22yrs old with a bipap..how to deal with it?

[BellaNotte]

I'm 22 years old, I was diagnosed with sleep apnea about 4-5 years ago and have been using a biPap ever since. I have muscular distrophy so my lungs are not very strong that's why I need this machine. I have always just ignored this part of my life, it's just something I use at night and talk about it with NO ONE. No one except my family knows about my disability or sleep apnea, I do a pretty good job at "looking" normal during the day! But now that I just turned 22 and I start really thinking about my future, I realize it's not something I can keep pretending doesn't exist while I'm not using it..

I have a boyfriend of 1.5 years and he knows absolutely nothing about this. He doesn't even know sleep apnea exists. He knows about my muscular distrophy though. I'm just terrified to even mention about sleeping with this machine, even though I know his reaction would be to assure me that doesn't affect how he feels because he's just a nice sentimental guy. I still panic though and it makes me want to cry thinking about how awkward it will be when he wants to cuddle in the middle of the night and I'm blowing air on his face. Or that he will secretly think I have so many genetic problems it's probably not a good idea to have kids with me in the future.

Well I'm done venting so here's my questions...

Is there anyone in this forum around this age and has something to say about this and your experience with being in a relationship and using a cpap/bipap? I've read pasts posts on here about how it affects sex life, and most answers were that it makes it better and it's not a big deal, but the answers are mostly from married couples and I think they handle this differently than not yet married ones, right? I mean if youve been married for x amount of years and all of the sudden you are diagnosed with sleep apnea, your spouse has been with you through the process and HAS to accept you. I don't know of I'm making sense. And I'm not saying I don't Want answers from older folks, I want as many opinions as I can get..

What mask do you use that you find is better for sleeping with your partner? I have a nose pillow mask and it's loud when it blows out the air, it bugs me and for that reason I have to take sleeping pills or I can't sleep with that noise.
And do all nose pillow masks blow air to the front? So there would be no way after we marry (if we do) and live together that I could cuddle FACING him while sleeping?
Are there any "discrete" looking masks?

I never took the time to actually research this and know what was really happening. And I never get to pick my equipment or anything, the doctor just writes the prescription and has the company send one over (well I've had the same one for 4yrs). But now I'm going to be getting an authorization for a new bipap, so hopefully it's a quieter one. And I want to change my mask but first I need to find one to show them.. The bad thing is online they don't really say if a mask is truly quiet or not...

Thanks for reading, kind of a long post. Don't know if me being a bipap user is ok to be here in the cpap forum but I couldn't find a bipap one.


Cheers.

[ddk]

I have very little advice to offer on most of the questions you asked other than to say one thing and that is to be right within yourself about yourself. Caring about what other people think about you is you allowing your insecurities to control you and change who you are, or can be. If you accept who you are then you free yourself to concentrate on other things and this develops self-confidence. As long as you're not hurting anyone, especially yourself, then why does it matter what anyone else thinks?

[cflame1]

Bella,
First of all... not everybody here's married and some of those discussions could have had single's as a part of. Personally I haven't found anybody that I'm willing to share that part of my life with, so I'm not in a relationship.
Second, there are those of us on here with Bipap's and then there are some on ASV and even a member on a vent. Don't worry about that part.

Which mask are you using specifically... and which machine?

[purple]

Okay, I do not qualify for answering your questions in some ways. I do not have MD. I am old, 62.

I really wish I had already been on an xPAP machine with the kind of technology we have today by the time I was 22. It would have made my whole life so much better. I would have had more energy. I would have been able to use my intellect better, because I had real sleep and remembered better. I would have finished college. I would have had a better job.

Am I simply whining about my quality of health, specifically sleep apnea kept me from maximizing my life in many ways. I think most of those who have successfully utilized xPAP treatment would say, maybe he is whining about getting raw deal with his health, but he is right that his life could have been so much better had he had been able to sleep really well for most of his life. How much better, that is only guessable. Perhaps I needed sleep apnea treatment long before I was 22.

