the Nay Sayers

yorkiemum01 · Post by **yorkiemum01** » Mon Feb 25, 2008 7:33 pm

in the few people I've shared this 'diagnosis' with, I've found it quite
interesting how many balk at the idea this condition even exists. I'm
in my 30's, only moderately overweight, and have suffered from what my family has called 'chronic -rock the walls' snoring since my teens. Yet when I finally seek a reason for my hypertension of 10 plus years, and I complete the battery of tests, my friends consider this diagnosis nearly a joke. Now I'm feeling that the only place I'm comfortable even mentioning the word 'obstructive sleep apnea' is in a forum. And I thought obesity was taboo...wow...this reaction has been surprising. My apneas were so severe my Dr had me stay at hospital back to back. As if the treatment is something we seek.........come on! Who would wish this on anyone? In some ways I consider myself blessed, as this treatment only requires 'air', and not medication, and who knows, my blood pressure may be aleved with proper sleep, what could be better? Am I the only one to experience these types of reactions to this diagnosis??

Wulfman · Post by **Wulfman** » Mon Feb 25, 2008 7:40 pm

I personally have not, but have read lots of posts by others who have had similar experiences. Probably worst of all are spouses or significant others with their attitudes to it. Many folks who have this condition do NOT talk about it.....seems to be one of those taboo things.
It needs more "daylight" and that is S L O W L Y coming to pass as more news stories are being written about it.

Yep.....good thing it's ONLY AIR.....and not something contageious..

Den

mbrown · Post by **mbrown** » Mon Feb 25, 2008 7:47 pm

I have had mixed results from folks I have shared my diagnosis with.
The people who know me best however have seen a positive difference in my attitude and my level of energy and are happy for me. In fact several of my friends are now considering sleep studies after hearing my symptoms and determining they have similar symptoms

motogary · Post by **motogary** » Mon Feb 25, 2008 8:33 pm

I guess I'm lucky. My wife urged me to get this checked out (I didn't think I had a problem. After all, I never heard any snoring...) and after mentioning this to several people, they also urged me to pursue this as "that can kill you" seemed to work it's way into most conversations.

roster · Post by **roster** » Mon Feb 25, 2008 8:35 pm

yorkiemum01 wrote:........ Am I the only one to experience these types of reactions to this diagnosis??

I think the population is starting to come around to the widespread distribution and severity of the problem. Then will come the press, then the medical profession (science is catching up with Snoredog).

Dr. Krakow has talked about the tipping point - when this whole thing will bust wide open and deserved major attention will be given to it.

Guest · Post by **Guest** » Mon Feb 25, 2008 8:39 pm

Yorkiemum,

No, you're not the only one. Those who haven't lived with the ravages of sleep apnea have a hard time comprehending what a blessing having a treatment for it can be. I know that in my enthusiasm I wore people out talking about it, and realized not everyone was so interested, so I try to get most of that out of my system here.

There is so much yet unkown about it in the general population. And it may be my imagination, but it seems there's a stigma attached to the diagnosis, and when you tell others, they don't know what to say. Maybe that's because of the stereotypes, and they're thinking it is a fat person's disorder that they've brought upon themselves, or discussing something as unflattering as snoring that happens in the bedroom is uncomfortably personal.

Oh well, the naysayers didn't give me this gratitude and they can't take it away. They can go rain on somebody else's parade.

Kathy

alnhwrd · Post by **alnhwrd** » Mon Feb 25, 2008 10:12 pm

No, you are not the only one to experiance this. My first couple of weeks I was pretty happy with the way I was feeling, getting the first really restful sleep in years, and wanted to share it with everyone. Reactions varied from, "Hey, thats nice" to thousand yard stares. A few dropped some subtle hints that it was just a weight loss issue. But my wife was very supportive, as was my older sister, who after doing some reading told me not to stop because she did not want me to die in my sleep from a heart attack or stroke. Bottom line, we are getting therapy for a serious medical condition, and that is what makes me feel great about it. Other peoples opinions, or indifference, mean very little to me at this point. I have a friend from work who just developed Meiniers disease and has lost 50% of his hearing in one ear and may wind up disabled, or at least have surgery and need a hearing aid for life. He is the same age as me. So, I feel pretty fortunate that all I have to do is wear a mask at night when I sleep!

Goofproof · Post by **Goofproof** » Mon Feb 25, 2008 11:59 pm

A lot of people would sleep better if their XPAP, came "Out of the Closet"!

I could care less what fools think, I know what works for me, that's all that counts. Jim

GrizzlyBear · Post by **GrizzlyBear** » Tue Feb 26, 2008 3:07 am

Hiya.

There are a lot of people out there who have various reasons for mocking conditions other people might have. Perhaps the psychological reasons are complex and varied - maybe linked in with racism, sexism, religious hatreds and so on - the fear of difference, ignorance generated fear and so on. Maybe even 'there but for the grace' fears.

I have Type 2 diabetes, and we get the 'oh it's your fault' comments, particularly in the media - ignoring the fact that most of us have a genetic weakness which makes our lifestyles deadly.

I am obese - so I also get the 'oh it's your fault' for that, again ignoring genetic and societal factors.

I am a chronic depressive (for 38 years so far), and I have been told not to tell many people because of the stigma associated with mental illness.

I have had 5 major operations consequent upon an attack of diverticulitis - which some say is dietary related, and again 'my fault'.

And I have sleep apnea - which people seem to think is funny, rather than serious - mainly because while its existence is well known, the stroke and heart attack consequences are almost unknown.

