I'm so discouraged today. I feel like I didn't get any sleep at all last night. I have no energay and just want to cry (hormones maybe???). I know I spent some time fiddling with my mask but my memory's kind of fuzzy on what was happening. I do know that I was snoring at one point this morning because I woke myself up. As far as I know, this was my first time snoring since starting CPAP. I'm at the point where I'm just plain tired of all of this. Will I ever get to the point where going to sleep isn't stressful? Where I'll sleep all night as if in a coma? Not wake up to attend to my mask/machine/tubing? Wake up happy and refreshed?
When I saw my Dr. last week, I had tons of questions for him and he couldn't answer any of them. He's sending me to a Pulmonologist next Tuesday. I hope this guy can help me...answer my questions...maybe let me get an APAP so I can see what's going on. Anybody got any encouragement??? I need it today
Thanks...Amy
Is this ever going to get easier?
Amy, just like people without sleep apnea we are going to have good nights and bad. It is a part of life. Two nights ago was probably the worst night I'd had since I started (just a week ago). I knew that would happen sometimes, so I just went with it and planned to go to bed early last night.
Of course that wasn't to be; I was at the office until 1AM and was only at home long enough to get 4 hours sleep!
I hate to suggest it, but it sounds like you are "psyching yourself out". That is, you ask "Will I ever get to the point where going to sleep isn't stressful?" It sounds like you are expecting tonight to be stressful. So, of course, it is because you are stressing about it. And if you are trying to go to sleep stressed you can't get to sleep and when you finally do you don't sleep well. So you fret about it the next day, which feeds back into it.
This has become a self-fulfilling prophecy for you. In engineering terms you have setup a positive feedback loop, like a microphone too close to a speaker.
I don't know how to solve this for you, but you need to find some way to learn to relax and accept whatever happens, good or bad. Recognize that it won't all be good, but even the bad nights with CPAP will be better than any night without. If you can learn to accept this as a significant improvement in your condition and rejoice in any improvement, maybe the rest will follow.
Does this sound too much like pop-psyche self-help? Maybe. But maybe there's some truth in it too.
I do know that the "glass half full" attitude I am taking is working for me and paying spectacular benefits. I hope you can find some way to make it work for you too.
Of course that wasn't to be; I was at the office until 1AM and was only at home long enough to get 4 hours sleep!
I hate to suggest it, but it sounds like you are "psyching yourself out". That is, you ask "Will I ever get to the point where going to sleep isn't stressful?" It sounds like you are expecting tonight to be stressful. So, of course, it is because you are stressing about it. And if you are trying to go to sleep stressed you can't get to sleep and when you finally do you don't sleep well. So you fret about it the next day, which feeds back into it.
This has become a self-fulfilling prophecy for you. In engineering terms you have setup a positive feedback loop, like a microphone too close to a speaker.
I don't know how to solve this for you, but you need to find some way to learn to relax and accept whatever happens, good or bad. Recognize that it won't all be good, but even the bad nights with CPAP will be better than any night without. If you can learn to accept this as a significant improvement in your condition and rejoice in any improvement, maybe the rest will follow.
Does this sound too much like pop-psyche self-help? Maybe. But maybe there's some truth in it too.
I do know that the "glass half full" attitude I am taking is working for me and paying spectacular benefits. I hope you can find some way to make it work for you too.
The CPAPer formerly known as WAFlowers
WAF"s advice to Amy...............
Amy:
In my opinion WAF has given you some great advice and caring insight in the above post to you. i have been at this more than 11 yrs and i beleive "YOU WILL SUCCEED" ! what WAF said about having a good attitude is most important! One day at a time and you will get to a successful conclusion to this cpap deal, in my opinion!
my best to you!
steve,
ufo13
In my opinion WAF has given you some great advice and caring insight in the above post to you. i have been at this more than 11 yrs and i beleive "YOU WILL SUCCEED" ! what WAF said about having a good attitude is most important! One day at a time and you will get to a successful conclusion to this cpap deal, in my opinion!
my best to you!
steve,
ufo13
_________________
| Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear |
| Additional Comments: Also use ResMed N30 and ResMed P30i |
Amy, also please know that I'm not saying that "it's all in your head". You could be having some very real underlying issues (such as not getting into Stage 3 and 4 sleep) that certainly should be investigated.
