The Art of Sleep

Dear friends,

Lyme experts say that getting enough sleep is one of the best things one can do. Yet, finding deep, solid, restful sleep is arguably one of the longest-running, energy-consuming, pull-your-hair-out obstacles for all Lyme sufferers. The search for sleep, then, becomes as much a struggle as finding an appropriate doctor.

I remember three years ago during my first fall with Lyme Disease. I remember lying on my mattress in my studio apartment becoming more anxious as the night grew darker. I would try to find a position to lay my body in order to minimize the pain. As I lay there, I would listen to my breath fall into rhythm with the foggy throbbing in my head. I would think about everything and nothing all at the same time. And I would feel so alone, so helpless.

After about 90 minutes of lying on the mattress in severe pain - often to the point that my entire body would begin to shake - I would finally give in and turn on the TV. I hoped the late night comedy shows would help me either fall asleep or, at least, distract me from the pain. The TV rarely accomplished either. But, somehow, my body would slowly drift off to sleep - three hours after I started the process. Night after night, my body and my mind struggled for control.

Waking up was another battle. Though I tended to wake up at a reasonable time, I would have a difficult time getting out of bed. Up until four or five months ago, I would wake up, take my thyroid medicine, go back to bed, lie there or fall asleep, wake up a half-hour later, eat breakfast, take medicine, and then go back to bed to sleep, email, or watch a movie. At around 11a, I would finally get up and start getting ready for the day either because I had somewhere to be or I just felt rather pathetic for spending so much time in bed.

I can't explain why I would feel this way in the morning. Even if I fell asleep at a reasonable time the night before, in the morning I always felt groggy, achy, and just tired all over. I never felt rested. Of course, life goes on whether I feel good or not, which meant that I often had to go to morning appointments. On these mornings, I woke up rather unhappily; I always felt like I was an injured athlete who continued to play despite the pain. But my body is smart. It would always compensate by making me take naps as soon as I got home from my appointments.

Naps, however, have brought their fair share of hardship. Before having Lyme, I was never a napper. I would tell people that naps were a waste of time because I always had something more important to do. But then I got Lyme and afternoon naps not only became a daily indicator that I had Lyme, but they also became my lifesaver. My afternoon naps often compensated for the lack of restful sleep at night. They provided my body the space to heal - so much so that my body would fall into a deep sleep, often lasting for three hours.

While I loved naps, I equally hated them. I would fall into such a deep sleep that they became almost trance-like, making it nearly impossible to wake up from. At the point of waking, my eyes would open, but no muscle in my body could move. It felt like a heavy cloak laying on top of my body. I would try to lift my head, but the rest of my body would not follow. My breathing would feel very labored. At this time, I would close my eyes and fall back to sleep for 20 minutes. I would then wake up again and seek to slowly regain my senses and muscles. I would then stand up and slowly walk around the room before I did anything that required any degree of concentration. It was an awful, helpless feeling. It was precisely why I rarely allowed anyone to see me that way.

Interrupted sleep can be destructive to getting deep, solid, restful sleep, too. When I was in Seattle last month, I slept at my friends' apartment in the city. I love cities, but sometimes they just be too much. One night, I listened to every automobile that could possibly make noise: police cars, ambulances, garbage trucks. One truck "beep beeped" for so long that I swear it was driving backwards in circles around the block. Kids are also difficult to sleep with. I love my nephew, but when he is sick or when he gets a nightmare, he wakes up and cries. Sometimes he cries for a whole hour. And I hear all of this. Interruptions like this make the Lyme bugs go berserk: I wake up feeling totally achy, anxious, numb, heavy, and tired everywhere. It becomes very difficult to concentrate, too, which interferes with my grad studies or other projects I have. To make matters worse, for every one night of interrupted sleep, it takes at least two days to recover.

Thanks to my acupuncturist, Mia, I have discovered at least three different kinds of ear plugs. After telling her my sleep would become all out of sorts due to these unexpected interruptions, she gave me a small stash of hers. Apparently, she once purchased 30 different kinds for her husband so he could find the perfect ear plug. Who knew so many kinds existed?

In the last few months, I think I have found the perfect sleeping experience: ear plugs, a sleeping mask, and a makeshift head igloo made out of pillows. I fall asleep fast, I sleep deeply, and I experience few interruptions at night. I am waking up rested, ready for the day's events, taking no naps, and feeling energized all day. These are signs that my body is successfully fighting Lyme. The difference between June 2006 and now is night and day.

Literally.

A.