Unsupportive Spouse (A Brief Rant)

DavidCarolina wrote:The sad reality is, nobody, including a family member, has any idea how you feel when you have a disease that eats
away at your well being.

Quite frankly, sometimes they even think youre using it as an "excuse".

The only exception is when they've had it THEMSELVES. Then they know.

Nobody knows how you feel but you......and God

I think that can probably said of just about any hardship that any of us experience.

I know personally, when I struggle with depression, no one around me really "gets it", unless they themselves have experienced it. (and you can often tell by their initial reaction when you say you are struggling with depression!)

UPDATE! Well, I must admit I was fearful(I have pretty severe asthma) so I spent a few minutes preparing myself at the side of the bed, put the mask firmly against my face but without straps,set the pressure to 6 and turned the machine ON! After the first jolt of air I involuntarily removed the mask but then replaced it and took a few breaths and after a few seconds it really just felt like a cool breeze from an open car window that wasn't even going too fast. I raised the pressure to 8 and again not too unpleasant. I kept the mask on for quite a few minutes at each pressure and I even tried to simulate a leak, not sure I felt much, but....when I raised it to 10, forget about it! Of course we don't have Flex turned on and I didn't feel like messing with the settings too much so I might have tolerated it better. And of course it wasn't done with me lying in bed trying to sleep! But even this short experiment has been helpful so I have a slightly better understanding of what's happening under that mask and now realize even more what all of you (and my Mike) have really accomplished. You're all amazing and deserve a long life! Thanks to Rested Gal and all of you who got on her "band wagon", you done good! PS: I plan to keep trying until I can actually know what 12 feels like. I can't believe sometimes Mike has to put his hand up to the exhaust to know it's on!

I've got the min set to 16.

You get used to it.

Dori!! You go Girl!!!

Thanks for giving it a try and telling us about it.
You've been helpful on this site and now can be even MORE helpful!!

DoriC wrote:UPDATE! Well, I must admit I was fearful(I have pretty severe asthma) so I spent a few minutes preparing myself at the side of the bed, put the mask firmly against my face but without straps,set the pressure to 6 and turned the machine ON! After the first jolt of air I involuntarily removed the mask but then replaced it and took a few breaths and after a few seconds it really just felt like a cool breeze from an open car window that wasn't even going too fast. I raised the pressure to 8 and again not too unpleasant. I kept the mask on for quite a few minutes at each pressure and I even tried to simulate a leak, not sure I felt much, but....when I raised it to 10, forget about it! Of course we don't have Flex turned on and I didn't feel like messing with the settings too much so I might have tolerated it better. And of course it wasn't done with me lying in bed trying to sleep! But even this short experiment has been helpful so I have a slightly better understanding of what's happening under that mask and now realize even more what all of you (and my Mike) have really accomplished. You're all amazing and deserve a long life! Thanks to Rested Gal and all of you who got on her "band wagon", you done good! PS: I plan to keep trying until I can actually know what 12 feels like. I can't believe sometimes Mike has to put his hand up to the exhaust to know it's on!

Will you marry me? Oh, wait, we're both married already.

DD

Whoo Hoo Dori! you're a good sport, thanks for sharing! kathy

Brave action Dori! Mike is a lucky guy!

DoriC wrote:UPDATE! Well, I must admit I was fearful(I have pretty severe asthma) so I spent a few minutes preparing myself at the side of the bed, put the mask firmly against my face but without straps,set the pressure to 6 and turned the machine ON! After the first jolt of air I involuntarily removed the mask but then replaced it and took a few breaths and after a few seconds it really just felt like a cool breeze from an open car window that wasn't even going too fast. I raised the pressure to 8 and again not too unpleasant. I kept the mask on for quite a few minutes at each pressure and I even tried to simulate a leak, not sure I felt much, but....when I raised it to 10, forget about it! Of course we don't have Flex turned on and I didn't feel like messing with the settings too much so I might have tolerated it better. And of course it wasn't done with me lying in bed trying to sleep! But even this short experiment has been helpful so I have a slightly better understanding of what's happening under that mask and now realize even more what all of you (and my Mike) have really accomplished. You're all amazing and deserve a long life! Thanks to Rested Gal and all of you who got on her "band wagon", you done good! PS: I plan to keep trying until I can actually know what 12 feels like. I can't believe sometimes Mike has to put his hand up to the exhaust to know it's on!

Way to go Dori! You are certainly a trooper and a credit to your family AND this forum!!!

Good for you Dori!

Way to go Dori. It doesn't really take long to get used to the higher pressures.
Now you know what it is sort of like. Not nearly the gale force winds you expected was it?

Dori,

On behalf of all of those with spouses who are still too scared to try: THANKS! And thanks for saying:

But even this short experiment has been helpful so I have a slightly better understanding of what's happening under that mask and now realize even more what all of you (and my Mike) have really accomplished.

