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POTS Problem #8:

Always feeling like a freezer

(I could have eight blankets on and still feel like an icicle)

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I think… there's a certain part of the human brain that craves attention when we are suffering. Deep down, we all want people to take care of us when we feel sick. Like when we're kids and our parents would feed us and and dote on us. Especially when your parents were otherwise… not good to you, being ill was the one time you got positive attention and compassion.

With chronic pain and illness, you don't tune out that desire to be doted on and loved in times of suffering. You force yourself to ignore that need because you think it'll never be fulfilled by the people around you. Where's my mom to make me soup when I'm sick or check my temperature? Where's my friends to drop by just to see how I'm doing?

And I think I'm often caught between wanting support from the people around me and not wanting to feel like a burden. Then I avoid reaching out to get support and then feel resentment towards others for not giving me the support and attention I wanted deep down.

I'm not entirely blameless in my social frustrations related to my chronic pain, but I do think there's something to be said about how devastatingly isolating it can feel to be a person with chronic pain/disability/illness and know that you will never get your needs from others fully fulfilled to the extent you want. Learning to find that balance of tempering your expectations, fulfilling your own needs, and communicating to your support system what specifically you need. At least... I hope that's something I can learn as a skill over time.

A stable and proactive social support system is one of the most important things a chronically pained person can have, I think.

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shoutout to my chronically ill and disabled folks who, despite all their symptoms, somehow manage to have able-bodied people doubt them

i see you, i believe you and i love you!!!

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cw // tmi , bowel talk , this is a chronic illness account, you’re gonna get me talking abt weird things my body does

i’ve been more inactive lately bc i was home for summer and now i’ve been getting settled in being back at school

this past week was my first exam for one of my classes and i’ve got a lot of particularly difficult classes this semester

i’ve been very stressed this week bc of all this and something that’s interesting with chronic illness and anxiety that resides in my stomach a lot is i can tell that i’ve had a particularly stressful week if i spend friday night having diarrhea

my body and my mental state have a weird reaction together and cause that as a sign that i’m able to relax after a long week

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just met someone else with eoe irl for the first time

it’s a strange sense of understanding with each other

i love all of you with rare diseases out there, we have each other <33

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Ablebodied keep saying that cripple punk is "excluding the brain" and "creating a dualism between the brain and the rest of the body" when it is not. People with a neurological disorder can call themselves cripple if they want to because neurological disorders are a physical disability.

There is no denial some physical disabilities often come with psychiatric symptoms and vise versa, but it is not the same as a mental disability or a physical disability.

Autistic people often experience motor difficulties but it is not the same as someone with mobility issues. People with multiple sclerosis often experience cognitive symptoms like executive dysfunction, but it is not the same as someone with ADHD. It's not harmful to acknowledge the differences between mental and physical disabilities.

It's possible to acknowledge interactionism without saying the two are identical and speaking over people with a physical disability.

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head hurts :(((

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send me a number in my inbox and i will answer that question !!!

cpunk ask game 3

just to clarify on the 2nd one when i mentioned you can talk about your mental disabilities in the answers if you'd rather instead of your physical disabilities. i mean phys disabled people can additionally talk about any mental disabilities they also have, not inviting able bodied mentally disabled folk to use my ask games.

this are for cripples only and still asks centered around physical disabilities but if the reblogger wishes to answer a question and talk about their mental disabilities too they can. that is all.

1st, 2nd

biggest inaccessible thing that angers you right now?

something no one talks about that you wish had more discussion about how it could be more accessible?

what are some good resources that help you out? any blogs or sites that really helped you out with a disability or gave you support?

if you have an aid, mobility or not, how did you get it and do you know any good places to get them at good prices?

any programs you know of that are either easily accessible or make things more accessible?

whats an aid that no one mentions being an aid? could be big or small

any recent news that really pissed you off, like an accessibility being taken away?

any good news to share with the disabled community?

what are some helpful things in your town/city for cripples?

what can your town/city improve on to help?

is there an accommodation you wish you had/could get/want more of?

whats some discourse going around right now that you wish would stop?

advice for people who are only just discovering theyre crippled?

any questions for people who've been in the community a while?

ramble about your condition?

rant about your environment?

if you have any aids, have you decorated and/or named them?

tips for maintaining mobility aids of any?

anything that motivates you to leave your house even just for fresh air and a stretch?

free space!

