#Chronic Condition

[stardust-maple]

I made my own pain and fatigue scale charts. Because I'm so adept at overcoming my symptoms the normal pain scale doesn't really work for me. I adjusted my numbers so that I could change the number into something I could tell a doctor when they inevitably ask me to rate my pain.

[Image Description: Pain Scale Chart with rainbow gradient background for each row, starting at red and ending at blue. Row 1: Mine Drs Pain Scale Description Row 2: 10 X I am not leaving my bedroom or bathroom, someone needs to bring me food and I need something to dull the pain or the pain will cause tears. Row 3: 9 X I am not leaving my bedroom and bathroom for anything other than food. Row 4: 8 10 Speaking is difficult. It is no longer practical to do activities outside of the bathroom or bedroom, but they can be done with assistance. Row 5: 7 9 Necessary care activities are sacrificed. Academic activities and social activities can no longer be tolerated. Row 6: 6 8 My pain is tiring. Paying attention is difficult. All activities require pacing and extra effort. Row 7: 5 7 My pain is so distracting it is making me tired. It is hard to think. Necessary care activities are no longer all doable. Row 8: 4 6 My pain is so distracting it is making me tired. It is harder to think. Necessary care activities are starting to be limited. Row 9: 3 5 I can continue to do most activities Row 10: 2 4 My pain bothers me but I can ignore it most of the time Row 11: 1 3 My pain bothers me, but I can ignore it most of the time. Row 12: 0 2 I am aware of my pain only when I pay attention to it Row 13: X 1 My pain is hardly noticeable Row 14: X 0 I have no pain. END Image Description]

[Image Description:

Fatigue Scale Chart with rainbow gradient background for each row, starting at red and ending at blue. Row 1: Mine Drs Fatigue Scale Description Row 2: 10 X Can barely sit up, needs assistance to get out of bed. Holding conversations is impossible. Laying down for most of the day is necessary. It is difficult to eat. Focusing is strenuous. Row 3: 9 X Able to walk and stand for short distances. Holding conversations is difficult. Laying down for most of the day is necessary. It is difficult to eat. Focusing is strenuous. Row 4: 8 10 Able to walk and stand for short distances. Holding conversations is difficult. Sitting for long Periods of time is difficult. It is difficult to eat. Focusing is strenuous. Preparing a meal isn’t possible. Row 5: 7 9 Holding conversations is difficult. Sitting or standing for long Periods of time is difficult. It is difficult to eat. Focusing is strenuous. Row 6: 6 8 Sitting or standing for long Periods of time is difficult. It is difficult to eat. Focusing is difficult. Preparing a meal is difficult. Row 7: 5 7 Standing or walking for long periods is difficult. It is difficult to eat. Focusing is difficult. Row 8: 4 6 Standing or walking for long periods is difficult. Focusing is difficult. Row 9: 3 5 Cooking for longer than 15 minutes is extremely challenging. Row 10: 2 4 Not everything can be done in the day. Activities are slowed down. Difficult mental challenges are sacrificed. Row 11: 1 3 Tiredness makes it difficult to enjoy fun activities. Row 12: 0 2 Things take more effort than usual, but everything is still doable. Row 13: X 1 Slightly tired but still able to carry on as normal Row 14: X 0 Not tired at all END Image Description.]

Feel free to use them yourself if you like them!

[zombiemollusk]

"you were just diagnosed with an awful condition, why are you happy about it??" bud, i would still have the condition even if i wasn't diagnosed; i'm happy because i now know what it is and what i can do about it

[ihavea-natural-curiosity]

hey, wheelchair users, i would like some advice

currently i’m on forearm crutches but this summer i’m hoping to get a chair for part-time use and im wondering how i could go about that?

insurance will most likely not pay for it since i can walk without it and dont really need it in their eyes. does anyone have any recommendations for a place to get an affordable chair?

i’m in the US, and i would need something that’s basically the typical hospital chair, but foldable and as close to custom-fit as possible (and preferably not the hospital grey?) and i’m about average weight so wideness shouldn’t really be an issue?

