New Beginnings are terrifying!

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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SusanWink
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Re: New Beginnings are terrifying!

Post by SusanWink » Sun Mar 11, 2018 9:33 am

Hi Rebamom,

I’m a newbie to CPAP. My sleep study was a nightmare too and I spent most of the next day dozing or in a daze. I almost had a panic attack when I tried a full face mask, and I haven’t had a panic attack in decades. I worried to death about “having to” use one of those “stupid machines” and put off getting it as long as I reasonably could, knowing my doc would keep nagging.

I’m about two months in now and cannot imagine not using it. I look forward to using it. I even enjoy the ritual of washing the pieces. At first I was thinking my improvement was not dramatic, but in retrospect I think it is at least somewhat dramatic. I love actually SLEEPING when I’m I’m bed 😊.

There are many mask styles and different hose configurations, so if you don’t get it right the first time, do not give up.

I hope you’re able to get going soon so you can start working on the right configuration for you.

Susan

Rebamom
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Re: New Beginnings are terrifying!

Post by Rebamom » Sun Mar 11, 2018 9:41 am

SusanWink - thank you so much! I can't get quite as excited right now but maybe one day. I should pick up my machine by Tuesday and will just do it. I am researching today how I can rearrange my room to use it, put it away quickly in the morning, etc. so I can make it a part of my daily routine. Hopefully by scheduling it into a routine, will make it easier to keep using. God Bless You and all those who are helping!

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Julie
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Re: New Beginnings are terrifying!

Post by Julie » Sun Mar 11, 2018 11:40 am

Why 'put it away quickly' in the am? I think most of us just leave the machine where it is (or in a bedside drawer) and cover the mask somehow. It's nothing to be ashamed of.

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Barbee
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Re: New Beginnings are terrifying!

Post by Barbee » Sun Mar 11, 2018 11:42 am

I leave my machine out all the time so I will have no excuses not to use it :D
I bought one of those fabric storage cubes that match my room. Just wind the hose around the machine and set the cube down over it. Keeps dust off and looks great.

Rebamom
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Re: New Beginnings are terrifying!

Post by Rebamom » Sun Mar 11, 2018 11:46 am

Thanks Julie and the answer is I could leave it out for the next 12 days, then I will be moving into my new home. I will need to put it up there as I purchased this home to be closer to family - who if I know them will be stopping in unannounced for a couple weeks (gotta love them though). At this point not ready to explain it to family or friends, especially my grandkids. Right now, just a comfort/privacy thing.

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MrsRinPDX
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Re: New Beginnings are terrifying!

Post by MrsRinPDX » Sun Mar 11, 2018 12:03 pm

Rebamom wrote:
Sun Mar 11, 2018 11:46 am
Thanks Julie and the answer is I could leave it out for the next 12 days, then I will be moving into my new home. I will need to put it up there as I purchased this home to be closer to family - who if I know them will be stopping in unannounced for a couple weeks (gotta love them though). At this point not ready to explain it to family or friends, especially my grandkids. Right now, just a comfort/privacy thing.
I guess it depends upon how old your grandkids are. My daughter is eight and she understands that mommy needs the machine to stay healthy. She doesn't touch it. It also helps that a classmates' father uses a CPAP machine and mask too, so it is no big deal.

I also purchased a pawprint Snuggle Hose hose cover to make it appear less scary looking. https://www.snugglehose.com/store/p96/White_Paws.html

The added benefit is the hose cover is soft on your skin.

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Machine: DreamStation BiPAP® Auto Machine
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Rebamom
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Re: New Beginnings are terrifying!

Post by Rebamom » Sun Mar 11, 2018 12:21 pm

Awww that's cute and not expensive - Thank you - I had considered making something, but that's affordable enough.

I'll have to see how I do with this before making a final decision. My instincts are to always protect my family and that means not allowing them to know if anything is wrong with mom/grandma/daughter/sister. Knowing what I have learned in the last couple days I now understand that this won't kill me, so definitely not something to worry anyone else about. That is a blessing.

The one thing to keep in mind and I'm sure I'm not alone is that coming to forums such as this allows me to talk about it, my feelings etc - a place where no one really knows who I am and I get good advice/information and support needed without ever having to discuss it with family and friends. It's a joke in our family, but unfortunately very true - when asked if I will ever marry again, Mom tells everyone "her computer is her husband". Very nice to have a "husband" that doesn't yell back, lol!

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Bertha deBlues
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Re: New Beginnings are terrifying!

Post by Bertha deBlues » Sun Mar 11, 2018 12:46 pm

Rebamom wrote:
Sun Mar 11, 2018 12:21 pm

I'll have to see how I do with this before making a final decision. My instincts are to always protect my family and that means not allowing them to know if anything is wrong with mom/grandma/daughter/sister.
On the other hand . . . sometimes it's good to share with family. My older brother had told me several years ago that he had sleep apnea and used a CPAP machine. I forgot about it until I was diagnosed, then I thought "hey, isn't that what he has?" I called him and we had a really good conversation. We discussed notes about our symptoms, machines, masks, etc.
Edit: I also told my adult son so that he could be aware of symptoms to watch for.
And in the end the love you take is equal to the love you make. - Paul McCartney

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Goofproof
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Re: New Beginnings are terrifying!

