scooterpagan's distress

[SleepingUgly]

Thanks for all helpful comments.
BUT .............. I hate my facemask!
I seem to get 4 hourly sleeps and then I feel like I am choking and I have to take it off.
I have a friend who prods me into wearing it and I do put it on each time I take a nap but I hate the whole process and if this is what I have to do to keep me alive .....................
what's the point?
Life should be fun; not a process of hating the fact that I have to go to bed eventually.
I am a moaner I know, but this is proving so difficult for me.
This machine monster has really got me and I am forever in tears.

It is an adjustment, that is for sure. I also am having trouble (I've never met a mask I liked, except the ones that were ineffective), and am avoiding going to bed because I don't want to deal with all this. Life "should" be fun, but given your experiences in life, you no doubt know that it is not always so. As I tell my kids: "Life isn't fair and the sooner you accept that, the better off you'll be". Now I have to follow my own advice! So I'm off to tape my mouth shut and strap things on my face. Who would have thought. All in the hopes that tomorrow will be a better day...and if not tomorrow, maybe the next day...

[KatieW]

I'm sorry you're struggling so much. I know it is harder for some, than others, especially when you have had other health issues to deal with.

We are here to try and help. Are you able to list the specific things that are causing you the most distress, so that others who have faced the same things can try and make suggestions for you.

[elena88]

Oh Scooterpagen,
darling.....
Take a deep breath.
It is okay to hate your face mask, its okay to hate ALL OF THIS at first..
You go ahead and get it out.
No, going to bed should not be a source of sadness and frustration..
You should not have to face the "monster" machine and be forever in tears..
But do you know what? Sometimes things are not as they seem...
Sometimes enemies turn into allies..
Sometimes what seems like the end of the world is a new beginning..
This moment, when you are in despair is NOT your future.
All you need now, is information..
The right mask, the right machine, the right technique, the right state of mind..
Its a heck of a lot to take in when you have been through so much already..
It doesnt all have to happen at once..... nothing worthwhile does..
baby steps, with as many breaks as you need, get one thing to work, then one more.. then one more..
It will be worth it.. You will FEEL good again.. maybe better than you have in a long time..
Everyone will help you here, stay, I promise you have come to the perfect place to get you through your new journey.

[rested gal]

scooter, what is the name of the mask you're using? Brand name and model name. Both those are usually written on the back strap of the headgear.

The mask is usually the worst part of trying to do CPAP therapy. The good news is... it's very possible that another mask (or some "fixes" for the present mask) could make "doing CPAP" soooooo much more comfortable than it is for you now.

Finding the right mask is the key to whether CPAP is comfortable enough to "do it." You'll get plenty of mask suggestions, help, and support right here. Hang in here with us; tell us what mask you have now.

And what is the name of your machine, btw? Complete name of the machine, please. Brand and model names are usually written on top of the machine -- examples are names like Respironics System One REMstar Plus, or ResMed S9 Escape.

You've been through the wringer, but all this can be made much more comfortable and well worth doing.

[Madalot]

Thanks for all helpful comments.
BUT .............. I hate my facemask!
I seem to get 4 hourly sleeps and then I feel like I am choking and I have to take it off.
I have a friend who prods me into wearing it and I do put it on each time I take a nap but I hate the whole process and if this is what I have to do to keep me alive .....................
what's the point?
Life should be fun; not a process of hating the fact that I have to go to bed eventually.
I am a moaner I know, but this is proving so difficult for me.
This machine monster has really got me and I am forever in tears.

Oh Scooter --

I do understand what you're saying here. Boy, do I understand.

You're getting excellent advice here. First off, try to take a deep breath. When I find myself feeling and saying things similar to what you've expressed (and trust me, I do even now sometimes), I find a way to be more accepting of it. Like with me -- I went from cpap to bipap, to bipap with oxygen, to ventilator with oxygen, which is my current equipment. A VENTILATOR. This is major stuff now. And I gave myself a major pity party over the whole thing.

But you know what -- no matter what happens and how awful I may think it is, it could be worse. And when I envision WORSE, I suddenly don't feel so badly about what's happening to me.

I've been on the ventilator since February and even now sometimes I have trouble breathing on the machine. The last two nights I've experienced that gagging thing, similar to what you describe. But what I do is focus on the what the machine is trying to do for me and try to cooperate with it -- for me it means trying to sync my breathing with the machine. By doing this, I'm okay within a few seconds or so.

Please post your equipment when you can -- it will make it easier for people to help you fine tune everything to make it as comfortable and easy as possible.

[DoriC]

Scooter,you're getting sincere understanding and some good advice from everyone but please give Rested Gal all the information she's requesting and I know she'll put you in the right direction. She's helped so many others.

