#Orthostatic
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āslut eraā 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
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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 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
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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
#hiv#bile reflux#diseases#motor neurone disease#Orthostatic#brain tumours#lactose#gluten#parkinsonās#arthritis#cure#crispr#cancer#alzheimers#diabetes#awareness#change org#petitions#signatures#gastritis
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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).
#lethal company#pots#postural orthostatic tachycardia syndrome#hyperadrenergic pots#FOR CONTEXT#we have this silly little goof#where whenever we pick up a flashbang of any kind we ask#hey is this bright to you#it's like playing peekaboo with a baby man it gets em every time#anyways i love being chronically ill#chronicillness#i am sickly and not meant for this earth
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Useful information
#chronic illness#chronic pain#disability#pots syndrome#postural orthostatic tachycardia syndrome#chronic fatigue#invisible disability#spoonie#fibromyalgia#potsie#tiktok
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Iām 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: Iām proud of you. Youāre sticking it out through so much pain and grief. Thatās 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.
Iām proud of you. I hope on the good days you can be proud of yourself.
Keep going.
#chronic illness#disability#chronic pain#spoonie#ibs#chronically ill#gerd#pots#arthritis#spoonie life#chronic illness blog#chronic health issues#chronic fatigue#chronic health problems#chronic disability#spoonie stuff#spoonies#encouragement#endometriosis#disability pride#proud of you#fibromyalgia#postural orthostatic tachycardia syndrome#irritable bowel syndrome#gastroesophageal reflux disease#gastrointestinal#uplifting words#chronic health tag#chronic migraine#autoimmune disease
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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 couldnāt 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.
#chronic pain#arthritis#cane user#chronic fatigue#hypermobile ehlers danlos#disability#disabled#hypermobility#joint pain#ehlers danlos syndrome#the chronic pain diaries#chronic pain flare up#chronically ill#young disabled#physical disability#disabilties#postural orthostatic tachycardia syndrome
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I know its kind of silly to say ādonāt feel bad for canceling because of pain, fatigue, etcā because I know guilt is a reflex you canāt easily refrain from. But you can reason with yourself so instead Iāll say this:
Nobody can feel what youāre feeling but you. Nobody knows the severity of what you would be putting yourself through if you were to ātough it out.ā
If you do ātough it out,ā 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 āreasonableā to endure in terms of pain, fatigue, burnout, etc.
You didnāt ask for this, you donāt 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 wouldnāt mind helping accommodate for them?
Low energy days are truly sacred, take them seriously. Please respect your bodyās signals. āIf you do not choose times to rest, your body will choose for youā 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
#rants & reflections#chronic pain rant#chronic pain#disability advocacy#disability community#disabled community#disability rights#chronic illness vent#undiagnosed chronic illness#chronic illness community#chronic illness rant#chronic illness#chronic pain problems#undiagnosed chronic pain#fibromyalgia#dysautonomia#spoonies#physical disability#chronic fatigue#ehlers danlos syndrome#pots#postural orthostatic tachycardia syndrome#craniocervical instability#migraine#cluster headaches#tmd#heds#neck pain#back pain#chronic headaches
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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?
#chronic pain#chronic illness#disability#fibromyalgia#cfs#chronic fŠ°tiguŠµ ŃŃndrŠ¾mŠµ#actually disabled#spoonie#me/cfs#cfs/me#long covid#POTS#postural orthostatic tachycardia syndrome#brain fog
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[ID in alt-text]
Bora! Sheās blasian (black and korean!) she has POTS (postural orthostatic tachycardia syndrome) and Chronic Pain! š©·š
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
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Something I wish abled bodied people would understand is that just because Iām using a mobility aid doesnāt mean Iām āhurtā in that moment necessarily. Theyāre also preventative measures. Since Iāve began using my aids at work Iāve gotten so many versions of āwhat happened to youā that I genuinely cannot keep track. Nothing *happened*, sometimes people are just disabled.
#disabled#disability#chronic illness#chronic pain#chronic fatigue#ehlers danlos syndrome#postural orthostatic tachycardia syndrome#mobility aid#mobility aid user
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When a disabled person says that they canāt do something, we donāt mean that we just donāt want to. We also donāt 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 donāt.
#chronically ill#chronic illness#epilepsy#mecfs#myalgic encephalomyelitis#pots#pots syndrome#postural orthostatic tachycardia syndrome#dysautonomia#autoimmine disease#hashimotos#disabled#disability
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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.
#disability#adhd#autism#asd#nd#actually adhd#neurodivergent#actually disabled#disabled#pots#pots syndrome#postural orthostatic tachycardia syndrome#fibro#cfs#chronic pain#chronic illness#chronic fatigue#chronic fatigue syndrome
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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
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When the chronic fatigue is chronic
#chronic illness#chronic pain#disability#pots syndrome#postural orthostatic tachycardia syndrome#chronic fatigue#invisible disability#fibromyalgia#spoonie#chronic life#hypermobile eds
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