it’s midnight here and there are coyotes calling to each other outside in the fields behind where i live. i checked my livejournal for the first time in a while yesterday, and going back through entries was like a haunting mess of the past year, except i gave up on updating in august so it’s really only about half the year. you want a little taste of what being severely chronically ill is like? this is what i can give you.
august 12 2012 “things have been really rough lately for a lot of reasons and i’m having a bit of a shitty time of it both physically and emotionally”
july 15 2012 “i’ve had multiple dreams about escape routes from the house if someone broke in, and also dreams about people breaking in and being unable to defend myself or escape.”
july 14 2012 “in other real quick news: pretty sick, not up to too much, sort of out of it at the moment, tired.”
may 30 2012 “tired and sick and having some nasty migraines, nasty asthma, nasty allergies, nasty PTSD, etc etc, nasty sick, which is why i haven’t really been around. be back ‘round some day :/ “
may 13 2012 “been up the entire night with a migraine and then an asthma attack; still have to make it to the doc’s this afternoon before four because i almost definitely have bronchitis again and need another ‘round of antibiotics.”
may 8 2012 “so, i’ve been having a bad time of things. things aren’t getting better, i’ve been so very extremely sick for a long, long time now, and i haven’t been able to live enough to actually be fulfilled or sustained in any significant sort of way — i mean, shit, you guys. i can’t leave my house, i can’t maintain proper friendships (…seriously idek why i still have you guys), i can’t even write or do photography. look, i haven’t had any sort of improvement in more than six months. maybe more than a year, i can’t keep track of time anymore.”
april 19 2012 “and i was hit by this moment of: i’m nineteen and my mom’s worried about leaving me alone at a library for two hours. so i cried in my room for a little bit, then got dressed and packed a backpack (pain meds! food! laptop!) and had her drop me off at the library anyway. i’ve been too exhausted lately to get like, all excited about going (and seriously, sort of deflated by the whole circumstances. like. yay, i get to go the library for a couple hours and make sure i sit down and carefully flex my feet the entire time so that i’ll survive until someone can pick me up! and that’ll be my single outing for the next couple of weeks!)”
april 12 2012 “i had a scary day a couple days ago, the kind of day that i end up in a bit of shock after, and not really able to remember clearly — whether from the pain and symptoms of the illnesses themselves or from the lack of being able to cope, i’m not really sure. i have no sense of time, right now, i’m not sure if i’ve been having bad days for a week or a month.”
april 10 2012 “constant migraine (& high fever) since about ten last night, has me almost completely out of commission (usually i can still sort of manage the comp at super low light because the distraction is larger than the pain it adds.) also had me screaming at the pigeons outside to shut the fuck up because i couldn’t handle the noise, which would be funny in any other situation, but right now… my pain tolerance is pretty damn high after the past four years, and i’m having trouble handling this one.”
april 4 2012 “my body aches, has been aching, for four days now in a particularly painful way, like my skin has stretched too thin and i have no padding left. every time i sit down or lean my back against something i’m sore after, and my knees and shoulders and hips and back and wrists and everything hurt. there’s nerve pain in my shoulder and all the way from my hip to my ankle in one leg, plus some down my spine — and my muscles are all stiff and heavy like i ran miles with no stretching.
man, i’ve survived everything these illnesses throw at me every single fucking day but there’s always something new.”
march 28 2012 “nasty fever, excruciating headache all day. shitload of nausea, exhausted down into my bones. i don’t think my heart rate went below 105 bpm all day yesterday, the fact i was in bed/on the couch almost the entire day apparently irrelevant. too many other symptoms to list. excuse me while my brain cooks. very frustrated.”
march 20 2012 “have bronchitis for second time in as many months. […] came home, sore all over (…i’ve been feeling like i worked out too hard for days now. EVEN MY AB MUSCLES ARE SORE. I DON’T UNDERSTAND, I HAVEN’T BEEN DOING ANYTHING THAT WOULD MAKE MY ABS HURT), endometriosis suddenly flared up with endo!cramps and sharp pains. been feeling miserable and a bit down and blah, feel a bit more sad and blah now.”
march 16 2012 “been really badly exhausted and in pain and nauseous and feverish and miserable the past couple of days, which is why i dropped off the face of the earth again. and i just can’t seem to shake all these infections.”
february 25 2012 “i might still be completely out of commission for a bit, my nausea/not-so-mild stomach pains have been getting increasingly worse over the past few days (fever breaks -> nausea & stomach pain get worse, this is how my life goes)”
february 23 2012 “I haven’t had any actual proper conversations with anyone other than my family in weeks. I’m exhausted. And terrified. I’ve had a bad fever for the past three days, and I spent seven hours straight the night before this lying in bed in the dark and trying to sleep, and couldn’t, despite being completely fucking exhausted and tired. And once I get over this fucking flu, I’ll just end up with another one within a week or two.”
