Start with “prone to sudden fits of neon pink geometric-shape hallucinationsthat cause pain when you look directly at them and grow in size when they’re ignored.” Then add “your jaw tightens until you wonder if rigor mortis is setting in early” and “you want to throw up but actually throwing up makes it feel worse instead of better if it changes anything” and “light and sound make all of the above worse somehow.”
The frequency of the above is based on posture and whether you’ve stretched your rhomboids in exactly the right schedule in the past two weeks so that they take some of the tension out of your neck. If you stretch too often, they get sore and you can’t use that to help prevent the next attack. Too little, and you will hasten the next attack.
Having some kind of stress-relieving fun can help too, which means that these events are often conveniently timed for whatever is most important that you get done or least like doing or are most terrified of screwing up or some other stress-related marker. So you’re as close to peachy as you ever are when it’s time for fun and games, and lots of people think you’re making it up to get out of unpleasant tasks. Which is pretty easy, since “painful hallucinations” don’t exactly make a person leak fluid or emit word salad. They just make it so that eventually you can’t see because your entire visual field is replaced with a pulsating neon pink dimension of pain and nausea and it gets worse every time someone says something within a mile of you. So you sometimes feel a need to exaggerate symptoms like nausea that more people understand even if you could otherwise keep them under control, so they believe you’re sick at all and don’t make an issue of you taking that soul-saving nap.And in every single waking second that that’s not happening and also the ones where it is, your jaw joints and the muscles immediately above them that move your jaws are sore like you spent the past 10 hours chewing a piece of latex that is made of hand grenades, and the question is not “will it hurt today” but “will it hurt enough to be distracting today?” So you spend a lot of time seeing how many fingers wide you can stretch your mouth, to reset some of those muscle fibers and earn two or three seconds of your jaw not being on fire. And also you keep your hands cold to use as impromptu cold-packs. And sometimes you think about shaving the sides of your head so that your hand-packs work better.
And if you sleep in a weird position, you can guarantee one of those “distracting” days will start within about 60 minutes of waking up, even if you went to bed to get rid of the hallucinations. And even if it doesn’t, the disruption to your sleep cycle will make you miserable and lethargic anyway.
And the only painkillers that work are large doses of NSAIDs that make sure that every particularly bad attack is followed by a brutal stomachache. Or you could nap, which is still kind of weird to do on university lounge furniture and takes a fair bit longer.
And you know—KNOW—that you brought almost all of that on yourself by clenching your teeth a lot when you were a kid, since most of those symptoms are based on a repetitive stress injury to the jaw joint and the rest are genetic.
That’s my life with chronic pain.