Can u help me get over my embarassment?

[alnhwrd]

Lots of good advice so far. I would just keep it simple and easy for people to understand. "I snore unless I use a machine that helps me at night, so I need a bunk near an outlet."

[Sleepin'jax]

I agree with most of the respondents....what a GREAT chance to teach....the young, and not so! Might wanna bring your mask to the meeting to explain? I would surely look for a chance to show it to the girls b4 the trip, just to familiarize them.
Don't be embarrassed.
Have a great time.

[CollegeGirl]

Thumbs up to boston...I have NO doubt that sleep apnea causes significant weight gain when it goes untreated.

For those of you tired of being discriminated against because of your size...google the term BBW. It will change your life.

(And yes, ignore the porn sites, just like with any other search you do. lol)

[Debjax]

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.

Don't take that to the bank. My husband has had OSA for years, I just got him to admit it after I was officially diagnosed. He is NOT overweight. Also, based on the symptoms, I have had OSA for most of my life, and until about 10 years ago, I was a size 8.

OSA is not necessarily a disease of obesity, although I should imagine it can aggravate it.

[SacramentoGranny]

Let me throw out an idea I haven't heard anywhere...what if the reason that apnea causes obesity stems from why we eat? Since I was diagnosed with apnea I have not been able to lose weight. That was discouraging particularly when I exercised regularly and watched my diet. From the very beginning of CPAP therapy I had suffered from severe aerophagia. Lowering the pressure resulted in poor sleep (apneas must have returned). I had also noticed from the first night of treatment that I never quite really felt "well". How can you describe to your physician the symptom and after almost two years went back to the HMO to ask for an auto-titrating machine.

[SacramentoGranny]

Let me throw out an idea I haven't heard anywhere...what if the reason that apnea causes obesity stems from why we eat? Since I was diagnosed with apnea I have not been able to lose weight. That was discouraging particularly when I exercised regularly and watched my diet. From the very beginning of CPAP therapy I had suffered from severe aerophagia. Lowering the pressure resulted in worse sleep (apneas were not all prevented). I had also noticed from the first night of treatment that I never quite really felt "well". How can you describe to your physician what is going on when you don't think the machine is doing its job? After almost two years (had a straight CPAP at 11) I requested an auto-titrating machine. To make a long story quite short I was retested using several machines at the Sleep Lab and issued a BIPAP (which was later reprogrammed to be on "auto") and for the first time I really began to sleep well. That machine was jerked away from me and an inferior machine replaced it (HMO didn't want to pay the rental costs).

What suddenly hit occurred to me was that when I felt "dizzy, light-headed, not there" I tended to eat to try to overcome the feeling. I felt better for a short time but the tired feeling returned. Note that when I was using the Auto BIPAP these symptoms did not occur. I was awake, not tired, and felt great. I was even able to lose weight during the short time I had the BIPAP.

So here is the question: is it possible that the apnea causes us to overeat to compensate for the tiredness? And, if we don't get proper therapy is it possible that we continue to overeat?

I am currently using a RemStar Auto M Series with C-flex. If I the machine is set high enough to combat the apneas it results in aerophagia. If the pressure is reduced I am tired all of the time. I am still trying to get the machine I originally requested, the A-Flex and hope it will work for me.

[Georgio]

I took my battery pack on a Boy Scout trip this past week. One of the adults asked, "What is that ....a TV?" I said. "No, I have sleep apnea, the machine blows a little air pressure in my nose and I don't snore or go without oxygen at night." Another said, "I'm on cpap too." Boy did I have a lot of information for him! He has the old Resperonics "tank", and travels. He went nuts over my M-Series and will probably get one. Get a bottom bunk too so you can hang your hose. It is a small surprise to people but a simple explanation is all it takes.

Have fun!

Georgio

[PSGMAN]

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?

Georgio made a good point. You can look at this as an opportunity to possibly save someone's life. Just think if you had a similar experience as Georgio had, except maybe it would be someone who wasn't currently on CPAP. I would embrace the idea of having sleep apnea, because you are doing everything to stay healthy by bringing that machine with you. If this camping trip was like Groundhog's Day with Bill Murray, you would be much more liked the next day when you wore you CPAP versus not wearing it.

[MoneyGal]

You guys are all so great. Thank you for the advice, stories, support and thoughts!

I had the meeting with the other Sparks leaders. It was funny - turns out one leader was so intent on sharing her particular sleep "issues" (all sound like sleep hygiene issues, no sleep disorders) that I literally had no chance to interject, "by the way..." I'm also thinking, well, this woman has "primed the pump" for us to be aware of each other's sleep, and my issues are nowhere near as bizarre as hers (she requires extremely exacting conditions to sleep - I just need a machine! ) - so my CPAP may seem positively "normal" in this context!

