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…and I started my day off on the wrong foot. I am way too aware of my ME/CFS today.
My alarm was set for 3:30 am – a time of night at which I’ve usually only been asleep for about an hour. But today, I was headed to the Type-A Parent Mastermind Summit in Chicago. The only flight that would get me to Chicago before nightfall departed my local airport at 5:55 am. But despite setting the vibrating alarm on my Fitbit, I only woke up when the house phone rang at 5:00 am. It was my mom, who had been outside my house for the previous hour trying to wake someone up inside by ringing the doorbell and banging on the front door. None of us heard her, and her cell phone wasn’t working, so she had to drive home to call me. (Thankfully, she only lives 5 minutes away.)
So she gets me to the airport by 5:20, where they tell me my luggage might not make it on the plane. “Go to gate C2 and don’t stop, or you might not make it on the plane either.” Aaaand the line for security was much longer than I had expected it to be at that hour.
I made it onto my flight, and I was grateful to learn at baggage claim in Chicago that my luggage made it, too – and I was not the last person on the plane.
I was unable to sleep during the flight, which was something I’d sort of been counting on doing. The fatigue really slammed me by the time I made it to the Hard Rock Hotel with my friend Kelly who had taken the same flight. Of course, we were there so early that there were no rooms available yet. I dragged myself off to breakfast with Kelly and Kelby, relying on my cane to help me walk. I completely wilted when we got back to the hotel, because even the relatively short two-block walk to the Wildberry Cafe was enough to trigger some massive post-extertional malaise. Our rooms still weren’t ready, but I was the first in our group to get the phone call alerting me that I had a room to check in to. I left my friends behind so I could get into my bed and lie down.
I had a brief catnap before going out to lunch with another conference friend. (We had planned this ahead of time, and I ended up feeling very full my the end of the meal, not having intended to go out for pancakes earlier.)
After that? I came back and had a really great nap. I met my roommate when she arrived before I fell asleep, but then I was dead to the world for a while.
My CFS has been really bogging me down for weeks. Well, months. Well, at least two years now. But my travel schedule for this conference induced an especially ironic crash on ME/CFS Awareness Day. This day comes around every year on May 12, but although I had experienced crashes on this date previously, I think this is one of the worst.
My nap really helped, and I’ve been feeding myself extra calories to replace the energy stores that I was already borrowing from the future. This is allowing me to Fake It for the evening, and I hope I’ll be able to take on this evening’s two-hour welcome party for at least the first half.
I’m hoping that I’ll sleep well enough tonight that I’ll also be able to power through the conference tomorrow and the following day. I’m pretty sure I’ll be borrowing spoons from Sunday through Tuesday or Wednesday, but that’s the deal I make with myself every time I travel for a conference. It’s always been worth it, because I always learn things and feed my soul by spending time with my far-away friends who normally only “live on Facebook” with me. I pay for it with the physical consequences when I get back home, but such is life with CFS.
Read my Big Fat Medical Update for more details.
That’s me: Christina Gleason. I’m a writer, editor, and disability advocate. I'm a multiply disabled autistic lady doing my best in this world built for abled people. I’m a geek for grammar, fantasy, and casual gaming. I hate vegetables. I cannot reliably speak, so I’ll happily conduct business over email or messaging instead.
