On November 30, 2017, my husband took me to a Continuing Education event, hosted by the CDC and #MEAction, to view the documentary Unrest, an unflinching, real, true, up-close-and-personal look at chronic illness, specifically myalgic encephalomyelitis, commonly (and erroneously) (and horribly) known as chronic fatigue syndrome (MEcfs). A disease I suffer daily.
The filmmaker, Jennifer Brea, was in attendance (who I was too exhausted to meet), as were members of the Georgia Chapter of MEAction (on Facebook, so you’ll need an account), along with Dr. Elizabeth Unger and Dr. Nancy Klimas (sorry I’m too tired to get links, but they are Very Important People and Advocates for MEcfs).
Although I wrote copious notes from the event to write a blog post, I have been unable to do so, nor have I been able to re-watch the film. (I get about 10 seconds in and start crying.)
On the way home, at 9:38pm, I filmed this short (1:03) video of myself (transcript below), which I have only shared with other ME patients. But now, in light of #MEAwareness, it feels like I should share it widely.
Note: the sound quality is poor, as the background noises from the car driving are louder than me speaking, slowly and in a low monotone. You may also have to unmute the video.
Image description: a very tired face laying on pillows in the back of a car and speaking to the camera; the streetlights move on and off the face, making it somewhat moody; is also a good allegory for how #pwME can be fine one hour, and not at all fine the next.
“Hi. I’m dSavannah.
“And the reason you can’t see me is I’m in the backseat of the car on the way home from a continuing education event and screening of the documentary Unrest about MEcfs.
“And it exhausted me so much that I was sobbing on the way out of the theater.
“And now I’m having to lay in the back seat to get home as my husband drives.
“And I want to cry but I am too wrung out and I’m going to be in bed for probably the next two days from just this little tiny effort.
“And this is what MEcfs looks like.”
dSavannah note: in fact, my pain flare and Post Extertional Malaise flare lasted over a week, and got ten times worse than what I felt that night.
I wrote the following notes in my calendar:
- Friday: Feel like shit. Nausea. Cry. Pain. Stomach issues. In bed all day. Very little sleep.
- Saturday: Wake up crying. Headache. Feel horrible. In bed all day.
- Sunday: Feel horrible. Can’t move or think. Cry.
- Monday: Feel horrible, but slightly better than previous days.
- Tuesday: Stomach. PAIN. Cry. Severe back pain. Horrible flare.
- Wednesday: COLD. Stomach. Soooo achy. Try to rest.
- Thursday: Cry. Stomach bad. PAIN. Cold. So tired. Try to do a few things.
- Friday: Sleep. Exhuasted. Cold. Rain. TIRED. Back PAIN. Eye dr appt.
Please follow our hashtags on social media, and share them. Us patients cannot advocate alone. And everything I’m doing this week is causing me severe fatigue and severe pain.
I’m going to pay the price. But it’s one I’m willing to pay. For all of us.
I’m one of the #MillionsMissing
PS: the film Unrest is available on Netflix, in a number of languages. Please watch it if you have not yet done so.
And as always, forgive any typos. My shoulders are on fire and I can’t see straight.