Because even though we do "get used to it" (or at least most of us do----I'm still not 100% "used to it" with my 6th month anniversary only a week away), it can be a long hard slog through some really difficult times. And some 50% of the folks who start down this road don't make it to "sleep with the machine every night, all night long".

Hi Drowsy.

Here's my 2 cents worth -

During the "get to know your mask" time, I sleep in the other room just due to the fact that as you well know (and others here on the forum) it takes several nights to get adjusted/build a trust relationship with your mask. I've been known for the first few nights to make tweeks here and there in the middle of the night. Once I feel comfortable with it, I return to sleeping with Hubbs.

As for sleeping compatability, Hubbs and I were NEVER for the almost 23 years of marriage this May until this past June we purchased a temperpedic bed because of his back which has made ALLLL the difference in the world!!! He's an active sleeper and I felt every move!!! Going to bed with him was like getting into the boxing ring at night wondering if I was going to come out a winner in the morning with a good nights sleep which most of the time I didn't. All these years I made up excuses to sleep in the other room which would guarantee me a restful nights sleep. Now we hardly feel each others movement!!! We can leave the bed to pee and never feel the other person leave or return to bed. Now, I look forward to having a man in my bed and someone to cuddle up too before going to sleep.

Again, my 2 cents worth.

Starlette

This has been a wonderful subject and I have enjoyed reading everyone's responses. The laughs, sighs and tears I have gotten from this has been priceless.

My condolences to those whose spouses have passed. Hugs ~

It's true that each person, or spouse shows his or her support in their own way, and I think most spouses are probably supportive. It must be hard for them as well. They must spoon around us - otherwise they get cold air on them. It's hard for us to speak with our masks on. The whole mask/machine thing is rather intrusive - and not at all romantic. So "things" must be planned - where before we could be spontaneous. I give a lot of credit to the spouses and lovers as well.

But, I must admit that I love the idea of having the spouses try the mask with no ramp.

I am so new to this forum that I do not know who Dori is - but what a wonderful woman you are for trying the mask and upping the pressure. That, to me, is the ultimate support a spouse can give her spouse who is on CPAP.

I have no spouse or boyfriend - but I do have dogs. By Dalmation/Lab mix doesn't care about the machine and mask whatsoever. As long as some part of his body is touching some part of my body is all that matters. Now, my boy Westie thought I was an alien when I first starting CPAP 2 weeks ago. He growled at me and backed away. He's fine now and he'll cuddle up to me again now - but I lay a lightweight blanket on him to keep the cold air off of him.

I went from a pressure of 9 to 10 last week and that one extra amount of pressure was like WHOA to me that first night. Now, I wake up in the morning wondering if my machine is on.

WonderlandGirl wrote:This has been a wonderful subject and I have enjoyed reading everyone's responses. The laughs, sighs and tears I have gotten from this has been priceless.

I am so new to this forum that I do not know who Dori is - but what a wonderful woman you are for trying the mask and upping the pressure. That, to me, is the ultimate support a spouse can give her spouse who is on CPAP.

I have no spouse or boyfriend - but I do have dogs. By Dalmation/Lab mix doesn't care about the machine and mask whatsoever. As long as some part of his body is touching some part of my body is all that matters. Now, my boy Westie thought I was an alien when I first starting CPAP 2 weeks ago. He growled at me and backed away. He's fine now and he'll cuddle up to me again now - but I lay a lightweight blanket on him to keep the cold air off of him.

Welcome WonderlandGirl! I love your story about your doggies! Thanks for the kind words and glad you enjoyed this thread as much as I have!

DoriC wrote:(I have pretty severe asthma)

ooops.
ummm, Dori, on second thought...

Wait, Dori, wait!!!
ooops.
Too late.



Nah, it's ok, even with asthma (so says someone who isn't a doctor)...

Anyway, "asthma" isn't listed as a contraindication.

Dori, I am mightily impressed. Not only did you do it, you TWEAKED it.

Just think about that for a second. How many non-cpap-using spouses, who don't happen to be an RT or some such thing not only "try it" but start TWEAKing it up and up on their very first try?!!

DoriC wrote:PS: I plan to keep trying until I can actually know what 12 feels like. I can't believe sometimes Mike has to put his hand up to the exhaust to know it's on!

Wear it for a nap sometime, Dori.. in auto mode 7 - 10, A-flex 3. When you wake up from a 20 or 30 minute nap, you'll be putting your hand up too, to see if it's still on.
Just like WonderlandGirl said:
"Now, I wake up in the morning wondering if my machine is on."

You know...I think you and Mike might very well be on your way to being a pair of happy husband/wife cpap'ers.

After all, you do snore, don't you, Dori? Just a leetle?

Hey, I'm proud of you for trying it. Seriously.

You're a born tweaker, Dori. Just think how much fun you'll have doing your own downloads, too. And working on lowering your own AHI. You've got Mike dialed in so well. Time to let him sleep peacefully while you work on your own settings.