this post was submitted on 17 Jan 2025
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I have the suicide disease. The worse, TN2 version. That is not a sly term for mental illness, it's a nerve disorder that has pain so great that people kill themselves rather than face yet another day of it. I am rarely below 3 on the 1-10 pain scale (at 4 right now) and I've reached 10 more times than I can count. This is with medication keeping it at the level where I can function.
I am such a bad judge of pain that the trauma from my not realizing for half a week that I had kidney stones and not taking any painkillers and then being stuck first in a clinic and then the ER for 14 hours writing in agony until they finally decided I did, in fact, have kidney stones and gave me some fentanyl, caused severe trauma and gave me an eating disorder called ARFID, unrelated to body image issues, and I have not eaten solid food in a year and a half.
Explains a lot, doesn't it?
https://arizonapain.com/trigeminal-neuralgia-suicide-disease/
https://en.wikipedia.org/wiki/Avoidant/restrictive_food_intake_disorder
Hey, you asked.
P.S. If you try to give me medical advice over the internet, I may just block you. I am so fucking sick of that. And no, "I know you said you didn't want medical advice, but..." does not count as a way around that. And I am fucking sick of having to say that and having people ignore it too.
Sorry to read that. But in some way I am almost relieved that you seem to finally know what caused your insanely severe case of ARFID. I remember when you were posting about your time at the Mayo clinic and the awful mismanagement there and was very sad and disappointed (not by you) that you were bombarded with enough armchair diagnostics to stop updating about your case.
When did you get diagnosed with TN2? And how long was the gap between the kidney stones and your last bite, if I may ask?
Thanks. I don’t really feel relieved by it, mainly because it’s kind of irrelevant to the future, but it is what makes the most sense and it’s better than having no idea.
I think about 10 years ago. Maybe 11 now. It might be genetic because my dad had TN1. But he got it in his 70s. It usually manifests itself at that age. I was in my late 30s.
That’s kind of complicated. A few weeks after it happened (January 2023) I started dry heaving every morning. That has been almost daily for me. Occasionally more than once. Then that March, I had this issue for about six weeks and then I was fine again until August. And other than at the Mayo Clinic when they totally numbed my mouth with a lidocaine-based compound, when I was able to manage a couple of bites of egg salad, that was the last time I had truly solid food. I’m also the smelling equivalent of a supertaster. I can smell cleaning fluid inside stores from when the custodians mopped the day before.
Working with a psychiatrist and doing RO DBT therapy, I am at a place where I can eat pretty much anything if I don’t have to chew or use any utensils and I have conditioned myself to just deal with the smells even if they are awful. I’m even able to cook for my kid now.
So I am in a much better place than I was even six months ago.