feeling like a patient or experiment

[bprater]

As I said in an earlier post, I am new to the CPAP patient world !! I am just wondering if anyone else feels the way I do. Every night when I go to bed I go from a regular person/mom/wife to feeling like a hospital patient or lab rat. I feel like me all day and then I go to bed and my husband or if my kids are sleeping with me that night (husband is working nights some of the time) they are way over on the other side of the bed and I am laying flat on my back hooked up to a machine and feel like no one wants to come near me. Guess its hard for someone to want to snuggle up to or hug a person with a hideous mask on their face. Does this go away for all concerned and does anyone have a good name for this syndrome?

[Wulfman]

As I said in an earlier post, I am new to the CPAP patient world !! I am just wondering if anyone else feels the way I do. Every night when I go to bed I go from a regular person/mom/wife to feeling like a hospital patient or lab rat. I feel like me all day and then I go to bed and my husband or if my kids are sleeping with me that night (husband is working nights some of the time) they are way over on the other side of the bed and I am laying flat on my back hooked up to a machine and feel like no one wants to come near me. Guess its hard for someone to want to snuggle up to or hug a person with a hideous mask on their face. Does this go away for all concerned and does anyone have a good name for this syndrome?

That's ridiculous!
Not if they really love you. What would you expect if you were confined to a wheel chair.....or worse?

It's called the "Pity Party Syndrome". Lots of people show up here with it. They always look at the glass as half empty, too.

My advice is to get over it as soon as you can.

PS. I just read your other post and I don't know where you got the idea that you HAVE to sleep on your back. That's silly. I can't sleep on my back......I'm a dedicated side-sleeper. Sleeping on one's back is usually the worst position for having apneas. Side-sleeping is much better if the person can sleep on their sides.


Den

[robysue]

then I go to bed and my husband or if my kids are sleeping with me that night (husband is working nights some of the time) they are way over on the other side of the bed and I am laying flat on my back hooked up to a machine and feel like no one wants to come near me.

Although I don't sleep flat on my back, hubby was basically doing the same thing to me: Sleeping at the far edge of his side of the bed where with the hose, it was difficult for me to get that far over. I asked him about it: He told me he was trying to be thoughtful and give me enough room so that once I finally was asleep with the mask on my nose, that his movements and his getting up at night to go to the bathroom would be less likely to disturb me and wake me up from my rather fragile sleep. I explained that he's out of reach since I'm tethered to the dang machine and I've asked him to move back towards the middle of the bed. Some nights he remembers to; others he doesn't. Too many nights in a row where he forgets, and I remind him again.

So talk to the hubby and maybe the kids and let them know you need and want them to cuddle with you and that they are too far away for you to come to them.

[rested gal]

Guess its hard for someone to want to snuggle up to or hug a person with a hideous mask on their face.

Well, being hugged or cuddled from behind is kind'a nice, I think. Like spoons.

Oh, but you said you're laying flat on your back.
You don't have to lay flat on your back while using CPAP. But perhaps that's your preferred sleeping position.

If you or your husband gets the urge to do more than cuddle, there's no rule that says you can't whip that mask right off. And there's no rule that says you can't smile at him while he's unclipping it for you. Even in the middle of the night if that suits both of you. Do...whatever you both want to do... and simply put the mask back on when ready to sleep again.

I understand that you think the appearance of the mask and hose is too unappealing and invalid-ish looking for your husband to be interested in cuddling (or more) once you've got the mask on. You might be surprised at how easily he can look past that and still see *you.* The "you" he's always loved and known. And still does. As robysue said, it might be a good thing to talk with him sometime soon...about your feelings and your worries about "his" feelings. You might find that he's VERY happy you use it, because he understands how it will give you a healthier, longer life for BOTH of you to enjoy together as the years go by.

feeling like a hospital patient
----
hooked up to a machine

True - it can take time for some people to get past the images a machine and mask conjure up...of a seriously ill person in ICU. That whole misconception of CPAP meaning "hooked up to a machine" as if the person were in a hospital room.

I think of my cpap therapy more like this:

I use glasses to help me see more easily when I'm reading small print.
I take my glasses off when I'm not reading.

I use a cpap machine/mask to help me breathe more easily when I sleep at night.
I take my mask off when I'm not sleeping.

Needing and using reading glasses for certain things (reading, watching TV, using the computer) doesn't make me an invalid or a "patient."
I consider myself "a reading glasses user."

