Does anybody else dread going to sleep?

[yawn]

I'm so tired right now but I dread going to bed. I don't want to face the machine and mask. I also don't want to face waking up tomorrow and still not feeling better.
I used to hate going to sleep because it never seemed to make me feel rested and I had terrible dreams all night long. I felt like I was never getting any sleep. Now, I find that I just don't want to deal with the mask etc. and I still have the dreams. They are such active dreams (last night I was trying to find my way home from a friend's house but I kept getting lost and couldn't find my way....that's a very tame dream for me...they're usually very violent)
Does anybody else fear/dread sleeping?

[dsm]

Amy,
That dream seems to be an accurate portrayal of how you are feeling.
The violent ones may well be your deeper self venting frustration.

Your posts here are painting a fairly clear picture of someone wanting to get away from a very distressing siutation.

Is there any chance you can get away from the kids/family for a few days ?.
How about close relatives
Do you have any good family support groups who might help ?.

Would love to be able to help in some way but beyond the above words don't know how else to do so.

Good luck & keep talking about it. That may be the only but best way for now.

Cheers

DSM

[yawn]

Hi DSM...interesting insight (and very accurate). I didn't realize I was sounding so stressed out. I guess I am but, believe it or not, my life is actually calmer than it used to be. We moved into a new house a year ago because our old house was very "sick" and it was making our children sick. We had built the house but the builder took a lot of short cuts and it became a 4 year nightmare. It's a long sad story. We finally decided to abandon the house (on our attorney's advice). We had to file for bankruptcy to get out of the mortgage obligation. It was a really horrible time. We lost all the money we put into the house but it was worth it to get our kids into a "clean" house (our daughter was actually bleeding internally from the mold in the house). The stress got to my hubby and he had a heart attack!! We're now trying to recover from the damage of filing for bankruptcy but it's difficult. And our medical bills just keep rolling in. I hate where we live...I don't have any close friends that I can talk to about problems so everything stays bottled up inside me. Therapy would be great but I don't have the time or money.
I think I'm one of those people whose lives are always plagued with problems. I keep hoping that it will eventually all get better. I struggle with the idea that OSA is a serious problem. I thought it just meant that I didn't sleep well and was tired all of the time. I didn't understand the health issues and I guess that's what's stressing me out the most. Like most Moms, I put my needs behind the needs of my hubby and children so it's hard for me to make treating my OSA a priority. I have a lot of stuff on my plate and don't feel I have the time for this. I know, I need to make the time.
My hubby and I are actually running away this week-end. He had enough frequent flyer miles so our hotel will only cost us $50 for two nights. We're going to see old friends so hopefully that will be relaxing and therapeutic.
I appreciate your insight and advice DSM. It's so nice to know that people care!!!!!
Have a great day!! Amy

[Cyngen]

Amy,

I'm sorry to hear of the issues and trials you've been going thru. I sort of dread going to bed at night because of the mask.

But yet again it is the mask that is the culprit. My dad passed away two years ago and was on oxygen full time the last 6 months of his life. He started out slowly and it got to where it was needed full time. In my mind, i'm doing flash backs to his situation and seeing me in that scenario. Unrational fears, but a fear none the less.

The first night was horrible for me, but over the last week or so I've gotten a bit more accustomed to it.

Hang in there, you'll make it.

[lindas88]

Amy...sounds like you're having another bad day....is the heat still getting to you? I used to dread going to bed before I got my cpap machine....I used to be awake all night and every night seemed so darn long. And then I got the mask...I then dreaded going to bed because of that but just kept at it. Now I look forward to going to bed....it has been two months on cpap now and I am really finally starting to sleep better. I'm still not thrilled that this will be the rest of my life. I am slowly getting off my sleeping pills and that is my next goal...to be off all pills that helped me sleep. I am in a much better place then I was two months ago.

Sometimes when I feel down I sit by myself and think of all the things I should be thankful for...there is a lot more good then bad. That makes me feel better about things that may not be right at that moment. My family has a family journal that we try to write in everyday....we each have a turn (after supper) to write down 5 things we are thankful for....it makes you realize all the things that you should be thankful for and sometimes we aren't. Maybe you could try that.

I think that is great that you and your husband are going away....enjoy yourselves....it will probably be good for you but don't forget to take your mask....

[yawn]

Hi Lindas88 and cyngen,
My day really isn't going too badly...it's stressful but I'm getting things accomplished. I just got back from my DME...I'm going to be trying out the Swift next. I hope this one works out. I'm still doing ok with the Activa but would like to have options.
Cyngen, you talked about your father. I worry about ending up like my Mom. A year ago we found out she needed quadruple bypass (never knew she had a heart problem) and it didn't go well. They had to do open heart surgery 3 times in 1 day. It's really a miracle that she survived. She had high blood pressure for as long as I can remember along with high cholesterol. We found out about the heart trouble and sleep apnea when she collapsed one day (broke her wrist and needed surgery to repair it). She tried to use her CPAP but just couldn't get used to it. Unfortunately, I don't think she had any options for her machine or mask. She doesn't even know what her pressure was set at. It's too bad she doesn't live closer to me because I bet I could really help her...my DME is very good about letting me "try" any mask I want. I certainly don't want to go through the health issues that my Mom has. I'll stick with using my mask...I don't feel I have any other choice.
Lindas88...I do count my blessings. I guess I've been in a funk lately and I don't really have anybody to talk to about my problems. This board makes it so easy...I guess I took advantage. Your family journal is such a great idea! You're definitely right, we have to look at the positive more than the negative.
Have a great day! Amy

[lindas88]

No Amy...you were not taking advantage. I can see that you don't have a lot of people to talk to...I was just trying to help. I don't know much about machines and masks so I try to give support....we can give each other support. I think you just need time to get back on track....yes, the journal is a great idea. It helps the children appreciate things more too. I got the idea from Oprah....

