Watch the TED talk or the movie Unrest by Jennifer Brea. It’s hard but it’s a glimpse into what I deal with and more people need to be aware of the severity of ME/CFS. Or even that it’s a real thing affecting millions of real people. Everyone in the movie has it way harder than me but my symptoms have multiplied rapidly since Chiari surgery in June of 2020, 5 days after my 35th birthday, 7 years of slowly deteriorating while being ignored. Thinking this is just what your body does when you approach 30.

I watched her movie not long before surgery and figured I probably don’t have what they have because I was doing okay. I could ride my bike still even if I could no longer source and sell used books. Now I’m pretty sure it’s what I’ve got, one of the things I’ve got. I’ve at least got a doctor willing to refer me and a neurosurgeon who is going to keep working with me.

Here’s what I wrote after watching the TED talk. After wiping my tears (because crying is not good when there’s high brain pressure!)

Those Facebook memories are so hard to see. This was probably 10 years ago.

I used to bike 15+ miles a day, nanny for multiple families, go dancing with friends, write and perform poetry, and do hot yoga. I was a veritable ball of energy. I even once did 107 bikram yoga classes in 107 days. I did a triple to make up for a few days I missed. Today, I managed to wash a few dishes, work with my kiddo on his school work, feed us, read a little, and sweep the floor even though walking is hard. A shower or driving the car can wipe me out for hours or days or trigger a ton of pain or take away my ability to walk. It will feel like I can’t move even to lift my head, my legs and arms feel like they are being crushed in concrete, and noises, smells, light, and vibrations completely overwhelm me. Then there are the migraines, poor immune system, unrestful sleep, issues trying to say words or pull together complex thoughts. I’m a shell of who I used to be. Well, I’m still me, full of life and ideas and aspirations, but I’m stuck in this shell of a body.

Last week after a shower. I somehow got dressed and made it into my bed, but holding my head up and using my phone were excruciating.

I wouldn’t know how to keep trudging on if it weren’t for the internet and people like Jen. Someone asked me recently where I get my drive from and I of course made jokes. I can joke when in the ER with a level 10 migraine. I joked in the ICU hours after brain surgery. But in all seriousness, I don’t have a choice. It’s not a choose-your-own-adventure, but I’m gonna make it to the end of the book somehow.

About JennP

Single mom by choice, lesbian, natural living, parenting, car free, Chicago.Thank you for reading and feel free to leave a comment!
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