Can u help me get over my embarassment?

Just say: "You know how some folks can't sleep without their favorite Teddy Bear, or Blankie, well I have this funny looking machine I can't bear to be without!

SheZAAM! wrote: 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 wish this weren't the general perception. I recently had a friend begin giving me a lecture about why people have sleep apnea, it started out with "fat in the neck ..." I listened to it for a minute then explained to him that I have very severe sleep apnea. I am not fat. He kinda acted as though he didn't believe me, I guess since it's only fat that causes it in his mind.

When I unpack my unit when visiting friends, I do what Gerryk said and that's tell them that I often stop breathing in the night. They usually sympathize and ask how do you know, and I tell them I wake up panicked and gasping for air as though I were drowning. Most of the time, one of our hosts is immediately alarmed and says to their spouse "honey, that's what you do", then asks me if it's dangerous? I tell them the worst case scenario is you don't wake up, but even if you do, your brain is deprived of oxygen and killing off cells faster than an alcoholic.

I've always received positive re-enforcement and often a statement that they will follow up on it for themselves - but they rarely do. Also, when I hold the mask up to my face and ask them if they want to try it, they take a couple steps back and say "no way"!

Go to whomever is in charge.

"Certainly looking forward to the camping trip. Could you help me out a bit? I'm going to need an AC power hook-up to comply with my doctors prescription for a breathing machine at night to deal with sleep apnea. Do you know if there's an AC outlet available?"

You might find they know somebody or have a relative with the same issue. Since getting into this I have found we are not such a minority. I would not be worried or embarrased.

In fact, if someone asks you about sleep apnea tell them what it is and the symptoms. Maybe they have a loved one that has been treated.

nobody wrote:

SheZAAM! wrote: 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 wish this weren't the general perception. I recently had a friend begin giving me a lecture about why people have sleep apnea, it started out with "fat in the neck ..." I listened to it for a minute then explained to him that I have very severe sleep apnea. I am not fat. He kinda acted as though he didn't believe me, I guess since it's only fat that causes it in his mind.

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.

SheZAAM! wrote:

nobody wrote:

SheZAAM! wrote: 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 wish this weren't the general perception. I recently had a friend begin giving me a lecture about why people have sleep apnea, it started out with "fat in the neck ..." I listened to it for a minute then explained to him that I have very severe sleep apnea. I am not fat. He kinda acted as though he didn't believe me, I guess since it's only fat that causes it in his mind.

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.

thinking back, i wasn't overweight till jr high, and thats about when my mom told me she thought i had sleep apnea.
i fully believe sleep apnea causes obesity. were always tired, so we drink more caffeine and eat more carbs and sugar, because before our apnea got to the severe stage, thats what helped us.

MoneyGal
Since you're going to sleep in the same room with a bunch of kids, and use a machine, the some kids will see it, wonder about it, talk about it. Kids are naturally curious.
It's not really a weird little hobby like at teddy or a blankie, it has to do with your breathing, and everyone will pick that up.
I tell people "I have problems breathing when I sleep, and I need a machine to help me do it / keep me from choking". I bring along an extension cord wherever I go -- and I would do it in this case too -- however the point about not having anyone trip on the cord in bunkroom full of kids is very important - it would be much better for you to sleep as close as possibe to an outlet, and if you use the cord, show everyone its path.

I would also consider making a little show and tell session for the kids before you all go to sleep - including having the machine working, and the mask on. The reason I suggest this is that you don't want any kid checking to see "what happens when the machine goes off?" while you're asleep. You want them to have all questions answered before you all go to sleep.

I very rarely you the word "sleep apnea" since it is 1. Meaningless to the general public 2. Has them focus on the word they understand, which is "sleep". "Sleep disordered breathing" is a much better expression.

As for your fellow councelors: You could tell them how wonderful you feel, and share your happiness at that purple belt you've achieved.

SheZAAM!
Society has made you embarassed at the way your body looks, and you seem to think that's OK. I understand your mother has spent many years to doing that to you too.