So I think I'm just going to show up, CPAP in bag, and proceed as if it is all routine - as we are divvying up the beds, say - Oh, I need that one near the outlet.

I really appreciated having a place to share my story and ask for advice. Sometimes I think having a supportive place to come is the MOST important factor in living with OSA.

[kteague]

I have not had occasion to spend a nite with anyone but family and one close friend since starting cpap. But before that I did have occasions where coworkers and sometimes even strangers were witness to my extreme flailing periodic limb movements. They happened every time I dozed off, and I dozed as much as I was awake. Any time I was going to be riding in a car or other situations with someone, I casually forewarned them of what to expect, and told them it was ok to laugh, but if it bothered them to just wake me me up. Most were awed but not appalled, accepting it matter of factly as I had presented it.

One exception was when a on girls' getaway to Savannah, GA. We had just seen the "ghost" tour trolleys about town and read some of the town's reputed haunted history behind those tours. My two travel buddies wanted to make a quick run into a bakery, but I opted to sit behind the wheel of the van and catch a few winks. Upon their return, they were startled by my head, both arms, and both legs rising and falling simultaneously - all looking very "ghostly"! Priceless! Don't think any tour could have caused them to be more spooked.

Maybe my sense of humor is skewed, or maybe humor is my self defense mechanism, but hey, it works for me.

[LoQ]

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.

Don't take that to the bank. My husband has had OSA for years, I just got him to admit it after I was officially diagnosed. He is NOT overweight. Also, based on the symptoms, I have had OSA for most of my life, and until about 10 years ago, I was a size 8.

I think she can take it to the bank. She was not talking about the cause of your husband's OSA, or of your OSA, she was talking about her own.

Did you see that she also made this comment?

Unfortunately it is the perception because 2/3's of us are overweight. I recognize that not everyone with OSA is, but in my case I am.

She's not saying that being overweight is always the cause. She's saying it is the cause of HER OSA. I don't know what the cause of her OSA is, but I take her word for it that she knows that it is caused by being overweight. It seems a little presumptuous to tell her she's wrong when she's acknowledged that being overweight is not always the cause. I think we might give her a little credit for knowing more about her condition than we do.

[newname]

You'd be surprised to find out that more people than you think use cpap. I have several volunteer jobs and at each one when the subject comes up, there are so many others on cpap. If I didn't mention it, I probably would never have known so many people I know are on cpap. Whenever I notice someone in a store stocking up on distilled water I say to them"you must be on cpap too" We get into nice conversations about masks, machines, dme's, etc. Of course I always tell them to log on to cpaptalk.com.

[MidnightOwl]

MoneyGal,

It sounds like a fun trip. Tho with a bunch of young kids on a (first?) camping trip I wonder how much sleep you'll be getting even with your CPAP.

I was wondering if you'd been to this barn before. If not, have you checked with someone who's been there to confirm whether the outlets are anywhere near any beds? Also will there be anything to put your cpap on to keep it off the floor? If not, you might try an upside down plastic milk carton. They are stable, and useful for hauling supplies in on the trip up and back.

I'm envying your trip.

Midnightowl

[Gerryk]

I took my battery pack on a Boy Scout trip this past week. One of the adults asked, "What is that ....a TV?" I said. "No, I have sleep apnea, the machine blows a little air pressure in my nose and I don't snore or go without oxygen at night." Another said, "I'm on cpap too." Boy did I have a lot of information for him! He has the old Resperonics "tank", and travels. He went nuts over my M-Series and will probably get one. Get a bottom bunk too so you can hang your hose. It is a small surprise to people but a simple explanation is all it takes.

Have fun!

Georgio

Gerogia a bunk? Our Cub scouts don't even get to use bunks and the Boy Scouts don't even camp within a mile of anything remotely civilized.

Ayway do you use your heated humidifier along with your pap on battery? I am looking at getting a battery for camping with the scouts.

Gerry

[Babette]

Hey Money, glad you feel better!!! I was gonna weigh in, then read your update post.

I agree with other posters - everytime I bring it up, I learn about someone else having it. So far, no one has refused to share a hotel room with me, even my picky mother.

BTW, I went OCD last night. I read two different ads on Craigslist by people swearing they'd done cpap for a month, and were done with it, and were selling off their equipment. I couldn't stop myself. I emailed them and begged them to try again and to come here and get help.

I know. I was a butt-inski. I couldn't help myself.

I'll probably have some flaming hate mail when I get home.

But I'll just bet any one of YOU would have done the same thing at some time!

Hugs all around,
B.