Blog: Not Like The Whiskey

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Netflix and Hill: The True Story Behind “Afflicted”
How to Properly Name a Disease
My Modern Love Essay is in The New York Times
The Aftermath of Afflicted

I know this probably looks like my “pretentious asshole” face, but it’s actually my “I can see again” face ... I didn’t have vision problems until a few years ago. It happened to coincide with the time I became extremely sensitive to light (along with the whole not being able to speak or eat thing). - So when my health started to improve and I could look outside again I just thought my vision was super blurry because I literally had a washcloth over my eyes for two years and they were deconditioned. And that still may have played a role — maybe my eyes needed some rehab to get acclimated to seeing light and color again — but more so I think I just got older. I’m 30 as fu@k so I guess I just need glasses now. - The only problem is: I haven’t been well enough to drive in the car, sit in a waiting room, and see an eye doctor to get a glasses prescription. So I decided to try some generic reading glasses. They didn’t work because everything farther than a few feet away is super blurry and I can read stuff up close fine. - These glasses are generic for distance and they seem to work good. I can see outside so much better. The shapes and lines and colors are so much clearer. For anyone in a similar situation — unable to go to an eye doctor — I recommend buying some generic glasses until your health improves. Also, there are online services that will renew your existing prescription so you don’t have to go into get an eye exam. I couldn’t do this because I’ve never had a prescription before. There maybe be an even better option soon — one of my Facebook friends recently shared a new tool that lets you do an eye exam on your phone using an attachment. That would definitely help people like me. But for now the generic glasses work and I’m grateful! #spoonie #lymediseaseawareness #lymedontkillmyvibe #invisibleillness #lymedisease #chronicillness #chronicpain #eyeglasses #mecfs #millionsmissing

Just ignore the dark bags under my eyes ... That’s called insomnia. But go listen to the latest episode of Armchair Expert (link in my bio — my chat with Dax Shepard starts at 1:55:20). And go donate to @openmedf and @meactnet and @globallymealliance and all the other amazing #chronicillness charities. Most have donations tripled until Nov. 27 (Tuesday). #lymediseaseawareness #lymediseaseawareness #spoonie #invisibleillness #fibromyalgia #mecfs #mecfsawareness #invisibleillness

So... THIS IS EXCITING ... As some of you may know I had this crazy idea to buy a $2,000 mug and get on Dax Shepard (@daxshepard)’s @armchairexppod to raise awareness for #MECFS, #Lyme, #fibromyalgia, and get people to donate to Open Medicine Foundation. Well, thanks to some lovely folks, we raised the money and bought the mug, and I had a nice chat with Dax. - The latter is a long story that I’ll explain in an upcoming blog post, but for now, please check out my chat (starts at 1:55:20) with Dax in the latest episode ft. Sam Harris. - (Side note: I know Sam Harris is sort of controversial, but I actually think it’s an interesting coincidence that we were on the same episode because his mom had CFS and was the creator of Golden Girls, which had that famous episode covering the disease.) - You can find my conversation starting at 1:55:20. It’s towards the end, but it’s there! Hopefully @openmedf gets some donations! Thank you to everyone who pitched in! #invisibleillness #chronicillness #dysautonomia #lymedisease #lymediseaseawareness #lymedontkillmyvibe #spoonie

This one is for all my friends with FOOT FETISHES 🤣 (just joking, but also, if you do you, enjoy!). I got my feet on the floor last week (Next frame 👉) (the floor is much colder than I remembered it). This was part of my motivation to do more with my body lately. It felt good, of course, but the downside is the recovery has taken forever. I crashed pretty hard after getting my feet on the ground. #pots always makes me crash when I do anything that involves putting my feet below my waist. If I keep them elevated, however, I tend to last longer and not crash as bad afterward. But I still wanted to try to stand because, well, I miss it. - Now, after a week of recuperation, I’m finally starting to recover and I’ve been reflecting on the physical weakness and fragility I’ve felt this last week opposed to the emotional vulnerability I show in my writing: - I’ve never been one to mind being vulnerable. In fact, I sort of like it. I’ve written some deeply personal essays and blog posts about things people don’t even like to talk to themselves about, let alone people on Internet, but I do it because it makes me feel connected to people going through similar situations. Sometimes it even opens other people up to talking about common struggles with #chronicillness, like #sex, wanting to have kids, or just wanting to live better. - I’m very comfortable feeling vulnerable, but I’m not comfortable feeling physically weak and fragile. I guess you could argue that feeling weak is a form of vulnerability; but if it is, I am not good at it. I hate the fragility of my body and I definitely hate feeling weak physically, which often leads to feeling weak mentally. Unlike feeling weak, making myself vulnerable is a choice — a choice some people forgo and instead fall back on reticence, stoking their inner turmoil in the process. To me, weakness feels like less of a choice, though, and perhaps that’s why I hate these post-exertion crashes so much — I have no control over how my body recovers; I just have to rest and wait for my body to do it’s thing. As much as I hate it, though, it’s a good reminder that we’re all at the mercy of our bodies. #invisibleillness #mecfs #lymedisease

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