Maybe the pulmonologist is the right person who can help you. I hope so. Please let us know how it goes.
Maybe the pulmonologist is the right person who can help you. I hope so. Please let us know how it goes.
The CPAPer formerly known as WAFlowers
Amy,
1st of all, it's cooler here in Chicago today. How about by you? I know my outlook always gets better when I can get outside some.
2nd, yes, you will begin to feel better. I have been doing this about 7 months now and still wake up to adjust, etc. a couple of times each night. However, even with that I am improving some every day. (Of course, the surgery/shingles/sick kids/heat/and now yellow jackets in the ceiling right over my head has made it a long summer!) Try not to think about it too hard. You are doing all the right things. You are seeing Drs, working with the mask, and getting support. Maybe you need some tweeking. Maybe you need to take some Benedryl or something else for a few nights to relax yourself until you are more comfortable with the mask. (PLEASE don't anyone scream at me for suggesting that. But, I would not be sleeping if it weren't for my nightly Trazadone.) You CAN do this! You WILL feel better!
Hang in there.
Sue
1st of all, it's cooler here in Chicago today. How about by you? I know my outlook always gets better when I can get outside some.
2nd, yes, you will begin to feel better. I have been doing this about 7 months now and still wake up to adjust, etc. a couple of times each night. However, even with that I am improving some every day. (Of course, the surgery/shingles/sick kids/heat/and now yellow jackets in the ceiling right over my head has made it a long summer!) Try not to think about it too hard. You are doing all the right things. You are seeing Drs, working with the mask, and getting support. Maybe you need some tweeking. Maybe you need to take some Benedryl or something else for a few nights to relax yourself until you are more comfortable with the mask. (PLEASE don't anyone scream at me for suggesting that. But, I would not be sleeping if it weren't for my nightly Trazadone.) You CAN do this! You WILL feel better!
Hang in there.
Sue
_________________
| Mask | |
 |
I know all of you are right. A positive attitude is always best and I've been trying to do that. Like you said Bill, we all have good days and bad days. I guess the bad ones hit me harder. I get so frustrated when I'm tired because I always have so much to do and it's hard to function well when my mind and body won't cooperate the way I want them to. I can't imagine trying to function on just 4 hours of sleep....I feel physically ill if I don't sleep at least 6 or 7 hours. I tip my hat to you Bill .
As always, thanks for the kind words and wisdom. I will try and turn my frown upside down ....and go eat a salad. I've been trying to "diet" and exercise everyday...fear of surgery is a great motivator.
Amy
As always, thanks for the kind words and wisdom. I will try and turn my frown upside down ....and go eat a salad. I've been trying to "diet" and exercise everyday...fear of surgery is a great motivator.
Amy
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sir_cumference
- Posts: 240
- Joined: Wed Jun 29, 2005 10:47 am
- Location: UK
Dear Amy
Why not start a diary? Decide what things matter to you and that you can measure each day for example:
How I feel: Now = 5 then you can get worse and you can get better!
How many hours I slept:
How many time I woke up:
My pressure:
My AHI:
How much I was able to do today:
Don't have too many measures as it will take up too much time. But if you have a diary that you fill in when you wake up ... How many hours etc. and when you go to bed ... How much I was able to do today, then you can map your progress and see week to week how you are doing. This would also be great evidence to show to any sleep doc etc if needed.
Then (yes there's more) use the diary to help set up a sleep/wake routine. Our bodies work best when in routine, so if when you wake you start with the diary and then a cup of tea, or the other way around, and at night you have a hot drink, diary, sleep, you could set up a routine that might help. Also, by writing it down you actually unload your mind of the problems you're facing and can rest more easily.
And one more thing. And this is almost impossible, but hey, it's worth a try ... when you go to bed and start the machine, think about something you did during the day, something positive or different or ... it doesn't matter what, just not PAP! Bill once described this as not concentrating on the pink elephant in the room!! but it is worth the effort because sometimes our pre-occupation with our treatment is what actually makes it fail.. so think about anything else, remember what you did that day etc. etc.
I know this is a lot of effort, but it's worth a try..
Oh, and one other thing to add to your diary last thing at night ...
