#chronic diary

[mimiswitchywrites]

Has anyone got like a folder of info about their chronic illness that they give to their new gp or medical professionals to explain your history? I want to put one together but I have no clue where to start or what to google for inspiration

[grendel-menz]

I feel bad for being upset with my body and autoimmune disease

[chronically-mars]

I never truly knew the meaning of friendship until I became chronically ill and disabled. When my health declined I had people leaving left and right because I couldn’t keep up with other teenagers. I stopped having people check on me, I stopped getting invited to stuff, stopped being included, until I just got left behind. Now as an adult I found friends who check up on me, make sure whatever we do is accessible to me, always making me feel included, they are my support system.

Check up on your chronically ill and disabled friends, keep including them in stuff even if they have to end up canceling it. Being excluded for something you have no control over is horrible and no one should go through that.

[goat-boots]

I copy pasted parts of this but I do hand letter everything, because while I'm trying to work easier as I'm chronically ill, I am still chronically stupid

[bpdjirai]

reaching out for help is extremely hard. i want to, but everything in me screams that my problems are too intense and i need to go through this alone.

[externalmemorycomic]

(If you wanna read more comics, I’ve posted over 400(!!!!) of them on my patreon where you can read daily comics for just 3€ a month! I use my patreon income for bills and stuff and any contribution makes a really big difference. Check out the link in my pinned post if you want to join!)

[gloomydiary]

life is overwhelming me

[sevenrenny]

Recently a relative asked me why I'm 'suddenly' always sick and that I was so healthy as a kid.

I was never a healthy kid. I was always in pain, but nobody believed me. I complained I had moments of dizziness, momentary visual blurriness and blindness, moments where I couldn't balance myself, and intense migraines so bad I fantasized popping a hole in my skull hoping that would get whatever was hurting me out of my head. I had days where it was just brain fog, but I was too young to know the word 'brain fog'. I'd have days where I was in so much pain I'd vomit.

But I got scolded for 'faking it' for attention or to get out of school. I got punished for 'being lazy'. So little by little, I learned complaining about constant pain that made me suicidal would make things worse for me. People punished me for telling them I was hurting, so I shut up.

Even when I became quiet about it, there were things I couldn't hide and my family rug-swept them: I passed out at school a few times from intense pain. I had multiple intestinal issues my family told me were normal, that 'it happens to everyone', telling me that 'Your dad had that happen so many times' while chuckling like it was funny. Every time, they waited for me to 'stop being dramatic' until I started screaming and writhing on the floor and they finally got me to the ER, scolding me the whole time for 'not saying anything sooner'.

During one of those visits, a doctor found a large tumor I was choking on. He found it by accident when he was putting a tube down my throat. I'd been having trouble breathing, but my family accused me of lying, and I'd started to think I was imagining it. Upon discovering the tumor, my mom's reaction was to scold me for giving myself a tumor.

After the tumor removal, the doctor had told her something seemed odd, and he talked with my mom for a bit but I can't remember what they said. We never went back to this doctor. When I asked my mom about it later, she told me the doctor was stupid and he had no idea what he was doing. (It was in my 20s when I went to check on my intestinal issue that the doctor told me he suspected I had gastroparesis, which he later confirmed it was.)

I struggled with classes because of the combination of undiagnosed medical issues, undiagnosed ADHD, undiagnosed dyscalculia, and having panic attacks (later got diagnosed with c-PTSD). My mom threatened to marry me off or kick me out of the house for almost failing math. I was sworn at, told horrific things that still stick with me (and the rest of the family blamed me for 'being lazy' and making her angry with me). I was a kid and couldn't understand why existing hurt, why, if it was so 'normal' to be in consent agony, everyone else seemed to not be struggling like me. I couldn't wrap my head around why everything that seemed so easy for everyone else was almost impossible for me.

It wasn't until an online friend asked me if I had some sort of disease because I was constantly in the hospital. I told her, "No, not really. What's the average number of times someone's in the hospital?" She said, "Renny, I've never once been to the ER." She was older than me. It was then that it clicked for me. I'd been so convinced that all of this was normal, that I was behind everyone else in life because I must be just a weak person because I was so behind even when I gave it my hardest.