if anyone has advice on this i would really appreciate it :)

Edit: thank you all who gave me advice!! ive got it all figured out now :)

[neuroticboyfriend]

hi people with skin conditions (scars included). you do not have to hide. i know how scary the idea of someone seeing your skin is. you don't want to be judged, and that is entirely understandable. at the same time, we deserve better than to treat ourselves unkindly - let alone based on the views of people who don't have our best interest in mind.

so, i want you to know you're allowed to exist in your body and show it - just as it is right now. you can wear what you want. you can get that haircut. you can do or not do your makeup however you want. it's your body, and your life. you're allowed to live it, no matter what anyone else says.

and if you hide because you're afraid for your safety: please know you are also allowed to do what you need to protect yourself. and i hope one day you're able to be safe enough to embrace your appearance and be free from hiding. but until then, have patience with yourself. you deserve that much.

[myalgicencephalomyelitiscfstom]

[rollercoasterofshitposts]

RAMBLE TIME BUCKLE UP

SPOILERS AHEAD FOR TRIALS OF APOLLO AND BASICALLY EVERY PERCY JACKSON BOOK EVER BUT MOSTLY TOA, ESPECIALLY THE BURNING MAZE.

TLDR at the end.

spoilers start now ok bye

Here are some facts that we know for sure:

1. Percy Jackson is named after Perseus, the Greek hero who killed Medusa.

2. Perseus is one of the only, if not THE only Greek hero to not die tragically.

3. Rick Riordan is VERY careful about how he uses names throughout the series, something he addresses from the very beginning when Percy gets to camp. Percy says Zeus’s name (or Kronos’s, can’t remember which and I’m lazy right now) and the sky rumbles, and Chiron warns Percy that names have power and to use them carefully. Later, in Tartarus (if I’m remembering correctly), Percy and Annabeth are wary of using names because of their proximity to monster respawn points.

4. The only other main character named after a Greek hero is Jason Grace.

Here are some things we can assume, based on Rick’s writing style and the details he has given us:

1. A character’s name will tell you something about them. That’s a Riordan near-guarantee.

1a. For example: Piper being a reference to the Pied Piper since she can get anyone to do anything for her, even follow her off a bridge.

1b. Or Magnus and Alex being confirmed from the beginning because Rick mentioned that he stole the name Magnus from Cassandra Clare. (She wrote The Mortal Instruments, which contains a gay couple named Magnus and Alec (Alexander).)

1c. Or Leo being named after the great inventor Leonardo daVinci (not confirmed, but they’re so similar it’s hard to believe otherwise).

1d. A castellan is the governor of a castle who enforces the law around the land. They also have military responsibility. Luke Castellan. nuff said.

2. NAMES HAVE POWER IN THIS UNIVERSE. Sally literally named Percy after a Greek hero to keep his roots close in a subtle way, but she purposefully picked a Greek hero that lives.

2a. HUGE example: Castor and Pollux. In myth, sons of Jupiter. Castor is mortal while Pollux is immortal, and Castor dies. (Slightly irrelevant but Rick loves taking notes from other authors so: In The Hunger Games, part of Katniss’s film team. Castor dies, Pollux lives.) In PJO, sons of Dionysus. Castor dies during Battle of the Labyrinth, while Pollux lives.

The one exception to this rule is Jason Grace. Or so I thought.

If you read the myth pertaining to Jason (Golden Fleece, Argo the First, Medea, etc) you find out that Jason of the Argo dies when he falls asleep on his ship underneath the rotting mast and it falls and kills him. There’s a lot of other stuff that goes down, but for the sake of being succinct, here’s a link to the myth for your perusal:

The only other SUPER MEGA IMPORTANT DETAIL from this myth: Argo Jason, by cheating on Medea, falls out of favor with Hera, while in PJO/HOO, Hera actively names Jason 2.0 and claims him as her champion. (despite him being. Y’know. The proof of her husband being a jackass to her. quality time with the stepmom right there.)

