#Chronic Condition

[stardust-maple]

Edit: look I didn't do a good job explaining what these were for the first time so I've got a second edit at the bottom of the page that explains things better.

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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!

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Edit p2:

So these charts I made them for showing people and using them to talk about my pain. The numbers are just sort of a reference point . The words are what's important. The fact that it is a relationship is what's significant.

I've got chronic pain and chronic fatigue. I'm never not in pain and I'm never not tired. These are based on the main pain and fatigue scales that I usually get shown at places that aren't specialized in treating pain or fatigue.

I use these when talking to my family, using the number that relates to the mine side. I use these with my non pain doctors who don't treat my pain or fatigue. I use the Drs number when talking to Drs. Anything that in those X spots is also 10. Drs don't like pain larger than 10 because they think you're faking it.

I made these after getting covid. It was about a year later and I still couldn't describe my pain in terms of the standard scale because I couldn't conceptualize pain properly because covid had completely broken my internal perception of pain intensity. Because I went from never having gone to 10/10 or ever being there for very long to about 2 weeks of what I could only describe as 13/10 pain. It was logarithmically higher than anything I my brain could process. And my brain didn't process it. I just sort of cried a lot, slowly.

If you are ever using a personalized pain scale or something you found online with a doctor you should show them what you're talking about. You need to make sure they understand you.

I posted this because I was having a hard time saying that while I was at a 3 in terms of abilities, I was in just as much pain as when I had been previously at a 5. I needed something that showed what I was talking about.

It feels very strange adding all these disclaimers so far after, but I've been thinking "it's too late" every time Ive realized someone might use it in a way that wouldn't help them. And then ignoring the problem for a while.

We've got 3k notes on this. People keep looking at it. The disclaimers are nessesary. I'm sorry they weren't there before.

I just remembered that I specifically made this because I needed to be able to point at a number and have my parents be able to know what that meant. They don't have training in the pain scale. They don't know what it means. But they do know what I mean now when I say I'm at a 6. They understand me.

The point is, this says that it's used for talking to doctors and it's really not. It's for my family mostly. And my PCP who keeps asking what pain I'm at and I just need to say a number that communicates the thing she wants to know (that's why the Drs thing is on there. That's the number she needs. She doesn't care. It's weird. She's weird.)

But it is mostly for my family. It's for describing how I'm doing.

Do not use this in emergencies!!! Do not use this with pain specialists without showing it to them!!!

[calicobeesblog]

I hate talking to non disabled people about my financial issues because they always go “well you’re disabled can’t you just apply for pip” babes I wish it was that easy.

Trying to explain that I can’t just call them up and go “hey I’m too disabled to work give me money” isn’t how it works and they just go well isn’t that what it’s for. Yeah but unfortunately I have to go through an extremely long and difficult process before I’m even considered for pip.

[yellow-dress-basil]

My chronically ill ass getting way too excited about notifications from this mf

[chronicallychewy]

me when the chronic pain is actually chronic 😰

[ladyfarona]

I completed 3 of the Forbidden Chores of Chronic Illness today:

Cleaned my room + washed & changed my sheets + took a shower

help 🫠

[tiredtourettic]

(Short) Chronic illness vent because no one listens so maybe someone on the internet will.

I'm in pain. I'm in so much pain. My joints feel like they're on fire no matter what I do. A cane used to be enough to be relatively pain-free. I couldn't use it a lot because of my parents, and now on a good day I need crutches and on a bad day I need a wheelchair because I can't stand for long for reasons other than the (most likely) POTS. hypermobility sucks, pain sucks, my parents suck for not believing me, I can't wait until I'm 18 and can get diagnosed. I'm gonna get off now because I'm getting a migraine.

[cripcoin]

Capitiuturnic

A diuturnic term/flag for those with chronic headaches and/or migraines, including those with full body, periodical, severer or moderate pain from headaches/migraines, regardless of when or how often they happen be it monthly, weekly, daily, having no pattern and so on.

This includes anyone who's undiagnosed or doesn't know what it is beyond constant headaches/migraines regardless of what form it takes.

Etymology:

Capiti -> comes from capitis, Latin for headache.

+ iuturnic from diuturnic.

Requests are open!

[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 :)

[sebsreflection]

Once again, non-shifting related, but important.

TW: Talk of suicidal ideation, suicide, mental health issues, etc.

I feel we should talk about the mental side/battle of things when you’re chronically ill and/or disabled, especially when young.

I am. And I also have mental illnesses. Sometimes my chronic illness and disability adds onto that and exacerbates it.

And sometimes those that newly develop chronic illnesses and/or disabilities start to have mental illnesses solely because of it.

THAT should be your first sign as to how largely it can affect one mentally and emotionally.

When I was in a big flare back in August of 2024 that lasted until around January or February of this year, where I had to use a wheelchair, constantly had to use my mobility aids, where all of my symptoms even limited me from doing small things like turn my head around to face someone or get up to eat food every single day, I remember laying there in my bed and thinking: “I want to die.”

I didn’t know when it would end. IF it would end.

I have a baseline of symptoms, of pain, of disability. But when I’m in flares, and particularly during that one, everything is so unpredictable and I don’t know when something will end and if it may or may not become my new baseline.

