#POTS

[digitalfossils]

[mybodychoseviolence]

standing…..for two hours…….with a condition that means my blood Does Not Do Its Job……..i am not a fan

[consider-your-potatoes-mashed]

fuck I hate having POTS all I’ve been doing for the last half hour is lay down. Why the fuck is my heart racing and pounding???????

[wormslikeme]

Yearning ahead

Being chronically ill for me is wanting so desperately to ask for comfort (for me it’s mostly physical comfort I need) when in pain but being too:

A) anxious that people will reject me/take it the wrong way

B) not wanting to bother anyone, so I just sit silently in pain

C) wanting so desperately for someone (anyone at this point) to just like…..be physically there for me when I’m suffering.

Like when I have a migrane all I want is for someone to hold me and tell me it’s going to be okay. It may not make the pain go away but it would sure beat crying into my pillow and gripping it in a pitch black room while I try not to throw up from pain. Completely alone.

[dog-gutz]

I met with my psychiatrist today, who is absolutely wonderful, and asked for her opinion on what my cardiologist had told me. She basically said, that because my symptoms started before my medications, it is unlikely the medications have caused the symptoms I'm experiencing. She said a lot of doctors see people who struggle with psychiatric problems and blame those problems/medications right away, but she said she would seek a second opinion. She also said that if she ever makes me feel like this doctor has made me feel to tell her, because she never wants to make me feel this way. Seen as my psychiatrist has known me for almost a whole year now, I'm going to trust her judgement and agree with her, and go see this new doctor in May and see what he has to say. I can't even express how much I appreciate my psychiatric care team, they do so much for me and always listen, I can't imagine seeing anyone else.

[disagigglebilities]

Disability hearing went weird today. They had an "expert" cardiologist who completely ignored my diagnoses and then proceeded to tell the judge he thought I had somatic symptom disorder.

I was literally sobbing by the end of his testimony and the judge practically booted him from the call as soon as was possible. I now have a psychological evaluation sometime in the next month.

My lawyer said the judge appeared to not be happy with the way the "expert" treated me and my health issues and that the so called "expert" had been super unprofessional and that all and all it might end up helping my case still. But damn talk about traumatizing as fuck. My friend had to calm me down after all was said and done, I was crying so hard.

[voidoffline]

I love that just eating spoonfuls of ketchup is healthy for me now.

Now no one can tell me the salt will kill me because instead it will kill me if I don’t eat the shit ton of salt

[vtk13]

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

[chroniclesofchronicillness]

This makes so much sense

[chronicallydragons]

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

[seven-winged-liar]

Finished and sealed GO pots!

I love how they turned out <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!

[love-me-love-my-weirdness]

I think the reason why people want to know what's "wrong" with disabled people is because they want to reassure themselves.

They want you to say you were in a horrific accident or that you have a well known and treatable disease because they think they can stop it happening to them.

They think their health is a given because they aren't a dangerous driver/ an alcoholic/a drug user/obese/an unhealthy eater etc. Obviously this isn't true but it's easier for them to think of it like that.

Until one day they meet someone who did nothing. They're not really asking "what's wrong with you". They're asking "what went wrong" because they think they can avoid it.

So when they meet someone who made all the right choices, who was healthy, who was safe and one day woke up sick and never got better, it scares them because some part of them realises that it could happen to them.

They can exercise and eat a balanced diet and be as careful as possible and it doesn't do a thing and they can't do a thing about it. That terrifies able bodied people.

People like to look for something or someone to blame and they hate it when there's nothing there.

[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.

[stellaltumi]

stop villanizing disabled people. stop assuming we're just being lazy. stop assuming we could be trying harder. stop assuming that we'll "feel better" in a few weeks. stop assuming that we have the same energy levels as everyone else. thanks for coming to my ted talk.

[hellyeahsickaf]

When I say "I can't do that" what I'm not saying is:

I don't feel interested in doing that

I don't care enough to

I'm too good to be doing that

I don't think you deserve that of me

I'm not in the mood to do that

Not now, I'll do it later

Maybe

If that's what I meant, that's what I would say

What I am saying is:

It will negatively affect me in ways I can't afford

I simply can't physically fucking do that

I can't risk the potentially severe consequences I may experience if I overestimate my ability to do that

And if I explain that I am unable to do that, it is not an invitation to:

Tell me how much my disability hurts your feelings

Ask if I'm sure

Interrogate me because you believe yourself to be the judge of how unwell is unwell enough

Put words in my mouth ("why don't you care?")

Tell me how easy it would be

Remind me of how many other things I've been unable to do. I keep the score more than you do

Accuse me of exaggerating or faking to avoid doing it

Ask me again shortly

Make assumptions about additional explanations. (I must be mad at you, I must not care about this)

Offer compensation in return ("I can pay you" "we can do something you want to do after" "I'll get you something you like")

Ask what it would take for me to suddenly be capable of doing it

Tell me how you do things you have to do when when you're tired and then you can just rest and recover. I am not like you

Remind me of a time I was able to do that. Either I had more spoons or was less severely disabled if at all.

Say that if I was well enough to do X today, I should be able to do this as well. Energy doesn't work that way. Are you capable of running 8 miles right this minute just because you were okay to work a 10 hour shift today? That's what I thought

Suggest simply doing it a certain way ("take your time", "do it sitting down", "we can stop and take breaks", "just take your painkillers", etc)

But it is an invitation to:

Leave me the fuck alone about it 💕