So Upset about the Cpap

YogaKitty wrote:I'm only one month into this, so don't have much experience. My best advice is to read, read, read the forum. I have learned so much from this group! There are a LOT of women on here, you aren't alone! Also, no way could I tolerate a full face mask. Try nasal pillows or the Sleepweaver soft mask and it might go better for you. I alternate between the Swift FX for her and the Sleepweaver elan.

JeffL wrote:Why use a full mask? To make a long story short, I couldn't tolerate anything like that either. Then I was introduced to the nasal pillow mask. CPAP became "no big deal" from then on.

Unfortunally, when I started reading this thread, I said out loud that " I bet someone was going to try to talk the young lady out of her mask." At this point she appears (and asks) for encouragement... not switching masks. We don't know if the mask is uncomfortable or leaking. If she has an emotional hurdle, lets clear that first. Masks are like shoes... what you like and works for you may not be comfortable to others, or it may leak like a hole in a boat to others. You may be trying to help the young lady, but at this point lets don't create additional problems, only solutions (and encouragement) to existing problems. I know that people who have been on this forum a long time are trying to help newbies and I truly feel that you are also trying to help. Just sayin'

Sheriff

I hear ya -

Think of it this way -with CPAP, your skin will look brighter, you'll look younger, your hair will be shiny and bouncy, you'll have energy. Good sleep is a miracle

Hi unhappy and welcome to this great community. Try to breathe through the "get over yourself" messages, and just know that the intention is to help. And you also don't need to make an attitude adjustment right now either, you're at where you're at and you feel how you feel. In fact, I know lots of people, men and women, young and old, who have disliked and even hated CPAP the whole time they've been on it, but they use it faithfully and can acknowledge how it helps them. It does get easier and more routine after a while.

What I hear in your post is the two things you could use right now are 1) real understanding of how you're feeling; and 2) support for making your CPAP therapy work. Many of us understand how you're feeling, including the embarrassment about "being seen" with all your gear on. A few months ago one member issued a challenge for us to post photos of ourselves wearing all our cpap gear (the thread is called "I triple dog dare you"). Some people were gamers and bravely posted their photo, but many did not feel comfortable posting a photo. We don't all have to feel positive about being on cpap, and we may or may not feel comfortable about how we look all masked up. That's ok, one step at a time.

So you do have the understanding and empathy of many of us who took (and are still taking) a long time to 'make friends' with cpap. That's a process. In the meantime, if you do post your equipment in your signature line then people can begin answering specific questions that can prove enormously helpful. In fact for many it has made the difference that allowed them to stay on this weird therapy. The mask is a huge factor, so if you don't like how yours feels, and/or if it's leaking and disturbing your sleep too much, there are so many different makes and models to try.

You can do this, be patient with yourself and with the process -- and let all the good people here help!

unhappy wrote: I have kids and don't want them to see me with the machine I am a very private person and am a little humiliated that I have this diagnosis too. I also have a few other medical problems and this one is just another one. I hope writing this and hearing some positive feed back will help me get accustomed to the machine and not feel so upset about it. Don't want to offend anyone with my "woe is me" just needed to express it and to the family and friends that know they have tried to help but I feel if they had to wear one their replies would be different.

I sympathize. I surprised myself by how upset I was with the diagnosis. And for everyone here who lectures you on "getting over it" I'm sure there are at least as many who felt what you are feeling. I do think you will get over it with time however. I did. For years now it's been something that really doesn't matter emotionally to me at all. Wearing the mask is just something I do like brushing my hair.

I am not a very private or proud person. I've had to learn to laugh at myself just to not yield to embarrassment. (see the link in my signature line to a video of me sleeping) Even though I have been known for self deprecating humor, I admit that even after all these years of use and having an "out there" personality by nature, it is still awkward every time someone sees me in my mask for the first time. Everyone has different personalities and family dynamics. Do what's comfortable for you in your situation. I would just hate to see you carry a burden no one else requires of you. Give it all some time. There are phases we all go through in any adjustment, and you are not on anyone else's time schedule. Whether you are open about it isn't the issue. You have risen to the occasion by using it.