I wasn't behind because I was weak. I was behind because I was never given the assistance I needed.

As soon as I became an adult and financially independent, I started seeking medical help. Got diagnosed with severe chronic migraines and other illnesses typically comorbid with chronic migraines and gastroparesis. (There are some issues I can't get medical help for in my country, so those will have to wait). I'm on medications now. Because of gastroparesis, pills didn't work for me too well, so a friend taught me how to use autoinjectors. I have friends who actually help me, give me advice, drive me to my appointments, and just be there for me emotionally.

Being medicated has made being alive so much more bearable. I can actually live my life now. Yes, I still have days where I'm in pain (not just migraines, but my other conditions, most of which don't have any treatments to manage them) but it's such a massive improvement from where I was before. I'm happier. I go to therapy. I found people I can talk about my pains and conditions freely to without being told I'm faking it or lazy. I don't work myself to the bone anymore; I shouldn't be giving my 100% to a job that refuses me accommodations when I'd need most of that to manage my health.

I'm back to complaining about pain because, before my family trained me to shut up about it, I was doing it right from the beginning. I'm supposed to complain about pain. Just because I can talk about it freely now, doesn't mean I was never sick before. Just because I'm on medications now, doesn't mean I didn't need them years ago.

I'm happier now as an adult. You just don't like that I'm visible about my illnesses now. It makes you uncomfortable that I self-administer injections, that I talk about my health the way that I want to. The thought of chronic illness makes you uncomfortable; you liked it better when I was quiet. You'd rather I don't find diagnoses for my illnesses, because, in your logic, if I don't go get the diagnosis then I'm not sick.

I was never a healthy kid. You just don't want to admit you went along with the rest of the family to abuse a disabled kid for being disabled.

[witchygirlgray333]

Journal prompts / ideas

Poems (either ones you've written or just ones you enjoy or connect with)

Book review

Film review

Write about your day

Collage

Vision board

Habit tracker

Calendar page

Notes from something you're learning

Quotes you like

Draw some outfits you like

Search up creative writing prompts and do those

Meditate and write down your thoughts before / during / after (I don't do this everytime or sometimes I'll only write afterwards but when I write before, during and after it's always really interesting to read back on and see how much has changed)

Stickerbomb page

Films to watch

Books to read

Wishlist

Bucket list

Highlight of the day (I like to have a page in my journal where I write a short sentence of my favourite thing that happened that day, it's nice to look back on and it's nice especially for days when I'm not feeling well enough to do a longer entry)

Gratitude list

Random thoughts

Drawings and sketches (I'm not even good at drawing but I love drawing or sketching in my journals and just expressing myself)

This one is more for chronically ill people but making notes for doctor / hospital appointments which helps so much! I have severe memory loss so a lot of the time I'll turn up to an appointment and have totally forgotten about anything I'd hoped to say so this has been a total lifesaver

Along with what I said in my last point about living with severe memory loss my whole journal works towards helping me deal with living with the memory loss. I'll probably do another post soon about more in depth ideas for journaling to help life with memory loss but I write down SO MUCH. I've got to do lists, a calendar page, my night routine (I'll also have my morning routine written down once I've actually worked one out!), things I need to do everyday (such as brushing my teeth, washing my face etc), contact info for people I'm close to, labelled photos of my loved ones (it can be really scary when I don't recognise people so having these pages really help), a list of things I can do throughout the day (I'm on bedrest but having a list of things that I enjoy doing written down is a nice reminder, some of the things on the list at the moment are make tiktok videos, do makeup, watch a movie or tv show, journal, scrapbook etc)

[girlforyou2]

[animefeminist]

Nagata Kabi and the Mundane Pain of Sickness; or, That Time My Body Broke and I Had To Figure Out How to Keep Going

Content Warnings: Discussion of disordered eating and trauma

For many queer, marginalized manga readers, the name Nagata Kabi rings an immediate bell. Whether it’s her first title, My Lesbian Experience with Loneliness, her Solo Exchange Diary duology, her musings on alcoholism and marriage in separate, consecutive entries, or most recently, My Pancreas Broke, but My Life Got Better, Nagata’s autobiographical works capture contemporary life with an unflinching honesty that has resonated across her audience. This is certainly true for myself and that last title. 