Society, and especially diet companies has also been feeding you a false hope that there is a way for you to loose weight, and keep it off.
I suggest you read this: "Rethinking Thin" by Gina Kolata, and browse these two sites: http://www.beyondashadowofadiet.com/id62.html and http://dietsurvivors.com for some insight into how many lies surround the issue. And there's "www.bodypositive.com" for some tips.

I hope one day you will realize how cruel it is to make anyone feel so embarassed. In western society fat people are the only group it is ok to discriminate against and malign -- and it is done with a vengance.

O.

I hope one day you will realize how cruel it is to make anyone feel so embarrassed. In western society fat people are the only group it is ok to discriminate against and malign -- and it is done with a vengeance.

Ozij,

Thank you for this comment. I have dealt with this issue for many years. I'm 5'6" tall. When I was in high school, I weighed 130 pounds. My mother harassed me constantly because i was so FAT. I shouldn't weigh more than 115.

Took me almost 40 years to find out that 115 was the weight my 5'2" mother wanted to be. But trying to achieve the unachievable probably set the stage for my being over 400 pounds in 2001. (I have lost 180 pounds, but am having a fight to get the remaining 100 pounds off.)

The level of abuse within the medical profession towards the obese is astounding.

"Just stop stuffing your face and try getting a little exercise... like pushing yourself away from the table," said one.

When I asked for help finding exercise to replace the bicycling and walking I did before I injured my back, I was told that I could find exercise to do.. if I really wanted to. (It took until 2005 to find someone who prescribed water therapy for me, which I now do religiously, three times a week.)

Five years ago, I was told by an endocrinologist that I must think of myself as already diabetic -- and get off my horrible high protein, vegetable, fruit, and fermented dairy lifestyle, exchanging it for lots of complex carbs. He had no answer when I asked him why, if I was borderline diabetic, which meant I could not metabolize carbs, I should want to eat what I couldn't metabolize. (I am not, btw, diabetic... the high A1C was thanks to the chronic pain I was dealing with. When I dealt with the pain, the A1C returned to normal.)

Last year, when I was symptomatic with endometrial cancer, I was told by my now former primary care physician that if I would just lose some weight, the symptoms would disappear. Fortunately, I did not listen to him, and found a competent woman gynecologist who diagnosed the cancer.

The way I eat now is the way I will eat for the rest of my life.

My lifestyle is thanks to Dr. Sidney Valentine Haas and Elaine Gottschall. To paraphrase the late Snoredog, "Someday, science will catch up to what they said."

I just hope to all the Higher Powers that medical science gets off the notion of blaming the patients who are victims of faulty science, since the so-called obesity epidemic has come about with the advent of high-fructose corn syrup, swapping carbs for healthy, natural fats and proteins and so forth.

Gah. Time to climb off my soap box and go mask up.

Hi deary - What about taking some printed info (pamphlets) along and hand it out to them all and tell them they are welcome to get a good look at your therapy equipment - they can take this home with them because I'm sure one or more will know someone that's got the same 'problem'. It's an excellent way to help others - and that's what hoseheads like to do best ! ! ! Just make it clear to them that you do not want sympathy and you are just fine with your kind of therapy! (for better health) Enjoy your camping - You are a Star !

i think you will find that if you can bring the subject up it will be a non issue for the others, i say this from experience with health and disability issues. i lost my leg a number of years ago, then i developed MS the combination means that using a nice discrete prosthetic leg (if there is such a thing anyway) is not an option- i use a hulking great, very obvious electric wheelchair- then to add insult to injury i stacked on the weight (i mean really stacked on!) and i also have to use a urinary catheter thanks to the MS!
i had not seen some of my old work collegues for a long time and i was contacted about a reunion and almost did not go because i was worried about all the looks and stares, whispers behind hands i might get! i can honestly say it was as if all the problems were invisible or temproarily vanished! there were no pitying looks or comments, no mutters of "OMG hasn't she let herself go!". the one thing i have learnt over the years as i have gradually accumulated and increasing number of rather obvious imperfections is that the only person who thinks they are a big deal is the me the owner! i have found that if you have a matter of fact approach to these kinds of issues, others will too! Kids in particular are amazingly adaptable about this kind of thing. i often get little kids who will ask me where my leg is and there parents freak! but to them the question is nothing but curiosity! kids are learning about their world and how we all fit into it- they are not being judgemental of pitying! As for the adults, if you make this a big deal then it will be a big deal, if you treat it as just another part of life, then that is all it will be! and yes, you could very well find some who will ask you questions because they have been concerned about a loved ones possible sleep apnea but have not known what to do about it. if SPARKS is something you have always enjoyed do not put it at risk for a fear that may in all probability be totally unfounded.

