04/09/2026
I just realized that tomorrow marks 31 years since I started living life with hypersomnia. Only for the past 5 months and 10 days now have I been in a state of near-remission. During the first few years, the cloudiness in my head was so bad that that is when I started depending on caffeine to at least get me up and going to a degree. I still didn't do so well with it, and, being in graduate school at the time, I had to repeat several classes and much internship time in order to compensate.. Yesterday I woke up with the same cloudiness and dependence on caffeine despite a near normal amount of sleep (hence the "near-remission'), and I went to the Scrabble club anyway despite how I felt. Doing really well despite how I originally felt let me know that what is going on mentally is probably secondary to what I feel like physically. Having been able to function otherwise during the past 31 years is what kept me going all this time, that is when I was and am physically able to be up and around.
In 1996, Eugene Shippen, MD said to me, "You have the disorder without the pain" making reference to what they called "Chronic Fatigue Syndrome." Dr. Shippen is the one who finally brought me from a near house-ridden state too being somewhat functional again to where I was able to complete graduate school. Nobody ever heard of Idiopathic Hypersomnia back then, which is what I've been calling it for the past few years now. But whatever it is, here I am living life ALMOST as normally as I was before April 10, 1995 despite how I feel both physically and mentally. And because of that, I have tremendous empathy for those who live with chronic illnesses, especially those who continue to be ignored and poopooed by their health care providers because of THEIR inability to relate.