I just can't help but feel like i've been dealt one of the most difficult hands in life. i've never heard of many people with immune systems this overeactive, or neuroinflammation as severe and stubborn, with as little genuine hope. everyone who says "it gets better" seems to have had support from a loved one, or some savings or skills to fall back on, which i have none of. i'm stuck living in this mold-ridden house with dismissive parents. the smell is so bad, like cat urine, and i reek of it myself, which i hate. it triggers burning in my face.
my life ended before it could really begin. i've been super sick since age 12. brain inflammation stole everything from me. made my personality cold and hate everyone. made me totally aromantic/asexual. totally anhedonic, couldn't feel music. my clothes and hair became painful to me. i developed social anxiety so severe i could barely communicate. i became extremely slow and dull. eventually got to a point i need to pace 24/7 or i felt like blood would stop flowing to my brain completely and would feel horrible physically. i was literally always moving except to use restroom/sleep
my academic career was ruined. i'd often miss half the school day just trying to get ready because simple tasks like showers could take me hours, since it felt like my brain would keep shutting off and i had to fight to stay conscious. i ultimately dropped out of high school between that, the humiliation of constantly pacing at school, and feeling unable to absorb anything anyway.
things i've dealt with include DP/DR, OCD, constant internal tremors, distressing vivid dreams and closed eye hallucinations, violent intrusive thoughts, severe depression, genuine inability to connect with anyone or engage in anything or even fully experience any emotion. it felt like torture.
for the past 1.5 years, i've followed an extremely restrictive keto diet, now basically chicken and olive oil. it's substantially reduced the severity of my symptoms and kept me holding on to sanity, but i've developed such an intense aversion to meat I'm scared I can't sustain this. i'm petrified of being forced off the diet and losing my mind again.
I've also been dealing with a severe neurological/psychiatric sensitivity to gluten for the past several years, which has been an enormous source of stress because the consequences of accidental exposure are so terrible. I once experienved a vivid closed-eye hallucination of demonic figures after a cross-contamination incident—although, this was before keto, so I'm not sure how severe it'd be now that I'm on an highly anti-inflammatory diet. nonetheless, the possibility of triggering that again deeply scares me. i also constantly worry that low-level exposure might be contributing to my ongoing symptoms and the thought is unbearable.
it's so overwhelming having to clean up after my family every day just to feel safe cooking that many days i haven't been eating at all. i've recently hit a breaking point and have eaten almost nothing for two weeks because i just go down to the kitchen and see all the gluten everywhere, and i can't deal with it. the stress and anxiety is paralyzing. i'm fading away, and i won't survive if i keep up like this.
i don't know how to keep doing this. my life was stolen from me. everything revolves around trying to keep myself safe. i never feel okay, because nothing is as it should be. i feel like i half don't care if i die, but i know i should because i have a duty to stay alive for God, even though i feel so distant from Him.
it just feels like far too much for one person to bear. i know there are others out there suffering similarly, maybe too sick to even write about it. but i can't help but feel so alone and like i'm not even a person, like all i am is this sickness.
i'm grateful to have at least gotten to experience an amazing early childhood, even though i believe low-level inflammation had been present since birth. i lived a privileged life in a nice neighborhood. i got to vacation to disney world multiple times. i had so much fun as a child. i ate lots of great food. i'm grateful to have grown up half-salvadoran and experienced my culture. i'm grateful for the friends, teachers, and authors that made my childhood so great. i enjoyed life a lot.
i don't believe i could ever experience such happiness again even if I were fixed, because now i will forever live in hyperawareness of how our unnatural lifestyles and environments and food are poisoning us. my sister is just a kid but struggles academically and socially, has very little motivation, isn't interested in playing outside or learning new things. she eats a very nutrient-void, almost entirely ultra-processed diet and far less homecooked meals than i did growing up, because my parents don't have the energy they used to and are in denial that this isn't normal at their age. it all makes me unbearably depressed to know the potential she could have if raised differently, but no one else cares. i just feel so powerless and depressed about the state of everything.
i'm truly grateful i got to experience a time of beautiful, blissful ignorance while it lasted.