[ID: banner reading "This blog is protected by the De Rolo family and co." in all caps. It has an orange cloud background. On the left is the De Rolo coat of arms and on the right is the symbol of Vox Machina]

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Hi where in the world do you find a POTS specialist?

i live really close to chicago so i’m lucky enough to see doctor barboi (he actually works out of the hospital i was born at), one of the few pots specialist i’ve heard of (and maybe in the world)

i rlly recommend him if you have the ability but pls be aware he has a waitlist of a year !! (took me over a year to get in with him after making an appointment)

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only if you’re comfy ofc — but would you explain what it was like to get diagnosed with eoe? I have a different eos disorder, but until i asked them to test me for my illness, my doctors consistently ignored my high eos counts and blamed it on allergies… lowkey just wanna know if all doctors are that shitty or if it’s just mine lol

i don’t mind at all !!!

we actually accidentally found my eoe

i’d been tested for allergies multiple times bc i get allergy-like symptoms (don’t know why exactly bc no mcas or allergy presentations other than eoe) but every test has always been negative and idk if we ever looked at my eosinophils in my blood

i was experiencing general gi symptoms that we assumed were gastroparesis but my doctor wanted me to have an upper endoscopy and colonoscopy to rule out anything else !

during that endoscopy/colonoscopy, everything was fine except my doc found the eosinophils and biopsied to confirm. he immediately gave me the diagnosis day of.

my family and i had never heard of eoe at all and my doctor was not looking for it so it came as a surprise but it was a good catch as i’ve most likely had this for years (if not my whole life) and now we can treat it before i get permanent strictures in my throat !

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one of the worst things abt my chronic illness is i almost always find new things that are of concern when doing checkups

like i meet my pots specialist and now there’s a potential for me to have a rare autoimmune disease based off a blood test result that has been low for over a year now

he wants me to retest in 3 months and then ig we’ll go from there

i’m too tired now to put in all the research of trying to diagnose myself, im gonna leave it to my doctors this time

i was able to pretty much self diagnose pots, hsd, and gastroparesis all before proper diagnoses (eoe was an accidental find lol) but this is more complicated so i’m done trying to doctor myself, my own doctor is already on it and looking into it so i don’t need to figure it out in order to advocate for myself which is nice. everything else was bc i had to advocate for myself to be listened to and now this time it was a doctor who brought up the concern so i know he’ll take it seriously

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hi! I saw that you have pots, idk if it makes you pass out but I was recently diagnosed with a fainting disorder and want to know if theres anything you do in order to make sure no one calls an ambulance or something if you pass out alone? thats something that has been freaking me out lately

no need to respond if you dont feel like it!! sorry if this is rude :)

nah this is 100% okay to ask !!!

i will start off by saying that while my pots has made me faint, it is not frequent and i haven’t for over a year now!

however bc ik there is a possibility what i have is in my medical id for my phone (apple has one you can make accessible without unlocking) and my physical medical id both say smth along the lines of “could pass out, do not call ambulance unless hurt or unresponsive” !!

here’s an example of my apple medical id !!!

i hope this helps give you an idea !! sometimes a physical medical id is better (don’t have mine on me rn) and there’s plenty you can get online !!

this also will not necessarily stop someone from calling for an ambulance, especially if they don’t know you but it is an extra step you can take !!

i also know for ppl i do know, i tell them what to do if i pass out and so they know what i prefer !!

hope this helps !!

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i just found an old note i made before i became chronically ill where i listed all my phobias,,,

one of which was the fear of forgetting things

since then i’ve developed memory issues and have forgotten a large chunk of my life/previous memories

it still does scare me, but i wish i could tell my younger self that it’ll be okay

i remember being so scared and angry when i couldn’t remember stuff anymore bc i used to have a near photographic memory

i still hate it, skill regression with illnesses and disorders is one of the worst symptoms in my opinion bc it feels like you’re losing aspects of yourself

i’m just feeling for my younger self rn and wish i could comfort them by letting them know that we figure it out, memory issues doesn’t mean losing myself

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appreciation post for my mom

i’ve been having an especially rough night

and i went to her room and she just held me for 30 minutes

she doesn’t know how exactly to help me bc i don’t know exactly how to either, but she held me and it made me feel safe.

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i have been having a really bad time with my mental health lately and i’ve been unable to get in with my therapist

but today i hit 4 month clean from self harm and i am still 4 months clean

and that’s enough

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adding for myself:

- EOE !!!

i don’t see it mentioned much at all and would love to show some love to fellow ppl with eoe !!!

happy disability pride month to those with conditions no one talks about, online or in general:

multiple sclerosis (me lol)

marfans

cerebral palsy

bells palsy

hidradenitis suppurativa

cauda equina syndrome

mixed connective tissue disorder

hyperadrenergic pots

non hypermobile eds types

stickler syndrome

mitochondrial disease

cystic fibrosis

sickle cell disease

myasthenia gravis

post-cholecystectomy syndrome

SWAN (syndromes without a name)

...just to name a few. i see you and you deserve awareness and understanding.

this list is non exhaustive, rb with other conditions you want to see represented!!

[ID: a post banner with dark red background and medium grey bolded text in the center. it reads “This post is about physical disabilities, do not derail.” On each side there is the dynamic disability icon, a gray symbol of person in manual wheelchair leaning forward with arms bent behind them mid-push. /end ID]

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not so friendly reminder that it is not “gay wrath month”. it is DISABILITY PRIDE MONTH. we already get forgotten, ignored and silenced, so just don’t do that shit.