#Pots

[spookietrex]

I hate the look on able-bodied people's faces when you can't do a thing that you could do the day before. The look of disappointment, confusion, the "Oh but you could do it before. Are you SURE you can't do it?" Like yes, Brenda, I'm sure that I am in too much pain to function/move from my bed right now so going for a walk when I could move 50 feet yesterday without my cane IS too much.

#angry cripple #crip punk #cripple punk #cripple posting #disabilities #invisible disability #physically disabled #disabled #physical disabilities #this is about physical disabilities please don't derail this post #ehlers danlos type 3 #ehlers danlos #ehlers danlos problems #ehlers danlos zebra #ehlers danlos syndrome #hypermobile ehlers danlos #fuck you eds #eds zebra #living with pots #fuck you pots #potsie #pots #fibro #fibromyalgia #fibro problems #fibropain #chronic illness #chronic pain #chronically ill #ableism

[tuliosoap]

Reminder that if you ever ask someone about their disability/mobility aid/etc, there is a right and wrong way to ask, and the person you are asking is allowed to say no to giving you an answer.

#tulisays #disability #disabled #disabled community #heds #hypermobile ehlers danlos #ehlers danlos syndrome #ehlers danlos #pots #pots syndrome #chronic illness #chronically ill

[stellersarson]

I have No clue how to go about this. so. uh.

My fellow cripples and chronically ill mfers, How The Hell do you do things?

Like ... not just pain, that's not a major issue for me I don't think? at the very least it's manageable, but How do you do things through severe brain fog and generally feeling Really Bad/Unwell? Like ... not just POTS "oh I'm dizzy as shit" but also that general "I feel run down and really weak"

Any advice is appreciated, no such thing as overstepping or being condescending here because I can't even get a fucking doctor to listen to or help me in general (and am now too broke to afford one) and it's just. gods I don't know what to do.

Sorry this is kind of vent-ey, I have no clue how to go about this and thinking is difficult.

#cripple punk #cpunk #crip punk #chronically ill #chronic illness #heds #pots #postural orthostatic tachycardia syndrome #hypermobile ehlers danlos

[henk-heijmans]

Fog coming in over the chimney pots in Swansea, Wales, 1954 - by Carl Mydans (1907 - 2004), American

#Carl Mydans #Wales #Swansea #fog #chimney #pots

[narcatsisst]

one of the biggest things about finding out you're chronically ill is seeing something that happens to you be listed as a symptom and going "wait, thats not normal?" also, finding out you're not lazy, its not just anxiety, its not just burn out, and that theres something actually wrong with your body.

#actually chronically ill #chronically ill #chronic illness #pots #potsie #pots syndrome #spoonie #spoonies #invisible disability

[thatchronicfeeling]

Do you have (a) a bowel condition (diagnosed/undiagnosed) AND/OR (b) POTS and have you (c) tried compression garments/shapewear that go over your belly? If yes, has this ever upset your gut? Any thoughts / advice welcome! <3 Longer Version: I have Ulcerative Colitis and POTS. Over the past few months, I've been trying out various kinds of compression to see if that helps my POTS. Trying to work out what has caused my current gut upset. Wondering if it might be connected to the shapewear shorts I was wearing at the weekend? I've been trying out different kinds of compression. Below-the-knee socks'/stockings are helpful. Since I'd seen some folk recommend the socks + shapewear combination, I've been trying that out (it helps with POTS). Maybe there's a difference depending on the shapewear shorts, though? I made sure to get ones that I can easily slide/roll down to go to the toilet. (Two 'accidents' whilst hospitalised with Ulcerative Colitis aged 21 are more than I need in a lifetime.) So, while there is some compression, these are not the tightest shapewear that you can get. I've been trying out different brands. One pair I wore all day and had no apparent problems with them. Then, I tried a different pair, which I wore all day (~14hours). These ones have slightly stiffer fabric (they're probably a wee bit tighter too). After I took them off, I felt very bloated. Overnight my belly started to feel achy/tender and this continued all of the next day. In terms of sensation, this was the same kind of soreness after lots of diarrhoea, or a colonoscopy. But I hadn't had either of those. Today, my gut doesn't feel as tender, but I'm experiencing urgency. Could the shapewear shorts have caused this? (or is something else going wrong with my colitis that I need to work out?!) I know nobody can have a definitive answer to this, but if you have any similar experiences relating to shapewear/compression (or even a corset), I'd really appreciate hearing your perspective! <3

#pots #postural orthostatic tachycardia syndrome #postural tachycardia syndrome #ibd #inflammatory bowel disease #ulcerative colitis #crohn's disease #ibs #inflammatory bowel syndrome

[vtk13]

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

#chronic illness #chronically ill #chronic pain #actually chronically ill #pots #pots syndrome #dysautonomia #fibromyalgia #postural orthostatic tachycardia syndrome #supraventricular tachycardia

[chroniclesofchronicillness]

This makes so much sense

#chronic illness #chronically ill #chroniclesofchronicillness #chronic pain #invisible illness #invisible disability #spoonie #mental health #pots #svt #trigeminal neuralgia #potsandspoonies #100 percent

[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

#My orthostatic tolerance is currently zero #POTS #postural orthostatic tachycardia syndrome #me/cfs #fibromyalgia #chronic illness #disability #migraine #gastroparesis #chronic pain #chronic fatigue #chronic fatigue syndrome #myalgic encephalomyelitis #spoonie #mast cell activation syndrome #MCAS #dysautonomia #chronic migraine #joint pain #hEDS #ehlers danlos syndrome #hypermobility #hypermobile ehlers danlos #interstitial cystitis

[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.

#spoonie #chronic illness #invisible disability #disabled #chronic pain #actually disabled #chronically ill #pots #pots syndrome #ehlers danlos syndrome #heds #hypermobility #hypermobile ehlers danlos #joint pain #mobility aid #mobility aids #ableism #autism #actually autistic #mental health #mental illness #physically disabled #physical disability

[seven-winged-liar]

Finished and sealed GO pots!

I love how they turned out <3

#art #artists on tumblr #my art #traditional art #fanart #small artist #david tennant #michael sheen #good omens #good omens fanart #flowers #pots #acrylart #acrylic #acrylpainting #traditional media #neil gaiman #traditional drawing #crowley #aziraphale #aziracrow #angel crowley #colors #crowley and aziraphale #az fell #a z fell #anthony j crowley

[mybodychoseviolence]

“surely this will not cause my chronic illness to flare up,” i say, actively doing something that has never failed to flare my chronic illness

#chronic illness #chronically ill #chronic fatigue #chronic pain #disabled #disability #pots syndrome #potsie #pots #joint pain #migraine

[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!

#my art #art #disabled artist #original characters #rollator user #pots #postural orthostatic tachycardia syndrome #chronic pain #babe with a mobility aid #disabled and cute #disabled oc

[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.

#chronic illness #chronically ill #fnd #chronic fatigue #actually chronically ill #chronic pain #pots #heds #actually disabled #ableism #disabled #physically disabled

[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 💕

#chronic illness #chronic pain #disability #actually disabled #chronic fаtiguе ѕуndrоmе #spoonie #cfs #fibromyalgia #cfs/me #me/cfs #cpunk #cripplepunk #pots #long covid #yes this is about something that happened lmfao #feel free to add more #bc I am sick of this! #this is about physical disability. please don't derail it

[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.

#chronic illness #ulcerative colitis #pots #postural orthostatic tachycardia syndrome #postural tachycardia syndrome #disability