Why Don't People "Get It"?

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Why Don't People "Get It"?

Postby jrinker » Fri Sep 17, 2010 11:08 pm

I get so frustrated trying to tell people why sleep apnea is such a problem. I've been under treatment for eleven months now, and my AHI is still 25-35. So now I'm in the process of changing DMEs, maybe changing machines, and have just been referred to the nearest Big Fancy Hospital sleep clinic for further evaluation, since bi-pap just isn't doing it.

But several people in my life seem to feel that if I just excercised and lost weight, I would "sleep better" and everything would be fine. Ok, I'm overweight, but I don't carry my weight in my upper body, I have very narrow throat anatomy, and have complex apnea. (both obstructive and central). I have snored and slept poorly for years, even when I was very thin.

So I try to explain that SA messes up your metabolism, making it hard to lose weight. I explain that the snoring and narrow airway is not the only factor, that my brain doesn't always tell my body to breathe, even though my throat might be wide open. I explain that I sometimes nap during the day because I just can't keep my eyes open, even though I slept eight or nine hours the night before. I try to walk or lift weights, but some days it is an effort to just get off the couch.

And still, after explaining all this, someone will look me right in the eye and say " But still, I think if you just tried exercising..................." ](*,)

Thanks for letting me vent. It's been a long, aggravating week!
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Postby Mrs Rip Van Winkle » Sat Sep 18, 2010 11:17 am

jrinker... I go through the same thing with my family...I hear things being snidely said behind my back, I see the eye rolls and am looked at as the 'problem' child...I get so frustrated with my siblings at times I just cry....they do not get it. What makes matters worse....SA is prevalent in our family tree and I know both living siblings have some type of untreated sleep disorder just by their signs/symptoms and actions.

When I was caring for my brother in his final days, my sister arrived from out of state...the house was crowded and I was sleeping on a twin aero bed on the floor of the home office. One morning my sister was helping me pick up the bed/bedding to get it out of the way for the day..and she started to pick up my bipap, which is the one with the water tank inside..and if it spills into the machine it can ruin it. I stopped her abruptly and said I will take care of that...she proceeded to handle it...since she is the elder sister (10 years older than me) and knows all. I again told her to not handle it and why. Her words to me..."Lose weight then". Hello dear sister, you are running constantly to the bathroom all night. You are on sleeping pills because you keep waking ..plus more. In addition dear sister, you tell me to lose weight, but I weigh about 15 pounds more than you and am taller than you. ARRRRGH.

Shoot, I have been on xpap for several years now...and my husband is just finally getting a sleep study. Not due to what I have tried to get across to him...but due to his shrink wanting to put him on some nasty meds...and the shrink telling him that his psychiatric issues (possible ADHD) could be due to sleep deprivation...and if he were to have a sleep study, and it is determined that he has a sleep disorder or SA that he may be able to avoid the meds. DH is now all for a study...cuz that means if he doesn't have to take these meds he can still have alcohol once in awhile verses not being able to have it at all on the meds ....not that he is a big drinker...but that is his STUPID motivating factor. OK, know I vented too!
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Re: Why Don't People "Get It"?

Postby SleepyToo » Sat Sep 18, 2010 2:20 pm

jrinker wrote:And still, after explaining all this, someone will look me right in the eye and say " But still, I think if you just tried exercising..................." !


So, you are a doctor, eh? And you know better than the neurologist/pulmonologist/whatever doctor that is treating me. I started writing what else you could say, but got angry so I thought better of writing it here! I am sure you can fill in the blanks. It is a tough process dealing with the naysayers - I am lucky because I don't have to see my family very often - they live 5000 miles away. They told me that they had a laugh at my expense over lunch one day. That hurt, but I get on with my life and continue to use my cpap. I will continue to use it every night until I am told by a qualified medical doctor that I no longer need to use it.

There are many people on this forum who are not overweight but have moderate to severe sleep apnea. My BMI is 25.3, which is slightly overweight, but not much. I am losing weight, slowly, but I don't think it is going to stop my apnea.

Good luck with the ignoramuses who aren't prepared to listen to the balance of evidence that says that sleep apnea is a serious problem!

Oh, and isn't this forum the place to rant when you feel like it?!!!
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Re: Why Don't People "Get It"?

Postby Todzo » Sat Sep 18, 2010 7:05 pm

Hi Jinker!

The short answer - because they do not want to.

This is the land of the rich - we get it mixed up - we use people and love things. If a person is ill, he cannot be used - easiest solution - oppression (see the Wikipedia article on systematic oppression).

The disheartening thing is that most people are mixed up (even most of those in our own family). Few "get it".

The nice thing is that you are better able to "get it" yourself and realize the gold you find when you see others that do.

I have come to appreciate the good friends I find!!

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Postby Mrs Rip Van Winkle » Sat Sep 18, 2010 8:06 pm

So with what Todzo said .....in a way: the gold at the end of the rainbow is mine! No matter what others do and say, bottom line...I am taking care of me!
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Postby TheDreamer » Sat Sep 18, 2010 11:46 pm

Yeah....I really have a hard time putting up with people that just think all sleep apnea is because your overweight and if you just lost weight it would go away.

But, your supposed to put up with family...because you didn't choose them.... oh wait, I'm not talking to my mom right now. She also thinks she knows better than real doctors....

What's worse, is that I wasn't overweight before I started the treatments for sleep apnea. I put on a real chunk of weight while I was on remeron....I wasn't depressed before, I sure was when I was on it.

