Spoonie - Blog Posts

Patch note: references to "falling" and "falls" have been perceived as frightening. To better enable casual references and conversation these episodes have been renamed "unexpectedly sitting" and "unplanned lying down".

EMT: Do you know what causes your seizures

Me: *Struggling to find a way to explain psychogenic non epileptic seizures while my brain is fried and the world is spinning*

Me:

Me: Bullshit.

Spoon theory is great, I'm glad it was created <3333

Please reblog if you can so I can get a larger sample size

Feel free to put any clarifications in the tags (I’d be very grateful) <3

As a British person living with severe M.E., (plus fibromyalgia and some other issues), I would ask that you please sign and share this petition to get Royal Devon and Exeter NHS Foundation Trust to make accommodations for Alice Barrett, who has very severe M.E. and P.O.T.S. and is currently being treated in Exeter Hospital.

They are refusing to feed her via a nasogastric tube in such a way that takes into account her specific needs - and despite an M.E. specialist saying it's safe to do so - because it isn't in accordance with their hospital guidelines.

Alice needs help, so that she can be fed in a way that won't compromise her health, and potentially permanently worsen her symptoms.

Please sign and share this petition!

Petition · Save Alice Barrett's Life · Change.org

Edit: I paid to blaze this post, so it would reach as many people as possible, but sadly, the Tumblr moderators have rejected this, so this post is not sponsored as I intended - I don't know why. If Alice's family and friends see this post, please know that I tried! 🤷🏻‍♀️

Dysautonomia is so weird bc like what do you mean I’m sweating my ass off with this sweatshirt on but if I take it off my skin hurts bc I feel cold BUT IM STILL SWEATING AND ALL OF A SUDDEN EVERYTHINGS BLURRY???

I'm thinking about chronic illness and wondering if others can relate. And I'm thinking this might sound strange to able bodied people, but it's something I wish I had more help with. My brain fog won't let me phrase it well, but I still want to write it down.

i had a long flare there, something mysterious, left me w brain fog and migraines and fatigue for a few weeks. I'm sitting up today clearheaded enough to do some work and I'm struck again by how it's scarier to be recovering than really ill sometimes. Being really ill is horrible but it's simple and straight forward. When you feel better you're hit fully with what you missed out on and how far behind you are and trying to prioritize which part of life to pick back up with the little strength you have. N it could just be a fluke - maybe I'll be back in bed tomorrow - so if I pick something to do that can't be finished and important TODAY, if I can't pick the one single thing that's worth doing this one good day that mightn't come again, I will feel like such a fool! I'm trying to be excited to feel better, and I am excited, but there's something so simple about the acute phase... "I just have to endure" is so simple. "What if I never get better" is a simple fear. When I'm properly sick I can't even torment myself with what I would do if I felt better, because I'm too tired. "oh, I could see my friends, I could work..." but I'm too tired to want that. "If I was well again"... I can't even picture it when I'm really sick, so my life doesn't look so bad because I can't compare it. When your strength comes back, your wants come back beyond the immediate and it's overwhelming. The fears are more complicated. I have the energy to compare again, and it really sinks in how much time I've lost to this. It's like the difference between being a child and being a grown up. I don't miss being a child, I don't want to go back to that ever, but my life felt simpler then and I could kid myself (pun intended) about so many things. It's not nice that recovery is such an anxious grieving time. Especially since I never know how long it will last, I feel like I don't have the time or energy to spare feeling frightened and sorry! I should be grateful to feel better, i should be excited and grab the opportunity. But it is a grieving time and I can't help it.

Doctors are like: ughhhhh. You're confusing. Come back if you die

Just made an account on Medium so I could read this. Made it about 1/3 through and I'm absolutely hooked and excited to finish it!! But first, time for a nap.

For the longest time, I have had trouble understanding FND - specifically whether it's just a shitty diagnosis made up by the medical system to gaslight people or if it's a genuine medical condition. This essay is rly helpful and has already broadened my understanding. It's incredibly well written, particularly bc of the extremely thorough research it's a result of

Medium

Cadenza for Fractured Consciousness

A Personal History of the World’s Most Misunderstood Illness

I am one of the most medically examined people in North America. For over a decade, no one could explain why I lost my ability to walk, speak, and use my hands. Why the lightning-like headaches? Why the ringing in my ears? Test after test came back negative. Doctors thought I might have a genetic abnormality no one's ever seen before, or a condition so rare that it had previously escaped medical classification. Then I got accepted to the top undiagnosed disease research program in the world, and they told me the only diagnosis I was unprepared to hear: it was Functional Neurological Disorder (FND), a much-misunderstood condition which was once known as Conversion Disorder, and before that, as Hysteria. And that was only the beginning of things getting weird. The essay above is the product of three years of research into the history, neuroscience, and politics of FND. It touches on the many medical failures that define the history of the disorder, the pervasive sexism and lazy mind-body dualism that prevented scholars from seeing it clearly, and why - finally - a better understanding may be at hand, with revolutionary implications for how we understand human consciousness and the experience of having a body.

FND fucked my life up. This is my reply. Thanks for reading.

I finally got the tattoo I've wanted for years😁 so I always have an extra spoon for bad days🥄

chronic pain and final exams at the same time isn't fun

would love to make friends with some other chronically ill people!

some stuff about me:

i'm 19 and diagnosed with dysautonomia. i also got some chronic back pain and other stuff i'm trying to get checked out

feel free to message me if you aren't some creep :)

why is chronic illness so difficult to understand for healthy people?

like "yes, i am ill everyday"

"no, i will not be getting better soon"

me: "i'm so fatigued and my brain fog is pretty bad"

healthy person: "stop complaining, i'm tired too"

your "tired" is not the same as my fatigued! sleep won't cure me, this is not how it works!

my back pain is so bad today idk how i'm supposed to do things or even sleep!

i'm already doing physio therapy so idk what else to do about it at this point

really tired but making sure to stay awake until the point of exhaustion so i hopefully actually fall asleep

recovering from a simple cold really takes incredibly long when you have a chronic illness...

like please i wanna be able to do at least some things again

any tips for what helps with insomnia?

having insomnia when having a chronic illness sucks!

my chronic illness flares up cause i don't get enough sleep, but i don't get enough sleep cause of my chronic illness

"omg do you have a hangover?"

nope, just a chronic illness

had to cancel so many plans with my friends recently...

do they seem mad? -nope

did they say that they are mad? -nope

do i still think that they are mad? -absolutely

please if you're sick stay at home if possible or at least wear a mask!

... even if it's just a cold some people don't have the best immune system and i am tired of being sick on top of my chronic illness every other week

barely having symptoms for a few days made me think i was cured... turns out that isn't the case

how are you supposed to tell people who you recently became friends with that you sometimes need to use a mobility aid?

is there even a way to make it not awkward? because it shouldn't be awkward

there are things i need to do, but i can't cause i'm sick

pain and suffering, pain and suffering, pain and suffering, pain and suffering, pain and suffering, pain and suffering, pain and suffering, pain and suffering, pain and suffering, pain and suffering, pain and suffering, pain and suffering, pain and suffering, pain and suffering, pain and suffering, pain and suffering, pain and suffering, pain and suffering,

had a low fever for almost a week now, but am refusing to see a doctor cause "not like they would do much"

and that's on doctors constantly dismissing people with chronic illness

feeling a flare up coming, but trying to push it down cause there is stuff to do... knowing very well it will do nothing... if anything it'll make it worse

having to wait a long time for a doctors appointment sucks, because until i got proof i am not getting any accomodations from my school and it's affecting my health even more