This isn't a blog about how long it took before I was diagnosed with sleep apnea. It isn't about finding a good sleep doctor or the sleep studies I have had. It isn't about the type of apnea I have, or about the treatment options, or what my health risk factors are with sleep apnea. These are all very important and need to be addressed and understood but this blog is about how it affects me emotionally and socially.
The first time someone new finds out I have sleep apnea, there is one of two questions asked; "Do you use one of those machines?" (from non-apnea people) or "What kind of mask do you use?" To the first I simply say yes and then listen to all the people they know who use machines and how it helped (or didn't). To the second I tell what I use and the discussion then consists of successes, disasters, complaints and wishes. All superficial conversations and then we pass on.
When I was first diagnosed, I cried and cried. Not with happiness either. The truth is, I didn't care that I would feel better and hopefully this could keep other bad things from happening. What I cared about is that I had to wear this stupid-looking mask. I had to wear it IN BED with my husband. For a person with low self-esteem anyway, this was horrible. I didn't see how it would do anything to enhance any intimacy. Yes, I would not be wearing it during "special" times, but I could just imagine that the flash-back of me wearing this ugly thing simply HAD to ruin the moment. Not to mention the noise the machine and mask made. Darth Vader in a teddy. Come on, what partner could get past that?
It isn't just my husband that I hated to wear it around. Sharing a room with a friend at meetings or on vacation, no matter how close the friendship, is often full of lots of warnings about what happens when it is time for bed. Trying not to scare my little grand-daughter half to death when she wants me to sleep with her just hurts me all over. Who wants to be the boogey man in a small child's nightmare?
In addition to my dislike of the look of the mask, there are the rude sounds that can happen when the mask slips. Is it better to ignore it and hope they didn't hear it or apologize and try to explain that it was the machine and not me making the noise? An awkward situation to say the least.
Sometimes when I sleep on my left side, my husband complains about the wind tunnel hitting him in the face. Now, he may be exaggerating but few things wake him up so I know he can feel it. So many nights I lie awake, whether at home or not, afraid to sleep because I will keep someone awake with a nightmare vision, obnoxious noises or being blown from their beds.
Travel is another issue. Most CPAP travel bags are slightly cumbersome and not pretty anyway. Security makes you take the machine out of the bag so they can check it for bombs or drugs or whatever. You can't put in in another bag with other items so you have one less bag to haul around either. I tried that once and it was not pretty. I was finally told that I either checked the bag or not get on the plane. It did no good to explain that a very expensive, very necessary medical device was in the bag. It's the only time I felt connected to my CPAP machine and mask and worried that I might never see them again.
My new machine is quieter and even has pretty flowers on it. It also has a read-out each morning reporting mask leaks, episodes per hour, whether the humidifier was working and other information I am supposed to care about. All I see are the little smiley faces that remind me of a song that I detest--"Don't Worry, Be Happy". By now you can tell, I do NOT like having to use this machine.
I may seem to be making light of these problems but they really are problems I have had to overcome or in most cases, learn to deal with. I am also NOT making light of the seriousness of sleep apnea. I try to keep up with current research and new treatment methods. It is imperative that we all become educated about this disease and look for find reliable information. All can be done on the MyApnea website. There I can help with research by responding to the surveys posted. I can find others who are looking for answers (just like me) on the discussion forums.
However, problems that I struggle with the most are not part of a sleep study, or things my sleep doctor can help with. They aren't something you talk about with a stranger or usually even a close friend. Not everyone who uses CPAP therapy feels like me; most probably don't struggle with these non-medical issues. But if you do, know that there are others out there who understand that these things are important too. It all comes down to quality of life, not just the medical side but the emotional side too.
I would love feedback from others about how they deal with the everyday junk. For now just remember, the same moon shines over all of us. Sleep well.
Kathy