Needing and using cpap for a certain thing (breathing while sleeping) doesn't make me an invalid or a "patient."
I consider myself "a cpap user."

I look at CPAP for what it essentially is -- a little fan blowing plain room more directly at me (very "directly" via the mask) -- than a regular room fan could.
I want that fan to blow as directly as possible at my airway, 'cause my airway tends to relax too much during sleep...relaxing to the point of soft tissues collapsing together. So, I use a mask to direct the fan's air where I want it to go -- to keep the soft tissue inside my throat pushed aside for easy breathing.

Pretty simple. I think of it as a glorified leaf blower.

Perhaps you can start thinking of it as a special little bedroom fan (which it is) instead of as a piece of ICU equipment (which it's not.)

And start thinking of yourself as a CPAP user (like being a reading glasses user) instead of as a "patient." (I hate that word, too. )

You simply use CPAP and the mask when you want to sleep. Then you take off the mask in the morning and go about your merry way. Helps keeps you out of ICU where you really would be a "patient."

There are ways to make the whole setup look less "hospital-ish." A soft fleece or flannel hose cover in a pretty color or design gets rid of the "hospital" look of the main air hose. One of this forum's members ( Padacheek is her nickname ) makes practical, attractive hose and strap covers. Mask covers even, for some kinds of masks. Lessens the "hospital" look as well as adding comfort to mask straps and headgear.

If your children are young, you can make all the "equipment" stuff less strange by thinking up some games. They might have fun sticking tiny decals on the outside plastic of a nasal or FF mask..."Let's decorate mommy's mask." If the decals are easily removed, they could choose a new one each night...a new family tradition! Or let them autograph the outside of mask straps with their first names. Or initials and ages. Play a daytime game with the CPAP hose and the machine running... "Who can make it blow a ping pong ball the farthest across the bed?" Have them help you pour out the left over humidifier water into a glass in the morning and let them choose what food color to drop in the glass -- then one gets to water a plant with the "pretty" water. Might even be a teaching opportunity there! "Want to see what happens to the red water in the glass if we add another color? Here, Cathy, you add a drop of yellow to the red. Wow, what's that color now? Magic!!"

bprater, there are all kinds of ways for you, and your husband, and your children to view "CPAP." Ways that aren't hospital-like at all.

You're not a patient.

You're simply a CPAP user -- and even that's only when you sleep.

Welcome to a forum full of other "CPAP users."

[Guest]

My DME guy that set me up with my CPAP machine made it sound like you needed to work up to sleeping on your back that was the ultimate goal. I love my side and stomach sleeping! I have very mild sleep apnea with no daytime drowziness and no tiredness and no napping. All my settings are pretty low on my machine. I dont blame my husband and kids for feeling awkward around me in bed. They have this mom who is hooked up to a machine that makes funny noises and something sucked on to the front of her face. If I were in their shoes I would feel awkward about touching that person or feel like it would be hard to snuggle if you were hitting a hose or a mask a lot.

Besides, I have had my machine for a very short time and fought off getting it for two years now I think I deserve a little bit of pitty me time esp. if I am stuck with this for the next 25 years!!!!!
Beth

[LSAT]

Normally sleeping on your back requires a higher machine setting than sleeping on your side (preferred position). When you are on your back it is easier to shut off your airway and the machine needs to work harder to keep the airway open. Most sleep apnea information recommends AGAINST sleeping on your back.

[bprater]

You guys are great! I love some of the comments you guys posted and a few of them made me smile and some of the pictures (dont know the computer lingo for it) such as the redbird in the tree made me smile. Been feeling a little sad and frustrated.

bprater

[Madalot]

I just had to comment on this thread (and welcome bprater) --

The first night I had my ventilator with the oxygen concentrator, I just sat there. I told my husband that our bedroom now sounded like a hospital room. It was so loud and noisy. So depressing. And I started to cry.

My husband, bless his heart, said it wasn't that loud (it was) and it was okay because we were doing what we needed to do. He patted me on my arm, kissed my head and told me he loved me. I laid down and within a few minutes, fell asleep.

After a couple of nights, the noise didn't seem so bad anymore and I don't think of my bedroom like a hospital room. It's still my bedroom and I've got this neat equipment that lets me breathe at night.

It's all good.

bprater -- it will be fine. You will be fine. Others have given you excellent examples of how to view all this -- like wearing glasses. No big deal.

[chunkyfrog]

Good sleep makes me feel sexier. Just one more thing to take off s-l-o-w-l-y.
And even more props for dirty visual puns. nudge, nudge.