Of course, because I am a large and fearsomely appearing person (who is a cuddly little teddy bear inside!!!!????) people never say this stuff to my face. Nonetheless, the attitude is out there. All we can do is publicise our conditions, and take cover with others of our ilk, like those wonderful people on this forum, when it all gets too much.

This doesn't mean that we just accept it, far from it. We need to be 'out there', and make it clear that we don't welcome comments like those you have had. This, after all, is how we have managed to make large inroads into the sexist and racist aspects of Australian society. I always make clear in pubs that I won't tolerate the pathetic jokes etc. It is a small step (and we have a long, long way to go), but each small step we take adds up to a resounding leap in time.

Regards,

GrizzlyBear

yorkiemum01 · Post by **yorkiemum01** » Tue Feb 26, 2008 4:59 am

And..my teenage son who sleeps down the hall just informed me he's now getting sleep for the first time in his life. Bless his heart, he's been kept awake by my chronic snoring all his life, and just assumed it
was 'the norm', and never complained.
Had my first night on CPAP where I made it 5 consecutive hours, which for
night 7, is encouraging. Thanks again to all of you for your support.
God Bless!

alnhwrd · Post by **alnhwrd** » Tue Feb 26, 2008 5:23 am

God Bless you , Yorkie, and your son. May you both have many more peaceful, blessed nights sleep!

socknitster · Post by **socknitster** » Tue Feb 26, 2008 9:49 am

I don't think that the reactions you are getting are terribly atypical, unfortunately. I have been fortunate enough myself to have a husband who supports me and takes it seriously and I talk about it with other people just to get the word out there and ignore any reaction they have.

I am slightly overweight too, but no one has dared make a comment like that to my face, if they did they would get an earful. Since I was skinny as a rail when the first symptoms started, and very active. Years of bad sleep and exhaustion led to my weight gain and they would hear that whether they wanted to or not! I feel that after this pregnancy is over I will have little trouble losing the weight. After 8 months on therapy my cravings have gone down to nothing. I have only gained 3 pounds during the pregnancy so far and I am at 23 out of 40 weeks. Most women have gained at least 15-20 by now.

Yorkiemum, I think you are about my age and my guess is that you will see your bp drop dramatically within 6 months just like I did. During my last pregnancy my bp was dangerously high--of course no one knew why because I hand't been diagnosed yet. Over the last 8 months I have seen my bp go down with every doctors visit and my last reading was the lowest I can remember in my adult life. Something like 110/65. That has got to be good for this baby too!

The only person that has given me attitude about my diagnosis is my mother. I have actually heard her have apneas when she falls asleep on the couch. She has hi bp, diabetes and heart disease. And she is in total denial and says I got this from my Dad, who snores (of course she does too!). My guess is they both have it, but neither will even consider being checked out. Like wearing a mask when you sleep is not worth improving your health and lifestyle. Personally I will take the mask--compared to the exhausted, pain-riddled, foggy, sick and depressed person I used to be, I am now vibrant and more productive than ever in my adult life before.

My Dad takes it seriously and was touched when I asked him to be checked out just in case, but he claims he can sleep 6 hours and feel totally rested and has no complaints about sleep, so he won't do it. That of course, is contrary to my personaly observations about his sleep, but far be it from me to call my Dad a lier. It is a respect thing. Gotta be in my family to understand it! I tried, and have brought it up more than once, so that is all I can do for either of them, short of driving them to a sleep clinic and tying them to a bed there.

Keep coming back here. Even my understanding friends don't "get it" the way people here do. You will be surprised at how much the support here will mean to you with time!

Jen

socknitster · Post by **socknitster** » Tue Feb 26, 2008 9:59 am

Yorkie,

You might want to have your son checked out too. If he really is "hearing it all night long" it could be because he is sleeping too lightly due to apnea himself. Most people would claim to have heard it before falling asleep or occasionally when waking up. The fact that he said "all night" is a warning bell for me.

I started becoming a light sleeping in high school--now that I'm on cpap I sleep like a ROCK.

I would have NEVER in a million years thought my son could have it at age 4--and you can imagine my shock and fear when I heard him having apneas. Fortunately for us he was cured by a tonsilectomy/adenoidectomy as many preschoolers are when their parents discover this.

You said you had snored really loud all your life--it is possible he inherited the same throat structures, even if he doesn't snore loudly. I don't snore much or at all off the machine, but obviously inherited something that predisposed me to it from my parents.

My .02.

Jen

dieselgal · Post by **dieselgal** » Tue Feb 26, 2008 10:38 am

When I was diagnosed I was actually happy which makes people think that you just want to have something wrong, but the truth is I just want to sleep!
When I first had my sleep test and started CPAP I think I talked about it to people who really couldn't care less because they don't have sleep issues and they usually gave me the same reaction that ALNHWRD mentioned. Either totally disinterested or unable to comprehend.
The good news is that my husband is very supportive and understands more everyday about what this OSA means. He is happy that I have found something that gives me some relief.

bbacher · Post by **bbacher** » Tue Feb 26, 2008 10:44 am

She ain't just whistlin' Dixie there - it's definitely genetic.

I have 4 siblings, and we all snore like there's no tomorrow. I posted on our family forum about my diagnosis, and my brother confessed that he's been diagnosed also. I believe my sisters would be diagnosed if they were to get checked out. I'm sure we all got it from our dad, who won't listen to any talk of newfangled diagnoses (he's 81).

One sister told me she sought help from a doctor and was told "Just lose some weight." She's not more than 30 lbs overweight - hardly extreme!

Anyway... my point is just to second what Socknitster said about getting your son checked out. I'm a newbie to all this, but already I see how it runs in the family.

the Nay Sayers

the Nay Sayers

Re: the Nay Sayers

Naysayers

Mask