The month of December always encourages somewhat of a personal reflection period being that it is the month I was born in nearly 27 years ago. However, this year brings about a whole new perspective for me as I come up on the first anniversary (or Wellnivesary as I am calling it) of my diagnosis with and treatment for obstructive sleep apnea. A year ago in December, I was spending a lot of time with doctors. I had seen two neurologists here in Spokane and saw a third in Boston, MA while visiting my family to get a "second opinion." It is rather difficult to acquire a second opinion when there isn't actually an official first opinion from which to build! Both specialists could only say what "it" was probably not and possibly similar to. After returning to Spokane and following up with my neurologist here, he ordered one last test to help define what type of movement disorder was causing my incessant tics and twitches; it was the last stop on a train that looked bound toward a lifetime in Pharmaceutical Land. At the end of this past January, I was delivered an unexpected gift at 1:30am during that polysomnogram: a surprised technician at the sleep center came in carrying a C-PAP machine and mask that I was about to wear for the first time.
And the presents keep on coming! Walking out of my home medical care office with this giant plastic sack of C-PAP parts and accessories made me feel like Santa, for lack of a better reference. Then I thought to myself, Santa is a prime candidate for Obstructive Sleep Apnea, what with the terrible air quality in chimneys, his gender, age and physical stature (large neck, carries excess weight in his midsection...)
I'm certain I had no idea what to expect at that point. I know I cried because I thought only "fat, old men" get sleep apnea. I remember my first night of using my C-PAP machine at home and feeling intensely hopeful after what I considered to be a huge and immediate success. And then the feelings of disappointment, desperation and personal failure at not being able to maintain that...
I was overcome with excitement and optimism--and this made the next few nights, which did not go as well, incredibly hard to accept. The novelty of finally knowing what has been affecting my health over the past several years had worn off and been replaced by the realization that I will deal with this for the rest of my life. --taken from this post on February 6, 2011
Many times in the lengthy process toward finding a mask, pressure setting and sleep regimen that would work for me, I wanted nothing more than to be a candidate for corrective surgery, to just give up and revert to being a "twitching idiot" or to somehow just go back in time to when I didn't know I even had sleep apnea. I felt more and more discouraged and at times, isolated in that feeling. I wrote about it a bit on March 19th, here. I wondered if I would ever be able to go to sleep again without "thinking about it" or be able to enjoy that cozy feeling when you wake up naturally in the morning and just want to lay there a bit.
If I had to share my bed space with all of the paperwork, masks, parts, and accessories involved in finally reaching the set-up that now works for me, I'd have no place to sleep!
The truth of that matter is, I'm not entirely there yet. I finally have a mask (Mask #5) that works for me and a pressure setting (I lost count of how many changes that took) that keeps me from having symptoms but isn't too high. I also now have insomnia quite often, as I think the process of getting to where I am now made me rather sensitive to other sleep disturbances. However, I am now off of all of the medications I was on for over a decade. I rarely have the uncontrolled movements that once rendered me unable to hold still at all. On rare occasions, I do wake up with the feeling that I've really enjoyed a restful night and rather than immediately wanting to escape my bed and feeling grateful another night is over, I lay there a bit in the cozy bliss of restfulness. This positivity really came forward yesterday when I checked in again with both my sleep doctor and neurologist. My neurologist here was visibly impressed by the improvement in my strength, balance, and muscle function/control. He said, "It's been a long journey for you, but you really fixed yourself."
At first, I was not sure I agreed entirely with his statement. I recognize how easily this could have been missed if he had not ordered the polysomnogram and if the sleep doctor had gone with his initial intuition to not run the test at all. I realize how easily I could have started a lifelong regimen of more drugs to treat symptoms that I'd likely still deal with if it were not for the correct diagnosis. I realize that essentially, this was and still is in G-d's hands. However, in further reflection, there is truth to my doctor's statement. Many patients continue to struggle with the affects of sleep apnea because it often goes undiagnosed. Many patients who feel chronically fatigued or "just not right" will avoid medical treatment altogether as these symptoms are often mislabeled or overlooked by medical professionals. And many who are diagnosed do not benefit from C-PAP therapy because they discontinue their treatment or their treatment is not completely controlling their sleep disordered breathing.
C-PAP machines are the first line of defense in treatment of sleep apnea. They are a great invention, don't get me wrong--can you imagine if I had to sleep in an iron lung?! A lot of focus is put on the patient responsibility to be "compliant." I strongly dislike that this is the vocabulary used around the issue! Insurance companies will not even cover the purchase of a machine (and cover a rental-only basis of use) until "compliance" over an extended period of time is proven. I recently read an article entitled "Innovative approaches help sleep apnea sufferers benefit from CPAP." The premise of the study done and approach being taken is that patients who have the support and encouragement of a parent or partner/spouse tend to have significantly greater success rates in using CPAP machines. If you are in any way affected by sleep apnea and CPAP therapy, be it that you are the patient or your loved one is, I do encourage you to read this. However, I disagree with the idea that providing emotional support and encouragement for CPAP users is in any way an innovative approach! Unfortunately, within the medical field it is innovative. Many patients are sent home with their machine and left somewhat to their own devices. The author of the article would classify my personal approach to solving my CPAP conundrums as "actively coping." I would classify it is "obsessively stubborn." As much as I would contemplate giving up on the therapy, I never allowed myself to actually see that as an option. I never got to a point where I was willing to go back to the way things were even if things were not as I wanted them yet. Many patients have different coping styles, less obvious symptoms, and do give up on the therapy. Many of those patients' health problems worsen and some actually die from complications of sleep apnea.
If I were to suggest an approach for family, friends, and healthcare providers for people suffering from sleep apnea and to the individuals themselves, it would be that there is no cookie-cutter plan for treating sleep apnea. Every body is different. Some people go home with their shiny new machine and sleep well immediately and for the rest of their lives. Some go home and immediately struggle to adjust, whether it's feelings of claustrophobia, the noise, the lights, an ill-fitting mask, an incorrect pressure setting, you name it. Some have an amazing first night and then nearly a year of struggling. There is no "it takes 4-6 weeks to kick in" type plan here. Well meaning folks will ask how you've slept every morning. Well meaning folks will tell you "you should be back to normal in about 2 months." Well meaning folks will tell you their experience with CPAP was "amazing" or "horrible" or "fill-in-the-blank." And as well meaning but often sleep-deprived patients, we may receive it well, laugh it off or burst into tears--often not when we expect or plan to!
If I had to categorize and classify my experience, I'd put under "Success Stories." Right now, CPAP therapy is my one and only ticket to continued wellness. I tolerate my good ol' machine, sometimes I even almost like the little thing! Do I sometimes still wish that I could have some sort of magical one-time-only cure and not have to use it ever again? Honestly, yes. But the quality of the life I live each day because of how well I am able to sleep at night is the truest testament to how beneficial this therapy is for me. As I near the day I will celebrate my 27th year on this beautiful blue planet, I am immensely grateful to also be celebrating my 1st Wellniversary and to be surrounded near and far by people who showed incredible amounts of love, humor, kindness and patience through it all!