May 31
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It’s funny how easy I am to feel guilty about something - whether it be big or small in comparison. Even if I don’t feel about it now, later it will just come back to bite me, and I don’t know how to stop it.
can't draw anymore until august, so post what i have rn
TW: sh, maybe really too much sh(sorry)
Externally: I’m fine guys ^^
Internally: ... Do you guys hate me?
to vent a bit more about the sleep specialist and how badly it really went, now that i'm less intensely upset about it and more just sort of. quietly weepy.
the first sleep doctor i had had heard my symptoms and had presented the possibility of me having type 2 narcolepsy.
type 1 (N1) is where you have cataplexy (sudden muscle weakness that can cause collapse) ((...that word is being redlined even though it's literally a word)) as a symptom which can cause the more "cliche" vision of narcolepsy where someone just randomly slumps over and falls asleep
type 2 (N2) is without that, but is still marked by an irresistible urge to sleep and other symptoms like wake-sleep hallucinations, fragmented sleep, severe sleep inertia, fatigue and chronic sleep paralysis, ect ect ect all stuff i do deal with. my fatigue is so severe i thought maybe i had chronic fatigue syndrome. and at least once i have ended up so exhausted and so stuck in a constant loop of falling asleep that i had to go to urgent care because i ended up with worrying symptoms from being dehydrated because i was barely able to move for days in a row and wasn't getting enough water with how aggressive the urge to sleep can get. (it's been recommended i try to keep pedialyte or other electrolyte drinks in my room so i can have them in reach for moments like this, so thankfully this hasn't come up more than twice).
i've fallen asleep in cars, at desks, in waiting rooms, sitting at an easel, immediately after working out or in the middle of working out (would have to immediately lie down out of the blue), immediately after getting Out of a car (going to a friend's house and instantly needing to crash on their couch for 20-30 minutes), in the middle of playing online games and have even fallen asleep on phone calls and during voice chats. my symptoms aren't always cranked to 100%, but that's what i can do when they're at their worst or when they're flaring up notably. usually i do get a moment to lie down but that's All i get a moment to do. my energy crashes so fast i don't even have energy left to warn people sometimes, and i just use the last of my energy to at least get somewhere more comfortable. sometimes i Can force myself to stay awake, but it comes with way more intense brain fog and cognitive difficulties and i end up a zombie until i can finally get a bit of sleep in, and the entire time i can only really think About how bad i need to sleep.
when i talked to my first doctor about my symptoms, she pointed out things i didn't even realize were narcolepsy symptoms (i didn't know much About narcolepsy at the time) in what i was describing, and had marked my case as urgent because of how aggressive my symptoms can be. (i currently can't drive or work because i cannot reliably stay awake for even 8 hours at a time To work, and i fall asleep in cars Very frequently and easily)
there Is also a diagnosis called Idiopathic Hypersomnia (IH), which is a bit different from N2. my symptoms Do sometimes ride the line between N2 and IH. but my symptoms are absolutely past the point of just regular sleepiness, and have started to leave me with noticeable cognitive impairments (i often have brain fog, i have had increasing memory problems, i can't retain information, these are also symptoms of narcolepsy and sometimes IH)
to test for narcolepsy you have to do something called an mslt--this is a test where you stay in a clinic for a day and are given a 20 minute window every 2 hours to take a nap. you cannot fall asleep during the 2 hour wait, and if you don't fall asleep in the nap windows you will fail the test. this test Does have scrutiny within some research as for how valid it really is in testing N2. when i took the test, i had to fight to stay awake during the 2 hours (i had thought i'd be able to read or something while waiting but instead spent a lot of time rocking in my seat trying to keep myself awake), then would get so anxious during the 20 minute window i'd be wired just awake enough to last 20 minutes (though would Nearly fall asleep at the Very End every single time before i had to get back up again). the entire day i struggled with the urge to fall asleep until i was told to Sleep On Command (plus the wires had me incredibly overstimulated, and the bed was agitating a lot of my back issues so i was in pain which also can flip my sleep habits), and so i failed. i figured i would, because my symptoms had been in a bit of an uptick and had been less severe, which happens. it's an up and down thing, some months are worse and i can barely function and some are manageable.
it's worth mentioning that insomnia can be comorbid with narcolepsy, and sometimes anxiety flips my sleep into insomnia-type patterns (trouble falling asleep + being able to get by on maybe 4 hours of sleep in a night)
anyway.
the doctor i'd worked with first ended up moving away and i had to have a new doctor assigned to my case.
this doctor's only understanding of narcolepsy was N1. he told me that because i'm not randomly falling over (ie cataplexy, which is Not present in N2) i don't have narcolepsy. like, because i don't fall over like a startled fainting goat, i got nothing. HE asked ME why i have fragmented sleep (this is a major symptom of narcolepsy). he told me though i failed the mslt, the regular sleep portion of the sleep study showed i have around 53% sleep efficiency (not good. i am basically getting an F in sleep.) told me i'm just Sleepy. it just happens, people are sleepy sometimes. mind you this "Just Sleepiness" has been outright ruining my life with how severe and invasive it can get. when i tried bringing up the severity of my symptoms at their worst, he waved me off.