Keep in mind that MD may be solved in your lifetime. You could spend more years of your life after having been cured from MD than before the treatment came about. Surviving until a cure comes into fruition may prove to be very difficult. A task that will require the kind of dedication of someone winning an Olympic Gold medal. How well you can enjoy your life, whether there is a cure or not from MD, will depending on doing the treatments that help you.

[lisacaice]

Bella,

I personally think this is the perfect time to let that person know that you have sleep apnea and that you sleep with a nasal mask, and this is why. No mater what age you are, or what walk of life you are from, the people who love us love us take the good with the bad. The one's the don't end up in the recesses of our minds as we move on with our lives. Look at it this way, you know that if there is going to be any sleeping and cuddling with this person then at some point you are going to have to tell that person. Do not drag out the inevitable.

By bringing this secret of yours out into the light it will let you know without a doubt how strongly that person feels about you and will also revel their true character. Which is a pretty important thing to know if your going to move forward with the relationship and possibly spend the rest of your life with this person.

We all have something about us that we would rather leave hiding in the dark, but the truth romantic relationships never move from romantic to a fonder affection until truths are revealed. No mater what they are.

If the person you love accepts it and is still attracted to and loves you, then you have found that diamond in the rough that so many people spend their lives looking for. If not, you pick yourself up and move on to the next, just like the rest of the world when they find out the person they are with didn't really care enough to accept them either.

Having Sleep Apnea is part of who you are, and everyone you come into contact with who could be a possible sleeping partner should know right away, then you won't have to bring yourself to tell them when you fall in love, they will already know.

Be proud of who you are, so others can be too!

[DoriC]

Just ask yourself this, if the situation were reversed, would you still be willing to be with him? Life is not always picture perfect and not always smooth sailing. It's been my experience that if you can get through the rough spots together it only makes the the relationship stronger and you can then appreciate each other more and value the good times more. I'm not sure but if you use the Search feature for "sleeping with a partner" or "cuddling", something like that, you'll get some good suggestions. As for your Bipap therapy, I'm hoping you'll educate yourself here and ask lots of questions about machines, masks,etc. You'll get lots of help. Good luck and keep us posted. You sound like a lovely young woman!

[chunkyfrog]

Oxygen is good when you are making a baby--for the child's physical health as well as intelligence.
Our machines are just another way science can give us longer, healthier lives than we would have otherwise.
I hardly think a bipap will matter to him--he accepts you with MS.
Many forum members are not vocal about their treatment outside the forum.
Still others have become evangelists here and elsewhere. Your comfort will rub off on him.

[mamagoober]

I agree with lisa as posted above.

My husband was recently put on apap and it hasn't negatively affected our relationship at all. It's a bit different than your situation because we were already married, but it's not something that has affected our love for each other at all -- except for maybe to give me more ways to serve him. I can wash his equipment and ready it for the night each day so that when he's ready to sleep, it's ready. Can he do it himself, of course, but it is a way for me to show my love for him by serving him.

Also, just because you are horizontal in bed doesn't mean the mask must be on. James will cuddle me until I fall asleep and then reach over and put his mask on. He sleeps on his back and I sleep on my side so if I wake up later and want to cuddle, I just curl up next to him and he stays on his back breathing away. I have to be mindful of the hose, but that's a small price to pay to sleep next to my best friend.

[Stormynights]

Just ask yourself this, if the situation were reversed, would you still be willing to be with him? Life is not always picture perfect and not always smooth sailing. It's been my experience that if you can get through the rough spots together it only makes the the relationship stronger and you can then appreciate each other more and value the good times more. I'm not sure but if you use the Search feature for "sleeping with a partner" or "cuddling", something like that, you'll get some good suggestions. As for your Bipap therapy, I'm hoping you'll educate yourself here and ask lots of questions about machines, masks,etc. You'll get lots of help. Good luck and keep us posted. You sound like a lovely young woman!