About using it - I agree with the person who mentioned the ramp. Sometimes feeling like suffocating is a panic reaction, but sometimes it's because there really isn't enough air to be comfortable and relax with it. One tip that helps me with the initial startling in-your-face sensation is to have my mask in place before turning the machine on and be exhaling forcefully at the time the air comes on. I hate to say too much about the ramp in case you're not even using it, but if you are, can you tell if the air is less "suffocating" after the ramp period ends? If that's the case, decreasing your ramp time and/or increasing your starting ramp pressure could make it more comfortable. Those are just comfort measures and do not alter your prescribed treatment. Those options are generally there for you to use, although I can't swear that's so on all machines.

Hang in there. You've got a lot going on right now. Things won't always feel like this.

I'm only a couple of months into this and for me it's been getting worse and worse -not better and easier- the longer i use it. The only part of your statement i can't grasp at all is your feeling of humiliation. Why? You certainly didn't choose to have sleep apnea. I'm rather surprised i'm finding the cpap treatment so difficult since i had an easier time falling asleep and staying asleep than anyone i've ever met. I expected to adjust to this easily and see an improvement in my wakefulness soon after starting it. It has been the opposite. While early in my use of the cpap machine i could sleep 7-8 hours, two nights ago I went without sleeping for even a minute all night. I haven't had that happen in my life except for the nights after the deaths of loved ones. Last night i gave up and slept in a lounge chair and feel almost human for the first time in weeks. I'm hoping that my sleep doctor appointment next week will help but only moderately hope since I find that most doctors these days take no responsibility for solving the problems of their patients. They give you the 10 minute song and dance and if that works, great, otherwise you are on your own. The ability of people here to make it work is encouraging that at some point i can solve this. But i am trying to lose weight ( and i'm not fat to start with), have started the process for a dental appliance and will look into surgical interventions. Make sure you are doing everything that is in your control to improve your condition. What is out of your control you can't worry about and certainly not be humiliated by.

Sheriff Buford wrote:Unfortunally, when I started reading this thread, I said out loud that " I bet someone was going to try to talk the young lady out of her mask." At this point she appears (and asks) for encouragement... not switching masks.

Nope Sheriff, you got that totally wrong, IMO. I wasn't the one suggesting nasal pillows, but changing from a Full Face Mask to nasal pillows is a fundamentally valid idea. I probably wouldn't make it the first thing I'd try, however I definitely would include it in my 'quiver' of things to apply down the road, ie. after Paddacheeks, Lansinol and all the other typical FFM cures. Just because you don't like them doesn't mean that it's counterproductive to talk about them. Furthermore, when I started with a FFM I thought I was doomed to failure... then I found nasal pillows and my therapy has been nicely on track every since. So, give that some consideration Avi... er, I mean Sheriff.

Welcome, unhappy. I wasn't too happy about it myself either when I started.

Give us some more info. There are a lot of common problems that CPAP users have and one of us may have worked through the same problem you have and be able to help.

We especially need to know what machine and mask you have. There's a link in my signature line on how to enter this into your profile for this board.

Dear so upset.

