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i have a doctors appointment tomorrow!! iāll have to get another booster for something, but weāre mainly going there to figure out some stuff with my blood sugar (?suspecting diabetes? hypoglycemic? hyperglycemic? not sure yet, but thereās something there) and then also to figure out and/or diagnose whatās 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.
iām 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 iām wrong about some of it, then itās 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 donāt see me or care that much.
iāve 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 iāll be okay in the end. they donāt realize that that flare up may last me weeks, instead of just a couple of days.
they donāt really realize that that flare up could make everything worse more permanently again.
iām 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 donāt get better, like how i didnāt get better that time.
and whatās that gonna look like for me?
iāve only improved slightly in some ways since my flare up in August, and thatās just because iāve adjusted to this new level of misery. i continue through, because thatās what i HAVE to do.
but itās just infuriating because they donāt realize that i have to be more careful now. that i SHOULDNāT do these things, as much as i may want to.
at this point, iām 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 donāt realize that i donāt wanna be like this either. if it were my choice, iād be well 24/7. iād go to places, iād have fun the whole time, iād not have to be so self-aware of my body. if i had a choice, i WOULD.
i āhold myself backā a lot, because i donāt wanna end up worse. thatās all. end of story. iām not āholding myself backāāIāM MAKING SURE I DONāT END UP WORSE.
iād 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 donāt think so. i donāt think it is. this was happening before the weather went to shit. and iām pretty damn sure itāll continue through the time that winterās over. i donāt think iām ever gonna bounce back from that flare up in August.
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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 didnāt have to go to the hospital, but itās now in pain and i need to make sure it stays in place. also, canāt sleep because iām 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 iāll 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 (itās 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 āi have to have a jobā and she probably also thinks iām āgiving upā
this is the opposite of giving up. this is recognizing my limits, recognizing that iām 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 iāll be in a fuckton less danger of harming myself severely and for the long-term.
iām gonna try to talk to her about it some more another day maybe. iāve been considering it for a bit now.