When you think about it aren't you grateful that there is a treatment for your disease that will make you feel better and healthier, and you weren't given worse news? That's what helped get us get through it.

[elena88]

scooterpagen, honey? where are you?
are you okay?
Please some back and let us know whats going on, good or bad..
we are here for you..

[scooterpagan]

Just what does a cpap machine actually do / or what is it supposed to do?
Does it keep you breathing? Sleeping? Alive?
Any or all of the above?
I am more tired than ever on mine.
My cheekbones hurt all the time, I cry at the drop of a hat; my husband tells all his friends my results without my permission; and I feel like such a failure!!
I need to use so much machinery to 'keep me moving' and now another machine to keep me breathing!
Is it any wonder I just want to 'go home'?

[Sleepy Taz]

Scooter,

A Cpap helps to keep your air passages open when you sleep. If they get blocked the oxygen levels in your blood lower which leads to strokes, heart disease, high blood pressure, and can shorten a persons life. The Cpap helps to keep these passages open and working properly so that there is enough oxygen in the blood to allow the body to do its job. It doesn’t help you breathe like oxygen does. For those of us who have been doing this a long time, we have increased energy and even look forward to sleeping with the mask. This is all about attitude as you will get out of your therapy what you put into it. There will be times where it seems like a daunting task but for the most part it will become part of your lifestyle that you will come to embrace. Someone else on this forum likened using a cpap to wearing glasses. You need to see so you wear glasses and in turn you need to sleep so you use a Cpap. There are many here who share your pain and apprehension, but with the help of these same people you will get through it. The main thing is to move away from the negative and push the positives. This includes maybe a 2x4 on the hubby so that he will climb on board and help instead of hurt.

[ozij]

Just what does a cpap machine actually do / or what is it supposed to do?
Does it keep you breathing? Sleeping? Alive?
Any or all of the above?
I am more tired than ever on mine.
My cheekbones hurt all the time, I cry at the drop of a hat; my husband tells all his friends my results without my permission; and I feel like such a failure!!
I need to use so much machinery to 'keep me moving' and now another machine to keep me breathing!
Is it any wonder I just want to 'go home'?

Scooter, we are here to help you in a number of distinct ways.
We're here to tell you you're not alone - some of us have gone through very bad things, and many of us realize the need to vent when we hit yet another major hurdle in the road of life. We know how unnatural it is to sleep with a mask strapped to your face - which is why we understand what you're complaining about in the therapy.

However, for the life of me, I don't understand why you feel like a failure. Because you happened to catch polio as a child? Because you don't have a perfectly functioning body? Because you're husband seems to make boorish comments? (In my opinion, that is proof of his failure). Because your therapy isn't working immediately? It didn't do so for many of us.

We can give you some very good practical tips to make the therapy more comfortable and more effficient. Rested Gal asked you the following - we all need that info in order to give you some pratical suggestions:

scooter, what is the name of the mask you're using? Brand name and model name. Both those are usually written on the back strap of the headgear.

And what is the name of your machine, btw? Complete name of the machine, please. Brand and model names are usually written on top of the machine -- examples are names like Respironics System One REMstar Plus, or ResMed S9 Escape.

One of the late effects of polio can be generalized muscle weakness that makes breathing more difficult for you especially when you sleep. CPAP gives you pressurized air to keep your airway from collpasing when you sleep. The weakness may be more noticeable when you attempt to breathe out against pressure. You may not be aware of it, but sometimes, you are given a cheaper machine, and only graduated to the more comfortable ones when you "fail" the simple one - the one that doesn't make exhaling easier. So, which machine and mask did they give you?

I'm concerned, at the amount of distress you feel - and in 2 out of 4 posts it seem like your hubby is a major part of it. it.


O.

[elena88]

Just what does a cpap machine actually do / or what is it supposed to do?
Does it keep you breathing? Sleeping? Alive?
Any or all of the above?
I am more tired than ever on mine.
My cheekbones hurt all the time, I cry at the drop of a hat; my husband tells all his friends my results without my permission; and I feel like such a failure!!
I need to use so much machinery to 'keep me moving' and now another machine to keep me breathing!
Is it any wonder I just want to 'go home'?

