I had a glimpse of what life used to be like. And I'm using the term "life" loosely. I wasn't actually living. The quality of my life had deteriorated to the point of almost hitting bottom. Thing is, I didn't know it until much later.
The gradual onset, the slow but ever escalating progression settled upon me like a blanket. Speaking of blankets, that's exactly all I wanted. I remember in my sophomore year of college feeling an overwhelming sense of tiredness that was beyond all else. The urge to sleep was so painful, I contemplated the worst of alternatives.
Fast forward 13 years. Six sleep studies later, my doctor confirmed the suspicions, I and my other physicians, had for years. The vivid dreams and terrifying nightmares, the hallucinations upon waking or sleeping that made me question reality, the slurred speech, the head bobbing as I sat as a passenger (had license revoked as a result of falling asleep driving - no accidents, thank God), the inability to move my body as I was awaken. All these are tell-tale signs of...
Narcolepsy. Giving it a name empowered me. It made me not be so fearful once I understood this as a medical illness and not as losing my mind, my greatest fear. With two medications and lifestyle changes such as taking a "Power Cat Nap" of twenty minutes once or twice a day, I still have significant symptoms; however,
When we lowered the stimulant medication, in an attempt to reduce the excess dreaming and nightmares, it happened again. I felt exactly like I used to. I was suicidal not because of depression, a break up, or financial troubles (have them too), but because the extreme physical exhaustion drained me to the point where I literally thought I could not go on. I cried for all the lost time, the years, that past left undiagnosed and untreated.
I carry a list of 25 things I am grateful for in my purse to review something tangible in case of an emergency. This was definitely an emergency. Holding the list grounded me and kept me safe. I am adding item 26. I am thankful that I feel a little better, not perfect, not good, but better. I'll take that for now.
If you're looking for me, I'll be under the covers. If you're looking for more information on Narcolepsy, check out these sites:
Narcolepsy Fact Sheet: National Institute of Neurological Disorders and Strokes
Narcolepsy mini fact sheet
Sweet Dreams & Sleep Well,
Donna
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