Sunday, January 2, 2011

Progress---- but not Perfection

I'm kind of sad.  The long awaited machine has arrived: on December 30, I picked up my CPAP.  Carl and I had to go to the hospital and have a very patient technician demonstrate how to operate the unit and fit the face mask.  If I have any problems, I'm supposed to call him because "He's not a mind reader, he won't be there to tuck me in at night and can't possibly know what problems I may or may not be having unless I call."

After about an hour tutorial, we were on our way home with the sleek unit in its own sleek carrying case.
I was feeling a bit anxious already even though it was only 1PM and hours before bedtime.  We have a lot of money and hopefulness for my better health riding on this gadget.

Remember I said there were two camps of sleep apnea patients, the first being those who absolutely loved their machines from the very first night, who put on their incredibly unattractive face masks and slept the night through only to awaken the next morning refreshed and feeling like a million bucks? These people say the therapy has changed their lives and they never leave home overnight without their machine. 

And then the other people I spoke with, who hate the darn thing, toss and turn  and in the morning find out they have ripped their mask off in the middle of the night unknowingly and find it on the floor.   In most of these cases, their machines end up being dust bunny catchers on the shelf next to their beds as they decided the cure is worse than the illness and they have given up entirely.   

So which camp will I be in?  I can definitely say I am not in the first one; I'm not in love with the unit yet, not by a long shot.  The machine itself is extremely quiet, but the mask is something else again. 

The mask has to be on very tight so it will not leak and that it is very uncomfortable for me.  I'm going to need to put on my big girl pants and learn to suck it up, but I have to say, it's very annoying.  The machine I have is quite sophisticated and doesn't ramp up to full pressure for 30 minutes which is supposed to give me enough time to get to sleep before full treatment begins, but there's times at night that the mask slips and a rush of air is expelled that wakes me up instantly as if someone turned an air compressor nozzle on me.  It is rather startling.  Then I have to remove the stupid mask, turn off the machine and try to get the thing back on my face correctly by adjusting the velcro and elastic straps, one of which keeps crinkling my left ear in a very nasty manner--must be my ears are on my head crooked.  The machine also has a heated humidifier which is nice, but the incoming pressurized air is still cold on my face, so I am going to need to sew a cover for the hose to hopefully keep the air warm before it gets to me.  It would have been nice to use a nose only mask, but of course, the sleep technician said I can't keep my  mouth shut, so full-face is my plight.

I'm not sure if it's because I am failing to breathe correctly or what, but for the last three nights I have woken up with the pressure so high in the mask that if one of the straps were to unhook the entire contraption would probably fly off my face and become a weapon of mass destruction, taking out everything in its path.  Since I was also waking up with a very dry mouth, I turned up the humidity level last night only to find out that wasn't a good idea either as I experienced what is known as 'rain out'-- my face mask and hose were filled with condensed water and I was inhaling water droplets.  The noise was amazing, it sounded like I was scuba diving. 

And yes, believe it or not, poor Carl is still trying to sleep through all of this madness and mayhem.  I give him so much credit, he's been so supportive, helping to adjust the mask and not minding the stiff breeze from the vents on the front of the face mask blowing at him when I turn his way.  I know the machine is much quieter than my constant snoring was, but my tossing and turning is driving me crazy and I don't know how he tolerates it.  Remember I've said it before---Carl is an optimist, and he believes everything will always work out for the best.  Unfortunately, I am the pessimist but I am working very hard at trying to stay positive, this has to work, it just has to!

I don't know why, but for some reason, when I put the mask on at night, I feel so lonely.  I know it's for my own good and all I have to do is get used to it, but lying there, listening to Carl breathing easily as he sleeps while I'm strapped into this expensive contraption that is supposed to work if I could only doze off is rather nerve-wracking.  I get to thinking, 'Why can't I sleep like normal people?'  I've read that claustrophobic people have a very difficult to almost impossible time adjusting to the masks and I can see why...I'm not claustrophobic, but it is very hard to get used to.

I'm trying not to be too hard on myself or the unit, I've read it can take up to three months to get completely used to the device, and I'm not giving up.  I do seem to feel better in the morning even though my sleep is far from ideal since I wake up almost every hour to fix leaks or adjust the tightness or move the hose.  Before the machine, I woke up almost every morning with a very bad headache as a result of holding my breath and the last three days I have not had a headache, so that is something to write home about, right?  I also do seem to have a little more ambition, and hopefully that's not just psychosomatic.  The doctor said it can take a long time to make up for years of sleep deprivation and I didn't get as bad as I did overnight, so I guess I shouldn't think the cure will be overnight, either. I'm just impatient.    I wanted to be like those patients who said, "Yippee!  I LOVE this thing!  I feel WONDERFUL!"

