Wakeful

A while ago I wrote about being sleepy. I now have an answer, a reason for all that sleepiness: sleep apnea. It’s not sexy, but it’s also not conversion disorder, which was my big fear.

So there’s something actually wrong that the data supports, and you cannot imagine how exciting that is to someone who has dealt with conversion disorder. It’s a sort of validation. That my anxiety is not so all-powerful that it is changing the way I sleep or forcing me to sleep throughout the day.

My CPAP machine has not yet been delivered, but I’ve been coping for a little while now on a new medication. In my Sleepy post, I mentioned a sample. I since received a prescription for a medication called Sunosi. I first took a sample dose in late November and began a prescription in December.

I cannot tell you whether anyone else should ever take this medication, but I can tell you my experience. Precious little is written anecdotally about this medication on the internet as of today, as I found when it was first prescribed for me.

If you want to read about Sunosi and its mechanism for working, its risks, and all that, go here. If you want to know what it has been like to take the medication, read on.

The medication begins at a small dose and increases at intervals until the patient is taking the highest indicated dose. During that transitional period, I had my first passes with being awake, really awake, in a long time. But I also experienced crashes. A few to several hours after a dose, I would crash and all my sleep pressure would tumble down on me with force. However, once I settled on my highest dose for a couple of weeks, the crashes disappeared. The medication granted me about nine hours of alert wakefulness, which was amazing, truly, but I thought there might be a way to extend my day.

I asked and was given permission by my doctor to take half of my dose in the morning and the other half six hours later. This was when a switch flipped in my life. I went from sleeping 14-16 hours every day to being awake 13-15 hours. Most days, no naps.

Now when I am awake, I am alert and capable. I don’t see life through a haze. I am engaged with the people in my life and with my work. I arise in the morning and go to bed in the evening, and it feels terrific.

For a long time, sleeping, particularly daytime sleeping, has felt to me like my own moral failure. Now I see that morality has nothing to do with this situation. My depression is in as small a place as it’s been in years, maybe ever. My anxiety doesn’t overwhelm me often; I’ve had one panic attack in two months. Despite feeling like I went to sleep in my thirties and awoke in my forties, I am more positive, motivated, and assured than I have felt in so very long.

I look forward to getting the CPAP machine. I look forward to oxygenating my brain and body throughout a night of sleep. I am eager to see how that impacts my life. (And, yes, I know it may be a bumpy road.)

But, y’all, being awake is nothing short of inspiring. If you’re struggling with oversleeping, see your doctor. See a sleep doctor. Get help, because help exists. You do not have to sleep through all of your life. You can carve out times to be present and available and awake.

Sleepy

For more than a year I have suggested to my healthcare providers that I’m depressed because I sleep so much, not–as had been presumed–that I sleep because I’m depressed. The doctors have listened. But the wheels of healthcare churn slowly through a miasma of mucky insurance and murky interdepartmental harangues.

It is four days shy of a year since I sat in my psychiatrist’s office and cried over my sleep. My desperate need for it. The pressure that bore down on me every day, making my eyes feel swollen and my appendages leaden.

It’s been two months and two days since my first at-home sleep study failed. No data. That’s all I was told: there was zero data. It’s been one month and two days since the second at-home sleep study also failed due to an error with the pulse oximeter. User error is really tough to accomplish, as the thing has a fingernail drawing and straps to wrap around. Perhaps I tossed too much? No idea.

Meanwhile the sleep lab was charged with battling insurance for an inpatient study, and the sleep doctor has been on vacation.

However, I did receive a sample of a medication for wakefulness. With the doctor’s blessing and a little fine tuning, I have had many wakeful days. Let me tell you, being awake is a wild ride.

I have access to a broader range of emotions. I have bandwidth to follow movies. Did you know you can get work done when you’re awake? It’s amazing! I’m repaying the heavy toll on my loved ones from so very long asleep.

From sleeping 14-16 hours a day on average to sleeping 7-10 hours a day is a tremendous gain. Particularly because my awake hours are alert, productive, and effective. My kids have told me the difference is this: more fun, less frustration, more face time.

As the sample dwindles, I feel my anxiety toying with all the what-ifs of going back to sleep. Like a RIP van Winkle. Here but not. Un-fun. Frustrated and frustrating. Absent.

I’m fighting against that building dread by enjoying my waking moments to the very extent I can. And if I cannot enjoy, then at least I will be present.