>Today was wonderful. We had a fantastic MOONS meeting. I find it incredible that gathering with other PWNs can provide me such joy. Some of them I know, but many are still strangers to me. Yet, simply being a room and knowing that a majority of the people there experience some of the same ridiculous struggles that I endure makes me smile.
I also find it fantastic that I learn something new every time we gather. Today, Dr. Eve Rogers shared her Narcolepsy Basics talk. Invariably, she need to cut some sections of it, but everything that she was able to present was riveting. One of the most stunning pieces of information for me was the connection between hypocretin/orexin (the protein missing in PWNs’ CSF) and temperature regulation. My night sweats can be unreal, and I also have periods of time that I feel feverish or chilled. Suddenly, it seems that I might have yet another aspect of my health that is connected to and undermined by my narcolepsy.
The other super cool thing is that I get to see some of these folks again next week. Tomorrow is the start of Sleep Awareness Week. It culminates with Suddenly Sleepy Saturday. The National Sleep Foundation decided to connect sleep awareness with the beginning of daylight savings time. Thus, when we “spring ahead” on Saturday night, March 7, everyone has a chance to glimpse briefly some of the fatigue and sleepiness of narcolepsy. To celebrate the day, our MOONS groups has decide to hold the first (annual) Suddenly Sleepy Saturday. We are going to bring blankets and watch a movie. We will also have some pizza and a cake (Dr. Rogers’ birthday is the day before our event). While I am thrilled that we are having an “event.” Much more importantly, this gathering will be the first purely social MOONS activity. I am definitely hopeful that we will continue to provide both educational and social events.
>Somehow, another month has nearly passed me by. I am hoping to write a post or two before February also ends. I know that I need to do this, but my daily existence seems to have other plans. We will see what the next three days bring. While February generally stinks, this year seems to be spectacularly chaotic. The good news is that I continue to give myself permission to “underachieve.” Unfortunately, that grows more difficult with each passing day. Our trimester ends next Friday, and the few days off will help me, but I daily find it tougher to shut down the negative voices in my head. I am well aware that I am doing the best I can, yet my constantly ebbing energy hampers me from opening myself to forgiveness.
I also find it ridiculous that I have two posts for the second month in a row. Even worse, both February posts were written WELL after my bedtime. I need to sleep, but also wanted to get something else posted before March. I need to get back into some level of routine. Perhaps, March will enter like a lamb for me. Still, I don’t plan to hold my breath.
>It is WAY past my bedtime. Somehow, though, I am still awake. For the third night in a row, I am up past midnight. Not good. I am out of sorts and definitely “off.” I am heading to bed in a moment, but I wanted to post. Stunningly, January was my worst month ever, in terms of blogging. Fortunately, the rest of my life progressed far better than my pressence here would indicate. I continue to work to reclaim my pre-break balance. I doubt I will ever fully understand how two weeks of vacation can disrupt my routine so thoroughly. That said, I remain grateful for the vacation.
I believe that I am reacquitring some semblence of order and focus. At my acupuncture appointment today, I commented that I have often felt in the past two weeks that the world seems to move at Mach 2 or 3. But, I seem to be confinded to slow motion. While the world rushes past, I find myself marvelling at the insanity of life. Alright, I must sleep NOW. I shall return (far sooner than the month that lapsed between my last post and this one).