The best thing I did today was .... (finish with anything but PAP).
sir_cumference (distracted)
Why not start a diary? Decide what things matter to you and that you can measure each day for example:
How I feel: Now = 5 then you can get worse and you can get better!
How many hours I slept:
How many time I woke up:
My pressure:
My AHI:
How much I was able to do today:
Don't have too many measures as it will take up too much time. But if you have a diary that you fill in when you wake up ... How many hours etc. and when you go to bed ... How much I was able to do today, then you can map your progress and see week to week how you are doing. This would also be great evidence to show to any sleep doc etc if needed.
Then (yes there's more) use the diary to help set up a sleep/wake routine. Our bodies work best when in routine, so if when you wake you start with the diary and then a cup of tea, or the other way around, and at night you have a hot drink, diary, sleep, you could set up a routine that might help. Also, by writing it down you actually unload your mind of the problems you're facing and can rest more easily.
And one more thing. And this is almost impossible, but hey, it's worth a try ... when you go to bed and start the machine, think about something you did during the day, something positive or different or ... it doesn't matter what, just not PAP! Bill once described this as not concentrating on the pink elephant in the room!! but it is worth the effort because sometimes our pre-occupation with our treatment is what actually makes it fail.. so think about anything else, remember what you did that day etc. etc.
I know this is a lot of effort, but it's worth a try..
Oh, and one other thing to add to your diary last thing at night ...
The best thing I did today was .... (finish with anything but PAP).
sir_cumference (distracted)
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WillSucceed
- Posts: 1031
- Joined: Sun Nov 07, 2004 7:52 am
- Location: Toronto, Ontario
Amy:Why not start a diary?
When I am dealing with patients and families at work, I often encourage them to start journaling as a way of managing anxiety. Specifically, I encourage them to develop a night-time routine that includes doing whatever they have to do to get ready for sleep, (for us, that includes setting up the PAP unit) and to give themselves some time to write in their journal.
The journal is a good way of keeping track of the important events of the day. Reviewing this info helps us to see small progress that we might overlook when we are feeling overwhelmed by something else. Also, by recording your concerns, worries, things that you have to remember tomorrow, before you go to bed, you deliver a clear message to yourself that you don't have to worry about these things while you sleep -you can forget about them and not be worried that you won't remember something important tomorrow.
I know that journaling sounds corny but, I can honestly tell you that when I get post-discharge phone calls and visits from the stressed-out parents of horribly injured children (I work in the CCU of a large children's hospital) they tell me that journaling before sleep was one of the things that helped them cope the most.
I remember when I started CPAP treatment I was so overwhelmed that I thought I'd never get any sleep. I remember looking down at the CPAP unit and saying, out loud, "you and I are going to get along tonight." Hence, the name I chose for this forum. I started keeping a journal in which I recorded everything that I thought had an impact upon my sleep as well as whatever else was going on in my life.
I think the journal was a big part of me figuring out 'best treatment' for me and, helped me to turn the CPAP machine into something that is working for me rather than something that I was afraid of.
Hang in there!
_________________
CPAPopedia Keywords Contained In This Post (Click For Definition): cpap machine, CPAP
Buy a new hat, drink a good wine, treat yourself, and someone you love, to a new bauble, live while you are alive... you never know when the mid-town bus is going to have your name written across its front bumper!
Hi Sir_C,
I was keeping a sleep diary (I think Bill had suggested it) and when I brought it to my Dr., he really wasn't interested in it. That kind of discouraged me. I am planning to bring it to the pulmonologist next week...I hope I get a better response from him
I like your idea of reviewing the good things that have happened and concentrate on what was accomplished vs. what wasn't. Usually, when I turn my machine on, it kind of sounds like the ocean so I pretend I'm at the beach. Last night, it sounded different...definitely not ocean sounds and, once again, my mask smelled funky (why can't they make them smell like cookies or vanilla?) so maybe that's why last night didn't go so well. I gave the mask and tubing a thorough cleaning (which I do everyday anyway) so hopefully they'll smell better. I'm not sure why the machine sounded differently...it just seemed to be louder last night.
