#chrinic illness

[akindplace]

You don’t need to prove that you have earned rest. You don’t have to push beyond exhaustion or meet the expectations of others when it comes to their own definition of tiredness. You’re the only person who truly knows what your body feels and when it’s past its limit, and no one gets to tell where your limit should be, or to demand that you go beyond that to “push through”, which just leads to burn out. You’re not lazy, you are exhausted. Let go and rest.

[soft-jinx]

i need to take all my nerves out of my body and wash them in the most relaxing bath ever to be bathed. and. and just leave them there. for a while.

[houstonxbreed]

Disabled people get criticized and called lazy for being unemployed but nobody wants to discuss how employers won’t hire us because we’re considered a “liability”. Many companies also refuse to accommodate individuals with disabilities. Let’s not talk about how the government takes away our lifesaving healthcare benefits if we make more than $2000 a month and this the reason why most disabled people live in poverty!!!

[moxie-starre]

Tireddddd ugh

[punkinvsblogging]

A rough one.

2025.01.05

started a new book

worked

reviewed and learned some new stuff on Memrise: German, Spanish, Portuguese

Reviewed some stuff on Clozemaster

reminded myself that time wasn't wasted when I chose to rest when I was suddenly blessed with a break

got a migraine

worked on my planner

wrote some Chinese

Today, I got to learn about inclusive pronouns with a friend I met in Spain. This morning I was reading a book with my Mexican friend, and I tried to tell him about my Spanish friend. I didn't know how to say, "My friend said I could call them 'amigue'" in Spanish because I was like Ella?? El??? Apparently, "elle" is a word, and that's dope! They said I could say, "Elle me dije que puede le llamo 'amigue.'"

That honestly made this whole day. I was super excited.

Now all I gotta do is stop getting migraines. They're really slowing me down and ruining my moods. Why can't I just be HAPPY?? Damn. D:

I think I’m getting better at not getting sad about being unable to reach my goals when I’m not feeling well, but being sick really does get old sometimes.

[dailyjournalofsurviving]

There is a deep grief to a chronic mental illness. Some weeks I'm better and able to function and move through my trauma and I forget I have PTSD and feel hope. Other weeks without reason I'm suddenly reminded how bad it can be and feel stuck all over again.

[scribblesandink]

Ya know what really fucking hurts? Having goals and aspirations that you know you will never accomplish because of a disability. I know if my body would let me, I could be something. But I know I will never be anything more than ordinary

[the-void-spoke-back]

There are times when you evaluate if keep pushing through the pain for the people around you is even worth it. Your brains whispers that their pain would be temporary compared to yours.

But you shake it off and endure it once more, ignoring how much the heart emphasize with such lie.

[theshipscommander]

So here’s a little “hack” for any of my disabled peeps looking for a wheelchair because we don’t gatekeep.

I am currently in the process of getting a POTS and Ehlers Danlos diagnosis. Last November marked 1 year of having/suspecting I have POTS. It’s been harder for me to get out and about due to tachycardia. I can only walk a short distance before experiencing tachycardia and pre-syncope. I also am dealing with a lot of dislocations and joint pain from the Ehlers Danlos. (I got fibromyalgia too)

So I cannot get a custom wheelchair because I don’t have any official diagnosis under my belt yet. I won’t be getting in to seeing a geneticist until July and a neurologist in June. Luckily my referral to the Cardiologist was put in as urgent and that is later this month.

There is a company called Not a Wheelchair that “takes out the middle man” (the process of doctors and insurance) that builds custom wheelchairs for only $1,000 (If you don’t get any of the add-ons)

You can measure yourself and put in your measurements for your wheelchair. The frame is a rigid frame and I believe the tires are airless. You can also see a 3-D model of your wheelchair while you are customizing it. You can choose what footplate you want, the color of your frame and much more.

I know at first $1,000 sounds really expensive and unreasonable, but a CUSTOM WHEELCHAIR for that price is unheard of. Typically customs chairs range from $3,000-$15,000. Also, the wait time to get your chair through insurance can be 6 months to even a year. For this company, it takes 6-8 weeks for them to build your chair, then ship it.

I hope this helps anyone who was looking for a manual wheelchair customized to their dimensions but either couldn’t or didn’t want to go through insurance.

[ghosty-dsmp]

So uhmm vent

So uhm how do i say this? Mmm well today fir most of the day i was at the super market (we finally had money for none moldy food cause my mom finally started working and my dad too), but im chronically ill so like i had my symptoms like usually and almost passed out since my mother didn't want to take a break from walking.... i almost passed out i front of the whole store but of course, my mom had to put the act bla bla bla lol and uhm so when i arrived to the car cause she couldn't beat me cause we were in public, so she yelled at me and drove to the middle of nowhere and kicked me out of her car and told me to walk home as punishment, im so honna be honest I HAVE NO IDEA HOW I FINDED MY WAY TO MY HOME, but i somehow did and she was furious that i did, and beated the shit out of me and by how badly she beated me up i was on the floor unconscious FOR A FULL HOUR, and niw im in my room trying so hard to not let my hallucinations to win about kms, yea, i hate my mom lmao

[mlmshark]

Official first day of summer but but I’m going to bed at 10:30 because I have a strict sleep schedule because of my migraines. Any future boyfriend will have to put up with me going to bed at the time a grandpa does

[dandelion-system]

Oh man I made such a mistake

I washed up and then I changed the cat litters and then I showered. With less than 30 minutes break between each.

Outcome? OUCH

[houstonxbreed]

Having a severe disability that gets progressively worse over time is such a lonely experience. The more you decline, the more your loved ones leave because your limitations become a “burden” on them. Meeting new people is exhausting because you have to constantly explain your disability just for them not to understand and end up leaving you anyway. You’d think that people would wanna support you when you’re in such a vulnerable position in life but people are just quick to throw you away. Disabled people are forced to deal with the physical and mental distress that chronic illnesses cause all ALONE because society refuses to be empathetic.

[stroopwaifey]

Okay opinion time. My family says me blocking out her face makes it look unfinished. For me it’s about invisible illness and how the medical field doesn’t see us.

Should I paint a face?

[academiccryptyd]

Battling chronic illness and disability while being in college full time is hard to say the least. To anyone out there struggling, no matter the reason; go easier on yourself, but don’t stop. Never give up on your passion, whatever it may be. Being this ill, being in and out of the hospital, if it’s taught me anything; you never know how much time you have left. So do exactly what you want to with that time. Even if it’s hard. Take care of yourself, just don’t stop. 🧿💙

[feathers-from-cupid]

The duality of being in too much pain to stim but needing to stim to stop the anger from being in pain