february 13 2012 “So you know how I’m always in survival mode? Well, I’m in ultra-survival mode right now. Like heavy duty boot camp, ‘cept it’s all in my body and there’s no one to share the load with.”
february 8 2012 “so this was my cocktail yesterday:
high fever and chills + migraine + back pain + leg pain + generalized muscle and nerve pain + sore & painful eyes + two bloody noses + pounding heart & tachycardia + sore throat + light sensitivity & noise sensitivity & smell sensitivity & sensory overload making everything hurt + strange rashes + muscle weakness + nausea + dizziness + pre-syncope + bone-aching exhaustion/fatigue + tremors + concentration problems + haziness & fogginess + IBS + chest pain + chronic candidiasis + endometriosis cramps & hormone imbalances + blurry vision + asthma + catching every damn virus/parasite in the nearby vicinity (aka, v. compromised immune system) + insomnia + physical anxiety + everything else that’s too long to list (…and changes by the minute, any symptom that leaves for any amount of time gets replaced by one to three different symptoms - pretty much any symptom you can think of, i’ve had it at some point)
that sums up to pretty much just: no tolerance for bullshit.
….or a “normal” illness day for me. just woke up, have a really nasty pressure headache right now as well, do not want to deal with life. need to get out of bed and get food, will do it as soon as it feels sort of manageable. blah.”
february 6 2012 “i feel like shit. total, exhausted, miserable shit, and have for quite a while now. (and have had really, really painful cramping that’s either uh, parasites trying to eat my insides or endometriosis, i’m not quite sure. either way, it’s. not pleasant) NO PATIENCE OR ENERGY FOR ANYTHING, which is why i’ve been a bit M.I.A.”
january 28 2012 “my sis is here and i’m exhausted, had a nasty can’t think at all headache all day yesterday and have been barely staving off a migraine all day today. still have the flu. am alternating between nausea and pre-syncope. still haven’t gotten properly in touch with any of you who’ve messaged or commented me;; i’ve been avoiding it because i’m coasting on superficial reality right now, and i need to keep this up until i’m over the worst of this flu and have some energy to spare for emotions, again.”
january 24 2012 “so i’ve basically been in that place of “well, i don’t know if i’m going to survive this one” for ….uh. since some time in december, i suppose. it’s not uncommon to have multiple times a day where i’m going “fuck, i don’t know if i can do this anymore, i don’t know if i can survive this” due to the pain/isolation/exhaustion/boredom/horror/trauma, but it’s been more of a constant state recently, like a daily game of russian roulette and i just keep getting lucky. and i know exactly what happens if i give up.”
january 21 2012 “so, after a day or two of decent-ish days where i only had one mild migraine and the usual headaches + everything else that takes too long to list off, and where my mood had improved SUBSTANTIALLY after getting off a supplement that fucked with my body/hormones (adrenaline and endorphin in particular) real bad, i currently have one of those migraines where it’s bad enough that i’ve literally been shaking for about, uh, six hours now. (typing is weird lmfao) nausea + fever and chills + head in a pressure cooker pain + near-fainting tunnel vision and distorted sound, and then all the usual pain and fatigue and bullshit, plus a sore throat from another cold i am possibly getting.”
january 12 2012 “went to urgent care a couple of days ago, doctor gave me a definite answer on the fact that, yes, i have had bronchitis for more than a month (ironically i’m so sick on a normal basis that if i didn’t know i have a tendency towards bronchitis, i wouldn’t have even thought to get it checked out, ‘cause i don’t really notice much of a difference from the normal level of shit, other than a little more coughing up of gross shit than usual), and put me on some antibiotics for it. i spent most of the visit trying not to touch anything and not-so-paranoidly washing my hands (since i actually do pick up viruses pretty much every damn time i leave the house, and a lot of the time even when i don’t, and a place full of people coming in with viruses is NOT A FUN TIME FOR ME.)”
january 2 2012 “so it’s not really a resolution. and if being sick has forced anything on me, it’s the inability to set and reach goals. they’re all on pause, right now. my health is so poor right now that even the little ones, like, “i want to do more photography” or “i want to to write more” could end up being extremely painful by the fact that setting that goal — and then being kept from being able to achieve it — really sucks. and my big, big dreams, they’re so far away from me right now i don’t even really want to think about them. someday i’ll have my GED, and someday i’ll go to college, and someday i’ll have a life, but i have no idea when that will be.”