Post by Goofproof » Sun Mar 11, 2018 12:53 pm

Rebamom wrote:
Sat Mar 10, 2018 6:05 pm
Thanks LSAT for your thoughts. I am trying to be positive - but the fact don't change - my job will wake me, older folk need medical attention in the night - these are not things I can change. Waking up with that hose around my neck WAS terrifying so how will it not happen again?

I am the most positive person in the world - but I am plain scared! Scared to admit my body doesn't function properly, scared that if I don't find a way to get past my fears I could die, scared of the whole darn thing. And just think I don't get the machine for a couple more days.

The negative person would not even try - I am willing to try but I have the limitations mentioned above - they are just a fact of life like accepting that Cpap may also be a way of life. My concern/question is can it still work?
I'm probably the most NEG person here, however I'm not Dumb, I use my XPAP all night every night, for 13 years, not 100 yet, but without XPAP I would not have made it past 2007.

I am a little scared of spiders and snakes I can't find to kill. (just too fast) Smart people are Scared, but they prepare to overcome, the things that scare them. You are not paranoid, if they really are out to get you. Jim
Use data to optimize your xPAP treatment!

"The art of medicine consists in amusing the patient while nature cures the disease." Voltaire

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Julie
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Re: New Beginnings are terrifying!

Post by Julie » Sun Mar 11, 2018 12:55 pm

I grew up in a house where 'nothing was ever wrong' with family, where they 'protected' us from life... and have been paying for it ever since. Do NOT protect your kids or grands from life! They need to know stuff happens - and of course they themselves must have had childhood illnesses, etc... and that you are human and fallible and vulnerable. They will automatically see that you can also be strong when necessary (and a good example) but not invincible. Life isn't like that and the consequences of pretending it is are long lasting and lousy. Don't do it. And why shouldn't they know you have a breathing problem when asleep? They possibly could feel afraid to sleep for a night or two, though explaining that it happens to older people almost all of the time and only very rarely to kids will go a long way to helping. And so what if they feel anxious on occasion - it's part of life and they'll need to develop coping skills. Don't protect them from ilfe!

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Goofproof
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Re: New Beginnings are terrifying!

Post by Goofproof » Sun Mar 11, 2018 1:08 pm

Julie wrote:
Sun Mar 11, 2018 12:55 pm
I grew up in a house where 'nothing was ever wrong' with family, where they 'protected' us from life... and have been paying for it ever since. Do NOT protect your kids or grands from life! They need to know stuff happens - and of course they themselves must have had childhood illnesses, etc... and that you are human and fallible and vulnerable. They will automatically see that you can also be strong when necessary (and a good example) but not invincible. Life isn't like that and the consequences of pretending it is are long lasting and lousy. Don't do it. And why shouldn't they know you have a breathing problem when asleep? They possibly could feel afraid to sleep for a night or two, though explaining that it happens to older people almost all of the time and only very rarely to kids will go a long way to helping. And so what if they feel anxious on occasion - it's part of life and they'll need to develop coping skills. Don't protect them from ilfe!
So True, Life doesn't come without pain and suffering, without that you can't appreciate how good it is. Don't be a Grasshopper, be a Ant! Work with others, insure survival of the group. Jim
Use data to optimize your xPAP treatment!

"The art of medicine consists in amusing the patient while nature cures the disease." Voltaire

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Jas_williams
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Re: New Beginnings are terrifying!

Post by Jas_williams » Tue Mar 13, 2018 3:18 am

If you really do need to hide your machine get a bed side cabinet with a drawer get a hole cut in the back for the cable pop the machine in the drawer leave the drawer open and have the hose come out when in use pop the mask inside the drawer and slide he drawer shut to put the machine out of sight during the day ?


Jason

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Rebamom
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Re: New Beginnings are terrifying!

Post by Rebamom » Tue Mar 13, 2018 3:24 am

Thanks Jason - I've looked at those and taking them into consideration.

So wish me luck - the journey begins tonight.

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booksfan
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Re: New Beginnings are terrifying!

Post by booksfan » Tue Mar 13, 2018 8:17 am

I started on CPAP mid-January. I leave the (white) machine on my nightstand, the mask on my pillow. My granddaughters, ages 3 and 5, know that Grammy needs to wear this special mask to help her breathe when she sleeps, just like Grandpa. They are curious about it, find it interesting, not the least bit frightening. He has a matching black machine on the opposite nightstand! They occasionally spend the night with us and since they've been old enough to come into our room, they've seen him with a mask in the morning. We also told our children, because I understand there is a possibility they may also develop sleep apnea. They both sometimes snore, although not terribly bad, but it is something to keep in mind.

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Rebamom
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Re: New Beginnings are terrifying!

Post by Rebamom » Tue Mar 13, 2018 8:55 am

Thank you Booksfan! Something to keep in mind.