The newsletter went out. If you had asked me this morning or this afternoon if that was going to happen, I would have looked at you skeptically, re-positioned myself under my super soft fuzzy blanket on the couch, and pressed play on the next episode of “Offspring.”
Yesterday did me in and today I was exhausted and in a lot of pain. But a brief bit of energy came my way this evening and I was able to get it on its way. If you think you should have gotten one in your inbox but didn’t, let me know.
Almost two years ago I sat huddled in a corner of The Engineer’s Club in Baltimore. My companion and I were catching up and she asked how I was doing. I took a deep breath and I told her.
Not well. It’s been really hard. My energy levels are so unpredictable. Some days aren’t so bad, others are horrible and I can’t get off the couch to walk my dog. I made a lot of plans and concessions to come to this event, and I know it’s going to knock me out for the next week before I can drive back home. I’m just exhausted all the time.
She told me that she knew someone else who shared my story and that she was helping her make a movie about it. That woman’s name is Jennifer Brea, and her movie “Unrest” has been shown in theaters around the US and is now available for streaming. Tonight was a one night only showing in Ithaca, with a post-film talk with two local researchers who are tackling the mysteries of Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome.
As someone who has ME/CFS, the movie was at times deeply, devastatingly sad and familiar, and at others times affirming. A dear friend attended with me and held my hand while I used up several tissues. At other moments I just nodded my head emphatically.
During the talk Cornell University professor Maureen Hanson and Ithaca College professor Betsy Keller (both part of the Cornell University Center for Enervating Neuroimmune Disease (ENID)) talked about the defining factor in ME/CFS diagnosis: post-exertional malaise. That’s a fancy phrase for “if I do something now I’ll pay for it later.”
Want to walk around the neighborhood for Porchfest? Maybe. At least take a folding stool, a liter of water, sunglasses, a hat, emergency medications and if you’re having a decent day you can probably make it work. But you’ll pay for it later. Know that the next day is a write-off and hope it isn’t for more days than that. At least that’s my experience. And I’m luckier than some, because some years I can go to Porchfest.
If you know anyone with ME/CFS, I *highly* recommend that you watch this film. If you’re just curious about a mysterious illness that affects over 1 million people in the US but has no clear cause and no cure, watch it.
I live with a collection of chronic health challenges, the most debilitating of which is Chronic Fatigue. But once in a while I’m able to focus and motivate myself for longer than usual. Today was one of those days!
I forgot half my breakfast in the toaster. Took some pictures. Made a couple of things. Forgot to eat lunch. Edited. Wrote a little. Did remember to walk Marigold Dog. Pushed and pushed and pushed to hit the project deadline. Which I did!
Then promptly collapsed. Like I do.
Which means it included leftover gluten-free dairy-free pizza and no beer, just water.
Tomorrow will probably be extra hard. Luckily, all I have to do is facilitate a two hour conversation about death.
This is a picture of 12 week old Riley. I am continuously amazed at what dogs can be trained to identify. In this case moths and other pests that can potentially damage artwork.
“No technology is as powerful at detecting scents as the nostrils of dogs, which have long been trained to use their
superior schnozzes to sniff out explosives, cadavers, bed bugs, ants and cancer, among other things.”
I’m a little late to the party – I just got around to absorbing this piece from the NYT Magazine from earlier this month. An inside look at the process of making pencils, and some gorgeous photography.