I've heard from long-time users that once they put on their masks they immediately fall asleep, even if they take a nap during the day.  Something about the machine and the air automatically signals their brain it's time to sleep and if that could happen for me, how fantastic it would be.  Years of fighting with sleep apnea has me wired to be a night owl, delaying sleep subconsciously because that was when the battle to breathe would begin.  All I have to do is retrain my brain that it's OK to sleep now.

I'll probably have to try a different face mask eventually, too.  I will be calling the non-mind reading sleep technician back and telling him about my adventures; maybe he can come up with a solution for me.  You cannot get away with not using the machine and saying you do, either, because there's a computer chip in the machine that records how many hours you use it and if it is helping stop all the snoring and apneas.  I have an appointment with the sleep doctor in three weeks for a follow up, maybe by then, I will have gotten used to the routine.  And the mask.  I know people who have gone through lots of different masks before they found the right one, this is definitely not a case of 'one size fits all'.  And whoever designed those face masks wasn't worried about the wearer winning any beauty contests, oh my, talk about ugly!  It's a good thing this is something that's worn in the dark!  Once again, my deep appreciation goes out to Carl, who doesn't bat an eyelash looking at the hideous creature lying next to him in the morning--I am Darth Vader, hear me breathe!

I know people who won't wear eyeglasses because they dislike how they look in them, but since I've worn glasses since the fourth grade, I no longer care how bad I look in them.  I am afraid it will take awhile for my ego to simmer down about the full face mask though.  Oh my.........................
Karen's Self-Portrait: Poor Carl!

 Carl said the perfect solution would be a plastic bag-like device that would simply slip over the patient's head and seal on the bottom (no, I don't 'think' he's trying to get rid of me--plastic bags are a bit dangerous tied over one's head!) but I know what he's getting at.  Having some sort of mask that you could just put over your head without tightening all those straps would be wonderful, if it wasn't so deadly.

So, back to studying sleep---let's hope I can make this work!


Sall's Country Life said...

Oh Karen, what an awful ordeal! Hang in there, I think the health benefits will be worth it. If you could just find a more comfortable mask,yikes! I'm sure Carl is thinking about your health and not thinking about the ugliness. Isn't it wonderful that love is truly blind? Good Luck Friend, and sweet dreams!

Granny Lyn's Garden said...

What a bummer Karen,I was hoping you would be in the first group,also.Those that have great results right from the beginning. Glad to hear you are feeling a little better tho,hope you continue to improve every day. God Bless, Lynda

Toni - Signature Gardens said...

One day at a time. Hang in there.

xoxoxo said...

Oh Karen! I was too hoping it would be the magic easy cure. Show it persistance as with everything you do, and It will work out (Im with Carl on this one!)
Maybe you can invent a new style and patent it :)

lifeshighway said...

Karen, it won't take as long to get used to as you would think. My husband wears one, but he has the snorkel kind that fits in his nostrils. My Mom wears the mask. After seeing both on, I would vote for the mask it looks like it would be more comfortable. Both members of my family swear they feel great now that they are getting a good quality sleep. I love your little drawing. It is very accurate.

Alison said...

Well, except for the open staring eyes on the drawing you did, it doesn't look so ugly! But I'm sure it is as uncomfortable as heck.

I too was hoping it would be an immediate fix for your health problems. Now hoping it won't be too long before you start to get some really good deep sleep. I have insomnia too, and I feel great after just a weekend of sleeping late.

I'm wondering since the machine covers both mouth and nose, where does the air that you breathe out go?

Anonymous said...

I feel bad that you are having a hard time adjusting. I can not believe so many people think it is so wonderful to wear. I can understand if it gives a good nights rest, but I would feel like I was trapped by it. But like Toni said, one day at a time. Maybe you will love it too after a little time wearing it goes by.

Shirley said...

Karen, after reading the chronicles of your quarry garden and other "adventures" I know you will persevere with this knowing the benefits will outweigh the unattractive mask. I hope your technician will work with you for the most comfortable of fits so you too can glory in being a member of the first group. Hang in there!

Shirley said...

Karen, after reading the chronicles of your quarry garden and other "adventures" I know you will persevere with this knowing the benefits will outweigh the unattractive mask. I hope your technician will work with you for the most comfortable of fits so you too can glory in being a member of the first group. Hang in there!

Shirley said...

Karen, after reading the chronicles of your quarry garden and other "adventures" I know you will persevere with this knowing the benefits will outweigh the unattractive mask. I hope your technician will work with you for the most comfortable of fits so you too can glory in being a member of the first group. Hang in there!

FlowerLady said...

Dear Karen ~ My heart goes out to you. I was hoping you wouldn't have to wear this thing, but alas. Since 'they' do say it takes time to get used to, then we can hope with each passing night you will become more accustomed to the thing, and feeling much better in the long run.

Bless your heart.

Love and hugs ~ FlowerLady

Ginny said...

