Revised About Me - Get to Know Me

My name is Skyler, Skye for short. I am nonbinary and prefer they/them pronouns, but don't take offense to she/her. I am chronically ill and autistic. I love to sing, and spend most of my time either playing video games, modding Oblivion, or watching way too much Youtube. I am very optimistic, which makes a massive difference in how I navigate the world.

I have a few different illnesses. I have Ehlers Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome. POTS and Mast Cell are very frequently seen in Ehlers Danlos patients.

EDS causes my body to not produce collagen properly, and collagen is in every part of your body. It causes my joints to be so loose and floppy that they often partially dislocate. I haven't had any full dislocations yet, but many many EDS patients have dislocations all the time. I consider my self lucky that mine isn't that severe, at least right now. EDS gets worse as you get older so who knows what will happen in the future. :(

POTS is a disorder where your body can't properly regulate your blood flow, so when you stand up blood pools in your legs and feet. This causes your heart to beat way to fast in an attempt to get the blood flowing properly. Unfortunately my heart doesn't realize that that is a very bad thing to do, so I get dizzy when I stand up. Luckily I haven't fainted yet. Many POTS patients faint a lot. Again, I'm lucky not to have it as bad as some people. Taking a shower is hard because POTS is massively triggered by heat, so I have to be extra careful not to fall, and use a shower chair to shower safely. Even with the chair I have fallen a few times when standing up to get out of the shower. Summer is awful for people with POTS because of the heat.

Mast Cell Activation Syndrome is a disorder where the cells that cause allergic reactions react when they shouldn't. Reactions can be triggered by anything. My biggest triggers are perfume, smoke, and most scented products like deodorant or hair products. My mom goes out on the front porch to use hairspray, for which I am very grateful. I wear a cloth filtration mask when I leave the house to help keep me from reacting. It has really been a game changer. It helps so much, but I do still have at least one reaction most days. I never leave the house without my Epi-pen, but thankfully I haven't needed it yet, although there have been a few close calls.

As I mentioned, I am also Autistic, so I don't do well with loud noises or people touching me. I actually like being Autistic, though. It comes with both good things and bad. Some good things are my ability to memorize song lyrics and movie lines really easily, my major love for modding Oblivion and the ability to focus on modding and block out pretty much every thing else. Autistic people call that a special interest. Mine is the Elder Scrolls universe in general. I do flap my hands when I am stressed or excited (two different ways of flapping for two different emotions), and I rock a lot. I'm not embarrassed by those things, which is a majorly good thing, because they really help calm me down and it is very hard for me to go out in public without some kind of soothing repetitive motion. My mom and I actually think that my happy flapping is really cute and it makes her smile whenever I'm excited and start bouncing and flapping.

I hope this has helped you get to know me a bit, and that you'll stick around for my mods and ramblings.