On April 11th (the night before my 25th birthday), I was experiencing my visual distortions at full blast. Previously, I would never have wanted to be around other people (much less film myself) while I'm experiencing this, so this was a big deal for me to post this.
I think it's important for people who experience similar symptoms to not hide the fact that you're struggling with symptoms of your illness out of the fear of being judged. Those who truly care about you will be sympathetic and do everything they can to help make you more comfortable while experiencing these symptoms. I know that when I'm in this state of mind, I'm easily startled, and noise at high volume gives me a lot of stress. It's like my senses are overstimulated. I can't have the TV on, I can't be in loud rooms, and sometimes I even need to ask people to lower their voice, even if they're speaking at a normal level. My sight is affected as well, which is what I describe in this video. Every object in my sight just looked what I called "busy," from the beads of the carpet to the grain of the door. It's overwhelming when I'm in this state of mind, and even when I turn off the lights, my vision is covered in grainy, colorful dots that make me feel like I'm spinning or falling. There's really nothing anyone can help me with in that department, but they can help me with the noise.
To cope, sometimes I take a hot bath with lavender epsom salts (lavender is a calming essential oil) and then get dressed into something comfortable and warm like pajamas and lie in my bed with dim lights to mitigate the grainy vision that comes with darkness (I use my fairy lights, which you can see in this video, because they fill me with warm happiness). And then I fall asleep and hope that I feel better the next day. Sometimes I do. Sometimes I don't. But I know that it won't be like this forever. I just have to wait it out.