i have a doctors appointment tomorrow!! i’ll have to get another booster for something, but we’re mainly going there to figure out some stuff with my blood sugar (?suspecting diabetes? hypoglycemic? hyperglycemic? not sure yet, but there’s something there) and then also to figure out and/or diagnose what’s going on with me physically (suspecting hEDS or HSD and POTS) and then see if i can get physical therapy to help with all that.
i’m so excited, but also really nervous.
i have prepared folders about hEDS and HSD, and also POTS, and have all the info that i can have at this point about it. i have written down my symptoms, the criteria i have (i do meet the criteria for hEDS pretty much, i think, but if it turns out i’m wrong about some of it, then it’s likely HSD), so hopefully it goes smoothly and we can take another step in the direction of answers and possible diagnoses!
guess who did way too much and pushed himself way too much last night for halloween/trick-or-treating and is now in a flare up and has to go to work today and be even more flared up? :D (this guy right here, ME)
sometimes i feel the people in my life don’t see me or care that much.
i’ve been constantly flared up, in a heightened state of my baseline, since August, and no one seems that worried or really realizes what that means for me.
my mom and my sibling assume that that means i can continue to do lots of things, and yes, i may flare up, but i’ll be okay in the end. they don’t realize that that flare up may last me weeks, instead of just a couple of days.
they don’t really realize that that flare up could make everything worse more permanently again.
i’m just waiting for one of these days to go by where i have a really bad flare up like i had in August, and i don’t get better, like how i didn’t get better that time.
and what’s that gonna look like for me?
i’ve only improved slightly in some ways since my flare up in August, and that’s just because i’ve adjusted to this new level of misery. i continue through, because that’s what i HAVE to do.
but it’s just infuriating because they don’t realize that i have to be more careful now. that i SHOULDN’T do these things, as much as i may want to.
at this point, i’m just teetering on the edge of not giving two fucks about my health, and doing anything and everything, and mask what happens to me.
i just feel ignored, not seen, not heard. i know they do see it somewhat, they understand somewhat, but also, not entirely.
and i think they don’t realize that i don’t wanna be like this either. if it were my choice, i’d be well 24/7. i’d go to places, i’d have fun the whole time, i’d not have to be so self-aware of my body. if i had a choice, i WOULD.
i “hold myself back” a lot, because i don’t wanna end up worse. that’s all. end of story. i’m not “holding myself back”—I’M MAKING SURE I DON’T END UP WORSE.
i’d like for them to understand that too. to realize just how easy that could be for me. one day, whether i have what i need or not (mobility aids, braces, etc.), i could still get massively flared up, and not get that much better ever again.
i just wanna be seen entirely. heard entirely.
and yes, with the timing of things, it could be the weather; but i don’t think so. i don’t think it is. this was happening before the weather went to shit. and i’m pretty damn sure it’ll continue through the time that winter’s over. i don’t think i’m ever gonna bounce back from that flare up in August.
currently 3AM and i just wrapped my knee up cuz i almost fully and badly dislocated the whole joint, but i caught it just in time so i didn’t have to go to the hospital, but it’s now in pain and i need to make sure it stays in place. also, can’t sleep because i’m in too much pain all over.
some things that have become my normal since my latest big flare up has passed:
my left hip clicking whenever i walk, not just my right one
my knees hurting badly whenever bent or used (so a LOT of sitting/laying positions are no longer okay for me, i mainly lay with my legs up and even with my body/hips)
not being able to sleep or lay on my sides anymore because i’ll be in intense pain
nausea and chest pains are much more severe and common now (frequently feeling like throwing up and almost doing so)
chronic fatigue being a hundred times worse and barely having the energy to do much anymore
all of my pain and symptoms being flared up more easily and in a less amount of time (takes a few minutes to get me to a point where i definitely need to rest/stop, instead of a couple of hours/a whole day)(so many more ways that they all can flare up now)
more of my joints getting dislocated and subluxated (wrists, knees, ankles, etc., not just my main ones like my shoulders and hips and etc.)
my jaw hurting and clicking more than its usual
insomnia and painsomnia (unable to sleep because of pain and no position being comfortable, and then waking up several times throughout the night, and also waking up way too early)(this is probably one of the ones that drive me the most crazy)
my baseline chronic pain now (probably) permanently heightened to about a 7 (instead of my used to be 4) and goes extremely quickly to 9-10
brain fog is a hundred times worse and more frequent (it’s a big causer of now a frequent stutter, and makes my already existing speech impediment act up)
i wanna quit my job but i know my mom is totally against it cuz “i have to have a job” and she probably also thinks i’m “giving up”
this is the opposite of giving up. this is recognizing my limits, recognizing that i’m far surpassing them, recognizing the SERIOUS long-term damage that they can and may do to me, and then also wishing to look for a new job to replace this one, one that is better than this one, better for ME. so i WILL have a job when i find one, and i’ll be in a fuckton less danger of harming myself severely and for the long-term.
i’m gonna try to talk to her about it some more another day maybe. i’ve been considering it for a bit now.