Karen, I'm sending positive thoughts your way and hoping that you quickly adjust to the mask so that you're sleeping through the night like a baby. How anyone could love it on first try is beyond me! Seems logical that it would take some getting used to.

Gatsbys Gardens said...

Karen, I have a friend who has this contraption. I hope is it on the easier side for you, loved your drawing.


Anonymous said...

Karen,is everything Ok with you? Just busy? I have not seen you around for a while. I hope this thing does not have you down.Drop in and let me know. I am a bit worried. Donna

Karen said...

Lisa, thank you so much for the positive thoughts, and yes, it's a good thing that for Carl, at least, love is blind!

Lynda, thank you, I managed a bit better last night, so maybe time is the answer. I'm still holding out hope. ;')

Thank you, Toni, one night at a time is a very doable solution!

xoxoxo, I told Carl he should work on the plastic bag idea, maybe he could patent it (as long as no one suffocated, lol)

lifeshighway, I am so amazed at how many people actually have sleep apnea, it is much more common than I thought. Thank you for the pep talk, I needed it.

Alison, yes, my staring eyes are really scary, aren't they? Unfortunately, the real picture would be worse than my drawing. There is a vent for the air that is exhaled, the mask is quite complicated. Now if they could only make them more comfortable.

Shirley, thank you so much; if this mask is still being troublesome by Friday, I will be calling the technician again. I greatly appreciate your kind words!

Ginny, thank you for making me feel more normal--when I heard my friends say the mask was so comfortable from the first night I felt so silly, until I read some other people who are struggling with CPAP too.

Flowerlady, thank you so much. I'm going to give this my best effort at getting used to it!

Thank you, Eileen! The drawing brought a smile to my face, too (but the real deal is too scary to post, ha!)

Donna, I've been down in the dumps a little bit, I will admit, but am working on perking up and trying to keep a positive attitude. This isn't such a big deal, I don't know why I let it get to me, gosh, it could be a whole lot worse. It is weird how I do feel trapped by the mask sometimes though, it's a good thing it comes off easily. Thank you so much for your concern, I'm down, but not out yet!

Rosemary said...

Karen This does sound like quite the challenge. Still if you already are feeling better no headaches, guess all this will be worth it in the end....

Beth said...

Karen, I wish you the best in this adjustment. It must be very, very difficult and I am sorry you have to go through this.
Blessings and hugs, Beth

Zoey said...

Oh, Karen, it does not sound like a pleasant experience at all. I do hope you get used to it and end up it the "I just love it" category!

Sandy said...

Karen.. I feel your pain and I feel your frustrations with a cpap.. I too have one and the first few weeks I woke to the mask on the other side of the room.. in my sleep I pulled it off and tossed it.. I did not get used to it and my cardio doc told me with my heart troubles I need to use it..I do now have just the little nose piece and it's so much easier to wear at night (I still don't like it)..
Wishing you well and hopefully the machine will help you in many ways..
Happy New Year

Anonymous said...

I am glad you replied. Things will start looking up. I have missed your witty humor.

But you know many of us out here care for you and hope all will be well, so you are definitely not alone.

Karen said...

Rosemary, yes, so far, the headaches have ceased. I am thankful for small favors!

Aw, thank you Beth & Zoey, I'm sure I'll get used to it eventually...I'm just a slow learner. ;-)

Sandy, how good to hear from someone who knows what I'm talking about! I wish I could wear the nose mask, but since I can't keep my mouth shut apparently, that's not an option. OH, I know the temptation of wishing to throw the thing on the floor; it's not any fun at all to get used to. How many years have you had yours?

Donna, thank you so much! I am trying not to be a whiny wimp and it means a lot to know people care. I'm so blessed.

Sandy said...

Believe me, your not being a whiney wimp about this thing!
I've had it for 4 years now and I'm guilty, don't use is as I should. With all the technology they need to make one human compatible! Also one that does not make you look so 'out in space'!
It bothers my head, hurts my ears and ruins my hair...
My neighbor, age 42 also uses one and she too has such troubles with it.She is a teacher and yawns in class every day... We have sat down with coffee and chatted about this thing, trying to find a way to update it. We would make a million!
I still don't get more than 5 hrs of sleep and I guess I've adjusted to this sleep pattern I'm in, because I'm feeling pretty good...
With any luck you will get adjusted and be one of the few who do! Good luck! Sorry but it makes me feel good to know "I'm not a baby about the cpap", there are many out there with the same feelings...but the doctors say it's going to help us not have a heart attack then do the best you can with it! Think of how well rested you will be the next day!

Thanks for your visit to my blog yesterday and your kind words about the ever ending kitchen reno..
Take care

Karen said...

Sandy you are SO right about these machines, they do need to make them compatible for humans! I'm sorry to hear you struggle with yours, too. There has to be a solution. Let's find one together and become rich and famous!

Darla said...

So, how's it going now?