#Postural orthostatic tachycardia

[blueberryflavoredfeelings]

sometimes being upright is simply too much to ask of a girl

[rainbowchihuahuabunny]

So I'm chronically ill and some days are better than others. Im on my third bad day in a row right now. Everything hurts so much more than usual, I've been having migraines, vomiting, yesterday i was sitting on the toilet and black blobs came into my vision that wouldn't seem to go away, I just feel like shit. Yesterday I went to take a small nap so I could stay up until bedtime and ended up sleeping 14 hours until my alarm for work went off. Plus my doctor thinks the precancerous growth in my colon is coming back, it's been a year since it was removed but my GI doctor won't get me in until September. So I just have to deal with all the shitty symptoms until then. What I would give to be able to afford to take a couple days off until I feel better..

[ehlers-danloscircus]

When you were happily on a roll getting stuff done and doing happy projects and then all of a sudden the weather decides:

HahahahHAHAHAHAÀAAAHAAAHA

Let's increase the temperature, humidity, and...AND rapidly drop the barometric pressure

HahahahahHAHAHAHAHHAAAAAAAAAAHHHAHA !!

[thefriedbird]

Am having not only a POTs flare but a chronic pain flare. I think I have some kind of underlying infection happening…

But at least I got to stay home and watch the Transformers One trailer live 🤤

[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

[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.

[spoonfulofhannah]

I wish all chronically ill and disabled people a very “doctors listening to you” November

[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.

[blueberryflavoredfeelings]

People with orthostatic intolerance:

[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.

[ehlers-danloscircus]

I SUPER love mast cell/POTS "panic attacks"!

/sarcasm

[thefriedbird]

Man, it feels like forever since my last life update.

Working at a better job with a boss I’ve accidentally made into my super autistic elder brother lmao. Who understands my crippled ass because his wife is also a cripple, who is telepathically my bestie now.

Back on most of my medications, but still experiencing symptoms despite doing the same shit and drinking way more water and taking salt tablets now to help my POTS. I really want to try saline therapy but talking and advocating myself at my cardiologists is a pain in the ass.

Currently am like… $1000 in medical debt even though I’m STILL without an autoimmune diagnosis lmao Fuck the U.S…

Living with my grandmother again to take care of her and to avoid my abusive shitty family. However, my father has been around and it’s for real been sending me into hardcore psychotic bouts. So, I’m seeing my psychiatrist today lmao.

But I hope all my fellow spoonies are doing okay…

🥄

[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