so just to recap, what i have learnt the hard way is that the only person a "disability" is a big deal too, is the owner of the disability! in the odd chance you do cop an insensitive attitude (and i do accept that their are jerks around sometimes) it is still their problem not yours unless you let it be! Outing yourself the first time is the hardest but this is a great oppurtunity as it is something that has obviously been very enjoyable to you so the payoff when it goes well will be all the better!

LoQ wrote:

elader wrote: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?

No I am not saying to be nasty to them. But frankly anyone who has a problem with you using a CPAP to help save your life is an idiot. "Your life support machine makes me uncomfortable, please don't use it"???? Really, I can't imagine any adult having that issue once the situation is explained.

I may have gone undiagnosed much longer if not for a discusion around the campfire. Seems that two of my hunting buddies used Cpap machines and I thought snoring was no problem, as long as it didn't wake me up. It surly would have become far worse for my health if I had not listened to others that night. After one month on the machine I felt good enough on Sunday to take a bike ride for exercise. Maybe I will loose some weight because of the Cpap. Even if I don't its still better than the alternative.

Have you checked into some form of battery system as a power source? You could also use it at home in case of power outtage. Just a thought.

If that is not an option then by all means, ask. Dont be embarrased.

To me the best approach is always up front. Just tell them you have Sleep Apnea and you are required to sleep with the machine and mask. This will require an available outlet. If they complain or try to embarrass you it will be their issue not yours. You could always stay home and let them battle the kids alone!
As for the kids, they will ask you plenty of questions once they see the machine and give you ample opportunity to give them details and a show!

Do it for the children!

It's never fun to stand out in a crowd in a negative way. But think about the kids. What if one of the kids was a bed-wetter? What if one of the kids had an asthma inhaler? What if one of the kids had an insulin pump?

What would you say to that child? What would the other adults say to that child? What would you say to the other kids, if they picked on someone who was different?

You probably already know the answers, you just need to look in the mirror and tell yourself "it's OK".

And as for obesity? I am currently obese. I'm 41 and gained 130 lbs between 32 and 41. I can't speak for others, but I have no doubt that my obesity was caused by sleep apnea.

Now that I am on treatment, I already have much more energy. My appetite is starting to even out. I've stopped gaining weight, without even trying.

After 5 weeks, I'm about done fiddling with different masks, pressure settings, humidity levels, and hose arrangements. So I plan to start ramping up my diet and exercise efforts to start taking off all this weight I piled on. And I know it will be much easier now that I am not suffocating in my sleep!

Again, I can't speak for everyone but I know why my sleep apnea went undiagnosed until I was obese. The severity of my "symptoms" from sleep apnea worsened as I gained weight.

I probably had a similar AHI as a 175-pound, 32 year-old man in good cardiovascular shape to my AHI now. But as a 305-pound, 41 year-old man in horrible cardiovascular shape...my body just can't take it any longer. My ability to "live" with that AHI went down and the severity of my symptoms went up.

By this time next year, I hope to be back down under 180 lbs. And I hope that my pressure requirement goes down a little. But I absolutely assume that I will still be on a mask every night!

The bottom line is that my tongue and soft palate are too big and they close my throat when I go into REM sleep. That has nothing to do with how fat I am. However, suffocating a Kenyan marathon-runner in his sleep a little will probably NOT have the same effect as suffocating a 305-pound couch potato a little in his sleep.