Miscellaneous thoughts inspired by living with fibromyalgia/chronic illness. [they/them] Nerd, gamer, crafter, queer, atheist, unemployed spoonie, from the late 1900s. See my pinned post for more about me. Asks open but I don't share fundraisers. Side blogs are @disabilityaidpositivity, @chronicillnessresourcelibrary, @antiestablishmentaf, and @amateursatanologist. [Profile pic ID: an illustration of a black cat against a purple background with faint stars. The cat has red horns and black bat wings. /end ID] [Header ID: photo of a tree in front of a purple sky /end ID]
I'm here mostly to blog about my experience of living with fibromyalgia/chronic illness (which will include some awareness and disability rights content), and to connect with other people who live with chronic illnesses and disabilities, but I'm also here for your memes, animal pics/videos, sci-fi references, random facts, and other stuff!
Always happy to receive asks ✌️
About me (in no particular order)...
🛋️ I'm unemployed thanks to my chronic illnesses so I spend a lot of time at home, unable to do much. But when the brain fog lifts, one of the ways I entertain myself is finding resources to share on @chronicillnessresourcelibrary, and running @disabilityaidpositivity.
⚕️ fibromyalgia, chronic fatigue, hypermobility spectrum disorder, and some other stuff
💻 gamer (current faves: Valheim, Stardew Valley, Don't Starve)
🧶 cross-stitcher and learning to knit and crochet (when my hands aren't too painful)
🖌️ painter of Warhammer minis
🖖 sci-fi and fantasy nerd
😻 cat mum
📚 amateur history, anthropology, biology, and etymology enthusiast (I share facts that i find in my reading on @thefactcollector)
🍫 chocolate fiend and crazy in love with boba tea, bao buns, olives, and cheese
💡 I'm an atheist / non-theistic Satanist
🏳️🌈 I am non-binary [they/them] and queer, and a supporter of the LGBTQIA+ community. Anti-TERF. Anti-SWERF.
🟰 I believe in and support disability rights and equal access, intersectional feminism, indigenous rights / black lives matter / decolonisation, movements that aim to revive indigenous/endangered languages. I'm a fan of socialism, anti-corporation, and vehemently against hostile architecture and anti-homeless policies. Anti-fascist and anti-nazi.
🍁 I staunchly believe cannabis should be decriminalized.
🇳🇿 living in Aotearoa (New Zealand) as a pākehā (white) migrant, acknowledging tangata whenua (the indigenous people; Māori) and their tino rangatiratanga (sovereignty), striving to be tangata Tiriti (ally, honoring the treaty).
----------
🎁 If you like my stuff (here or on my side-blogs) or you just want to make a chronically ill person happy, this is my ko-fi (I'm saving up for a bath/shower seat, compression garments, and maybe a few other aids)
----------
My asks are open for respectful messages about pretty much anything; ask me a question, recommend a show or game, whatever ✌️
I also appreciate people fact-checking me or letting me know when I say something inappropriate or short sighted.
I don't share fundraisers, sorry.
----------
Tags:
If you're not living with a chronic illness/disability, please check out posts tagged with #for the able bodied people and #how to be an ally to people with disabilities
I've tagged content that I think would be especially helpful for people who are recently diagnosed or waiting for a diagnosis with #for the new spoonies
Anything that mentions a tool, resource, or exercise that might help people with chronic pain and fatigue I've tried to tag as #how to cope with a chronic illness
I also try to remember to tag resources as #chronic illness resources
The tag #mobility aid contains posts about what mobility aids exist, who needs them, how to choose one, how to use them, and some of my journey to get a cane and wheelchair for myself.
Posts containing notes I've taken (on anything related to fibromyalgia, chronic fatigue, chronic illness in general, health and wellbeing in general, or disability issues) from workshops I've attended or things I've read are under #FibromyalgicAF notes
Answered asks are tagged #answeredAF
----------
Side blogs: @disabilityaidpositivity, @chronicillnessresourcelibrary, @thequotablescollector, @antiestablishmentaf, @amateursatanologist
----------
This post is semi-frequently edited when I make additions or update info
Anya is live and ready to show you everything. Watch her strip, dance, and perform exclusive shows just for you. Interact in real-time and make your fantasies come true.
✓ Live Streaming✓ Interactive Chat✓ Private Shows✓ HD Quality
Anya is LIVE right now
FREE
Free to watch • No registration required • HD streaming
Managing Multiple Chronic Conditions: What Actually Helps
"Managing multiple chronic conditions is harder than managing one because you’re dealing with conditions that interact, treatment plans that sometimes conflict, and a baseline that shifts. What helps: understanding each condition individually rather than treating everything as one problem, being direct with your support network about what you actually need, simplifying your routines around real capacity, using adaptive tools without guilt, and actively noticing when things go well. None of it is a cure. All of it makes the day more workable."