Hi Scooterpagen.. I KNOW you are overwhelmed at all this. You are getting some really good advice here, and these knowledgeable people
CAN help you..
It is not unusual to be more tired than ever when you start, I was on mine too.. and I thought.. "whats the point of this? Im worse than I was
before!" Before, I could function, then everything after cpap... it came to a grinding halt... I also felt like a failure, because I thought I was
supposed to feel better, and I felt much worse.. I did not understand why...
You probably have had sleep apnea for a long time, and your body is used to it... so its going to take awhile for your body to realize things are changing..
YOur cheekbones should NOT hurt all the time, you have the wrong mask or it needs adjusting.. My doctor told me I would probably have to go
through a dozen masks before I found one which would "agree" with me.. I am now on mask number five.. and still working on it..
Its been three months, but things are getting better..
IM sorry your husband is talking about to his friends. You have enough on your plate without being aggravated about what he is saying..
However, if he knows you dont want him to say anything, and he does it anyway, he is making this more about him that you..
I dont know what your relationship is, but try to ignore everything which makes you feel badly about this, and focus on your goals..
The simple truth is you have no idea how much better cpap will make you feel in a few months or so.. You have no idea right now if this is
"worth it" to you.... I want to tell you to trust everyone who is trying to help you, and let you know it IS WORTH IT.. REALLY WORTH IT..

"is it any wonder I just want to " go home? "
Lack of oxygen can make you feel tired, depressed, hopeless, lethargic, confused... forgetful, and have a terrible effect on all your organs..
THIS EFFECTS YOUR WHOLE BODY AND YOUR SPIRIT..
It sounds like your spirit needs healing too... and if you give cpap a chance, you just might find out that everything else you have been struggling
with for so long will become easier... There could be something special waiting for you... better health, a better state of mind, even joy..
So, its not time to throw in the towel.. its not time... you just stay here, you stay here, and everyone will help get you through this.. You just
need to take another baby step, and keep moving.. Its not always going to be forward, like right now, you feel worse.. but you might take
ten steps back, and two forward and back again, then one day, twenty, forty, fifty steps forward.. YOU might be smiling, and laughing, and feeling
GOOD when you wake up in the morning..
A lot of things need to be adjusted, your mask, all that.. the more information you give everyone, the faster, they can help you.. Tell them
everything you can think of.. okay?
It also sounds like you could use an ally to help you get thru this.. do you have anyone close to you who be on your side with this journey?
An old friend.. someone you can see, call or email.. just someone who can be there for you in all of this.. We will be there, but if you had
a special friend, that might really help too..

EDITYou might want to try these nasal pillows and the headgear which goes with them, I think they are like training wheels for new cpapers..
That is what they gave me to start.. I got used to them in about a week...
Here is the link, these are the most comfortable pillows (in my opinion) out there..
https://www.cpap.com/productpage/fisher ... -Mask.html

[Janknitz]

Scooterpagan,

Please know you are not alone. I felt pretty much the way you did when I finally let them diagnose me with sleep apnea (I already knew) and learned that it was severe and I was going to need to sleep with a machine and mask for the rest of my life.

I have congenital issues that, like you, I always felt guilty about—it was my fault. I didn’t look like everyone else, I couldn’t do the things other people can do physcially. I’ve been told all my life about everything that isn’t “right”— among them that I don’t even swallow correctly and now they are telling me I don’t sleep right either????? Sheesh!!!!!!!!!!

I always felt that I was to blame for all this, when in fact, NONE of it was in my control. The strange thing that has helped me the most was that I have a daughter now with the same genetic condition and some of the same problems. I LOVE her and I could never blame her for the issues that I always blamed myself for. So she has helped me accept and love myself as well.

That aside, the first weeks on CPAP were MISERABLE. Absolutely, positively, miserable. You know the drill: the masks are not only uncomfortable but they hurt, the machine is hard to get used to and adds to the discomfort, you have to put up with irritated sinuses, noise, cold air blowing out of the machine, and all the other discomforts. Etc., etc., etc.

But, please believe me when I tell you that if you keep working toward finding a comfortable mask, things WILL get better. When you find a mask you can sleep with long enough to get some benefit, you will finally experience a good night and wake up to know what CPAP is all about. One morning you will wake feeling calm and comfortable--like you took the best “feel good” drug you can possibly imagine and you woke up on a cloud. It’s the little secret of CPAP. Many of us experience it, and start actually looking forward to going to bed at night so we can wake up again feeling that way. It can happen to you, too.

The key is a well-fitting mask that is comfortable to you. I see many people here have asked you to list your mask and machine so we can help you, but you have not responded to that request. If you REALLY want our help (instead of just whining), you need to tell us what your equipment is so that we can help you. If you can’t figure out how to put it in your profile, just tell us in a post. When you tell us what your mask is, tell us at least 3 things that make it uncomfortable for you. Be as specific as possible.

It will be even more helpful if you can tell us what your maximum pressure setting is, what position you sleep in (side, stomach, or back) and whether or not you breathe through your mouth at night (if you know). But, just telling us what machine, what mask, and what your problems are with the mask will help us help you.

There are a lot of great people here willing to help, but we can’t help unless you meet us halfway by telling us about the mask and machine