Since it's fibro awareness month, I'd like to give a special shout out to all my fibro friends!
Here's to the people who were diagnosed when they were young, and had to sit out on everything other people their age could freely do
To my older fibro friends, who got diagnosed later in their life and were constantly told it's "all in your head"
To the people who have their diagnoses ignored or belittled
To the people who have no support and feel alone
To the people who have amazing friends, family, and doctors who actually listen
To the people who keep telling themselves, "I just have to make it through this day," every day
To those who lay on the floor with invisible pain, no one else can begin to imagine
To my friends who wildly swing from a 3 to a 10 on the pain scale
To everyone who feels like their skin is burning, just from wearing clothes
To my young and old friends who use mobility aids
To my friends who wear compression supports
To my friends who can't do basic tasks, such as showering, brushing your teeth, or eating because it feels like you've been set on fire
To anyone who hasn't gotten a diagnosis yet, but you just know something isn't right
To everyone who feels as if there is no end in sight
May your pain never be a ten, may you have heating pads, a comfortable bed and a nice cup of tea to help you feel just a tiny bit better. I see you, I hear you, and I am with you through this hell of a journey.
TW sleep deprivation, derealisation, depersonalisation, hallucinations, suicidal thoughts
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Can we talk about the effects of spending all of your formative years dealing with chronic pain? About what comes with it besides "just" the pain?
I used to routinely go days without sleeping. And I don't mean the way some people say they "didn't sleep at all last night" when actually they did sleep 2 hours. I mean no sleep at all for 3-4 ish days, I'm not sure bc my memories from that time are fuzzy (wonder why). The pain kept me up night after night. And it wasn't until the overwhelming urge to sleep finally won over the pain that I would be able to sleep.
Do you know what happens when you go without sleep for too long?
At first, you're just more tired than usual, it gets harder to concentrate, you get snappy easier. Then it'll feel like everything is too loud or slightly shushed like you're in a bubble, it's hard to focus your eyes properly, the ground and the walls get squiggly. Obviously, the pain you already have gets exponentially worse but also different, heavier.
If you are awake still, you'll start to have micro sleeps. That's when your brain shuts down briefly for a micro second while you're awake bc it fucking needs to sleep. Time feels weird, stretching and shrinking in on itself. It won't feel real. You won't feel real. You'll forget basic shit like your own name.
It varies from person to person how long you have to go without sleep before the visual and auditory hallucinations start. But if you're awake for long enough, they will start. Whispers of your name when you're alone, songs playing when there's no music on, shadow people in your peripheral vision.
Maybe you'll think about killing yourself just to make it stop. Maybe you don't even think killing yourself would mean death, but instead you belive you'll wake up and everything will be back to normal. Your ability to reason, to think logically will twist.
Eventually, the urge to sleep will be greater than the pain and finally you will get to rest.
I understand all too well why sleep deprivation is used as torture.
In what universe does experiencing this countless of times when you're a literal teenager not affect you when you're an adult. Even when it doesn't happen anymore bc of semi proper pain management and meds to sleep. It haunts me. Still.
Reblogging so I can find it again!!
The “getting it done in an unconventional way” method.
The “it’s not cheating to do it the easy way” method.
The “fuck what you’re supposed to do” method.
The “get stuff done while you wait” method.
The “you don’t have to do everything at once” method.
The “it doesn’t have to be permanent to be helpful” method.
The “break the task into smaller steps” method.
The “treat yourself like a pet” method.
The “it doesn’t have to be all or nothing” method.
The “put on a persona” method.
The “act like you’re filming a tutorial” method.
The “you don’t have to do it perfectly” method.
The “wait for a trigger” method.
The “do it for your future self” method.
The “might as well” method.
The “when self discipline doesn’t cut it” method.
The “taking care of yourself to take care of your pet” method.
The “make it easy” method.
The “junebugging” method.
The “just show up” method.
The “accept when you need help” method.
The “make it into a game” method.
The “everything worth doing is worth doing poorly” method.
The “trick yourself” method.
The “break it into even smaller steps” method.
The “let go of should” method.
The “your body is an animal you have to take care of” method.
The “fork theory” method.
The “effectivity over aesthetics” method.
I've been dealing with some of the worst pain of my life for the past 6 ish months. Knowing it could have been avoided if my pain doc had not decided to stop one of my medications is bittersweet. If she had only listened when I told her the pain was worse. But she didn't care. She simply told me to try not to think about it. I should have fought harder but I was so exhausted and dissociated. I've finally started treatment for it again, I just hope it works fast. I'm so tired...
It's so frustrating that my neurologist is so clearly in over his head. To my face he's denying that there's any uncertainty in the diagnosis he has given me and is blaming anything that doesn't fit on my mental health. But on paper he has gone back and forth between two diagnosises for months now. He is switching between the two every time he writes in my medical chart and when I ask him about it he denies that he's unsure. I can't fucking wait to start af the headache clinic
It is the time of the year again where all the finalists are fighting for the first place, except, of course, Germany and the UK who will keep competing for the last spot.
When I go to the doctor, they hand me paperwork with a chart to locate my pain. I can’t pinpoint it. I “X” my whole body. My entire life.
— Glenis Redmond, from "I Stay Sick," The Listening Skin
you do not deserve your pain
you did nothing to deserve your pain
24, they/them, nonbinary lesbian, disabled. Studying medicine, working on my internalised ableism, prioritising finding out what I like to do. I write, ish, or try to at least and that's something
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