Sleep and Wakefulness

I wake to sleep, and take my waking slow./ I feel my fate in what I cannot fear./ I learn by going where I have to go.// We think by feeling. What is there to know?

                                                                       -Theodore Roethke, from "The Waking"

I never knew that my understanding of what awake feels like was so different from most people until I had my first sleep study. I remember having a very difficult time getting to sleep, which is typical whenever I'm not in my own bed. My thoughts were racing: I was worried about the sleep study results and a host of other things. At some point, I heard the nurse enter my room and opened my eyes, which seemed to startle her. "I'm so sorry," she whispered. "I didn't mean to wake you." A tube that measured airflow wasn't working properly and she had to replace it. When I told her not to worry and that I was already awake, she seemed perplexed. Later I learned that according to the EEG, I was technically asleep when she came in to replace the tube. It seemed strange to me because I felt so strongly awake. Apparently, this is a common occurrence for people with Narcolepsy, this unique experience of sleep and wakefulness.

Installment II

When we left NYC and ended up in a small town in the mountains of North Carolina, my son was six months old. By that time, I was experiencing pretty severe cognitive decline. I had no ability to sequence; I couldn't plan or finish anything. I wasn’t able to concentrate and was often over stimulated. I became easily flustered and had trouble recalling words; I even started stammering. Eventually, I had no short term memory and had lost huge chunks of my long term memory. The worst part was that I was completely aware of just how bad things had gotten. 

Things would get worse, much worse, before I had any idea of what was wrong. I got close to the answers but was easily derailed and gave up. One of the first people I met in North Carolina suggested that I may have gluten intolerance. She told me that she discovered her own Celiac Disease after adopting her daughter who had many health problems, including a persistent and mysterious rash. When doctors could not help her baby, she began her own research and eventually discovered that her daughter was suffering from Celiac Disease. Through her research, she recognized many of the symptoms in herself. While her daughter's symptoms first presented in the skin (dermatitis herpetiformis), hers manifested as neurological problems, some of which she recognized in me. She suggested that I ask my doctor for a celiac test, a simple blood test that my insurance company would cover with a referral. I immediately made an appointment with my doctor and felt a tiny sliver of hope that I might be close to an answer. 

That hope was demolished when my doctor scoffed at my request for a celiac panel. "Celiac is a wasting disease," he said while glancing up and down my body, "and clearly, you are not wasting." I still hadn't lost all of the weight from my pregnancy and was easily 20-30 pounds overweight. He refused to refer me for the blood test, referring me instead to a psychiatrist. I was furious for a while but soon became consumed by hopelessness. I don't remember much of the next two and a half years, only that I was sinking deeper and deeper into despair.

What Was Wrong

Installment I:

Where do I begin? Beginning with the first signs and symptoms of Narcolepsy and Celiac Disease seems like the most appropriate place to start; however, it's too much to untangle in one post. For now, it makes sense to begin with my pregnancy, since that's really the point at which I lost all ability to cope. 

One of the most important things to note is that I had terrible morning sickness, which, to be more accurate, should be called all day and night sickness. I was sick for the first eight months of my pregnancy, and by the time the daily vomiting had subsided, I was too enormous to enjoy it. It seemed the only thing that settled my stomach was bread and cheese. The ungodly number of grilled cheese sandwiches I consumed is terrifying to think about, especially now that I know I was poisoning myself along with my unborn son. Sadly, it would be another five years before I figured out that I have Celiac Disease. 

I still feel guilty about my grilled cheese sandwich diet while pregnant, and the extent of my gluten and dairy addiction continues to perplex me. It's weird that the things that were killing me were the very things that I craved on a daily basis. In fact, since I was a child, it seemed like bread and cheese were the only foods that calmed my stomach.

Long story short-- after the birth of my son, I literally lost my mind. I could not think clearly, my memory was going, and I was terrified that I had early Alzheimer's. I suffered from debilitating fatigue, anxiety, and depression, all of which make sense now but at the time, caused me to question my very existence. It is difficult to admit just how suicidal I had become, but with the help of my partner and son, both of whom have never once given up on me, I continued to push through.

What's Wrong With Me?

In my mid twenties, I lived in NYC and worked as an office manager at a psychotherapy center in Chelsea. It was my favorite job. I loved my boss, the therapists, the clients, the deli guys next door, the Debbie Harry sightings; I loved everything about that job (except having to deal with insurance companies).  

During my time there, I became fairly familiar with the DSM-IV and seemed to recognize parts of my struggles in many of the codes: 314.00 (ADD) , 300.02 (Generalized Anxiety Disorder), 300.3 (Obsessive-Compulsive Disorder), 296.30 (Major Depressive Disorder, Recurrent). One of the therapists, my friend, L., got very annoyed with me whenever he would see me perusing pages and considering criteria. "Stop pathologizing yourself," he'd say. "There is nothing wrong with you!"  

But there was...  

Something was very wrong with me. I always knew it even if I couldn't name it. A decade would pass before I began to figure things out. It would take having a baby (and consequently, losing my mind) and finding a good neurologist to learn that most of my struggles originated with having undiagnosed Narcolepsy since early childhood. Later, I would figure out that most of my struggles with Narcolepsy may have been exacerbated by undiagnosed Celiac Disease.  

My intentions are primarily to collect, organize and make sense of my thoughts and experiences living with Narcolepsy and Celiac Disease both before and after diagnosis. Even with my super hero neurologist, I had to figure out most things on my own. It has been a difficult journey, and the internet continues to be my most valuable resource. Through online forums and blogs, I have been able to make connections that I could not have made alone, which is my main motivation for starting this blog.