Hey, quick question—why so much pain all the time? Why so much ouchie owwie oh no it hurts?
Edit: Hey, I can't believe I have to do this again, but this isn't about your OCs or favorite characters or whatever. This is about actual real-life people with physical disabilities. Do not derail.
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I've been shadowbanned to tumblr hell on the account I've had since, like 2015 or whatever. I've contacted tumblr numerous times, but they do not care. I cannot message, nor comment on posts, nor find my own damn posts. I'm going to have to do some serious work to maybe properly archive/catalogue that tumblr blog bc it has a lot of good writing from me and it's deeply upsetting that my own posts are now buried for me. I'd like them to still be findable. Idk if imma repost that stuff here or what.
If you care about me, maybe follow me here as I can actually interact with you here. Feels like as I was finally building a community on here, it got taken from me. Trying not to feel defeated by it. The sun rises again, etc.
Something I don't see talked about a ton in the chronic pain community is how physical pain stresses out the body and mind. It's harder to think when in pain (brain fog), and because your body is under a lot of stress, it can lower the threshold for other stressors.
I know that if I'm in pain, I can't handle as much stimulation or mental/emotional stress. It's a lot easier for me to break down crying on my high pain days—not just bc I'm in pain but because it's harder for me to process things emotionally while my body is under stress from pain. For the same reason, it can be difficult to think as quickly or clearly. I can even have a hard time speaking.
I feel a lot of pressure from society to push through the pain. To keep going despite how hard it is to think or to process the world or my feelings while I'm in pain. Today, when I was in lots of pain, my friend told me to relax, to take it easy. And it was really, really hard. I needed so much reassurance that I didn't need to keep pushing. That everything would still be okay if I stopped treading water and just floated instead.
I'm not totally sure what my point here is, if there is any. But I think we need to be especially kind to ourselves on high pain days. And we need to let ourselves know when it's time to rest, even if it's the last thing we want to do.
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I know fellow chronically ill people will get it, but I can't even begin to describe to my able-bodied friends the mindfuck it is to live in a disabled body while also living in a country like the United States.
Bc of the societal upbringing in this nation, my brain is constantly asking: "What is it I'm supposed to do right now? What would be the most productive thing I could do with the (lack of) energy I have?" And the answer as a chronically ill person (I believe I have me/cfs?? and I am diagnosed with Fibro, but I'm certain this overlaps with other illnesses)-- the answer as a chronically ill person is almost always resting.
The most productive thing I could do—the absolute best use of my time—is to rest. God, how unsatisfying of an answer is that? You're telling me the best thing I could do, and in fact, the thing I must do to take care of my body is absolutely nothing. What kind of bullshit is that?
And yet, it's the truth I'm hit with on a consistent basis. I do other things too, of course. I read and watch things online, I write and journal, I text and call my friends. But the majority of what I'm to do is rest. Not just physically, but mentally too. Somehow, despite every bone in my capitalism-raised body resisting—wanting to be the beacon of productivity, even inside my broken body—the truth hits. My body demands I rest.
Maybe I'm lazy after all. And I truly just don't want to contribute to society. But I know that's just internalized ableism. And I know it couldn't be further from the truth. I want to spread love and laughter and light. I want to resist oppression and fight for the freedom of every peoples. I want to make art, I want to travel. I want to experience the world.
But my job is to rest. I can't do any of those things if I don't rest first. It is what my body demands of me, and I must listen. I must take care of it if it is to take me anywhere or do anything at all.
It's such an entirely different reality than what any of my friends go through. My body gets so tired so quickly. And I know it can very, very, slowly get better as I try to change the circumstances around me. I can start to do incredibly adapted gentle exercises to strengthen my body (obvi this isn't true for everybody, but I think it's true for me). Swimming would be good bc it's so gentle on the body. But I still have to be very careful, and I still have to rest the majority of the time if I want to get to a better place physically.
Eh, I think I've gotten off track a little. Point is, disability is a threat to capitalism bc we are (often) people who can't hold a job and yet we must be taken care of despite making little to no money. Our existence proves a major flaw of capitalism. It simply will not care for anyone who it can't steal labor from. Yet we continue to have value outside of its narrow confines. We are teachers, we are lovers, we are leaders, we are engineers, we are artists, we are everything possible under the sun.
We hold value and deserve to live full lives despite having no value to capitalism.
And also it's okay to rest. Rest is valuable, rest is productive.
I think I just get really impatient with my body on Rest Days bc like. Well, none of my friends have to do this!! So why do I?? But I'm me, and this is what I gotta do to take care of me.