#chronic illness chronicles

[dove-darlings]

btw im still rotating the thought of getting a rollator in my head

[radley-rambles]

.... The Horrors brought me a gift (chewed up stick deluxe) and I was gonna get you all a picture BUT fell over as soon as I stood up and performed an excellent lithobraking maneuver because my body is a desecrated post-iconoclasm temple. And he freaked out and ran away 😭

So here are some old pics of him inviting tummy rubs (DON'T FALL FOR IT!! EVIL!!! EVIL!!!!!) and committing war crimes against my dressing gown tie. Enjoy!

[ego94]

your post was from several days ago but i just wanted to let you know that i also struggle with joint pain from IBD (specifically UC) and it’s so annoying that so many people don’t even realize how bad it can get, to the point where even my doctors didn’t make the connection or help me treat it until after i was diagnosed lmfaooo. anyways if it helps at all just know you aren’t alone in feeing that way + i truly hope you can find some relief soon <3

my doctors have told me incessantly that once i clear up my depression it will allllll go away lol so yes i feel you too and thank you for sharing this with me, it makes me feel very seen <33

i did recently have my colonoscopy and apparently IBD isn’t the issue, despite how dead set they were on it, but my symptoms remain and i don’t see my GI until april </3. i’m going to ask my PCP for a ttg antibody test for celiac when i see him in about 3 weeks, so there’s still hope and possibly an explanation for the joint pain as well!!

but thank you for the well wishes and for making me feel less alone, i appreciate it so so much 🩵🩷!!

[justsomerandomgay]

i remember being ten years old and wishing to die rather than experience the pain i was in yet still my parents and my doctors didn’t believe me. sometimes it just hits me. that wasn’t a normal experience for a ten year old, was it?

[dodger-thirteen]

"Did you see a doctor?"

What the fuck is a doctor going to do about it besides charge me money to wait for an hour just to shrug at me?

[thechthonicherbalist]

A belated Hiatus Post

I have been rather inactive for the past 3 months & received a lot of notifs about it. I won't be able to answer all of them, sorry for that. Here's my attempt to try & lay open a little why I've been gone and what the coming months will bring. I have pondered long how to write this in the least hurtful way, while also expressing my own emotions & experiences.

Those of you, who have followed my journey on pretty much any other page, probably know that I'm chronically ill with autoimmune disease, homebound since over a decade, that I got cardiovascular damage as a side effect & that since 2021/22 my condition severely worsened & often leaves me mostly bedridden for weeks at a time. I shared about the numerous surgeries & medical treatments I had in the past year, how I've slowly lost the ability to digest food before & require parenteral nutrition via an IV port since September '23. As well as how I tested positive for GI cancer in March. I've been waiting for an appointment to remove growths, cauterize multiple ulcers & take tissue samples to test for malignant cells since & been gone for a 6 week long hospital stay with a number of surgeries after September 16th & was taking time to recover from that since.

My mental health has gone really bad in the past year as well, for a number of other reasons but also this. I've experienced the biggest cptsd relapse I've had in the past 20 years in the past 14 months. I went from stable & happy, despite my illness and a low-contact situation with family, after almost 2 decades of therapy & inner child healing to escape and recover from an abusive childhood home; keeping my cortisol low and my nervous system calm to prevent further autoimmune flares & to be able to cope with my fatigue enough to do my work and happily make art and write... ...to the point where since about a year I'm in the middle of a full blown relapse of complex PTSD, severe depression and anxiety that has little to do with my offline life. Despite numerous attempts to resolve or remove myself from the underlying situation in order to preserve my well-being and safety, requesting acute intense psychiatric care during hospital stays more than 8 times, as well as consulting regular therapy sessions in social psychiatric help centres since January and ultimately return to therapy since June, I've only started to experience relief more recently.

🌟⭐🌟⭐🌟⭐🌟⭐🌟⭐🌟⭐🌟⭐🌟⭐🌟⭐🌟⭐🌟⭐

And this is where the good news start!

🌟⭐🌟⭐🌟⭐🌟⭐🌟⭐🌟⭐🌟⭐🌟⭐🌟⭐🌟⭐🌟⭐

In the past 2 months, I have finally been able to take care of myself, my work, household and hobbies & properly rest again, without constant exposure to anxiety inducing situations. And while the time in which I had surgery was still horrendous for a number of situations related to this, I have at least started chemotherapy now, without having to constantly fear that something terrible will happen again when I'm most vulnerable right before, during or right after my treatments or other crisis in my private life. So far the treatment is effective, even though I have all the unpleasant side effects that come with it. Overall my life is much calmer now and I don't live in constant anxiety anymore, which is a huge win for me. Moving forward, I want to return to doing things that are good for me & were originally intended for this blog, now that I can finally rest, heal, take care of my health and actually thrive & be productive at my own pace in peace.

So despite the fact that I won't be super active, here are my plans for the future:

Make more original art and art dedicated to my own passions and projects again and actually post them. I had started a series on learning to do folkloric art as well as a series on intrudcing MBTI personalities, glimpses into their lives, lots of research, writing small articles and doing my own art for this, in 2022.

Return to my passion projects from 2022/2023 (all NSFW): - My 9-pieced fanfiction series "Lestat's Lovers" and Art for it - My 8-pieced fanfic series "Things I didn't tell Thetis" - My 4-pieced series "To love a thing Death can touch" I have wanted to continue writing for a long time. The plot for the first one has been with me for 17 years & is deeply intertwined with my internal universe. I've always hungered to write & share it with the world with the art I used to make for it, but never finished or even started. It was devastating to be unable to do that for so long.