I feel ya. All the people who have answered you are over the hurdle and then some. I on the other hand are more in your stage. It is for this reason, I don't want to elaborate, but I want you to know that I know how you feel. I have a hard time seeing myself in the mirror, I have had several house guests from whom I have hidden the machine from, (in a cute basket with a pretty cloth over) and lock my door at night. I can't talk to my siblings about it because they think it is funny. My husband on the other hand is super kind about it. I hid it from my grand kids when they visited because I only get to see them 1x per year, and I did not want my issue to mar our time together, I wanted to be a "Disneyland" Nana. Don't get me wrong, we did plenty of digging in the compost and other messy activities like art and cooking. For me, although I know many women have this, the general information about this is that it affects men in a greater number...so my peabrain logic goes to feeling not as feminine. I know that is not right. I'm just being honest. Maybe when the mainstream info comes out of the closet, we can too. I know that it would be cooler and braver to be the trail blazer, I just don't have the will right now. Had too many other things happen. I liked the person who said you had to eat this one bite at a time. That is how I feel. Hard climb for me. I mostly read this forum, don't contribute as much because I am still learning, but the people who do contribute should be given so much credit. What a fantastic group of people. I recommend the acceptance letter at the beginning, although I have not even come close to accepting it myself, I will continue to try.

I am proof that ignoring sleep apnea does not make it go away & weight has nothing to do with it.

in 1995, I had a sleep study done and was diagnosed with an AHI of 8... doctors told me that it was mild and I did not need a CPAP machine...yippee.... spent the next 17 years denying I had a problem.

fast forward to 2012, I had another study done and my AHI is now at a severe level of 31.

I weigh the same as I did in 1995, I a little older now I turned 57 today.


Dave

Apnea tends to run in families.
I am glad that I saw my brother's CPAP, because I decided to get a sleep study then.
Our father's snoring used to vibrate the windows--he died at 50.
He never knew any of his 5 grand kids.
You will get over any feelings of embarrassment in time; and you may save the life of a loved one.

Happy Birthday, Dave!

Denial Dave wrote:I am proof that ignoring sleep apnea does not make it go away & weight has nothing to do with it.

in 1995, I had a sleep study done and was diagnosed with an AHI of 8... doctors told me that it was mild and I did not need a CPAP machine...yippee.... spent the next 17 years denying I had a problem.

fast forward to 2012, I had another study done and my AHI is now at a severe level of 31.

I weigh the same as I did in 1995, I a little older now I turned 57 today.


Dave

I understand what you are saying about being embarrassed, I was too and I think it comes from the stigma that if you have sleep apnea it is because you aren't fit, don't eat right, exercise, blah blah blah. That just isn't true but sadly there isn't enough knowledge out there so people just judge. I was quite upset at many of my friends and family who made comments that hurt my feelings...my husband has been incredibly supportive through all of this and even put a post on Facebook supporting me (very unlike him to put personal things online He basically said that he was proud of me and that if anyone had anything to say that wasn't supportive that they'd better show me a medical degree first! I hope you have someone in your life that can provide you with support like this. If not you will find many people here to provide it to you.

When I showed my young boys my machine they were just glad that I'd start to feel better soon and have never ever said anything when they see me in my mask, it just became normal for them. I'm not sure how old your kids are, but I personally think you should talk to them and show them your machine. The WONDERFUL thing about kids is that they aren't prejudiced and they love you know matter what because you are their mom.

Take every day one at a time don't expect a miracle right away and believe in yourself.

unhappy wrote:I just got fitted for my full mask cpap machine, the first night I felt as if I was being suffocated, the second night I tried to stay positive but I struggled staying asleep. The bottom line is I feel sorry for myself, I never wanted this machine I always thought that I had sleep apnea and of course was diagnosed with SEVERE SLEEP apnea!!! ...EDIT...

I am into my second month on CPAP therapy, so I am not too much further along than you are. I still remember the day I got my diagnosis of severe apnea from the doctor after my sleep study. After I left his office to go to work, the first thing I heard on the radio was "Hootie" singing that I should "sit down and have a beer and feel sorry for myself". Not very encouraging.

Fortunately, my wife has been very supportive, and has emphasized that it is just one of those things we deal with in life. She put it into perspective for me. I hope your family is supporting you in this effort to improve your quality of life. It can seem quite intimidating right now. It is hard to get to sleep for the first several nights, and it takes some time to get used to it. But I hope that soon, you wake up one morning feeling that it you have slept well, and it isn't so bad.

It will happen. Good luck.