[Cyngen]

Amy,

I like the board as it does give an outlet for the stress and frustrations we all feel at times. It is nice, at least for me, to find others with the same issues, and know i'm not the first or alone in it.

I will say I've approached this with the same humor I've used most of my life when faced with issues. I'm now looking for a darth vader setup for halloween. I figure with the cpap and a mask I can get the mechanical sound down pretty well

On a funny note, well to me anyways... the other nite I was getting ready to sleep, had the mask on and then remembered I neeed to remove my contacts. I just left the mask in place, disconnected the hose and headed to the bathroom. My dog took one look at me and began barking up a storm till she realized it was me

Take care. C

[SickAndTired]

Amy: I can definitely sympathize with not having anyone to talk to about this stuff, since sometimes just having someone nod and grunt while you vent/rant can be an incredible relief.

Unfortunately, I'm in the same situation...

Lost the last of my family (at least that portion I gave a damn about) more than a decade ago. I've also never made friends easily, and time and distance has pared down a small group of people even further. Add to this, my best friend hasn't had as much time to 'pal around' ever since she got married a few years ago (has it already been 6?). But I really shouldn't complain about that last one, since I was the one who introduced her to her husband, another one of my friends! <grin>

I also can't afford the time or money for counseling, so until I have an insurance policy that covers it or manage to hit the PowerBall (which both seem equally unlikely), I'm forced to find alternate outlets.

My point is that I've come to see the better SIG (special-interest-group) forums as great places I can satisfy my stifled need to 'share'.

There are probably some pop-psych terms that describe the where/whys/whatevers of this phenomenon... but since I've always hated pop-psychology (the real stuff is bad enough), I think I'll leave it there and close by saying that you should feel free to pull up a couch around here anytime you need it! <grin>

[SnoreNoMore2005]

I used to dread going to sleep because I would wake up in the wee morning hours and lie awake for hours and get up feeling completely exhausted. Every night I felt like a failure because I couldn't sleep or get any relief from my exhaustion. The anxiety over not going to sleep made me sleep even more poorly which made me more exhausted which made me even more anxious which... well you get the idea.

I have found that after 8 weeks the AutoPap has restored my life. Now I enjoy and even look forward to going to bed. Wearing the mask was a very small price to pay to start to get my life back.

If you're not finding this type of relief, it could be that the CPAP therapy is not working properly for you or maybe you have a condition that the CPAP is not addressing. I would consider that and also look at why the mask is such a problem for you.

I should also add that during my first two weeks with a CPAP, I was fairly miserable. When I switched to an AUTOPAP, it was like a night and day improvement.

Just my 2¢ worth
SnoreNoMore2005

[Sleepless on LI]

