Sleep Apnea?! Oh, CPAP!

C-PAP Re-cap:
As many of you already know, after months of doctors visits both locally and back east, and after years of unexplainable and untreated health problems, I was diagnosed in January (quite to the surprise of my doctors and myself) with severe Obstructive Sleep Apnea. Within days, I met with a home medical care specialist and took home my new C-PAP machine and my first mask. I was overcome with excitement at finally knowing what has been going on all these years and optimistic about my future. My first night on C-PAP therapy was nothing short of amazing--I slept nearly through the night and awoke feeling no chest pain, no shortness of breath, and no numbness or tingling in my hands and arms.

Sleepless In Spokane
Subsequent nights did not go quite so well, until after over a month of trying to somehow make it work, I realized this mask was not the one for me. I am fairly petite, and even though this was the smallest size in this particular style of full-face masks (covers both the nose and mouth), I couldn't manage to keep it from moving or leaking and consequently spewing pressurized air into my eyes. While this did give my eyelashes that nice windblown look (I might sell it on e-bay now and target the modeling industry), it was not conducive to a good night's sleep! No problem, there are over a hundred different mask and nasal attachments for C-PAP machines. I have since met with the sleep physician who conducted the sleep study and who will oversee my treatment from hereon out. I've also had several meetings with my home medical care specialist. About 2 weeks ago, I brought home a new attachment, called a nasal pillow (sounds either luxurious or gross and it's a little bit of both, if you ask me). This one is made specifically for women and is therefore quite a bit smaller and less bulky. Rather than covering my nose and mouth, it sits below my nose and blows air into my nostrils. It's cute, right? Mine is a pastel blue and has a charming floral print on the straps. The first challenge with this would be learning to breathe through my nose and not my mouth. This would be a relatively quick lesson. Every time I even opened my mouth with the thing attached, it sent gushing air down the back of my throat. Needless to say, I was awake every 5 to 10 minutes on the first night of using my new nasal pillow. The next night, I was filled with dread at bedtime.

"Ok, Michelle," I said to myself, (Hey, when you get as little sleep and oxygen at night as I do, you, too, will start having conversations with yourself!) "Keep an open mind and a closed mouth!"
I started my bedtime routine extra early that night and rather than approaching this contraption as a medical device, I decided to think of it in Yogic terms as my brand new Pranayama (Yoga breathing) machine. I did a few gentle poses, spent some time in legs-up-the-wall position, and got into bed and masked up. And so I proceeded on several more nights with the nasal pillow, which has the bonus of being very lightweight and very easy to remove. So easy to remove, in fact, that I figured out how to do so in my sleep...Great! Several times each night I'd awaken adorably snuggled up next to my nasal pillow and hose, which was still attached to my C-PAP machine but not attached to me! I was not sure why I was taking off the device and I realized I was spending very few hours of the night actually getting any air or sleep for that matter. Nights of restless sleep continued and I continued to wake up each morning with too much evidence of that. Add to that yet another exciting challenge: making use of a nasal pillow when you have a cold and stuffy nose!

Waiting to Exhale
After recovering enough from my cold that I could breathe through my nose and still struggling to keep the nasal pillow on for more than half an hour at a time, I decided it was time to put in another call to my home medical care specialist. I made the call yesterday in the early afternoon. She proposed that I might be opening my mouth in my sleep and removing the mask because the air gushing down my throat was uncomfortable and waking me up. She suggested adding a chin strap to the mix, which would help keep my mouth closed. Now I would start by putting on the nasal pillow and then affix the chin strap over that to keep me from opening my mouth and add another layer between my overly nimble fingers and the straps of my nasal pillow.

Mask Up!
I got home in the evening and began to set up camp. (This includes daily changing of the distilled water in my machine and cleaning of the nasal pillow, bi-weekly rinsing of the filter sponge in the back, and weekly washing of the now 2 hose attachments followed by a dry run of the machine to get all the excess water out of the hose.) I unwrapped my new chin strap. I started laughing as made size adjustments. And then, seemingly out of nowhere, I started crying. And not just a few moments of moping or pouting, we're talking full-blown crocodile tears, heaving sobs and massively puffy eyes to boot!
My evening wear is starting to look more and more like this!
For some time, I let myself go to the place I've avoided going at all until now. "This is not what I want." I let myself feel the fear and sadness around having sleep apnea for the rest of my life. I let myself feel the overwhelming relief at that being all it is that has been affecting my health for so long and at having a long rest-of-my-life to look forward to! I concurrently allowed myself to experience the anxiety and frustration at there not being a quick fix for this (or a cure at all for that matter, aside from potentially unsuccessful and invasive surgery). I do not think it is healthy to exist in that state of mind for long, but it is also not healthy to completely hold it in either, so for that time, I allowed the intense emotions to flood me, move through me, and move onward.
I now had to clean out my hose and nasal pillow again (you don't want to know what all got in there during my sob session!), and remove mass quantities of my hair from various strips of Velcro (these really were made for bald, middle aged men). As I stoically went through these motions, I also acknowledged internally that if this additional conglomeration of Velcro and neoprene is what I needed to be able to sleep, breathe and heal, it would be totally worth it. If it did not work out, there were still other options. After time, all of this would become second nature and I might even have a hard time recalling the intensity of this particular moment.

It Takes Your Breath Away!
I masked up again, turned on the machine and had 3 consecutive hours of sleep in which I was able to breathe and recuperate. I woke up after that time aware that the overabundance of straps was rubbing uncomfortably against the back of my ears, but my chest didn't hurt. I wasn't short of breath. My hands and arms weren't numb or achy, I was not drenched in a cold sweat, and my heart rate was at its normal resting pace.
Unsure of what to do regarding the painful rubbing of straps against my ears, I ended up having a restless continuation of my night, but I was proactive in calling my home care specialist this morning and learned how to remove one of the extra straps. I made it through my work day, got home, and masked up yet again for a nap! Napping is still hard for me because I personally loathe sleeping during the day after years of doing so uncontrollably, but I managed a short one--breathing and all!

...And the Moral of the Story Is...
C-PAP stands for Continuous Positive Airway Pressure. Two words in that acronym stand out to me more and more: positive and pressure. It is essential (though often challenging) to stay positive in this process. There are so many options for C-PAP therapy and beyond that, there are other treatment options to look into as well. There is not a quick fix and I must remember that I did not become this unwell in one night, one month, or even one year. It will take time and guesswork to become well. The process may not be linear and at times it may feel as if I am moving backward. The second word which pops up often is pressure, and that is what I feel when I realize people are going to ask me how I slept every morning with sincere, genuine hope that I will say "better." I even feel pressure that I inflict upon myself because this is what is standing between my state of health as it is right now and where I would like to be. My energy reserves are still low and fluctuating. That is where I remember the importance of the word continuous in C-PAP therapy and sleep apnea treatment. The fact of the matter is, that even moving backward is still moving. So long as I keep on keeping on, I am never at a point in which I have any reason to give up. Like riding a bicycle, you only fall if you stop pedaling. I must maintain my sense of humor around it--laughter keeps the airways open, you know!
I had a brief conversation with a family member this afternoon in which he expressed his empathy by saying "I'm so sorry you have to go through this all alone!" It was in that moment that I clearly stated and recognized for the first time, "I am not alone. You are there to support me and I have friends here, too. I am also not the only person with sleep apnea." I might indulge in occasional, designated "me" time to wallow in anger, frustration, sadness or fear. I do this with the understanding that when that time is up, I come back into the world I am so happy and grateful to be a part of and take my days and moments one compassionate and intentional breath at a time.