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(Explicitly Sick) ME, POTS, Mayo Clinic, and What Persephone Has To Do With It: Sarah Ramey - Part 1

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SARAH MARIE RAMEYEmail address *sarahmarieramey@gmail.comWebsite/Blog, Twitter, & Instagram Handlewww.sarahmarieramey.com @sarahmarieramey and @wolflarsenmusic for bothName *Sarah RameyWhat is your disorder? *Hoo boy. What isn't my disorder? We can limit it to ME/CFS, complex regional pain syndrome (CRPS), and postural orthostatic tachycardia syndrome (POTS). Vulvodynia, a neurogenic bowel, mast cell activation syndrome (MCAS) too. You can just say the first three if you prefer - it starts to sound like reading the alphabet.At what age did your disorder become a daily issue? *22Who were you before your illness became debilitating? *I was incredibly active. At the time I got sick I was directing the college musical, the head of the women's a cappella group, the singer in a loud rock band, and a senior in college.What would you do if you were not dealing with your disorder and/or disability? *You know, I recently read through a journal from my senior year of college - and all I wanted to become was a musician and a writer. So despite it all, I somehow managed to stay on track there. I actually think it's quite likely I would have been pulled *off* track if I had not become sick, just because making money as an artist is such a challenge - and in my case, since I was stuck at home all the time, writing and music were some of the only options. However, as so many have suggested, this is not some sort of cosmic gift or rebalancing. I would give up being a writer and a musician in the blink of an eye if I could just have my health back. And indeed, sick people shouldn't have to choose. Being sick is not like wishing on a monkey's paw and getting what you always wanted, but at terrible a cost. I reject this, and think we should be working to understand these disease so that we can return health to the these patients, *so that* they can pursue their dreams fully. That's a long-winded way of saying: I would be doing music and writing, but in a much more active, and outward way. I would tour, I would play live, I would do book fairs and publicity events, and teach, and lecture - all things that are 90% not available to me in my current state (though I can do a little, and a little is much more than nothing).What would you like people to know about your daily life? *My daily life is what a normal person would consider a hellscape - filled with extreme pain, both abdominal, spinal, and vagina, and long periods of extreme exhaustion, heart problems, and brain fog. I have an ileostomy, which means I have an external bag for my own poop, and have to empty that 6-10 times a day. The pelvic pain is constant and excruciating. But, and this is the point, this is a *major improvement*. I used to be nearly comatose all day long with severe ME/CFS, with my mother propping me up to feed me soup. The pain used to be even worse than it is now. And before we diverted my colon, I was spending about 8 hours stuck in the bathroom every single morning and early afternoon, and couldn't leave the house - ever - until about 2 or 3 pm, like a vampire. So compared to that, I feel like I am actually doing quite well! I can leave the house in the mornings, I'm not stuck on a toilet all day, and the fatigue - while very bad for a normal person - is nowhere near as bad as it gets that the severe end of the spectrum. Hellish for a Normal, Not Half Bad for me.What would make living and moving in the world easier for you? *Never having to explain that I am actually sick just because I look fine. All kinds of people with very serious illnesses look fine, and they have but to say, "I have stage 4 cancer," and the entire world knows to respond seriously. I have never, not once in my life, told anyone I have ME/CFS and had the response be "Oh no, I am so sorry to hear that." Never! That is extraordinary and devastating.Do you have any life hacks? *I batch everything - I batch meals and make 4x as much as I need so that I have food for a while. I batch work, and have chunks of time set aside for email, for most important task of the day, for social media, and for reaching out to my friends and family. When I get away from batching, especially with work, I just feel constantly overwhelmed.What kind of support do you get from family or friends? *At this point, I have a lot of friends who check in on me, and my parents are extremely supportive. It's important to note: this was not always the case. This took a lot of asking for support, explaining my condition, explaining h