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

[StuUnderPressure]

Why are the good ones (mamagoober & DoricC) already taken ? ? ? ?

Hope my wife doesn't see me typing this!
Truth be told, I would not trade her in!

[xenablue]

BellaNotte - you've had some wonderful responses, and although Dori is a couple of years your senior, she has such sound advice to share, as do a lot of the other posters on this forum.

I can understand carrying this knowledge around about your BIPAP, unbeknownst to your b/f of 18 months, so you can get very myopic about these issues.

Many here look at XPAP therapy as nothing more than having to wear glasses, or a hearing aid, or shoe inserts - just a medical device to correct that which needs correcting.

I was concerned at first whether my hubby would consider my CPAP an intrusion in the bedroom, but HE was the one who helped me relax about the whole thing. We find making humour works best - life it too short to take things too seriously and humour keeps the discussion much lighter.

Hang in there - you'll find a way to talk to him about this - when you're ready. There's nothing wrong with waiting to tell him until your relationship has deepened to that point where very personal issues can be revealed.

Cheers,
xena

[chunkyfrog]

After 18 months, and he still doesn't know? (what a good girl!)
Maybe he does, but is waiting for the subject to come up.
Leave your headgear hanging from the shower curtain; and when he sees it, say,
"Oh, I'll put that away. It helps me breathe while I'm asleep. Nothing kinky, really."
If he wants to talk more, fine, if not, the ice is broken,
--Example: if you have therapy software,he could see it on your computer.

[DoriC]

Why are the good ones (mamagoober & DoricC) already taken ? ? ? ?

Hope my wife doesn't see me typing this!
Truth be told, I would not trade her in!

Stu, as noted in my post, we do have an "open marriage"!

[gomer]

"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".


Getting or even considering getting a new bipap sounds to me like a perfect time to bring the subject up. It is something that was not happening months ago, its a NEW subject (a new machine). You have been given a lot of great tips already, so this just something I wanted to add to theirs.

I have MS (Multiple Sclerosis), not MD, but at one time they suspected I had MD, and was tested for MD. I have had to adapt almost all my life and I am waiting for the call to go in and pick up my first ?pap machine myself. (probably will be bipap??). I am also a needle diabetic on multiple shots a day etc.

I have one sort of unrelated tip; You are a person with MD, (muscular dystrophy) do not let your MD define you as a person. I have done more in my lifetime than most normal people. MY MS has limited me in some ways since my teens, but I adapted and found other things or other ways and other things I could do.

Now go share the good news about the prospect of getting a new bipap with your BF, and Best Wishes to the both of you!

[Uncle_Bob]

Bella

You asked about the mask venting into your partner. This did bother my wife for some time. Some masks vent with more noise than other thats for sure.
I use the nasal masks and liked the Resmed Swift LT for a while but that vented directly out in front of me regardless of wheather i had the hose going up over my head or down over my chin.

The best mask i have found is the Aloha, depending on how you have the hose it vents either 45 degrees upwards or downwards.

Regarding cuddling your partner I'm sure you can find a way to work that out. My wife cuddles into my back or we cuddle before i mask up at night.

Good luck

~UB

[the_nap_ster]

Hi Bella,

I am a younger woman too, and a newlywed. Both my now-husband and I started xPAPs together before we were married, and using them together has been really wonderful.

But I particularly want to focus on the "how to tell" question. I think people take a lot of cues from us in how we talk/feel about things in our lives. A girlfriend of mine wears contacts, and she was SO SCARED for her boyfriend to see her in glasses. She made a big deal out of showing him her glasses, and he was just confused by the whole production.

I think the same thing about xPAPs. A simple, "hey, have I ever shown you the machine I sleep with?" is all you need. Then show him the bells and whistles, maybe offer to let him to feel the exhaust if he wants, and tell him if he's lucky he'll get to hear it in action someday!

One of the best parts of a relationship transitioning to that "forever" phase is that you know that both of you accept the other 100%, in sickness and health. We all have fragile bodies, and they all need assistance sometimes. That's part of the joy of being human.

