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The Person Behind the Mask

Posted by Ruby on May 17, 2016 in Narrative

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

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[-] mrueschman +3 points · over 1 year ago

Kathy,

Great post! These sort of personal narratives shine new light on my overall thinking about working in the field of sleep medicine. I am the research data guy and I have handled lots and lots of CPAP adherence data over time, however all those numbers on my computer screen only tell a part of the story. I expect many of the experiences and anecdotes you described here are common among other sleep apnea patients.

As I pore over the data I ask: Why did that newly diagnosed research participant become a CPAP rock star? Why did another try it for two nights and never put it on again?

The answers vary for many reasons, of course, but I think the emotional and social aspects of the "CPAP experience" that you highlighted cannot be overlooked. As you hinted at, it's all about striking the balance that maximizes one's quality of life.

   
[-] Ruby +0 points · over 1 year ago

In my own case, I did not have anyone that followed up to see how I was getting along with the device. It was kind of like being patted on the head and pushed out the door. Don't get me wrong, my sleep doctor is great answering questions in his office and I am sure he would if I called him about a technical question. He wears one himself but I am not comfortable with "trivial" complaints. Why I think of them as "trivial" I don't know. The medical field is improving but it still isn't really at that quality of life stage in most instances. Get the treatment and get on with your life--that's the message many doctors send out.

   
[-] DiligentCrimsonJellyfish9090 +2 points · over 1 year ago

I am so happy to read this. I have similar feelings about the machine, and the tubing, and the mask in terms of how it looks. I actually think the idea is a good one, but the apparatus that comes with it-especially the tubing and headgear, the loss of speech while wearing it, the need to stay right nearby the machine- these all affect me as well. I have not called my doctor back after trying a machine for one, all-but-completely-sleepless night. I have this horrible feeling about being held hostage. I worked very hard to tolerate the sensation of the CPAP on my cheeks and nose, but this is hard, but the breathing sensations were worse. Since that night, I have been researching Apnea, because I want different answers. Clearly, I am in de Nile. I don't like someone telling me they looked at one random night of my life, and now I must wear this for the rest of my life or die. That seems like an extreme response to me, and I am looking for a more balanced understanding and perspective. I mean, I haven't been using one for over 50 years, and clearly am healthy enough to work, raise a family, and manage my life. So, while if it really would help, I would want to try it, I also want loads more information. So again, thanks for this. this website has helped me understand a lot about what I need to ask.

   
[-] Ruby +0 points · over 1 year ago

Patient education is a huge issue for me. I am glad you are looking for options and information. When we know more about our health issues, we can then work WITH our doctors or health care providers. We can take back a little bit of control over our lives. We can make informed decisions about our own care instead of just allowing someone else to make them for us. Don't get me wrong, if a sleep study says CPAP is necessary, don't choose not to use it just because you don't like it! But educate yourself on the health issues that surround it. Look for different masks that might fit better. Contact CPAP manufacturers and tell them your concerns and ideas. Believe me, I understand completely how you feel. It's often hard to balance health care and quality of life. We just have to keep trying.

   
[-] Sherry +2 points · over 1 year ago

Kathy, being diagnosed in my 20ies, I will say that one of my goals in life is to find an effective alternative to CPAP treatment for many of the reasons you detail in your post especially the traveling piece! My husband is just glad I stopped snoring! I struggle the most with keeping the mask on. It is so cumbersome to sleep in. I can totally relate to feeling like Darth Vader! Being in the skin care industry, the mask doesn't do anything in helping to prevent wrinkles. That is another pet peeve. I imagine that many women just don't comply for all of these and the emotional/social reasons you bring to light! Thanks for your authentic blog post! I am sure many can relate!

   
[-] Ruby +0 points · over 1 year ago

Thanks, Sherry! I agree, masks don't like skin care products. I have enough other wrinkles to worry about beyond what the mask does to me. Many probably think this is a silly thing to worry about compared to the health risks of not sleeping for even other health issues, such as cancer. But sometimes it is the pile up of little things that can get us down.

   
[-] SusanR +2 points · over 1 year ago

Hi Kathy,

Thanks for so vividly describing your experiences. Although I have heard alot from patients about their feeling about diagnosis and CPAP masks/machines, your description crystallizes the many very personal issues that may arise. After reading your blog, clinicians will better appreciate the challenges their patients face, and I will encourage my colleagues to read this carefully. I look forward to learning more from other patients like you, too, and hope patients will help identify new ways to approach treatment.

-Susan

   
[-] PoliteBeigeAardvark2160 +1 point · over 1 year ago

Bottom Line is if you are getting the sleep you need and deserve!

   
[-] Ruby +1 point · over 1 year ago

You are absolutely correct!

   
[-] BrainsNeedSleep +1 point · over 1 year ago

Ruby I am sure you know that when flying, TSA and airlines are required to allow a medical device on board with you as a third piece of luggage, not to count against your 2-item max, and requiring you to "check" it is absolutely not okay. A couple of years ago I thought I saw something on the TSA website that one could print out and show the TSA agents but when I went back just recently in anticipation of a trip of my own, when I searched "CPAP" all I got was info on oxygen.

Getting over the whole "I'm no longer attractive to my bedpartner" does take a little doing, but I have friends whose partners are relieved about the mask because (1) the reduction in snoring is so helpful, and (2) they know it's a health issue and they would like to keep their bedmate around a while :-) Granted, there are partnerships where one or both are uncommunicative, but then the issues are far greater than a simple CPAP. Personally I loathe the industrial-grey hose assembly and am looking forward to neon green or fuschia, and I prefer the "fighter pilot" mask image than Darth Vader, though Darth does share sound...

And I had to crack up at your remark about the mask-slipping sounds: my dog leaps up and runs over to check on me when a particularly bad one happens, usually when I'm shifting position. He also wakes me up if the mask leak alert too-quiet alarm goes off because I rarely hear it my self.

As for sleeping with others -- increasingly people I know are using CPAP (partly because I pester them until they get tested) and the odds of getting a roommate on trips, etc, who also uses one may be moving in our favor!

So glad to know you are persisting in using yours. I hate mine, too, for all the usual reasons, but since I now see the benefits -- including just how bad things got! -- there's no way anyone is taking mine away until something better (and non-pharmaceutical) comes along.

   
[-] Ruby +0 points · over 1 year ago

The problem with the airport is that I had put my CPAP and supplies into another bag. I hate to have so many bags to deal with so consolidated it with my purse and small computer. As I understand it, they can make you check any bag if they think it is necessary although not a medical bag. Since my CPAP wasn't in the actual carry bag, they could do what they wanted.

My new machine has some pretty little flowers on it, which doesn't make it better, just prettier. I would love to see different color hoses or even masks but they would probably cost more! Luckily, my husband is okay with the look especially since he knows it helps with my overall health. Still makes me very self-conscious though.

   
[-] Ruby +0 points · over 1 year ago

I am so sorry for not posting replies on these great comments! Honestly, I looked for comments for a couple of days, didn't see anything and figured there wouldn't be any! I appreciate what each person had to say and look forward to further dialogue. Sleep well.

   
[-] RationalGraySwan6790 +0 points · 11 months ago

Thank you for your post it really encouraged me to hang in there. I am new to a cpap. The machine works but I had such a dry nose and mouth I woke up repeatedly. I found Zylimelts helped my dry mouth. Still working on nasal congestion. Not as tired now and yes I feel like Darth Vader. Great post and all the best to you.