Amy,
Please use us all for your sounding board. Sounds like you already have quite the following of people here who care about you and what you're going through. If you will allow me, I will give you a bit of background of what happened with me which MIGHT make you feel better.
I felt exactly like you did in the beginning. Nights were a time where I'd start feeling depressed, bedtimes especially. When I was first diagnosed with OSA, I was so happy because there now was finally an explanation/reason for me to be feeling like I was feeling and to be having borderline high BP at too early an age. But when I finally began therapy and saw what it meant every night, and what it would mean every night from now on for the rest of my life (or so I thought), I became what I can only call depressed. The exhiliration of correcting my lifestyle waned and I started to feel so sad and depressed. Every night when I'd put on my mask, it would take all I had to keep from crying. I felt like I looked ridiculous in front of a man I've been with for 30 years, married for almost 25, and the thought of having to have a hose restrict my movements and pressure sores from masks and all the other things that were happening was almost too much to bear.
Okay. Here's the light at the end of the tunnel. I have now been on CPAP therapy for two months. No, not a world's record but it's long enough to have changed, LITERALLY, my entire life. I found the right mask (a must!!!, no matter how many different ones you have to try to find it), got a great machine and got more energy back than I can remember having in years. Not only did my energy level return, but with it came the oomph to exercise, think clearly, lose my fatigue, eat right and want to get myself physically back into the shape I used to be in when I taught as an instructor at a gym when I was in my early twenties. I'm now 48. I have been "dieting," which I don't like to call it because it is now my new eating style, and exercising on my recumbent bike three times a week for 45 mins. each day since July 3rd and have lost 8 lbs. already. For a woman who needed to lose about 25 lbs., that's not too bad. I look better, I feel better and mentally am as good as it gets. My BP is now down to about 117/76 without meds, although it fluctuates, but stays within normal limits 99% of the time due to oxygenation the CPAP machine gave me back.
I did go to an ENT a few weeks ago who examined me and said I have no anatomical reason for being on CPAP, so he thinks it could be the extra 25 lbs. I put on. Although that is not a lot of weight normally that would cause someone to have OSA, when you were very, very thin and in shape your whole life, 25 lbs. is enough to do things to your body, or so he believes. He thought if I kept up the exercise and the eating right, perhaps by Labor Day I wouldn't need the therapy anymore.
Well, on 7/28, got my Remstar Auto with CFlex and bought the software and card reader to see how I'm doing, which is the only way anyone on CPAP should be on CPAP. Otherwise, to me, it's like sleepwalking. You have no idea what is happening when you're asleep. I have found out that my AHI is so low that it's considered normal. Members on this site have told me anything under a 5 AHI is considered normal. Mine has been, since 7/28 - 8/2 (last night) between 1.3 - 3.00. For all intents and purposes, I may be able to stop the therapy. I will do a split study in about a week with this machine and see if the machine is really necessary still.
Here is the kicker: I don't want to stop CPAP. That was my one and only goal when I started to lose the weight, was to get off the machine. But that same machine that used to cause me such sadness and depression every night is now honest to God my best friend. That machine has done for me what nothing else in the world could have done: Gave me the energy to take my life back. Healthier, happier, full of energy...what more can you ask for? That the people you love feel as good as you do. That's a perfect world in my book.
So, Amy, please don't feel sad. After awhile, when you finally start reaping the benefits of the machine/therapy, you will realize what a blessing it is in this day and age to have something treatable and that can make your quality of life so much improved. We are all here, as I said, to vent to, to lean on and to just communicate with for whatever reason you may feel you need to. This site was my support line in a time in my life when I felt more lost than I could believe. Even if I do get off the machine, I still plan on sticking around to help out people who need it with whatever info I can provide. That's the only way I feel I can pay back some of what I've taken from here.
Please feel free to PM me if you need to talk and don't want to on the boards. But everyone improves in their own time, and you will, too. Just like no one mask is perfect for everyone, everyone finds results in different ways, too. And maybe you don't feel energized yet, but has your fatigue lessened? That's how I realized I was starting to improve. Although my energy wasn't enormous, my fatigue was gone.
I truly wish the best for you and your family. And try to keep a stiff upper lip and a positive attitude. That was the only thing that saved me, the knowledge that it takes time and it was going to work for me, no matter how down in the dumps I would tend to get at times. We all wish you the best.

[lindas88]

Wow, great reply Sleepless on LI...I am so happy for you that you may get off treatment. I am now wondering if I get off weight if that could be the same for me...don't I wish. I only have about 30 lbs to lose...but that seems so much right now. I am just getting used to all this and am starting back to work in about 1 month...maybe then it will be easier to get some weight off. That was a great support post...

Also great support from SnoreNoMore2005, SickAndTired and Cyngen...and Yawn, I have seen great support post from you too.

[Sleepyman]

I struggled with cpap and especially the mask, I kept taking it off, sometimes in my sleep. But once I found a mask that was comfortable<swift> I have made rapid progress and wonder if I'm using cpap too much. I could take naps morning and afternoon on the weekends, it just feels so good.
Since I adjusted to the mask my variable breathing has leveled of at 32%, was between 10-80, but never the same my RT says thats not good sleep and probably REM rebound. Search mask here it's the finest feedback/advice you will get from real users not opinionated DME's & DR's who sold out to only represent one brand and have never worn a mask.
If that doesn't work read all of Rested gal's post she's the BEST.

[Sleepless on LI]

Linda,
Thanks for the kind words. I meant every word I wrote. I L-O-V-E this site. It was my salvation. as I'm sure it is and will be for so many other lost souls who get diagnosed with OSA and don't know where to turn. The support you find here is just incredible. This is a place for people who care about other people and are here to make sure we are not alone.

As for your losing the 30 lbs., do what I did, please, and go see an ENT to do a full exam (included sticking this probe with a light down both nostrils into the throat-not pleasant) and see if you have an anatomical reason for your OSA. He couldn't find one for mine and we both deduced the weight may be the culprit. So far, it seems to be working in that direction. It may not just be weight-related for other people, including yourself. But honestly, if I don't get the "okay" to get off the machine, then so be it. I have really come to rely and be used to it nightly now and I meant it when I said there are so many worse afflictions out there that, God forbid, we could be diagnosed with.

I say go for the 30 lb. weight loss anyway. There is nothing negative about shedding extra pounds that we've put on. And like I've said, the most negative thing that can come about now is that I won't get off the therapy, but I'll look a hell of a lot better when I wear that mask to bed ( ).

Good luck and keep us "posted."

[Sleepless on LI]

Sleepyman, I'm with you on the Swift. Since I got mine, it has made a world of difference. When you don't feel leaks all night, you don't have to wake up to adjust them. Ahhhh....

And we are in total agreement about RestedGal. They don't come much kinder and more knowledgeable than she.