OSA - The Rodney Dangerfield of afflictions

My wife is an RN and totally understands my treatment and now that she can get some sleep without me snoring there is great support....

Unlike some others, I am finding that there are a lot of people out there that do know of and understand the importance of our treatment.
I will mention my apnea and the fact that I have to wear a mask and have air forced into my body and more and more I hear, "Oh yeah. My dad has that", or, "My uncle has worn a mask for years", or any number of similar responses.
Sadly, I also find that discussions haven't happened within the family's, so when I explain what it is, how it happens, how the machine and mask work together to ensure the airway is held open, I get anything from blank stares, to undivided attention -- the latter being more common including many questions which I am, of course, very happy to answer.

So those of you that said it's a lack of information are absolutely correct.
I believe that those of us on this forum have no problem disseminating information about our condition -- I'm sure some to an evangelical level (guilty), but it appears that "Joe Blow apnea sufferer" seems to suffer in silence. They are apathetic or lack understanding of their own treatment -- they just do it because the doc said they had the condition and need it.....
I'm also sure there are a good percentage of "failures" as well.....Those with no support system that just give up because "it's a hassle"......yes it is a hassle, but a life saving hassle!!!! I would think that a heart attack, or a stroke, or <fill in the blank> is a bigger hassle!!!

All one can do is ignore the nay-sayers and continue to study, work, and succeed in our treatment. Sooner or later the others will get on board......

For sure DS -- What is more natural than oxygen??? Well said!!!!

Take care
cheers
goose

I typically consider myself as an accurate and effective communicator. I'm no Ronald Reagan, but I can get my point across...

HOwever, with my wife and my best friend I have been unsuccessful in getting them to understand that I have a legitimate affliction for which the only solution is CPAP.

To give a little background, my wife is from Panama--born in raised. Like most Latin American countries you can just go to the pharmacy and get whatever drug you need without any prescription. Just last week she had the flu and decided to start taking some Amoxicilan that her family had sent to her in the mail.

I've argued with her countless way about doing this, but to no avail. That's the culture she was raised in, you get sick, you go to the pharmacy and self-prescribe whatever it is you THINK you need. It's very frustrating.

I've given up even fighting with her about it, because she will not listen to rational thought. (She is a women after all)


Anyway, all that to say that she still thinks I don't need a machine and that I need to find a natural cure. I actually find that insulting. I asked her the other day, "Would you tell a Cancer patient to quit Chemo and just go to whole foods and find some vitaimins"?

Now, I've been on CPAP for three days, with some of the usual challenges, gas, leaks etc. I know that it's going to take a while to adjust. These "challenges" have now become the "a-ha" "I told you so" bullets for my wife. Now, I dare not complain or make any comment about CPAP therapy or it's side-effects, because it further validates her position on it.

Another issue I struggle with her on is the energy level thing. She'll say things like "you're always tired and don't want to do things around the house" etc. Well--duh!!!!!!!!!

When I try to explain to her that I can barely make it through work because of this issue she responds by saying, "I'm tired of you blaming everything on your sickness".

Obviously, she has no understanding whatsover and I have completely failed to explain to her what I have and what I am going through.

I've thought about brining her to the sleep Dr. with me and maybe having her explain it to her--maybe that would garner some understanding and sympathy.

Ok, sorry for the long rant, but it's cheaper than a Marriage Counselor.

Hey Paradigmer -- understand the cultural thing -- having lived in Mexico and seeing the same kind of action/reactions.......It is convenient to be able to walk into the Pharmacia and get what you need, but there is the downside of not knowing what the heck you're doing -- in reality.....

You have to ignore the negativity and accentuate the positive. (preachin' to the choir, I'm sure)....

If there is someone in Panama that is family that can or will understand the issue -- perhaps a doctor in Panama that she can communicate with (if the doc is versed in Sleep Issues). Maybe you can find a doc locally that speaks Spanish as a "first language" that can explain the importance to her.....

I feel for your problem -- Good luck in finding a solution!!!
But most important is that you keep up your treatment -- your health is more important that the side issues (as difficult as they may be)......

take care
cheers
goose

paradigmer
The best way to convince your wife is to show her results. Follow through with treatment, get better, and do something around the house. Then maybe all the men in Panama will become hoseheads
As for self diagnosis and treatment, we all have a bit of that mentality. I learned early on in my journey through medical malities that I had a lot in common with STAPLES (the office supply store) and a 1st year medical student. "YEAH, I GOT THAT!!!"

paradiger,

Personally, I don't mind the rant, so long as it helps you.

