Can u help me get over my embarassment?

[MoneyGal]

Oh, this is so silly; but I need some help.

Before I was diagnosed with sleep apnea, I agreed to go camping with my local Sparks unit (I am a Sparks leader; Sparks are the precursors to Brownies and then Guides in Canada).

I am meeting with the other leaders this week to discuss our camp arrangements. Because our girls are young, we do not do outdoor camping - we will be in an unheated, powered barn with bunk beds.

I need to find a way to tell the other leaders that I will be bringing my CPAP machine on the trip, and that I must be assigned a bunk with a convenient power source.

Except I am so embarrassed that I don't know how to start the conversation. I know this is ridiculous! But does anyone have an "approach" or a script that they have used in broaching the conversation with people they don't know well?

I guess I feel as though that sleep is so intimate; although I've told lots of people about my diagnosis, they aren't people who will have to accommodate it in any way.

Help?

[bickhart814]

Moneygal,

There is nothing to be embarrassed about, I think that this would be the perfect thing to teach your group all about OSA, It is the fact of life that we have OSA. More than likely they already know someone that uses a XPAP equipment. I personally would enjoy teaching them about this. Chin up and go for it.

[Gerryk]

Moneygal, nothing to be ashamed of. Just tell them you need to be near an outlet. You are lucky you are inside and have power.
I am a leader for cub scouts and we camp without power but have it nearby. When I brought up the question one of the leaders said just leave that machine home for the night it won't bother us if you snore. I explained to this woman that it isn't to stop me from snoring it is so my airway doesn't become restricted and I stop breathing.

Some people just don't want to understand or are ignorant to what OSA and CPAP is. You can explain it to them if you have to or just ignor them.

Happy camping.

[john_dozer]

Come out of the closet. You might encourage someone else to join the lifestyle and save them a short lifetime of misery.

[jweeks]

Just think how embarrassed someone might be if they don't use CPAP for a night, wake up foggy, then crash their car and kill a few of the kids that they are driving home from camp. That would be way bad. You can never be embarrassed about being responsible or taking care of a very serious health problem. Everyone that I have chatted with about what I am going through has been both very curious to learn more and has been very supportive. Especially some of my co-workers. The only person who said anything negative so far is one very vocal family member who is critical of everything I do. We are all stuck out here on this small blue planet in the hinterlands of the galaxy, so lets make the best of it.

-john-

[kteague]

The first time is probably the most awkward. My guess is you will find others who either have family members who use cpap, use one themselves, or maybe you'll find out they should! The discussion of sleeping arrangements sounds like a natural "in". I want to say to just be matter-of-fact about it, but I'd probably end up making a joke about it to break any sense of awkwardness I might feel.

You might want to think thru showing it to the girls before you actually put it on. Maybe initiate a conversation about their favorite things that they like to sleep with (favorite toy, blanket, pet, pillow, etc.) Show them your favorite thing, and maybe let them feel the air that comes out and simply tell them it helps you breathe better when you sleep.

I can't tell you how to feel about this. I can only say it is surely a much bigger deal to you than anyone else who will be there. It just may be an educational moment, one that your matter-of-fact handling of this leads someone else to seek treatment for themself or a family member. So go out there and take one on the chin for the cause!

Kathy

[elader]

Embarrassed to be doing something that could save your life? No way lady. Be ashamed of the people out there in denial about their OSA who are risking their lives and the lives of others. explain it to the kids, they will understand. The adults can stick it in their .....

[LoQ]

It's not silly. I would personally have a very hard time bringing this up myself.

But does anyone have an "approach" or a script that they have used in broaching the conversation with people they don't know well?

I've noticed in life that people who need others to accommodate them are most successful when they are willing to compromise on just about anything but the one thing they want. Figure out what is the SINGLE thing you need, and compromise on everything else.

In my view, the single thing you need is to be able to use your CPAP machine every night. So I would approach it something like this:

"Since I agreed to participate in this trip, I've had a change in my medical condition. I need to use a breathing machine at all times that I am asleep. If it is OK with you all, a bed near an electrical outlet would solve the problem for me. If that is not possible, then I am willing to stay home and let someone else take over my spot."

Also, I'm a big believer in not letting my fate be in someone else's hands. So my first impulse would be to reason with myself that *I* need battery back-up, anyway, so this would be an opportunity to get the equipment I need and take it on the trip. I would still tell them in advance, because it does make noise (they deserve to know this), and you would be bringing extra gear. I would still offer to stay home if they looked doubtful. Accommodate, accommodate, accommodate. I would listen carefully to each suggestion that is different from what I had in mind, and if it doesn't affect the SINGLE thing that I want, I would certainly be inclined to agree to it. Stay focused on what you actually need, not the solution you have predetermined is the right one.

I don't actually think you're going to have to stay home. The point here is that by offering to do so, you show extraordinary reasonableness and that you don't want your problems to become someone else's problems. It's soothing to the others to see that you are willing to put yourself out more than you are asking them to be inconvenienced. That makes people much more inclined to be "on your side" and want to accommodate YOU!

[jnk]

I would be very low key and simply give everyone the opportunity to be helpful. Here is one idea for an approach:

"Hey, does anyone know if one of the bunks is near a power outlet? I find I sleep much better when I use a quiet little air machine, and I don't want to put anyone's safety in jeapordy by having to run a long extension cord or anything."

Yes, that is an understatement that doesn't explain the medical necessity of it. But if your goal is not to disclose more unless you have to, that may make you feel better about it.

You don't have to defend to us the fact that you don't want to draw attention to yourself. I think that is a nice quality for anyone to have. True, we all need to be willing to be assertive when we have to. But I can relate to the desire not to make a big deal if you don't have to.

I hope it goes well!

jeff

[LoQ]

The adults can stick it in their .....

Hmmmm....would it be better to try to win them over, or to approach them with an attitude sure to alienate them? Have the adults pre-done something wrong here?

[yorkiemum01]

as a friend of mine once said.........."If you had asthma, would you feel the need to explain?"

[lindalrc]

My husband and I both use CPAPs. We traveled for two weeks in Denmark with our 9 year old grandson last summer. He understood the machines immediately, knew they were very important, and was diligent to keep suitcases in sight and being sure they (and assorted parts) were not forgotten. Super supportive!!

[SheZAAM!]

as a friend of mine once said.........."If you had asthma, would you feel the need to explain?"

I can fully understand the embarrassment. Asthma is not caused by being overweight. In my case, my OSA is caused by being fat, no 2 ways about it. There's contributing factors, but the primary factor is fatness. Therefore, I'm embarrassed about my CPAP too. I hide mine when we have company over that might be upstairs for a house tour, using our spare bedroom, etc.

I was going away with my mom last month, and would be sharing a hotel room. So I had to tell her. I was expecting an "Oh..no.....if only you weren't so overweight...." It actually went better than I thought. Turns out she suspects that my step-dad has it, because he stops breathing on his back. Plus he's one of the few people that snores louder than I did!

[mars]

Hi MoneyGal

My suggestion would be that you embrace your new found recovery, that you are no longer suffering from sleep apnea as you were before, and isn't all this wonderful!!!

When I first stopped drinking I thought that being a recovering alcoholic was absolutly marvellous, and I was happy to tell everybody and anyone (not necessarily a good idea with drinking), it was so much better than drinking, and pretending I did not have a problem.

But a lot of people do not think this way. It is about letting go of what others might think of us, and being true to ourselves.

The reality is that you will most likely find them very supportive, and if someone is not, you can practice letting go.

cheers

Mars

[boston]

just make sure you bring an extension cord, could solve your problem and you may need one anyway