I told my son that I'm not going to try and accomplish much of anything because everything I touch turns to "doo doo". I went to pull some chicken out of the freezer and a brand new bag of chicken nuggets opened itself up and deposited the nuggets on my kitchen floor. I got that cleaned up and then went to put together a fruit salad. Of course, I dropped raspberries down the front of my WHITE shirt (which I had just put on...it's a pain in the neck to wash and iron...yes, I have to iron it...trust me on this). I decided to just give in to the bad luck today and have absolutely no expectations. Usually this type of luck only lasts one day at a time for me...tomorrow has to be better!!! With any luck, I'll just start laughing at all the stupid things that happen to me today.
Sue: I didn't realize your kids ended up getting sick...did they get the Pox? How are they (and you) doing now? At least they'll never get it again. Our weather is still incredibly hot and humid...there are severe thunderstorms just north of us right now...I hope they come water my yard so I won't have to. As far as taking something to make me sleep, I already do take something at night that has sleepy side effects so I take it right before I go to bed. So falling asleep usually isn't a problem for me.
Thanks...Amy
I was keeping a sleep diary (I think Bill had suggested it) and when I brought it to my Dr., he really wasn't interested in it. That kind of discouraged me. I am planning to bring it to the pulmonologist next week...I hope I get a better response from him
I like your idea of reviewing the good things that have happened and concentrate on what was accomplished vs. what wasn't. Usually, when I turn my machine on, it kind of sounds like the ocean so I pretend I'm at the beach. Last night, it sounded different...definitely not ocean sounds and, once again, my mask smelled funky (why can't they make them smell like cookies or vanilla?) so maybe that's why last night didn't go so well. I gave the mask and tubing a thorough cleaning (which I do everyday anyway) so hopefully they'll smell better. I'm not sure why the machine sounded differently...it just seemed to be louder last night.
I told my son that I'm not going to try and accomplish much of anything because everything I touch turns to "doo doo". I went to pull some chicken out of the freezer and a brand new bag of chicken nuggets opened itself up and deposited the nuggets on my kitchen floor. I got that cleaned up and then went to put together a fruit salad. Of course, I dropped raspberries down the front of my WHITE shirt (which I had just put on...it's a pain in the neck to wash and iron...yes, I have to iron it...trust me on this). I decided to just give in to the bad luck today and have absolutely no expectations. Usually this type of luck only lasts one day at a time for me...tomorrow has to be better!!! With any luck, I'll just start laughing at all the stupid things that happen to me today.
Sue: I didn't realize your kids ended up getting sick...did they get the Pox? How are they (and you) doing now? At least they'll never get it again. Our weather is still incredibly hot and humid...there are severe thunderstorms just north of us right now...I hope they come water my yard so I won't have to. As far as taking something to make me sleep, I already do take something at night that has sleepy side effects so I take it right before I go to bed. So falling asleep usually isn't a problem for me.
Thanks...Amy
WAF is giving some good advice, as is WillSucceed. I would like to relate a story about when I used to teach people how to ride a motorcycle. There was an exercise that was in the lesson plan that was used to give people confidence in their ability to control their motorcycle. I would set small traffic cones eight inches apart and every six feet for a distance of about 60 feet. The object was for each student to ride their motorcycle down a straight line between the cones without touching any of them. I would stand about 20 feet directly behind the last set of cones. Most students would knock over almost every cone the first time they tried to ride between the cones. After I had them do just do one simple thing, which was to look up at me and ride directly towards me no student failed to successfully complete this task. The secret was that all they had to do was look up and not down at the cones and they could ride right through the this obstacle course. When you keep your journal be sure to look as far back as you can and as far forward as possible. This might allow you to look beyond the present time, that consists of real discomfort and pain, to see and gain confidence in being able to feel the good things again.
Amy, I have no solutions, but just want to say that I feel exactly the same way today! I actually DID cry this afternoon. I started out really really well and now things seem to be going downhill rapidly. Nothing I did today was easy, it seems like it took twice as long as usual. My attitude has always been positive, that this was a challenge to be faced and mastered. Last night was HORRIBLE and I am already dreading tonight. Just know that you are not alone.
_________________
| Humidifier | |
 |
Re: Is this ever going to get easier?
Amy,yawn wrote: Anybody got any encouragement??? I need it today
Thanks...Amy
You are a trouper & I know you will tough it out.
