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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
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The pity is what gets to me. It’s there in the assumption people frequently make that simply because my body doesn’t work like theirs, my life must be a mixture of boring and tragic. That I cannot possibly have a fulfilling job, or good friends, or anything to be happy about.that my life must be one long, futile quest for the magic elixir that would make me whole, functional, ‘normal’ again. It’s not hard to see where this belief comes from: every film and book and article has convinced them that being sick is a fate worse than death. Indeed, they tell me that in my place they’d kill themselves.
Because this pity leads to all the other discrimination I face, I have no choice but to spend my days convincing random strangers that my life is worth living.
I am proud of my body. It not only exists but thrives in a world that isn’t built for it, and it confounds expectations at every turn. I do not buy into society’s bullshit laws that say disabled bodies cannot be loved and cherished, or that disability and beauty cannot coexist, or that disability precludes happiness. I know now that there is nothing ‘wrong’ with my body, and I no longer compare it to a hypothetical non-disabled form of itself. It is not a knock-off version of a perfect self.
#chronic illness#grief#chronic pain#spoonie problems#disability#invisible disability#disability advocacy#spoonie
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youtube channels for the book girlies



♡ a frolic through fiction
♡ alexa raye
♡ alexandra roselyn
♡ anda kent
♡ ashley’s little library
♡ basically britt
♡ becca and the books
♡ briddy
♡ carmen gilfraguada
♡ coverswithcassidy
♡ destiny sidwell
♡ ellen catherine
♡ fruitful reader
♡ gabbyreads
♡ hailey hughes
♡ haley pham
♡ heather mclarry
♡ jack and the books
♡ jaime fok
♡ jodie
♡ katie is reading
♡ katherine karas
♡ kendall watson
♡ larry
♡ leora aileen
♡ lexi aka newlynova
♡ maditales
♡ melreads
♡ peachapplebi
♡ pursuit of the truth
♡ rachel catherine
♡ reading with asha
♡ read with kate
♡ reading with meg
♡ sara carrolli
♡ taylor ann wright
♡ tia chu
♡ the book leo
♡ withcindy
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💗📑STUDY LIKE YOUR FAVORITE CHARACTER💗📃










Source : Pinterest
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POTS Medication Vocabulary
after about the third time a doctor prescribed a medication that made my POTS drastically worse, and about three doctors visits past giving up on being an easy patient, i started asking my doctors the following questions whenever they prescribed a new long term medication:
is this medication a hypotensive? (will this medication lower my blood pressure?)
does this medication have a risk of tachycardia? (can this medication raise my heart rate?)
is this medication a diuretic? (will this medication dehydrate me?)
can this medication cause hyponatremia? (will this medication cause my body to lose salt?)
your doctor likely doesn’t know all of this off the top of their head for every medication, but they should know the most common adverse reactions. some may simply tell you they have no clue. i still think it’s worth asking to force them to consider these mechanisms.
for additional consideration:
Keep reading
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Andalusia - Lisa Marie Basile / Sharp Objects - Gillian Flynn / Runs in the Family - Amanda Palmer / unknown / Hate To Feel - Alice In Chains / The Lion In Winter - James Goldman / Letter To My Rage: An Evolution - Lidia Yuknavitch / Rupi Kaur / The Unbearable Lightness of Being - Milan Kundera / Amanda Palmer / Easier Than Lying - Halsey / Playing God - Paramore / Nancy Lee / On Earth We’re Briefly Gorgeous - Ocean Vuong / Enough - Suzanne Buffam / Antigone (Sophocles / trans. Anne Carson) / Family Tree (Intro) - Ethel Cain / The Chronology of Water - Lidia Yuknavitch / Untitled, Jasmin R. / When Doves Cry - Prince / I AM ANGRY BECAUSE OF MY FATHER - Halsey / Courtney Love prays to Oregon - Clementine Von Radics / unknown
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I find #KarwaChauth problematic.
Placing men on a pedestal on the basis of primordial gender roles, separating women on the namesake of 'marital status '.