then asked me what i even wanted to do from there and i told him i have no idea what my options even Are, he suggested maybe i just need some Lifestyle Changes (i cannot stress enough that i have done everything in my power to try and improve my quality of sleep, though some stuff is out of my control like i often fall asleep with my light on because i end up so tired i feel like i can barely move and i Can't get up to turn it off even if i know i should) ((though honestly this could've been code for You're Fat So Lose Weight Maybe because that's sometimes what Lifestyle Changes means from doctors. i don't have sleep apnea showing in any of my sleep testing so like. it's not a factor imo. i'm not just somehow too fat to sleep good.)) when i told him i have made all lifestyle changes i can possibly think of within my power to try to improve my sleep, he then said that he Could give me a stimulant. talked about how college kids are familiar with it because they "use" (abuse) it to focus. made that weird fucking comment about how i Must know all about that, because I Look Like I--, and when i told him i Did Not Do That in college he just laughed and said "don't be shy now."
so. Cool. glad I Look Like someone who abuses/d stimulants. apparently.
when i asked if there was any other testing i could do, and asked about the possibility of IH (because of how he obviously didn't even know N2 exists???? i'm still. vexed at his only view of narcolepsy being N1. as a specialist for sleep disorders. i should've maybe argued his perspective of narcolepsy but i was exhausted and i can never stand up for myself because i don't really get a mental script ready for What If My Sleep Doctor Doesn't Seem to Know The Thing I'm Being Tested For Even Exists. egg on my face for not, i guess) he told me he's Technically treating me for IH (i did get a prescription) but That's Just Fancy Talk for Being Sleepy (it's not.) so he wasn't going to make a diagnosis.
and a diagnosis is what i needed to try to keep my insurance come this november, when all the Big Bill bullshit our administration passed cuts millions of people from government assisted health insurance programs.
so now i have a prescription i'm scared to take, because i won't have insurance in the next few months. if i have any sort of long term negative side effect from it, i won't be able to get any treatment. or if i Can't Access the medication abruptly (it's a controlled substance and i Won't Have Insurance for further approvals if/when my script ends) i'll have to deal with that.
the medication i was given is used to treat narcolepsy (and sleep apnea, but i don't have that). and i'm being given it while refused a proper diagnosis. so he Must be recognizing that my symptoms described are in line with Something, but is refusing to put anything on record that might help me. i'm not even sure if my insurance will approve it given i wasn't diagnosed with anything. his mentality was Hey If It Works Then Good But I'm Not Diagnosing Shit. Good Luck.
the medication being given sounds like a boon but it feels more like a curse. medication won't help me keep my insurance, and it's not at all grounds to help me with trying to register for disability. even if it Does work, i still wouldn't risk employment because i don't know when i'll have it taken away again Once I'm Uninsured.
the whole situation is a complicated mess, and i'm just left once again feeling like i'm crazy for trying to get help with any of this at all. or like i'm somehow just being a baby about what is apparently Regular Sleepiness. even though i know what i'm going through isn't normal and i've had friends around me assure that because it's not something Any of them deal with when Just Sleepy, i'm still dismissing myself and doubting everything i've been learning over the past year or so. i'm doubting the doctor that was Good.
i've cried about it already, and i do just want to cry about it again, even though i feel like a [redacted] for doing so. feel like i should just suck it up because Nothing's Wrong, According to This One Doctor.
i'm still just very tired of all of this. every time i have to deal with a doctor like this i doubt everything i know about myself and my own body and i just beat myself into the ground for ever even trying to reach for help, and it makes me never want to ask Anyone for help again.
and then i think about how my sleep cycling is so fucked that it's in line with a higher and earlier dementia risk, and i think about how much my memory has been failing and how genuinely stupid i've felt compared to my peers and compared to how i used to be the more and more this has chipped away at my brain the more i fail to have any sort of restful or restorative sleep and i just want to cry again.
there's a lot of trauma in feeling your body and brain both slowly start to fail, in living every day in pain and exhausted, and having people tell you you're fine every time you try to get help because yet another test came back clear.
I hate him. I hate him. I hate him. I hate him. I hate him. I hate him. I hate him. I hate him. I hate him. I hate him. I hate him i hate him i hate him i hate him
Why i put 'not Volo stand friendly blog on my bio?'
Simple this fandom kinda asshole and can't handle other opinion on Volo so i better put warning before people start getting too aggressive about my version of Volo and cuz i one of that victim getting bad name for no reason and getting hate + avoid just for having my own opinion (i know what you all doing even i don't see it.)
Stop being asshole. You internet footstep is permanent.
Gotta lock in and pretend like they aren’t absolutely ripping my hearts to shreds rn cuz that’s cringe