Putting this all together:

1. Sally purposefully named Percy after a Greek hero who lived, indicating fear that he would die if she chose a different name

2. Names have power and Rick puts meaning behind every single name he uses.

3. Jason dies in The Burning Maze.

The real kicker is that they both die in the same way: having lost everything, with so much still to do, dying a completely avoidable death because they weren’t paying attention to what was going on behind them. There’s differences, obviously, because Jason Grace is actually a good person, but those are inconsequential as the big picture is all the same. (We see these similarities happen A LOT with Percy, especially when he kills Medusa.)

We should have known. Rick laid out all the pieces for us from the very beginning, even (possibly) going so far as to straight up tell us that one of the seven would die (again, not confirmed, I saw it in a meme and maybe his twitter? idk im ty ty).

so:

TLDR: Rick Riordan left a gigantic trail of breadcrumbs that should have clued us all in to the fact that Jason was gonna die long before it happened.

And no, I will never shut up about Jason. Justice for my favorite white boy.

[esotericalqueer]

no need to credit, just don’t claim my work as your own!

you deserve to exist without shame. you may have limitations and that is ok; you do not exist to motivate those with healthy, functioning bodies. navigating a society that was not made with you in mind is difficult, you are doing amazing! do what is best for you; don’t try to keep up with unrealistic expectations. take care of yourself, you are worth the effort <2

[cljordan-imperium]

CJ is sick...my immune system has declared war...shots have been fired...steroids are being deployed... wie ein Modder- Igel fühlen

Ich fühl mich wie gematschte Bananen

Ich fühl mich scheiße

And gifts for my German besties for accurate descriptions of how I feel @saltysupercomputer @dreaminggoblin @writingmaidenwarrior

And I'm not contagious, so they're safe

[doll-fae]

Hi, to other people with Narcolepsy or idiopathic Hypersomnia, asking some advice here. In this past year I was diagnosed with idiopathic Hypersomnia that my doctor is currently trying to get changed to a diagnosis of type 1 Narcolepsy. That's not my problem though. My problem lies in the way people have been treating me with my sleep problems. Because my sleep disorder is still developing, I'm not yet to the stage where I instantly fall asleep when having a sleep attack, and because of this, all of my family says that my sleep disorder isn't 'that bad' or not 'true narcolepsy'. Therefore they refuse to take my literally professionally diagnosed condition seriously. Anytime I have a sleep attack, they instantly poke and jab me till I wake up, so I don't get to sleep at all when I have a sleep attack. I get called lazy for being too exhausted to do much or being slightly irritable. Yet they refuse to take it seriously even when I ask them to. Does anyone have any advice?

[thecouncilofidiots]

Heheh Roomie doesn't usually take bubble baths At all ever The DAY after we o-c clean the bathroom, distressed and having a breakdown She decides to take a bubble bath We are ACTIVELY in a fun little PEM episode, and you're gonna undo all our work

[mental-mona]

Source

[Text ID: We are not tired we are FATIGUED When you're tired, you pull back, rest, sleep and feel refreshed after. Now, fatigue is when you take the tiredness feeling and it's there every day, without a break. You can sleep 24 hours a day, rest for days, but, you still wake up feeling the same. Unrefreshed, or possibly even worse than when first fell asleep. That is the difference between being tired and living with fatigue. /End ID]

[stardust-maple]

It's weird that people just like... Forget you're disabled.

You'll be like "yeah I've got chronic fatigue and chronic pain" and then you tell them how it impacts your life and then they just... Keep expecting you to do able bodied things.

Like I can't always clean up my hair from the shower without taking a break first because showering is a very physically demanding task. But if I ever say I don't have the energy to do that. They call me ridiculous. They say that's unreasonable.

It's just kind of bizarre.

It's only when you remind them that you're disabled that they back down. Because they forgot. They forgot you couldn't do everything they do.

[zombiemollusk]

"they don't let their disability stop them!"

neither do i. i didn't give that asshole permission to stop me, it just does that on its own.