As far as snuggling, my husband and I cuddle face to face all the time, with both of us wearing masks. It only takes a second to shift into a position where the air isn't hitting anyone (unless it's hot and muggy, and that personal fan is just what the doctor ordered! ). I promise, this won't hold you back in any way.

Much love!

[Sheriff Buford]

My wifey call my mask, my "gas mask"! If I ever deserve a smooch while I'm masked up... she goes ahead and plants the smooch right on the lense... works for me...

Sheriff

[mamagoober]

Thanks STU.

I agree with gomer that getting a new machine would be a great time to bring up the subject. Definitely do it in a happy and light manner.

[chunkyfrog]

A new machine? Awesome!
The BF could also get involved with getting the software set up.
Let him help. (fingers crossed)

[archangle]

Honey, he's a guy. After the sex is done, he won't care if you're wearing a Darth Vader mask as long as you don't force choke him during the night.

Slight exaggeration, but not much.

[SethW]

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.

Perhaps this retelling of a Dave Barry story will help:

http://www.youtube.com/watch?feature=pl ... rR00#t=48s

He will not be thinking all of these things you are thinking. He will be interested in the machine. You mentioned that you are getting a new machine. Just starting talking to him about that. Be prepared to explain the differences between your new machine and your old machine (or what you hope they will be) and to explain the difference between your bipap machine does and what an ordinary cpap machine does. Your new machine may interface with a computer. That means in addition to being a machine it is a gadget.

If everything is not set in stone about which machine you are going to get, or then again even if it is, you can begin by asking for his help in trying to help you research and understand either which machine you could get or whether the machine you are getting is a good machine or not. Your basic criteria for that is that you hope it's a quieter machine. It's a significant choice that will affect how you'll be living on a daily basis over the next few years, after all. Isn't that a good touchy-feely way to bond over CPAP? Involve your boyfriend in what is important to you and forget all that other nonsense. This is basically the same advice that chunkyfrog gave you, only I have used many, many more words.

Also, I want to point out that I am exactly the person you should be asking for advice like this since I am nearly twice your age and involved in no relationship whatsoever. However . . . I will observe that when I showed my members of my family the mask, they were a little freaked out by it. Not because they felt any differently about me, but because they couldn't imagine how they themselves could sleep with something bulky like that on their faces (I have a full face mask). I explained to them that it's really not that bad at all, but they seem somewhat less than convinced. Anyway, their reaction had nothing to do with me. So the boyfriend might react somehow to the device since it's new and unfamiliar to him (maybe--we don't know if he knows anybody with a CPAP device, do we now), but don't assume that his reaction to the device has anything at all to do with what you have been worrying about all these months. It won't.

[lazer]

Honey, he's a guy. After the sex is done, he won't care if you're wearing a Darth Vader mask as long as you don't force choke him during the night.

Slight exaggeration, but not much.

[Thevicster82]

Hi Bella,
First time posting here, but your message caught my eye whilst searching for something else. Firstly, I'm 33 years old and I've been using a BiPAP since I was 10. Secondly, I have a Congenital Myopathy, which is not dissimilar to MD.
Obviously, I am now used to sleeping with my BiPAP myself (mostly!) but having grown up and started having boyfriends, I struggled with a) telling some of them I used it at night and b) worried that I would keep them awake too. Invariably, with some relationships I ended up having to sleep in separate rooms to my boyfriends because in keeping them awake, I couldn't sleep either. This didn't really interfere with my sex life though. I found just talking it through and explaining that it helps me breathe means they know how important it is. Like other people have said, if they cannot accept you for who you are (bipap included) then they aren't going to around for very long anyway. I have now found a wonderful man, who last year proposed to me, he sleeps like a log and his snoring drowns out my ventilator (till I poke him!) we recently found out he may have a sleep apnoea too, and although he can sleep through my BiPAP, he keeps ME awake because he has a restless leg syndrome. Nevertheless, he cuddles me a lot, in and out of bed, and he doesn't have issues with my condition. I am in a wheelchair too and he loves me for who I am.

[DoriC]

What a beautiful love story! Thank you for sharing. I hope you'll stay with us as I'm sure with your many years on bipap you may be able to help so many others here. Give your BF a hug from Dori!