ok so this is a rant that’s been building in my body and is needing to come forward.
trigger warning: nothing really unless you are another person w/ a disability or chronic illness because this is not happy or optimistic and i know reading other people being down on being disabled can be triggering if you are in the same situation so. forewarned.
i was diagnosed w/ myalgic encephalomyelitis when i was 14 years old. i am 29. i have had this fucking illness for 15 years. arguably my whole life. because i have literally never experienced what it is like to be healthy.
so in my adolescence i went through EVERY TEST CONCEIVABLE and was in and out of hospitals and i was going thru other shit emotionally and i did not take care of myself. i ate horrible junk food and fast food and became an alcoholic by the time i hit 17, drinking every single day upon waking just to cope w/ my mental and physical reality.
ok so then i hit my late teens and like clean up my act gradually. i am still in and out of fucking hospitals. i am never well. i am trying now tho, at least, where as before i just didn’t give a fuck.
then i am in my early twenties and shit gets earnest. i quit drinking. i give up gluten, sugar, and go vegan. i go on all the right herbal and natural medicines. i try ever option for treating my myalgic encephalomyelitis that i know of. i get regular amounts of sleep.
now in my late 20’s, i have literally dedicated the last 3+ years of my life to being healthy. it is my number one goal. both physically and mentally.
i do all the right things. everything. sleep, food, exercise, everything is fucking optimal. i have been giving it my all for the last 3+ fucking years.
and i am still just as fucking sick as when i didn’t do any of it.
it doesn’t matter what i eat. my stomach hurts after every meal. it doesn’t matter what the food is. i have diarrhea just about everyday. my stomach rarely doesn’t hurt.
my costochondritis flares up with limited physical activity.
i live with a perpetual flux of yeast infections and urinary tract infections despite my current celibacy. i get kidney infections yearly.
i’m hospitalized several times a fucking year by doctors w/ concerned facial expressions who ask me why i haven’t gone to the emergency room yet. would you like to know why? because no one there ever fucking helps me. they do all the tests, all the time. i am drained of blood, poked and prodded on the regular. the shit i have doesn’t have a cure.
i am exhausted all the time. every muscle in my body hurts, no matter what. somedays it is all i can do to leave my bed just to use the washroom.
i get hives and other skin infections at the drop of a hat. i am allergic to a long list of everything.
i basically live with a flu and a cold 24/7. the phlegm and mucus, the sore throat, the coughing, the sneezing. seriously that is not a thing that stops for me. it decreases or increases in severity but it never goes away.
and ok this is just the shit i am not even thinking about like there is a lot more if i sat down and reminisced about all the things i’ve been diagnosed w/ over the years (myalgic encephalomyelitis is a syndrome and works w/ a grouping of diagnoses) and reasons i’ve been in the hospital.
there is blood in my bowel movements and in my puke.
doctors know all of this. it’s not like i have a thing that no one knows what it is. i have a thing that’s been diagnosed that no one takes fucking seriously or knows how to treat it.
and see this isn’t just it, this isn’t what i’m pissed about, what i’m pissed about is: i’m literally trying as hard as i possibly can to be healthy. i cannot try any harder than this.
and i’m just as fucking sick as i was when i was a drunk who lived on junk food and caffeine.
i’m not giving up or anything, i’m just looking at all this effort and 6+ years of sobriety and i could just cry. it’s enough to make me start drinking again, to just say fuck it there is no point.
i’m not going to tho, i’m just saying.
i’m just saying that like looking at how hard i am trying everyday compared to when i was just a drunk punk who lived on caffeine and liquor and barely slept and would just not fucking care versus the current me with set wake-up and sleep times and a pristine diet and a very well-managed life in terms of what i do and routine appointments w/ doctors and trying fucking everything.
augh it’s just. it’s really hard.
and honestly the only reason why i’m not giving up is because of my mental health. i know it suffers when i’m drinking and not taking care of myself so i’m staying sober and keeping on. it’s just like, here i am, and nothing to show w/ my physical health.
and i love y’all able-bodied people but sometimes i get so jealous inside i hate you so much and i’m sorry for that. i sit back and see my friends doing what they do and living their lives and when they get sick, they get better. they can walk everyday instead of just on good days.
i don’t want to be bitter i’m just so fucking sad right now. like bone-deep sad. i’m not getting better. nothing is working. if this isn’t enough, i can’t get better because i can’t do better than this and i really don’t want to live the rest of my life this way.
ok. i just needed to vent. i am safe and sound and i am not in any danger and not going to drink or self-injure or take my life or anything and i’m saying that to be really clear because i know there are beautiful people who might read this and be concerned but hey one thing i have going for me is better mental health so at least there is that. i know how to engage in self-care.
and part of self-care right now is not being perpetually optimistic and trying everything and being grateful for all the good stuff, and instead just being fucking angry and honouring and allowing that as part of it all.
ok. thank you for reading, abled or disabled, i love you. <3