Though I wouldn't mind if I found a doctor that would just get things and finally put me on the right track. I fine if its some combination of drugs, cpap etc. for the rest of my life to manage my condition....I just want them to hurry up and find it, so I can get back to living again.

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Postby Mrs Rip Van Winkle » Sun Sep 19, 2010 12:47 pm

Though I wouldn't mind if I found a doctor that would just get things and finally put me on the right track. I fine if its some combination of drugs, cpap etc. for the rest of my life to manage my condition....I just want them to hurry up and find it, so I can get back to living again.


Hear Ye, Hear Ye!
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Truck drivers and OSA - Why don't people get it?

Postby truckerdad57 » Tue Oct 12, 2010 11:01 pm

Jrinker,

If you can help me with this.... think about the issues and problems of commercial motor vehicle operators..(truck and bus drivers). We have medical guidelines we need to meet to keep our jobs. As soon as we are diagnosed with OSA we are out of work until we are on CPAP for at least a week.

Drivers are SO MAD about a proposal to mandate sleep apnea testing for all truck drivers based on body mass index that trying to talk to most becomes an arguement about the DOT and doctors trying to get rich.

Add to that that most truck drivers do not have medical insurance that covers sleep apnea testing or treatment.

Truck drivers already have issues about excersize and general health as it is.. you try living in a truck and visiting home 3-4 days a month...

Then you get oral appliance and surgeons who want to market and sell their services to treat truck drivers with sleep apnea... They come out to a major truck show with display booths without even reading the DOT medical guidelines the truck driver needs to meet. ( A truck driver using an oral appliance can not get a DOT medical card.... the DOT can not check if they are actually using it like you can with a compliance data capable CPAP - surgical treatment require an annual PSG a cost most drivers can not afford.)

AAAAAARRRRGGGGGG.... here we are trying to counteract the whole sleep apnea testing and treatment is just a big money grab by the sleep docs... and then some stupid sleep docs come out and prove the naysayers right....

Ok.... I'm getting off on my rant....lol.... It's not just family that don't get it sometimes.. it's sleep doc's, DME's, insurance companies, employers, regulators like FMCSA, the list goes on and on....

How Ed Grandi has not pulled all his hair out years ago.......

Ok done with my rant...

Bob
(just a truck driver with sleep apnea)
Co-coordinator Truckers for a Cause Chapter of A. W. A. K. E.
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Postby chati » Mon Oct 18, 2010 7:01 pm

This is exactly why I searched for this forum. My family thinks SA is only for the overweight and if I would lose weight I would be fine. I have always been overweight, from just a little pudgy to need to lose about 40 lbs which is where I am now. I have put about 20 of those on in the last few months that I have been so tired. I am 51 and my mom just keeps on me about joining a "program". She will call and ask how I am and if I say I am having a very bad day she will think of a reason to have to go. I am having issues eating now because she makes me so self-concious about my weight. I don't eat junk food and love veggies, I just have no energy to get off the couch most days. This is such a lonely illness. I am so thankful to have found this forum. Thank you for a place to vent.
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Re: Why Don't People "Get It"?

Postby greatunclebill » Wed Feb 29, 2012 10:09 pm

the only person whose opinion matters to me sleeps with me. it's my wife and she also has a cpap machine. no other opinions matter. they can think what they want about me and anything i say or do.

ignore them. don't allow them to get under your skin, effectively controlling you. when they make comments tell them they are right or simply smile and move on. loving or caring about them does not mean allowing them to get in your head.
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Re: Why Don't People "Get It"?

Postby jepaul2438 » Tue May 22, 2012 1:08 pm

Sticks and stones . . . You get your apnea issues taken care of and then make other health decisions later. One thing at a time.
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Re: Why Don't People "Get It"?

Postby tlohse » Mon Jul 15, 2013 12:37 am

Truth is just about anyone could have apnea not everyone that has it has weight issues. I don't think apnea ever goes away it may get better with cpap use but for most people its something you will always have to deal with. some people have had a cpap for several years. Some people don't take the time to learn about this condition or don't really care.
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Re: Why Don't People "Get It"?

Postby stasiaob » Tue Nov 05, 2013 2:57 pm

I think the problem is that sleep apnea is severely misunderstood due to a lack of information. Everyone assumes that sleep apnea is due to weight because that's what they see on tv - ever watch The Biggest Loser?

When I was first diagnosed and told people I had sleep apnea, they would ask "Can't you just take something" because they don't know what it is, they would assume the problem was that I couldn't sleep. So I had to explain to them that it wasn't that I COULDN'T sleep - in fact, I could - way too much - but never frelt rested.

It's not talked about, DMEs and/or medicines are not advertised, etc.

To be honest, I didn't think I had sleep apnea for 4 years because I thought I was too young and didn't feel that anything was compromising me.

Now that I know I have it and I've been educated, I know it isn't a weight issue or mouth issue or a nose issue - it's an airway issue. It's also a very serious issue if untreated as you are literally running your body into the ground and so, it wears down causing all kinds of medical issues - some fatal, all dangerous. No one realizes that either - that yes, we do need to sleep - our bodies cannot keep going if we don['t ever rest them. Consequences are catastrophic.

People don't get it - and probably never will - because they aren't educated about it and there isn't any accessible public information available out there - the focus is more on heart or lung diseases or depression, or arthritis....more well-known illnesses and conditions.

Stasia

All we can do is try to explain it.
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