Where's that nice smile of your's
Cheers
DSM
xPAP and Quattro std mask (plus a pad-a-cheek anti-leak strap)
So Tired...I hope your day has gotten a little better. I cried this morning too but reading all the kind words written to me has helped to brighten me up a bit. I really like all the advice that was given and I'm going to try it all. I'll make a pact with you...I won't give up if you won't give up....how about it?? Everybody says we'll eventually feel better...I guess we should believe them (they are the experts aren't they???) Let's hang in there together...and anybody else out there that wants to join us is more than welcome.
DSM...this is for you
Amy
DSM...this is for you
Amy
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Sleepless on LI
- Posts: 3997
- Joined: Mon May 30, 2005 6:46 pm
- Location: Long Island, New York
Amy,
We spoke earlier so you know I'm on your side, rooting for you all the way. Didn't I tell you two nights ago was the worst night I've had in a long time? Last night was much, much better. It's like WAF said, we will have our good nights and our bad nights. Nobody chooses to be on CPAP therapy. I'm sure if we all were asked if we wanted to stay hooked up at night or we could get off it health-risk-free, none of us would beg to keep connected. However, everyone will get better at a different pace and you can't let the posts you read from the lucky B-stards who get instant relief make you feel like the exception. It is just the opposite. Most people don't hook up and that first night feel revived.
Maybe it would be a good idea to ask your doctor for a mild sleeping pill like Ambien to help you get through the next few nights (ask for 7 pills or so, just so you won't end up relying on them). Maybe if you could just get a few nights of replenishing sleep to make you feel better, your whole outlook would start to change and you wouldn't have this much trouble keeping that smile and positive attitude.
We all go through what you are right now. But some of us get over it easily and others have more trouble adjusting to the situation. You have been doing fine, so maybe you're right and it really is just hormones. I will attest what they can do to your personality and attitude. If so, know this will soon pass.
You know we all love you and want you to succeed. You have made some good friends on this site who are all behind you and want you to feel well. So keep posting, no matter how you feel, and we'll keep replying until you don't bother to come see us anymore because you're too busy from being too full of energy to sit in front of your computer any more and go on this site.
Let everyone know how you did tonight, please. We'll be thinking of you. And good luck with the pulmonologist. Wish you lived in NY 'cause, boy, do I have a doctor for you...
We spoke earlier so you know I'm on your side, rooting for you all the way. Didn't I tell you two nights ago was the worst night I've had in a long time? Last night was much, much better. It's like WAF said, we will have our good nights and our bad nights. Nobody chooses to be on CPAP therapy. I'm sure if we all were asked if we wanted to stay hooked up at night or we could get off it health-risk-free, none of us would beg to keep connected. However, everyone will get better at a different pace and you can't let the posts you read from the lucky B-stards who get instant relief make you feel like the exception. It is just the opposite. Most people don't hook up and that first night feel revived.
Maybe it would be a good idea to ask your doctor for a mild sleeping pill like Ambien to help you get through the next few nights (ask for 7 pills or so, just so you won't end up relying on them). Maybe if you could just get a few nights of replenishing sleep to make you feel better, your whole outlook would start to change and you wouldn't have this much trouble keeping that smile and positive attitude.
We all go through what you are right now. But some of us get over it easily and others have more trouble adjusting to the situation. You have been doing fine, so maybe you're right and it really is just hormones. I will attest what they can do to your personality and attitude. If so, know this will soon pass.
You know we all love you and want you to succeed. You have made some good friends on this site who are all behind you and want you to feel well. So keep posting, no matter how you feel, and we'll keep replying until you don't bother to come see us anymore because you're too busy from being too full of energy to sit in front of your computer any more and go on this site.
Let everyone know how you did tonight, please. We'll be thinking of you. And good luck with the pulmonologist. Wish you lived in NY 'cause, boy, do I have a doctor for you...
L o R i
Lori,Sleepless on LI wrote:
Let everyone know how you did tonight, please. We'll be thinking of you. And good luck with the pulmonologist. Wish you lived in NY 'cause, boy, do I have a doctor for you...
Did you turn CFLEX off & try without it? - Dr D wants to know
What was the result ?
Cheers
DSM
xPAP and Quattro std mask (plus a pad-a-cheek anti-leak strap)