Very well said indeed.

[sleepnasta]

i use nasal pillows and have no issues with cuddling, spooning, etc
seriously my husband is one of those people who's always hot so he enjoys having the cool air blow on him!
if wearing a cpap mask is going to change a guy's feelings about you, he's SO not worth it, imo.
if he really cares about you this should not be a problem. if anything, he should be happy that you feel better and more energized.
good luck

[BellaNotte]

Which mask are you using specifically... and which machine?

This is the machine I'm using:
https://www.cpap.com/cpap-machine/Respi ... -Gray.html

And the mask is swift st nose pillow

I actually started using it in march of '09, and it looks like I'll have to keep it for a while more since insurance requires more years to replace as I was told today.

[BellaNotte]

Thanks everyone for your replies, it really helps a lot reading other people's thoughts on this subject. Your replies have put a lot of positive thoughts in my head, like maybe it won't be that bad, and the tips given made me feel better about it too, like I could see myself just laying first instead of putting on the mask imedietally like I do when I sleep alone.
Now that the thoughts are right, I just have to build up the courage to just say it.

Does anyone have any advice or personal experience on how to tell your partner? Like do I just blurt it out, make it serious in the "you need to sit down" way, or make it funny? This question may sound silly, but I'm really the quiet type and I don't have great communication skills when it comes to this.


Oh and by the way by my first post I didn't mean I wanted replies from members in my age range, everyone's replies from all ages and relationship statuses are great. English is not my first language so sometimes I have difficulty explaining and babble on too much.

Thanks to all again.

[kaiasgram]

Does anyone have any advice or personal experience on how to tell your partner? Like do I just blurt it out, make it serious in the "you need to sit down" way, or make it funny? This question may sound silly, but I'm really the quiet type and I don't have great communication skills when it comes to this.

Hi Bella, your question does not sound silly, in fact your story and how you've introduced yourself here is endearing and will undoubtedly be helpful to someone else down the line.

If you were in my counseling office asking for advice on how to tell your boyfriend about the bipap, I'd ask you: If you imagine taking each of the three approaches you mentioned, which feels the most true to who you are and how you deal with things? That's probably the way to go -- just being true to yourself. If you're nervous, just give yourself permission to be nervous and go for it! I have a feeling that you will be very relieved once you've told him -- no matter how you approach it. No more heavy scary secret to carry around. And you'll be giving him the chance to show you what he's made of, by how he responds. Oh, and give him permission to be a little awkward about it at first, too!

Best wishes!

[Sheriff Buford]

This has been a wonderful post... DoriC is a great example of how a wife should be and mammagoober's post was excellent. I'm a little old fashion. My two cents (and remember... it's less and less every day) is if I was single (and I haven't been for over 40 years) is that there are certain things I would wait to tell my potential spouse until I know its time. It appears that "knowing when it's time" and "how to tell him" are your questions. When you love a person, they accept you as you are and when health issues come up, it doesn't matter because you love them. It's just a a mask that blows air. Best wishes to you!

Sheriff

[DoriC]

Ah, that's a hard question. It depends on how you communicate with each other on other subjects. In my case, if I know my husband will worry about something all out of proportion (which he does sometimes), I'll be nonchalant about his needing to have a repeat blood test because the Dr had some concerns. That lifts his mood. If he needs to really change his behavior or life style in an important way which I know he'll probably ignore, I have to get real serious in a "let's sit down and talk" mode. On the subject of cpap, at first he was very unhappy and discouraged, not for himself, but that I'd have to be his caregiver(he's somewhat disabled). I gave an "Oscar-winning" performance, telling him how much I loved him and that he'd do the same for me,although I didn't feel so loving at first, but what really did the trick was he started calling his mask "his girlfriend" and did I mind if we had "an open marriage"! That became our private X-rated "joke". So you see, it's all about your communication styles, sometimes it doesn't work the way you planned so you have to back track and try another angle. I've been at this for a LONG time!