And added with this is the cis- heteronormative narrative of society as ideal.
Your partner aka generally a male here fasting with you, Doesn't make it any cuter.
You are still ingesting patriarchy. You are still practicing a century old ritual in the name of love.
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Julius Caesar - easier to find men who will volunteer to die, than to find who are willing to endure pain with patience
What will you chose if life is crumbling/exhausting every moment of every day.
Life shouldn't feel like a sisyphean task.
What's the breaking up point anyway?
#complex regional pain syndrome#crps#cripple punk#grief#dealing with grief#chronic disability#chronic illness#severe pain#burningpain#invisible disability#actually disabled#grief journal#postural orthostatic tachycardia syndrome#disability advocacy#actually chronically ill#chronic illness flare
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Just a reminder that people are allowed to grieve & process difficult feelings. In those moments, they don’t need a reminder to be positive or find the silver lining. People generally know how to do that when & if they’re ready. And expressing negative feelings doesn’t mean we lack positive ones. It just means we acknowledge the hard ones too.
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I am on #rituximab since 2 years. last 3 mnths have constant infections going on. Chest infection, uti , throat infection etc. already did 2 rounds of iv antibiotics. I think my igg levels are low ?
what tests I need to do to find out what is going on?
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ACCORDING TO DOCTORS LIKE FREUD AND CHARCOT, WHEN it comes to the story of their own bodies, women are unreliable narrators.
According to me, if this is true, it’s largely because of doctors like Freud and Charcot.
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common myths about migraines (AKA if you get headaches regularly, please seek treatment for migraines)
"i don't have migraines because while i get them several times a week, it's only when i am hungry or dehydrated."
those are probably migraines. thirst, hunger, sleep disturbances, or any disruption to routine are common migraine triggers.
"my headaches are specifically barometric related, i get them when the weather/altitude changes."
those are probably migraines. barometric pressure is a common migraine trigger.
"i get headaches all the time but ibuprofen gets rid of them so they can't be migraines."
that's not true. ibuprofen works great at relieving migraine pain for many people.
"my consistent headaches are tension headaches. i feel them originate in my neck/shoulders."
those are probably migraines. muscle tension is a common migraine trigger.
if you are regularly getting headaches (once a week or more), you are likely getting migraines. in fact, a good rule of thumb if you're consistently getting headaches is to treat them as migraines until you can rule out migraines. that's how common "chronic headache = migraine" actually is.
migraines are a neurological disorder wherein pain is one symptom. pain is often the MAIN symptom, and the most noticeable symptom, which can make diagnosis tricky. other symptoms of migraine include:
fatigue
nausea/vomiting
digestive issues
visual disturbances (auras)
sensitivity to light and/or sound
mood changes
brain fog/cognitive changes
ringing in the ears
dizziness/vertigo
numbness/weakness on one side of the body
this list is NOT complete, but is a starting point. i really like the comparison to a hangover. if you generally feel hungover when you get a headache (without having consumed alcohol), that's a classic migraine presentation.
so many people suffer from migraine and don't even know it, so they aren't able to advocate for themselves to get treatment. there are great new migraine treatments on the market! if you're able, please seek treatment for your migraines. a better quality of life is possible.
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Thw ableist model tells us that the human body is a work machine whose value is determined by its production—like a toaster that can toast six slices of bread instead of just the usual two. The more you do, the more hours of overtime you work, the less sleep you get, the more duties you fulfill, the faster you get the work done, the less help you require, the more you’re worth.
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The single most universal trait we all share is having a body, and all of us, no matter what, are susceptible to the frailties of that body. All bodies age, weaken under the power of germs, viruses, diseases, pain, and injury, require intervention and maintenance, rebel and go rogue. All of our bodies are at risk (some much more than others), and there could not be more at stake. This is inescapably true—and yet. Not all of our bodies have the same access to care, and let’s be clear: all of our bodies deserve care.
#chronic disability#chronic disease#healthcare#acesstohealthcare#medical ableism#invisible disability#sick bodies#disabilities#accessibility
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