Chronic Disability - Tumblr Posts

People who have regular body heat don't experience cold the way we do. They apparently have this little heater inside of them that just, keeps their blood and internal organs comfy all the time. Being "cold" to them is just a chill on their skin. "If you're still cold after the first layer, put another layer on!" That doesn't work if you don't have the body heat to warm up those layers!!! it's just cold fabric on top of cold fabric on top of cold fabric on top of cold skin on top of cold fat on top of cold muscle on top of cold bones.

Then of course, even if there are FINALLY enough layers to make our skin warm. That does not mean it will make our bones warm. I could have an electronically heated blanket on me, and start sweating from it, and STILL BE COLD because it takes a lot of time for any amount of heat to pierce the surface level of my body & warm me in any ways that matter. So yeah, anytime you're interacting with somebody who doesn't have temperature regulation issues, and they offhandedly mention that they love the cold, just be aware they are never ever talking about our kind of cold. the kind that feels like an uphill battle. They're talking about something completely different and unique to them and their little internal heater. something some of us may never experience because we're always trapped in that fight with the air around us.

Every so often I have the strong urge to drop the act and collapse of exhaustion and start crying about how much pain I’m in just to prove to people that this is my everyday and my illness is agonisingly real so stop accusing me of ignoring your texts or not caring enough to go to your event.

I’m trying really really hard.

Screw it.

I got dressed today and I’m fucking proud of myself. I brushed my teeth and I’m proud of myself. I got out of bed and I’m proud of myself. No achievement is insignificant. Things people so often take for granted are accomplishments on their own especially when you can’t take them for granted anymore.

So you have chronic pain?

Yep

So are you in pain now?

Yep

So were you in pain yesterday?

Yes

And the day before?

Yes

And the day-

Okay let’s go over the definition of chronic again

Health is a myth and you cannot convince me otherwise

People think they’re trying to be kind when they say “it’ll get better” but they aren’t.

It’s a punch to the gut whenever someone tells me “it’ll get better” because I’m chronically ill and it won’t. All you’ve done is try to make yourself feel better about my lifelong suffering.

Having severe anxiety and chronic illness is constantly trying to figure out if you’re spiralling or this is actually not normal for most people but you feel like shit 24/7 so you’ve just been ignoring for the past four years

infuriated by the language in the "welcome" letter we got from the local FND Service in Devon (fnd = functional neurological disorder) which perpetuates a myth about FND

emotional/psychological stress is a risk factor for developing FND - which means you're at a higher risk of developing FND if you're experiencing or have experienced those states (for example if you're a childhood trauma survivor) - it is not a cause

FND is a condition with physical symptoms and a currently not understood cause, in which the brain and body can't talk to each other properly (leading to loss of function or sensation, and brain fog and memory issues, for example, and a type of non-epileptic seizure too)

it's diagnosed both by ruling out other stuff (like MS, which it can resemble) and also rule-in tests these days - depending on which country you're in and how much funding it gets to be explored

for some of the latest info on FND and brain differences etc please read this pdf from Nature Reviews

and once again this is not a psychogenic condition - it's a physical condition whose causes are not yet understood

Any hEDS folk got any tips for subluxation?

I’ve never dislocated anything but just got told that I likely have hEDS and am realising a few things.

Sometimes my joints make a click sounds and hurt like a bitch and feel really weird. Kinda floppy but sometimes stiff depending on where it is. I didn’t even realise subluxation was a thing. Is this subluxation??

Usually I just wiggle the joint around a bit and wait for it to click back. If it’s causing loads of pain then I just ignore it and wait for it to go away, which is usually does when I accidentally move weirdly and then it clicks back where it’s supposed to.

I have a feeling that that’s not how you’re supposed to deal with it but don’t know any alternatives.

Any help?

Doctor 1: They’re the clone! Shoot them!

Doctor 2: Don’t listen to them! They’re the clone!

Me: There’s only one way to settle this

Me: I have chronic pain and chronic fatigue. Why?

Doctor 1: It’s likely a chronic illness. Our tests probably won’t show it. We’ll look into rarer stuff and listen to all of your symptoms. Rest and look at mobility aids to help you function in day to day life. I can refer you to a rheumatologist and see where we can go from there.

Doctor 2: You need more exercise lol. It’ll go away in a few months.

Me: *shoots Doctor 2*

Doctor 1: You fool! I am the clone!

Me: I know. Please be my new doctor.

I went outside for the first time in over a month!

I've missed the outdoors so much. Everything is so beautiful. I actually had to close my eyes and breathe in multiple times because it's so overwhelmingly gorgeous out there.

There was water and ducks and trees and dogs and sun and insects and plants and wind and clouds and sky!

