Jon Rodis, an activist with Marfan Syndrome, presented at the EDS conference in Baltimore about the challenges of getting on disability. He told a story — he went to meet with the disability office. For those who don’t know, the body type associated with Marfan’s, or marfanoid habitus, is very tall. Perhaps the most famous case of marfanoid habitus was Abraham Lincoln. Anyway, the man took one look at Jon and asked why a big, strong, mobile guy like him would need assistance. Jon answered by asking, “have you ever had a really bad cold, with aches and chills and no energy? That’s how I feel 2-3 days a week. Now, have you ever had the flu? Because that’s how I feel the other 4-5 days each week.” The man of course could understand how difficult it must be to get to work under those conditions.
I keep thinking back to that story. I have spent the last four days with flu-like symptoms: terrible headache, chills, aches, no energy, tender pain throughout my entire body, periodic vertigo, nausea, and diarrhea. I’ve been in too much pain to sleep well, and wake up throughout the night with vivid dreams and night sweats. Yesterday I felt a little better and decided to go for a walk. The result? Cognitive impairment that made it difficult to drive home, and such bad symptoms that I spent the entire rest of the day on the couch, unable to get up to even feed myself.
But I don’t have the flu. I have a flare of mast cell reactions, probably because I spent too many spoons this week. Imagine, for a moment, that every time you went the extra mile for a friend or put in some extra time at work, you got the flu for several days. Now imagine that on top of these sudden flu symptoms that happened whenever you weren’t careful, you also had random bouts of food poisoning. Have you ever had food poisoning before? Headache, your guts exploding in both directions, maybe followed by hours of nausea and hot flashes. And, of course, no energy. Well, I don’t know if it’s part of my mast cell reactions, intestinal paresis, dysautonomia, or some combination, but I have food poisoning-like symptoms about every month or so. I never know when it’s going to hit — out on a walk in the woods with friends, in the middle of a grocery store, at work…
And then there’s the daily reflux, nausea, fatigue, post-nasal drip, asthma, palpitations, tachycardia, itching, dryness, lightheadedness, headaches, tingling/numbness, spine burning, food allergies, and constant pain.
Looming over all of this is the scary stuff — spinal instability, infertility, deconditioning, spontaneous craniospinal fluid leaks, pregnancy complications, etc.
I sometimes get days off. Well, I can’t remember the last time I had a day truly off, with no symptoms at all, but I occasionally have days with just a few of the minor symptoms. It feels like an absolute vacation.
So as much as I would ideally like to get back to work, I feel eternally grateful that I am not currently employed more than a few hours a week. I quite honestly have no idea how I made it to work on days like today. I can’t imagine I was my most friendly or coherent. I’m just so glad that I have the flexibility to curl up on the couch for three days straight, closing my eyes against the pain, eating toast and sipping tea. My body sighs appreciatively and I know, deep down, that I need this.