Take It With A Grain Of Salt

I just read a Mayo Clinic brochure. And it made me feel awful about myself. It told me that I needed to exercise 60 minutes a day even when I feel terrible, that I can't get a disabled pass because autonomic dysfunction in teenagers is not a disability but it certainly is in adults. Add as much salt as I can tolerate to everything. That I can only stay home from school if I have an injury or am contagiously sick. Which just makes me feel bad, because if you can't do any of those things, then it will make you feel awful about yourself. To be clear, while exercise improves POTS for some people, it is not a cure.  If someone tells me all of the things that I can do, I will almost always disagree- they always seem to downplay my symptoms. Why? I'm 14.

Since the weather has gotten warmer and the sicker I've gotten, the more complicated my relationship with heat has become. It started with purple feet after showering. I sat on a bin in the shower, no big deal. Then, when the weather got warmer, I started experiencing heightened symptoms. Right now, in fact, I am lying flat in my back in my room with all of the lights off, the blinds closed, with the fan on high drinking icewater. But hey, that's heat intolerance for you.

Sorry for not posting yesterday, I had an episode of pretty severe nausea in the evening. This post is about invisible illness. If, say, I wasn't using my wheelchair (which I often can't) people will assume that I'm not sick, a perfectly fine teenage terrorist-looking kid going to, I don't know, Target with her mom. They can't see my heart rate spike- my dizziness, fatigue, or faintness. However, this effects me most with doctors. My first GP said exactly this when my mother and I asked her for a note for my wheelchair at school at the height of my fainting; "Ha,ha,ha,ha! You don't need a wheelchair!" Fat chance, when I was fainting four times a day. She later told me that I had a "conversion reaction" due to nonexistent "depression". Some doctors simply don't get the concept of empathy for their patients- either that, or they're just ageists. I went to the mall today and ran over my mother's foot-which

A few months ago, (before I got ill),a good friend of mine, Ivana Eda-Weiner, took an extended trip to Sudan to care for her aunt. After a not-as-lively-as-we-thought community pride dance, we said our final farewells. Three days later, we had our first video call after her departure, along with our friend, Weinera Shucker. Weinera and I went to school together and sat together at lunch. Along with our friends, Richard Butt, the master of a local property, George Bation, and Hue Mongous, we started a group chat on skype. It died after a while, but Weinera and I continued weekly calls with Ivana. However, things became more complicated later in the year. After I could no longer attend school, our calls between Ivana, Weinera and I became fewer and further between. I called both of them individually, and they called each other, but not frequently. However, we hope to rekindle our friendship before Ivana's return. These are some pictures of Dick, Weinera, Ivana and I at the Pride da