20/30s, Queer, phys-disabled, plural. They/Them we've a mast cell disorder with unknown triggers currently. please see our pins. please; -take covid seriously; https://covidhelp.org -dont vote for genocidal politicians (aka, any) -dont respect capitalist credentials ('dr.') on face value And Oppose; -radfems/'tme/tma' (transphobes) -the ableist dsm -colonialism support; -anti-heirachy everywhere -youth liberation ACAB, BLM text-blog; https://fractalz.mataroa.blog/
kolektiva.social
Non-Financal Mutual Aid Request, seeking informationHover or focus to revealSensitive
We are a plural collective with a form of mast cell disorder. We know this due to antihistimine medication and diet being enough to seriously reduce our symptoms, however we have yet to fully adress and stabilize them.
One of those symptoms is a form that no individual we've met or heard of, so far, has any direct knowledge of. We are seeking information on it, both so we can better adress it, and so we can better discuss it with others and ourselves.
When we are having a histamine reaction, or histamines are too built up in our body. Some combination of our symptoms results in heightened fear, as we understand is typical for epinephrine reactions.
For us, uniquely. This also comes with extremely heightened paranoia, sensitivity, and defensiveness. Which is what we cannot fully understand. Even if we know it might be coming, and even if we prepare for it ahead of time, we are not sure what if anything we can do to prevent us from causing harm as result of this. (Beyond extreme over-compensation like 24/7 psychiatric drugs, even when not having a reaction)
This state of mind seems to sneak up on us and cause us to act out, over-reacting, toward percieved threats (real and not) before we can stop it. Before we can calm ourselves down enough to be concious of our state of being.
It is extremely difficult for us to differentiate this state from legitimate c-PTSD panic attacks and anger, even to the point of not being sure if we've ever had the latter.
In theory someone living with us should be able to spot it, or maybe even a support animal. But we cannot obtain either in our current living situation.
We have met and heard from others with mast cell disorders who say a panic attack kind of state is a common reaction to histamines for people with them.
But none have recognized our extreme paranoia- the often seemingly irresistible compulsion, to falsly see someone/thing else as the cause of the entire reaction. Which always ends when we remove enough histamines (via diet and medication).
Let alone been able to advise us on how to handle our emotional reaction to this in the moment and after, or how to discuss this with others.
So what is this? Can anyone please help us understand this?
Thank you!
#MutualAidRequest#MutualAid#MCAS#MCAD#Immunology#Neurology@QuyetPawz@tech.lgbt@wrzky@posts@wrzky.com@mutualaid@ovo.st@mutualaid@fedigroups.social@MutualAidNet@mastodon.social@mutualaid@kolektiva.social@MutualAidVisibility@mastodon.social@mutual_aid@starflower.space@mutual_aid@hexbear.net
ceramicist making shinto + shamanic raku sculpture to help save the world. i love nature and cats and get v upset about the state of everything. from wales/ie, in france for now. autism + agender + not very human + hEDS, autoimmune inflammatory arthritis, lupus/sjögrens, MVP, dysautonomia, POTS, MCAS, etc. 😷 sculptures: https://www.driftingspirits.art provide tea: https://ko-fi.com/moon_bun take care out there hoomans free 🇵🇸 🔥🌍💔 ffs people just be decent
sunny.garden
🔥 psa for anyone taking quercetin on a regular basis 🔥
this may be common knowledge and just previously unknown to me, but i've just today discovered that quercetin chelates iron/blocks iron absorption and can lead to anaemia and/or low ferritin levels. so if you're taking it regularly, please have things checked!
(and if ferritin is low enough, just stopping quercetin won't be enough to bring it up and possibly neither will otc iron supplements, so please do get some numbers / help if necessary)
i've just been in tears from finding this out as quercetin is one of the few things that helps me at all, and given i have no medical care, one of the few things i can access. i've been taking a decent dose daily for the past ... 13 years? but my ferritin was on the floor at my last blood test a year ago (ofc i couldn't find anyone to do anything about that). and i can't even take oral iron, not that it would help if i could, given my levels, but. yes. yay
take care people and good luck #MCAS#POTS#hEDS#LongCovid#allergies
Der Stil ist die Physiognomie des Geistes. (Schopenhauer) Köpenickerin, jetzt im Rheingau. Lehrerin. Antifaschistin. LGBTQIA+ Ally. Seit August 2023 schwer an ME/CFS, POTS, MCAS und CCI erkrankt und 23h/Tag bettlägerig. Ein ❤️ für Prog und die Liebe. Nur der 1. FC Union Berlin #SchönerEisernOhneNazis #fcunion #eisern #bildung #fediLZ #progressiverock #wandern #mecfs #longcovid #mekills #chronicillness
mastodon.social
Es tut mir so gut, draußen unterwegs zu sein. Aber es kostet meinen Körper so viel Kraft. Es ist, als bräuchte ich unglaublich viel Kraft, mich aufrecht zu halten. Die Muskeln müssen so irre viel arbeiten. Was für Dreckskrankheiten sind das bloß, verdammte Hacke!
#MEcfs#POTS#CCI#MCAS