I heard the Elton John song "Someone Saved My Life Last Night" and I really felt that the dr. who recommended the sleep study saved my life.

Thanks for your support.

WAFlowers · Post by **WAFlowers** » Fri Aug 05, 2005 12:35 pm

Im2tired wrote:The first night after using it I heard the Elton John song "Someone Saved My Life Last Night" and I really felt that the dr. who recommended the sleep study saved my life.

As I was about to go into my the lab for my CPAP titration I heard Anna Nalick sing her new song "Breathe (2AM)" which has a refrain of:

Breathe! Just breathe!

It's my new anthem.

sir_cumference · Post by **sir_cumference** » Fri Aug 05, 2005 1:01 pm

'To sleep, per' chance to dream.' And yet, to dream can be such hard work!

I've found that even on xPAP there have been times when dreams are so vivid and wild, and then at other times I may not have dreamed at all.

yawn, I love that you are so open with your struggles and trials, it is a compliment to us that you trust us with your problems. YOu may find at times you struggle when you didn't expect it, or your anticipation and worry about sleep become the real barrier to sleep. Time is a great healer - be patient and maybe over time familiarity will bread contempt and you will go to bed, put the mask on and not even think about xPAP - that is a fast way to quality sleep.

Bill - So pleased your machine and mask(s) arrived - if possible, to get to sleep with this machine that you have been anticipating for so long, just try and think about ANYTHING ELSE THAN xPAP! The more you think about it, the harder it will be to sleep. And as you said else-where - your wife will appreciate your sleep!

sir_cumference (to CPAP what sand-paper is to personal hygiene)

Sleepless on LI · Post by **Sleepless on LI** » Fri Aug 05, 2005 1:40 pm

Im2Tired:

Thank you for your sweet words. I don't know about inspiring, but I just wanted others to know how I think we all feel the same in the beginning to a certain extent, but it can change SOOO much. It did for me and I was hoping that it may help to make someone else feel better reading that it can.

It really helps to put all your other problems in perspective, too, once you have this afflication. But overcoming it and finding out it's not the end of your world, but the beginning of a new and healthier, happier way of living is a real enlightening feeling. And for me, it was the start of living a far more healthier lifestyle. Wouldn't have done it if not for the diagnosis, at least not this soon.

I just want all my friends on this site to be feeling as great as I do now. And anyone who isn't, stick with it and eventually in time you will, too.

WAFlowers · Post by **WAFlowers** » Fri Aug 05, 2005 1:54 pm

sir_cumference wrote: Bill - So pleased your machine and mask(s) arrived - if possible, to get to sleep with this machine that you have been anticipating for so long, just try and think about ANYTHING ELSE THAN xPAP! The more you think about it, the harder it will be to sleep. And as you said else-where - your wife will appreciate your sleep!

That's like telling someone to not think about a pink elephant. After that, you can't think of anything but!

My wife is at the church for a ladies night (2 movies and snacks) and my daughter is at a concert, so my son and I are taking one of the Miatas to a Friday night car club meet then maybe home for some mindless guy's movie (SF, horror, adventure, whatever). With that sort of relaxation I just might be able to distract myself from the pink elephant beside my bed.

Grabraham · Post by **Grabraham** » Fri Aug 05, 2005 2:00 pm

Think about being a Fighter Pilot!!

Or flying Tie Fighters for the Empire!!!

WAFlowers · Post by **WAFlowers** » Fri Aug 05, 2005 2:12 pm

LOL! Actually the Swift reminds me so much of a snorkel that I was flashing back to some of my best dives. Like snorkelling a reef at Cozumel or Stingray City in Grand Caymen. Or the first open water dive with my newly certified daughter. Or diving the Weeki Wachee spring between mermaid shows and doing an underwater waltz with my daughter (which my wife caught on video tape through the viewing window).

These and many more are great memories to go to sleep with.

Is it bedtime yet? I wanna go to sleep and dream of diving!

dsm · Post by **dsm** » Fri Aug 05, 2005 4:07 pm

Sleepless on LI wrote:
I don't know how long you've been fighting with your cpap machine (and the other battles you wrote about), but you know it takes some people more time than others to adjust. It's just that positive attitude you exude that is going to make you a success. Keep up the great work, really.

Sleepless, thanks for the kind words. I am a real newbie just coming up to 4th week in harness

Re fighting with my machine. Actually it is my friend in this & it is also working to help, its just the coming to grips with it for both of us that is the challenging part.

It is pretty clear to me that all of us go through this type of initial familiarization. Compared to having serious gum surgery (that really did depress me), CPAP is not too bad to come to grips with.

Cheers

DSM

Im2tired · Post by **Im2tired** » Fri Aug 05, 2005 4:11 pm

I snorkeled at Stingray City in Grand Caymen. It was better than the 1st time I snorked in the Bahamas when I just paniced to put my head under water and breath - it goes against your natural instinct to hold your breath under water.

My boyfriend calls my mask my Darth Vader mask and one night he said "Could you wear the Princess Leia mask tonight?" LOL, at least we can laugh about it. I don't like the isolated feeling I have once I have it on and am hocked up and can't talk. I've been sleeping with an insulin pump for 6 years and a night splint to strech out my foot for about a year. I think there should be a limit to the number of medical devices you have to wear to bed! I also think there should be "lemon" rule with your body and if you have more than 3 things wrong you would get a new body. Cosmetic problems and things like a saggy butt would be excluded!

Sleepless on LI · Post by **Sleepless on LI** » Fri Aug 05, 2005 5:28 pm

DSM writes:

Compared to having serious gum surgery (that really did depress me), CPAP is not too bad to come to grips with.

See? Exactly what I'm talking about. Keep that great sense of humor and you're going to do just great![/img]

Mask