Managing multiple chronic conditions isn't just harder than managing one — it's a different kind of problem. When your diagnoses interact an
Anya is live and ready to show you everything. Watch her strip, dance, and perform exclusive shows just for you. Interact in real-time and make your fantasies come true.
✓ Live Streaming✓ Interactive Chat✓ Private Shows✓ HD Quality
Anya is LIVE right now
FREE
Free to watch • No registration required • HD streaming
"“Hard” is not a big enough word for how difficult the journey of accepting chronic pain and learning how to prevent the illness from getting in the way of living. The first year for me was the most difficult and it took tons of practice."
This is what you need to read.
"If you go into chronic pain with an outcome in mind or with the idea that you will one day forget you have pain, you will most likely prolong the process of living as opposed to surviving.
I live with chronic pain every day of my life. I made some room for it in my daily life so it doesn’t get in the way of my dreams and my desire to live. I have made changes in my life and I live a certain way in order to manage pain so that it does not manage me. Everyone needs to give themselves a break and slow down their expectations. You must allow yourself to cry and to feel the feelings you feel."
I understand why folks can be against “you can become disabled at any time” argument. But, I fear it is being flattened by identity politics. Yes, we should care about someone simply because they are human. However, it’s been my experience this discourse is used specifically in regards to accessibility and internalized ableism to display the fact that disability is inevitable and ableism impacts everyone, so it’s best to embrace accessibility and de-programming internalized ableism now.
For me, it’s less ‘be nice to disabled people because it could happen to you’ and more: accessibility already benefits everyone, ableism is deeply internalized in all of us, and most people will eventually have to confront dependence, limitation, chronic illness, pain, aging, or loss of function. So maybe unpacking that fear now matters.
Also, I honestly don’t think you can fully do anti-capitalist work without unpacking ableism because capitalism fundamentally relies on it.
abled people need to get comfortable with disabled people not having the energy to "dress up"
the amount of backhanded comments I'd heard from my irl friends about how they really like the times where I wear things other than sweatpants and hoodies and I should really work on creating my own style is insane
there are some days where I have enough energy to wear the things I want to wear, but those are rare. they need to get used to that.
Anya is live and ready to show you everything. Watch her strip, dance, and perform exclusive shows just for you. Interact in real-time and make your fantasies come true.
✓ Live Streaming✓ Interactive Chat✓ Private Shows✓ HD Quality
Anya is LIVE right now
FREE
Free to watch • No registration required • HD streaming
I dunno if it's an intentional choice you're making (and if so, I'd be genuinely interested in hearing your reasoning), but just so you know, it's typically seen as best practice to *not* include alt text for images which are purely decorative (like the borders on your posts) according to the web accessibility initiative: w3(.)org/WAI/tutorials/images/decorative.
If you were coding directly, they recommend putting "" so that screen readers know to skip the image, but im not sure if that'll work on tumblr.
They actually recommend limiting alt text significantly more than I see folks doing on tumblr, because screen-readers going through extraneous descriptions can make it harder to parse the actual important information.
thanks for letting me know! i used to see a lot of comments white-knighting on behalf of visually impaired users, so i assumed detailed image descriptions were standard practice.
that resource is super helpful, i will be using it to shape the way i write my image descriptions from now on. sharing this to my blog as well, for others trying to make their posts more accessible.
It's been a long time since I got a cold and I forgot how awful they are now with all the chronic illness interacting.
I didn't even go out very often but I have a child that goes to school and spend half the week with their mother, and my partner now has a job so I guess one of them brought something home 😔
And now I feel like I've been smacked in the back of the head, I'm struggling to breathe, everything aches, and I'm struggling even more to sleep.
not trying to be an asshole but you format posts like chatgpt. idk if you are using Ai to make your posts but if you are its noticable and should probably tag it as such.
I don't use any AI for my posts. This is just how I write. ✌️
(edited to add: weird that you'd say that now when I've barely written any posts recently)
your symptoms dont have to be the most severe to be valid. your symptoms are real, and others having worse symptoms doesn't mean anything about yours. its real, its valid and it deserves treatment
Anya is live and ready to show you everything. Watch her strip, dance, and perform exclusive shows just for you. Interact in real-time and make your fantasies come true.
✓ Live Streaming✓ Interactive Chat✓ Private Shows✓ HD Quality
Anya is LIVE right now
FREE
Free to watch • No registration required • HD streaming
Human relationships are not transactional but they are reciprocal, which I think many of you with your ‘i don’t owe anyone anything’ shtick are too happy to forget
Transactional: everything has to be exactly 50/50 all the time, pay me back for the £5 sandwich or buy me something worth exactly £5, I refuse to make an effort for you if there’s nothing in it for me
Reciprocal: you were there for me when I needed help, and I’m going to do the same for you, it doesn’t matter if one of us needs more or is capable of less, because the point is not equivalent exchange but mutual care