My Pancreas Broke, but My Life Got Better is a bit of a time capsule, capturing how it felt to be sick in Japan’s emergent COVID-19 pandemic. It’s a pandemic that I had a unique perspective of as I was living in Fukushima when, in March 2020, the country shut down. I would go on to live within that pandemic until I immigrated back to the United States on August 11, 2020, where I would be faced with the jarring dissonance between Japan’s health care system and America’s tendency towards capitalistic cruelty.

While a distinctly different view on the pandemic, Nagata Kabi’s sixth autobiographical entry resonates with my own story as it captures the confusion and mundane chaos of suddenly living in a society that seems to be falling apart at the seams. Simultaneously, it details what happens when your body breaks while the world is just… kind of falling apart. It’s a story—a true narrative—about what happens when your life falls apart and you can no longer escape 

That last bit is what this article is about: falling apart.

Read it at Anime Feminist!

[chronically-mars]

Masking chronic pain sucks.

It doesn’t mean we’re not in pain, it doesn’t mean we can do stuff just because we did it yesterday, it means we are trying not to make you uncomfortable when we’re in the most severe pain imaginable but have to put on a straight face or else we will break down completely. Masking takes up energy we don’t have so please be nice to anyone who is struggling.

To my chronic community friends, I hope you get to rest today and I hope you get more spoons to get you through the week. You are valid.

[bpdjirai]

i just want to say that if there’s any other jirais that get triggered by the work they do in therapy, you are so valid. therapy can be SO mentally taxing, and you aren’t alone in experiencing that struggle. shout out to all the jirais that get triggered by the work they do in therapy and still choose to go anyway for their health. you’re doing something amazing and if nobody else is, then i am proud of you.

[caintooth]

what are y’all’s daily pill counts. i’m at 12 now, sometimes more if i have to take pain meds as well

[ed-recovery-affirmations]

Hi all! I've got lots of asks in my askbox and I appreciate the ones that have been kind messages for me. <3

I will probably take a few more days off of here, but I wanted to share something from today.

I attended the wedding of a friend of mine. It was hard to go because I feel bogged down in work and family drama, but I went, and I am so glad I did. It was so beautiful. The bride and groom were crying a lot and so were many of the friends and family members. A couple of my friends brought their children, and it was a light in the world to watch them dance and have fun.

There was a lot of food there and I struggled, I'll admit. Especially because recent stress has caused my GI issues to flare up a bit, so my stomach was a little uncomfortable no matter what I chose to eat and that can sometimes send me on a spiral of food regret and thinking I should have restricted. But I did not restrict, and I did not binge. I enjoyed a few things here and there, and took my time in returning to the food table for desserts so that I could enjoy my food throughout the day without overly focusing on it. I gave my GI system a chance to rest but still kept myself fed and allowed myself to have treats. I was able to connect with people, focus on individual beautiful moments, and enjoy the amazing event at least in some capacities.

Food-based events are really hard for me, especially crowded ones. This was tough because I was already struggling, but I did it, and I am proud of myself. I did some more self-care when I got home, including a short workout, shower, mindfulness meditation, and another light snack to keep me feeling fed without overwhelming my GI system. And now I'm writing this. I like to be able to share things about what I struggle with safely. I think we all need that. Though I luckily have friends I can talk to now, there've been times in my life that I was surrounded by people with whom I could never have shared this stuff. I am so glad to be able to help others share too.

There were a lot of moments today that made me feel like there are lights of hope in a dark world. I hope you all are able to look for these moments in your daily lives. I hope you're all able to find (and create) good ones.

EDITED TO ADD: Also the groom cut the wedding cake with a sword.

[crabs-brencil]

more sketchy tmbd lol