#Orthostatic

[vtk13]

“slut era” i whisper to myself as i rot in my bed, sick like a frail victorian child

[chronicallydragons]

anyone else ever wish they could lie down harder? Like, I'm already horizontal, but I need more horizontal. I need to be absorbed by the floor. I think that would fix me

[my-brodie999-fan]

https://www.change.org/p/accelerate-research-and-treatment-for-orthostatic-intolerance

https://www.change.org/p/accelerate-crispr-research-for-motor-neurone-disease-mnd-treatment

https://www.change.org/p/accelerate-brain-tumour-research-for-a-chance-at-longevity

https://www.change.org/p/accelerate-research-and-development-for-lactose-gluten-intolerance-cure

https://www.change.org/p/fund-research-for-crispr-treatment-of-arthritis-and-fibromyalgia

https://www.change.org/CureParkinson

https://www.change.org/p/accelerate-cancer-research-and-treatment-using-crispr-and-other-innovative-methods

https://www.change.org/p/accelerate-research-and-funding-for-alzheimer-s-cure-using-crispr-technology

https://www.change.org/p/accelerate-research-and-development-for-a-diabetes-cure

https://www.change.org/CureHIVWithCRISPR

[little-pissbaby]

fun fact about me! I have hyperadrenergic Postural Orthostatic Tachycardia Syndrome (hPOTS). this means I am prone to fainting when I change positions or when I feel a strong surge of emotion, positive or negative. for me, laughing is my worst non-postural trigger.

this is a clip from playing lethal company with friends a few months ago. you can hear the eerie silence of presyncope at 0:19, and the sound at 0:23 is my face hitting the keyboard lmao. I played this for my mother and she literally pissed herself laughing and DEMANDED I show every single person I know (including my doctors, who thought it was funny to see and surprisingly helpful, especially for being audio only).

[potsiepumpkin]

Useful information

[disabled-bug]

I’m so proud of people living with chronic health conditions. That shit is HARD. Idk who needs to hear this, but if no one else has said it: I’m proud of you. You’re sticking it out through so much pain and grief. That’s no small feat.

Every small thing you do for yourself health adds up. The grief is heavy and it comes from a place of love. The grief knows the pain is wronging you.

I’m proud of you. I hope on the good days you can be proud of yourself.

Keep going.

[chronically-mars]

I never truly knew the meaning of friendship until I became chronically ill and disabled. When my health declined I had people leaving left and right because I couldn’t keep up with other teenagers. I stopped having people check on me, I stopped getting invited to stuff, stopped being included, until I just got left behind. Now as an adult I found friends who check up on me, make sure whatever we do is accessible to me, always making me feel included, they are my support system.

Check up on your chronically ill and disabled friends, keep including them in stuff even if they have to end up canceling it. Being excluded for something you have no control over is horrible and no one should go through that.

[chronicsymptomsyndrome]

I know its kind of silly to say “don’t feel bad for canceling because of pain, fatigue, etc” because I know guilt is a reflex you can’t easily refrain from. But you can reason with yourself so instead I’ll say this:

Nobody can feel what you’re feeling but you. Nobody knows the severity of what you would be putting yourself through if you were to “tough it out.”

If you do “tough it out,” the purpose for you doing the thing will most likely not be fulfilled anyway. You probably will not be mentally present or engaged. You probably will not have a good time or get much out of it. Etc.

If people really have such a problem with it, thats a huge red flag. Being transparent about your needs and boundaries is a great way to weed people like that out of your life.

If you have any kind of chronic illness or disability, remember that you probably have a very warped judgement of what is “reasonable” to endure in terms of pain, fatigue, burnout, etc.

You didn’t ask for this, you don’t deserve this, there is no reason you should have to bear the weight of it alone. I bet if someone else was in your position, you wouldn’t mind helping accommodate for them?

Low energy days are truly sacred, take them seriously. Please respect your body’s signals. “If you do not choose times to rest, your body will choose for you” or however the saying goes

It is so much pressure to have to deliberate what sacrifices are necessary for proper self care. Give yourself extra credit for having to deal with that stress on top of whatever is putting you in that position in the first place. Thats a lot at once

You are leading by example and showing others that you would never expect them to hurt or overextend themselves for your benefit. Putting yourself first always inspires other to do the same.

Please be proud of yourself for even considering canceling and putting your needs first. That is so strong of you <3

[gayaest]

[ID in alt-text]

Bora! She’s blasian (black and korean!) she has POTS (postural orthostatic tachycardia syndrome) and Chronic Pain! 🩷💜

She takes her rollator everywhere!

[affectionatepanda]

Something I wish abled bodied people would understand is that just because I’m using a mobility aid doesn’t mean I’m “hurt” in that moment necessarily. They’re also preventative measures. Since I’ve began using my aids at work I’ve gotten so many versions of “what happened to you” that I genuinely cannot keep track. Nothing *happened*, sometimes people are just disabled.

[hellyeahsickaf]

brain fog is so stupid. Like what do you mean my body is in such rough shape I have nothing but my thoughts but also I can't think?

[spoonfulofhannah]

When a disabled person says that they can’t do something, we don’t mean that we just don’t want to. We also don’t mean maybe. We mean that we physically cannot do it or that we could, but it could really harm us. We have to pay consequences. You don’t.

[ghostonly]

Irritates the hell out of me when people respond to a post or comment like, "everyone does this, it's not just [disorder/illness/neurotype], it's called being a person."

Yeah and everyone coughs once in a while but it doesn't mean someone with pneumonia doesn't cough?? It doesn't mean pneumonia doesn't cause coughing??

Everyone gets dizzy once in a while but it doesn't mean vertigo doesn't exist??

Just about every symptom or group-common trait is going to be experienced by people who don't belong to those groups or have that disorder. It's about the frequency and intensity with which that symptom or trait comes up.

[thatchronicfeeling]

Reminder that it's less than a month before pharmacies will be closed for end-of-year holidays. Make sure that you will have enough medications to see you into the new year.

[potsiepumpkin]

When the chronic fatigue is chronic