I've missed it all so much and I know it'll probably be another month before I get out again so I'm trying to savour the memory right now.

I went outside for the first time in over a month!

lol ok this explains so much about the kind of freak that you are

I'm the kind of freak who's housebound and so sick that they can't leave the same four walls and see the sky and breathe fresh air for weeks at a time! Hope this helps 😊

Fuck abled people and their opinions on disabled bodies

My mother literally said to me that she “believes that I am choosing to be disabled and that she believes that I am healthier than I feel” like ma’am you are not in the same body as me you do not know it better than I do. Do you not think that I wasn’t to be healthier? Do you not think I’d rather not be in pain? You really think I’m choosing this? After saying that bull shit she goes on to say that she only wants the best for me and for me to “get well soon” and arugh I stg she really feels like one of those people who are like “don’t say disabled say differently abled” like gah no there are things I simply cannot do anymore I don’t do them differently I just can’t do them

Another thing regarding ableism and what not let disabled people be bitter, be depressed, be upset, etc that we have to live with the shit we do don’t say “it’ll get better” or constantly say “you should just look on the bright side” or whatever the fuck they always say about how we should be happy. We are not here to make you feel better. We are not here to be your “inspiration”. We are not here for you to feel better about yourself. We are not here for you to tell us how we should behave/feel. Let us be human

Why do abled people always fucking suggest the most basic things to “fix” disabled people’s problems/disabilities and act like they know better than we do???

If you, a person who does not live with the disability you’re trying to “fix”, can think of a solution off the top of your head without any research, experience, or even trying to actually understand what we have tried and what we’re actually dealing with don’t you think that we might’ve already or are already trying that???

For me this comes most from my mother saying that I need to change my diet (even though I have so many sensory issues surrounding food and have tried and failed so many times), that I need to lose weight (ma’am I am trying), that I should try stretching (you know what I’ve tried that for years and guess what it just stretches my ligaments because I’m fucking hypermobile and it ends up causes me more pain), that I need to exercise more (I’m trying but I’m also limited by pain. Pain that keeps me from being able to exercise most of the time. Pain that usually gets worse when I try to exercise), that I should try to not use my mobility aids because I’ll become reliant on them (ma’am they help me. They are not hurting me. They are what keeps me able to do stuff you want me to be able to do. Why should I try to not use them???), and so much fucking more

Like seriously abled people stop pretending you know our bodies better than we do I promise you you don’t. Even doctors (as shit as they might be) are supposed to listen to us before they even start to make recommendations (yeah many don’t but they’re supposed to)

So....

Today my mother my big sister n her bf were making ableist jokes....

And I called them out for it but got ignored.

Then after a bath confronted my mother about her ableist language and jokes she made.

Of course ableists get defensive when called out.

YOU ARE NOT A ALLY OR SUPPORTER OF SPECIAL NEEDS / DISABLED PEOPLE IF YOU MAKE JOKES ABOUT RUNNING YOUR CHILD OVER IF BORN VISUALLY DISABLED YOU ARE NOT!!!! 🚫👎🏻❌

Pixel flag divider requested by @mossfrogandratmushroom !

Disability pride flag

I hope you like it :)

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~Parker

POTS and hEDS girly here!

electrolyte tablets or packets to put in your water are essential

if you can, try to get Celtic sea salt- an ER nurse recommended it to me when I went in for a POTS flare because it also has other good minerals in it

obligatory drink more water!! I use flavored electrolyte mix to help me actually drink the water (it’s called Mio, and comes in multiple flavors with different uses/purposes, some are caffeinated, others aren’t, some are just for flavor)

find ways to sit/rest throughout the day, whether it be finding ways to make your route around school shorter or sitting at a closer table/desk so you don’t have to walk as far

if you get really dizzy, GET CLOSE TO THE GROUND. if you faint while closer to the ground, you are less likely to injure yourself

you might want to bring up your concerns to you primary care doctor the next time you see them. Just be aware that if you menstruate they’ll probably dismiss it as anemia due to your period

as for the compression socks, they work best if they’re longer, like calf length, but I have ankle length ones that are nice as well

talk to your school nurse or counselor to tell them about your concerns- if 504s are a thing where you live, ask about getting one

Sorry this was so long, but I hope it helps!!

Potsies help I need advice

I'm not diagnosed but I very likely have POTS and I'm in a flare. I have no accommodations or anything since my parents don't really believe me.

I have to bike 30mins to my school, and we have mandatory exercise 3 times a week. How the hell am I gonna survive this?

I have sports socks that are kind of compressing, and I can take salt to school. Is there anything else I can do that might help?

Thank you so much.

Sorry I Spent all mY spoons this week already and it's fucking Tuesday. We're heading to the knives