Post about my journey as a native practitioner of Bohémien Romani Culture, Slavo-Celtic Shaman-/Druidism and Kabbalistic Judaism, as well as the taught believes of Hellenism, Christianity and Christian Satanism in the past 20+ years, present and future.

Translate & publish the vast knowledge I've assembled about herbs & other natural substances, their uses in historic and folk medicine, magic, alchemy, spirituality, etc, their historic significance and much more. It's been a big interest since my childhood, I was taken on hikes to collect herbs & materials for homemade remedies and other things and taught how to make them from scratch, since I could be taken out in a baby sling.

Make blog posts about my culture, including its folklore, mythology, rites, magic etc. and post them here. (I borrowed books about this from the library, so I can give reading recommendations and cite interesting sources! :D)

Create a side blog about my music recommendations, as I'm very passionate about a lot of genres and want to keep things more sorted. <3

Stop being scared to make posts for my mental health & healing journey again, even if they might still get misinterpreted. I can't take the responsibility to manage others' perception & emotions or literally anything else they should work out themselves.

[aldoodles]

Live footage from a corner of the annual ‘really tired 12 year olds who could kick my butt w a sword and also need a vacation’ support conference. Percy and Gregor are bonding about being New Yorkers and Hiccup can understand what it’s like to fiercely love a home others might find hostile or weird.

[crowrrupt]

Ideal Beach Day

[twitter]

[whirling-ghost]

uber automatically suggests my gp and the local hospital as destinations whenever I open it

[fairymute]

hiya!! welcome <3

you can call me fairy. welcome to my little tumblr blog!

expect my thoughts, infodumps, poetry or whatever this turns into!

about me ^.^ ->

i’m 17, i’m a writer, a linguistic enthusiast, artist, and a bunny mom❣️ (i also like sewing, crochet, and photography)

i’m also severely ill and disabled. i’m a power chair user but i’m 98% bedbound. my health became worse than its ever been this fall so i need an outlet :D

i’m autistic and ADHD, with the bonus anxieties and depression, as well as OCD and selective mutism.

i’m a very sensitive person (fluttershy is literally me) but i’m also pretty introspective and supposedly, eloquent.😄 talking is hard but i think,, a lottt

i love strawberry shortcake, sanrio, my little ponies, tangled, frozen, lunar chronicles, AKOS, steven universe.

i play minecraft and stardew valley, and i also enjoy watching historical costuming youtube and reading disability fiction :)

thx to anyone reading ^.^

ps. getting questions would be so cool🥰

oh! and i’m an ace lesbian! 🩷

[dove-darlings]

disability aides make you look hotter/prettier/more handsome/etc.

[girlish-in-pain]

Seeking advice: new wheelchair user

I will be using a wheelchair semi-regularly the next month to see if it will help reduce pain flare-ups / baseline pain and to figure out if it's helpful for me.

Tomorrow is the first day and I am going to uni and therapy. I have only used a wheelchair a couple of times but I'm comfortable with folding it and such as my dad's disabled and it's his wheelchair I'm borrowing. In theory I know how to maneuver around but I'm nervous about it.

Do any wheelchair-users have tips/advice for new wheelchair-users?

Extra info: it's a foldable wheelchair, brand is Quickie. I'm nervous about tipping backwards (no anti-tip), going up and down curbs, taking the metro, painful hands/arms/shoulders.

[whispers-into-the-void]

stuck in the "need music to get stuff done but all music (even whale sounds) hurts my ears so i'm just stuck here battling between the anxiety of pending work and the physical pain of sound.

[justsomerandomgay]

abled people don’t seem to understand why i try to avoid getting a cold like it’s the plague, like mate im literally chronically ill, i don’t need another illness on top of it!

[dodger-thirteen]

Waiting to see the neurologist who specializes in...pain, I guess? We will see if she has anything to say that can help me.

This year has been very rough for me. More updates to come (mostly for my own records/recollections).

[thechthonicherbalist]

My most meaningful Posts this Year:

~ Art ~

This is almost all my art of this year. Or well. All that isn't private.

🎻Curves & Melodies (Pictures 1 & 3) 🎻

🎸🎶 Monsieur Lestat le Rockstar 🎶

🍒 🍑 Mon Cher's Assassmint 🍑 🍒

~ Experiences ~

Just some posts about some positive experiences this year. 🥰 I hope to share lots more in 2025.

🍄 Mushroom Microcosms ~ Vol 1. 🍄

🎄🎁Cute Artsy Christmas Gift🎁🎄

🍂🌼 New beloved cozy Game 🌼🍂

~ Spiritual ~

Prayers and Posts on Gods! There's more smaller ones and loooots I put on papers on my altar and in the prayer channels of some groups. But for here, these are the most important.

🛡️ 🦉 Who is... Lady Athena? 🦉 🛡️

🎶 ☀️ A Prayer (to Apollo) ☀️ 🎶

⚱️ 💀 A Prayer for Death 💀 ⚱️

~ Other good things this Year ~

🎶 Karaoke and movie nights with friends 🎮 Playing Snap, Pico, Jackbox, Stardew & other games with friends 🔮 Tending to crystals in a 14th century building for work 📚 Reading IWTV again and finding all the overlooked Overlaps to the show with an expert 🥰 🍵 Finally drinking tea and water in big quantities again 🧃 Finally drinking soda in tiny quantities again 🍜 EATING SOUP AGAIN 📺 Cozy Anime time with bestie. 🥰 🏥 Good Healing Spaces and People 🥁 My very own Druid drum!!! 🕊️ Finally enough peace and quiet to take care of life, nervous system, health & do some art & writing without fear of new hurts. 🥲