I really don't think that having your doctor talk to your wife will help. I say this from personal expirience. My mother believes much like your wife that she is more capable that most doctors at providing our families health care. She spent years trying to releave my syptoms from sources like "Prevention Magazine" even though time and time again my sisters and I have documented for her that many of these "cures" are out right dangerous.

I was releaved when they dignosed my apnea - this is treatable and whats even better is that I don't have to take more drugs to solve it.

Keep up with the therapy - look at the bright side: when you start to get your energy back, you can look at her and say:"I TOLD YOU SO":)

Paradigmer writes...In my very brief experience with OSA, it seems that it gets very little respect or sympathy.

And, that is my general experience, after over 2 years.

When ever I bring up the topic of OSA, APAP, symptoms, even how well I'm doing, the better half changes the subject.

No problem, I've adjusted to the fact that this is often an unseeable collection of symptoms (I never call it a "disability"); and, unless one is acutely interested in things medical, or has the symptoms themselves, it's difficult to imagine the crushing fatigue and host of other symptoms that can appear before therapy.

Yes, it's frustrating. And although I do know a couple of OSA patients that I can occassionally commiserate with, I usually just have to content myself with the knowledge that I'm being treated, and my life is back to normalish.

BTW, I like the Dangerfield metaphor.

Regards all - - Tom

I think the biggest obstacle is public awareness and education.

I go to a medical clinic that trains residents in family medicine. For years, I kept complaining about feeling tired. This was considered to be depression. Finally, I got to see a young practicing doctor, who spent a longer time with me. I was referred to a sleep clinic, and had to wait eight months in line to get there. Of course I was apneic.

And I am still amazed that, when I talk to doctors about OSA, they consider this condition to be the end result of obesity, diabetes, hypertension and other maladies. On this forum, it seems to be considered the cause. I do not know what is what, but I do not bother to argue with the doctors.

My wife and I had another conversation about it this weekend. I think maybe, slowly she's getting the picture. She's not an unintelligent person, she has an MBA, but for some reason--she can't "get" OSA.

What prompted me to try and talk to her again was an email she sent me last Friday saying that I should try Yoga or Tai-chi and that this will help me to relax and to sleep better!


I keep trying to explain to her that it is the equivalent to a mechanical failure and not neurological or stress or "depression".

paradigmer wrote:And, I hate to say it, but my wife is the worse one of the bunch in terms of understanding. Last night she kept telling me that I don't really need any machine to treat my condition and that I just need to look for a natural solution.

My girlfriend of 7 years is the exact same way. She complains she can't sleep because of the noise of the mask (but won't let me try new masks around her!) and that I really don't need a machine, I haven't died yet, etc.

She is getting better but I still hear it sometimes.

Anonymous wrote:.......


I keep trying to explain to her that it is the equivalent to a mechanical failure and not neurological or stress or "depression".

If you get her convinced, send me your script. My wife is sure that it is a character defect.

Showing people that don't understand the following animation may help

http://www.resmed.com/en-us/patients/un ... 0x380.swf

I too find many many people just don't get it. Its very frustrating...

For me it is my grown kids.

They act like I am making it up and if I bring it up they roll their eyes and make inane comments.

I tried talking to my daughter about her husband, as I am pretty sure he has it. Her response is "he needs to join a gym". Which he did last summer and guess what -- it helped as exercise does -- but betcha one of the reasons he stopped going was the fatigue since he takes a nap after work usually.

Okay, all you guys with unsupportive wives and girlfriends... I have one MAGIC BULLET you can use on them....

THE VAST NUMBER OF SINGLE, FEMALE, CPAP PATIENTS ON THIS FORUM THAT ARE MORE THAN READY TO TAKE THEIR PLACE.

C'mere big boy... Not only will I let you use YOUR mask, I might let you try MINE!

And remember - now that we're getting good therapy, us Female 'papers are READY AND WILLING AND ABLE.

LOL,
Babs

PS - And DITTO to all the Hot Lesbian CPAP patients on this board!