[violetjedisylveon]

It is Disability Pride Month!

I would suggest using the opportunity to learn more about all the different disabilities and how they impact the lives of people with them, and how that struggle is made worse by ablism in our society.

Take the chance to learn from actual disabled people, talk to us and hear our stories, listen to us when we tell you how to help us and make our society more functional and accessible.

Learn about disabled history, about the crimes and injustices done to disabled people. Look up disabilty holocaust and you will get a bunch of articles on what the nazis did to disabled people. It's depressing, but important to learn.

Disability isn't a bad word, it's an accurate description unlike calling someone differently abled. They aren't the same. Disability = not abled, like not able to walk because you are a leg amputee, not being able to do things like everyone else because you have no executive function capabilities. Differently abled = something like left handed, you are still fully abled, you just do it differently but you do it without any aid or tools.

My friend @poeticallydisgraced gave that example when our school put up a sign about recognizing differently abled students. And I think that fits the situation very well.

If you're curious, I've given a bit of a description of my experience under the cut.

Happy disability pride month!

I am nuerodivergent, Audhd, I have autism and Adhd. I also have chronic health issues with severe allergies and I get some bad migraines. I have hearing issues too but wouldn't call myself hard of hearing, it's more of a disconnect between what's said and what I hear. Makes for some entertaining conversations.

I tend to get over stimulated in social settings, too much noise and too many people really mess with me, light and sound trigger my migraines which can last for days, which is never fun.

I have no social awareness, and can't tell the difference between teasing and bullying, the line is super blurred/non existent for me.

This causes a lot of problems, because when people make those jokes and tease me, I don't get it, and to me it's rude and mean, but it also goes the other way cause when I joke I cross a line I can't see, and then everyone gets mad at me even though I'm doing the same thing as them.

I technically have a minor hearing loss in my left ear from a surgery as a child, but I had started having those hearing issues during the phase of development where you learn to speak, so my understanding of language is a bit skewed and I frequently hear things wrong, or don't hear the words said and have to ask for people to repeat it.

My family is starting to get annoyed and won't repeat anything but it's not like I'm choosing to do it, and it is very frustrating when they refuse to repeat it.

All these things leave me feeling a little isolated from my family and people around me.

I am expected to change and be someone else that is more acceptable to nuerotypical society, I jump through hoops and put on an act to appear less different, I've always been singled out as weird and other, and while no one has bullied me, at least that I was aware of, I got left behind by my peers.

The constant masking and acting like something I am not is exhausting, after a week of school I am fully drained of my energy and ability to put on that act.

My mom has gotten upset that I don't act the way I do at school at home, but I shouldn't have to act like a different person with my family.

I am not ashamed to be nuerodiverse and disabled, no one should be shamed or looked down on for something they can't control. A lot still needs to be done to make our society accessible to everyone, the current disability protection and aid laws are insufficient and full of loopholes that allow for disabled people to be ignored.

Have fun learning!

Happy disability pride month!

[ladyfarona]

They should invent a painkiller that's not acetaminophen or aspirin or naproxen or ibuprofen. We're long overdue for an upgrade in OTC meds who's with me.

[ihavea-natural-curiosity]

Just remembering how that when i was ~4 my mom took me to the hospital and had my ankles x-rayed bc i was in so much pain constantly.

the doctors brushed it off when they found nothing wrong, most likely saying i was faking it for attention.

ten years later, ten fucking years later, i’m diagnosed with pain amplification syndrome (chronic pain). i spent over half of my life in near-constant pain that could’ve been explained, accommodated, and maybe even treated early if those fucking doctors had actually fucking listened.

now maybe it wouldve been better for me if my dad hadn’t scared the shit out of me by telling me about gout and i continued advocating for myself

but still. if your young child tells you something is consistently wrong, do not let doctors brush it off.

little kids don’t lie about constant pain. advocate for your children.

reblog this, please. a lot of people and parents genuinely don’t know.