The Chronically Ill Life

Hey guys! My name is Samantha, and I am 23 years old. This page is dedicated to my struggles from being chronically ill. Diagnosed with lupus. This is a side blog to : skjarsgaard

[frogitivity2]

Please take good care of them!

[crps-chronicpain-ptsd]

So sick of letting people down I wish people could understand that I have no contro over how I will wake up I can’t commit to things I can go from a 5 pain to a 10 pain very quickly . And when this happens I put my phone on do not disturb I just can’t deal with people sometimes I feel like talking and other times I just can’t . worse still the day after I have to find explanations as to why I didn’t call u or go to where ever .

Chronic pain problems •

[iplaywithstring]

Last week I was talking to a nurse practitioner about my joint pain. She asked a simple question “Does your pain stop you from doing your normal activities” It was a hard question to answer. First off, with the ME/CFS, my “normal activities” are often not much more than “sit on couch and scroll tumblr”. So it’s hard to say if my knee pain is stopping me from going hiking with my family, because going hiking with my family is not in the cards in the first place. The second bit that makes that hard to answer is that I have lived with chronic pain - before I got treatment for endometriosis, I had years of debilitating pain. Intense awful pain that did slow me down and stop me from doing some things, but even then I also had kids that needed care for. No matter how awful I was feeling I had to get them up and ready for school because my husband was at work. I understand the idea of the question is to gauge how my pain is affecting my daily life - and it is, it does, it’s distracting and keeps me awake and yes, it does change my behaviour - but it’s also not helpful to me as the patient for putting the right emphasis on how the pain affects me. When I was in labour it hurt, it hurt a ton, but stopping wasn’t an option, so instead I would breathe and sway and moan and yell and scream and cry. The actual answer I gave was yes, and then I explained that sometimes when I open the drawers in the kitchen, it feels like my elbow is ripping off. It’s intense, and I won’t be out there opening drawers for fun, but if I need something, I know it only lasts a second and I’ll endure it. Occasionally, the pain in my knees is so bad that to change positions I have to use my hands to move my leg, but one way or another, I manage to stand up. That’s just how it works, and it’s how it’s worked for a very long time.

[thefriedbird]

My joints go clickity clickity

While my minds goes nappy nappy 😪😴

[crps-chronicpain-ptsd]

Pain has taken away my ability to speak to people properly. I get so easily frustrated. Brain fog has taken my ability to remember what I’m talking about , let alone articulate what I want to say . Poor memory and concertration has taken away my words , my thought process , the links from my brain to speech to the point different words come out , things come out back to front . Hell I’ve even forgotten my own name !

Chronic pain problems •

[inaminadikaaa]

[t3andcrumpets]

Jesus, this ain’t no fucking lie.

[crps-chronicpain-ptsd]

What most people fail to understand is :Chronic Pain Never Ends it’s constant, we don’t get a break to eat or sleep. It’s an assault on your body 24 /7 a constant never ending battle . Unless you live it, there’s no way you can understand just how hard and tiring that is , it’s chronically exhausting both mentally and physically.

Chronic pain problems •

[cowsparsley]

[pondpigs-deactivated20250803]

I get so frustrated when people act like "Yesterday you used your cane on the left and today you're using it on your right!" is a gotcha and they've caught a Fake Disabled?

Not that I owe anyone an explanation, but I don't have permanent limb damage. I have a few conditions that get worse with exertion and use. Yesterday my left hip was acting up so I was supporting it with the cane and compensating with my right. Today my right hip is having a whinge about it. You'll also catch me shuffling around without any mobility aids because my arms cannot handle all the extra work that goes into lugging my ass around wherever I need to go.

Sometimes I use a cane, sometimes a rollator, and sometimes even a wheelchair if I have someone to push it for me. Sometimes all three in one day depending on which part of my body is currently fucking up the most.

It is NOT your job to police people's use of mobility aids. Nobody owes you an explanation, assume there must be one and mind your own business.

[plainsonglady]

This. This this this. The looks people give you for switching your cane hand could sear rust off a bumper.

[bad-days-are-ok]

[howtobeapersonwithfibro]

friendly reminder that if you have a hard time eating due to nausea or other chronic illness ickies, just eat what you can eat. even if it’s not particularly “healthy,” getting calories in your body to help it function is more important.

[peanit]

t-shirt that says "i rely on pharmaceutical drugs to preform routine tasks"

[crps-chronicpain-ptsd]

Constantly finding myself detached and feeling like NO ONE understands. Some days I feel so alone.

Chronic pain problems •

[chasingtheskyline]

for able-bodied people, here are some signs your friend/loved one/coworker with chronic pain is in discomfort, because we've been incentivized to lie by ableist bullying and often don't know if we can trust you:

their breathing gets heavier or less regular - if you can hear it, they're probably hurting

they're moving more slowly than usual

it takes them longer to get up

they seem anxious, irritable, or upset

they sound mad when you ask them for something (honestly not mad at you! It's just the pain being Loud)

they tire easily during travel/social events

they rock from side to side or back and forth while sitting or standing (could be a stim, could also be a need to lie down)

could just be me but my voice gets noticeably higher when im in severe pain

they want to be someplace less open/more private/closer to home on a bad pain day, even in public. in school i was notorious for going to classrooms or the library for lunch instead of the lunchroom - it was too much for me w my pain.

to partners, being clingy, snuggly, or having their s*x drive go up (we need those endorphins!)

i hope this helps, and i'm happy to answer any questions.

[reshipped]

“How do you tell people? How do you tell them that you’re exhausted even though you slept for 10 hours? How do you tell them that you need a break from talking and smiling and simply being near them? How do you tell them that although you love them, you so desperately need to be alone tonight?”

— Midnight thoughts (I’m burnt out)

[anxietyproblem]

[my-hyucking-spoons]

Tfw you're having a flare up but you have to vaccum the house and go get groceries before you collapse