I was so worried (during that flare) that I wouldn’t ever go back to my baseline, that I would be stuck like that, and if it did come to be that way, I knew I couldn’t live like that.

Chronic illness and disability can and does KILL people, not only for some of its dangerous physical consequences, but also due to suicide based off of hopelessness, loss of control in one’s life, and being in constant pain and many other things.

And that’s not even just for flares. Living even as baseline disables people and causes suffering to every day life; and if you are a young chronically ill/disabled person, there are certain expectations that one has at that age, to be able to go to school, go out with friends, go shopping, even focus on the things you love. And we can’t. And that feels like we’re wasting our lives, that we will never live, that we will never have our young years.

So many of us struggle to keep friendships and relationships too due to our chronic illness/disability because of its symptoms. And that creates even more loneliness for us, and missing out on things that we should be doing at our ages.

I know no able-bodied person can truly understand how impactful these things are, but think about any injury you’ve had, any sickness, anything like that.

You’ve broken your leg and have to use crutches? Think about that every day with no cure, no determined date for when it’ll go back to your norm.

You’ve got COVID or the flu or a cold? Think about that every single day. All that ickiness, sore throat, brain fog, fatigue, muscle aches, nausea, diarrhea, fever, chills, hot flashes, so on. Every. Single. Day.

Don’t just think of it for a second and move on. Put down your phone, remember as clearly as possible how you felt during it, and IMAGINE that with no ending.

That’s what it’s like. That’s an inkling of what it can be like. And there are even more chronic illnesses and disabilities with even more symptoms than those.

I’d be here all day just naming the ones I have, and no, I don’t get a break, I get it every day.

Nausea, constipation, diarrhea, pain, partial dislocations, fatigue (no, not just tiredness, it’s that feeling where you’ve been awake for 24+ hours and there’s no nap in sight), brain fog, words slurring, poor motor control, dizziness, increased heart rate for normal activities (130+), headaches, too much mucus, muscle spasms, hot flashes, chills, SO MUCH MORE.

That’s just a little peak into my day to day life. It’s been years. Since I was around 7 that it has started, but that’s just as far back as I can remember ANYTHING, so who knows.

I feel horrible all of the time, no breaks.

And this disables me, and makes it hard to be in relationships and friendships. It makes it hard to keep jobs. It makes it hard for me to enjoy the things I love. It makes it hard for me to go out to multiple places in one day. A little trip to the grocery store has me tired for a few days to a week.

And it is so lonely. It is so awful to have the ability to do regular things that I SHOULD be able to do at my 17 years of age. And I know I won’t be able to do this or that when I’m older. I’ll have to do everything with accommodations, and even have to pass on A LOT of stuff because there’s no way to make it accessible.

And sometimes I wanna die because of that. Sometimes I can’t see the point of living if it means eternal pain and all these thousand other symptoms and endless doctor appointments trying to figure things out and manage new symptoms and old ones that can finally be treated because they’re “bad enough now”. And I feel a lot of my chronically ill and disabled pals feel the same a little too often.

Check up on your chronically ill and disabled friends or partners or family members, if you have any. They are never doing okay physically, and I bet my ass mentally or emotionally they’re going through it 90% of the time too.

[crunchsomebones]

being able to identify the pain I am feeling is wild I have a constant desire to just blurt out I AM IN PAIN at any given moment. like yatzee.

[stardust-maple]

I am so sick and tired of being my own doctor

[calicobeesblog]

I love that my able bodied friends are helping me find a job but they really don’t realise that I need a job that won’t make my health worse, I used to work in hospitality and retail, I have since I was 16 but I physically can’t anymore. I struggle to stand up for more than 20 minutes without feeling like I’m going to pass out and i can’t walk without my walking stick on a good day. And they all keep on sending me waitress jobs or runner jobs or other jobs where I have to be active and do physical things for an 8 hour shift.

The job market is genuinely so shit rn (especially outside of cities) but having to take into consideration what I can actually do, it narrows down the jobs I can realistically do and it’s so frustrating seeing all my friends have careers and the money to start their own lives without having to lean on people for the most basic necessities

[yellow-dress-basil]

Hey can someone with POTS explain what its like?

I’ve always dealt with dizziness on standing. Its usually manageable, almost like a little vision shift, but sometimes its BAD. Like I’ve fallen into walls when I get out of bed in the morning or had my vision black out most of the way. I kinda thought that just like, happened to people? But I recently have had it brought to my attention that it maybe doesn’t?

I’ve never passed out, but I think I’ve gotten close. Like blacked out vision, weak knees, etc.

I can often feel my heart pounding against my chest and can almost always hear it or feel it somewhere in my body.

Is any of that normal person stuff? Or should I book an appointment with my doctor?

(If it helps I have a lot of thus far unexplained digestive issues, chronic fatigue, ADHD, and Autism)

Please know I’m just trying to figure out whats wring with me and not make any assumptions about POTS.

Thanks everyone!

[heyhoneyfox]

Shout out to everyone with chronic conditions that are really just mild inconveniences (me)

[ladyfarona]

"You can't feel that tired and sick all the time!"

Oh? Well today I woke up feeling absolutely amazing, I feel rested, body feels actual relief, and this is the first time I've felt like this since... *checks calendar* sometime last year? It's February 9th. We're this far into the new year and this is my first good day.

So shut up maybe?