#chronic illness rant

[matchakuracat]

Being asked to rate your pain on a scale as someone who has had chronic pain for several years is so difficult. Like how am I supposed to rate the pain I am experiencing from 1-10 when I have no idea what it feels like to not be in pain. Like what is 0? what is 1?? what is even 10???? What am I comparing it to???? My 5 can be someone else's 10 and their 10 can be someone else's 2, and how is a doctor or anyone else for that matter supposed to tell the difference? Maybe it's because I'm autistic and I'm just overthinking it but it literally makes no sense to me.

#chronic pain #chronically ill #chronic illness #physical disability #cripplepunk #cripple punk #crip punk #queer cripple #chronic disability #disabilities #disabled #disability #actually disabled #physically disabled #chronic illnesses #undiagnosed chronic illness #chronic illness community #undiagnosed chronic pain #joint pain #pain scale #chronic joint pain #chronic headaches #chronic headache #actually autistic #autism #disabled rant #chronic illness rant

[depresbiandairies]

Just wanted to give a small update on Depresbian Dairies:

Tldr- the theme of this comic will be changing a bit due to changes in my health.

So it’s been six months since I’ve made a DD comic, and honestly if you read the last one you can take a guess as to why. See, I started making Depresbian Dairies when my symptoms were starting to affect me so much my illness became visible- and I wanted to fight it. To find a way to see humor and light in something that’s been pretty grim.

But the truth is managing my symptoms has only gotten more difficult and especially since 2024 began and I had a 22 day flair up— I’ve been feeling anything but humorous and positive about my chronic pain.

How am I supposed to draw funny and lighthearted panels when I’m just, really angry, and upset at my situation- yknow?

So,, for a little while Depresbian Diaries is going to be a little less “finding humor in the melancholy” and be more along the lines of “yeah it sucks, and it’s okay to admit that you don’t like what’s happening, but you’re not alone”. With single panels of affirmations or the occasional vent art

What’s been the biggest struggle is the muscles and joints from my shoulders to fingertips being tired and sore. I’ve been drawing maybe 3-4 times a week as opposed to my daily sketching.

I’d be lying if I said I’m not devastated. I’m just hoping with enough time and consistency aimed at pacing my energy- I can work out a schedule that lets me draw regularly so I can meet deadlines set for myself.

#artists on tumblr #depresbian diaries #diary of a depresbian #cripple punk #cane user #young cane user #young and disabled #chronically fatigued #chronically ill #chronic illness #chronic pain #chronic fatigue #chronic illness rant #chronic pain rant #disabled artist

[chronicsymptomsyndrome]

Someday I’ll get over my weird panic thing about doctors and needles and get blood work done and a doctor will get my results back and be like “holy fuck you’ve been living with untreated _____ and ______ this whole time how are you just now getting diagnosed are you okay??” and I’ll be like noo lol and then everyone that’s ever called me lazy will be suddenly struck by an all-consuming wave of guilt and shame <3 yay

#chronic illness #chronic pain rant #undiagnosed disability #undiagnosed chronic illness #undiagnosed something #late diagnosed autistic #self diagnosed autistic #audhd problems #medical trauma #childhood trauma #fear of needles #pda autistic #autistic borderline #chronic illness rant #chronic illness vent #chronic pain problems #chronic pain treatment #late diagnosis #dysautonomia #comorbid conditions #chronic panic #chronic fatigue #chronic headaches #healthcare reform #healthcare access #anti ableism #autistic trauma #pathological demand avoidance #csa survivor

[indiecrowarts]

Been feeling real sad I haven’t had the energy to work on @depresbiandairies in a while (2 months) I just haven’t had enough spoons and I’m working on developing my first comic with a plot. I’m just tired and fatigued and trying to work on my health but I’m frustrated that I’m having more and more days where I’m too exhausted to do what I love.

Disability and chronic pain/fatigue/illness is a bitch and it’s worse when you don’t know why you feel this way. I’m just so sore and tender no matter how much/little I sleep I’m exhausted. No matter how much yoga and stretching I do I’m still so stiff that I have to crack my joints every few hours just to retain mobility (especially my elbows and shoulders those are so hard to pop). I’m just tired of this and feeling this worn down. I want to be healthy- I want to wake up in a body that actually feels rested after 8 hours of sleep (these days I’ve been needing 10-12 to even function) I’m just tired and I’m done and I want out and to get this shit over with.

Still working on figuring out what it is but I can’t visit the doctor right now because the US healthcare system is broken and everything is debt-inducing-expensive.

I’m just so tired, I want to make my comics, make my art and produce things but this fatigue makes me so goddamn slow about it. I feel like I’m going to spend my life playing catch up in order to compete with other artists in my field. I feel like I’m at a loss, things need to get better, they just have to

#artists on tumblr #small artist #disabled #chronic pain #chronic illness #chronic fatigue #chronic migraine #spoonie #disabled artist #young and disabled #disabled rant #chronic illness rant #chronic pain rant #invisible illness #invisible disability #exhaustion #fibromyalgia

[iliveinmyblanket]

I want to rip my uterus out

I hate it I hate It I hate It I fucking hate this

I fucking wanna live properly, I want my brain to work I want my body to work, I wanna see my self in the fucking mirror.

I want to experience trans joy constantly, I wanna feel like I'm real, I want to exist fully.

I don't want to feel like I'm just something that orbits people, I want to feel like I'm not about to fade away.

I want my nerves to work, I wanna feel things fully, I want to feel my loves skin properly

#trans rant #disabled rant #chronic illness rant #i am so fucking mentally ill

[foe-of-fate]

Constantly torn between wanting to be seen as more than my symptoms, more than a problem that needs to be solved. More than someone who’s life is only pain and misery.

And also wanting to be taken seriously. Wanting it to be recognized that my pain affects my life and limits some things I can do.

#i don’t know if this makes sense #random thoughts with rowan #chronic pain #chronic illness #chronic pain rant #chronic pain problems #chronic illness rant #chronic illness problems

[vela-aureum]

You have to do this for your body, do that for your muscles. You also have to think about that when doing this and that activity. This for your eyes, that for your feet, this for your tendons, joints, whatever. You are not allowed to do this or that at all, bad for this and that and all sorts of things. Oh yes, there are also things to consider when it comes to so-called 'doing nothing'. Oh and every now and then new things come along...

all well and good BUT I DON'T LIKE THAT ANYMORE! I'M TIRED OF THINKING, CONSIDERING, DOING OR NOT DOING SO MANY THINGS ANYMORE, JUST THAT THIS BODY PARTIALLY FUNCTIONS SOMEHOW! AFTER OVER 15 YEARS, I AM MORE FUCKED UP THAN EVER, TIRED THAN EVER OF THIS BODY THAT CAN'T EVEN MASTER BASIC FUNCTIONS

Du musst für deinen Körper dies tun, für deine Muskeln das tun.. An jenes musst du auch denken bei dieser und jener Tätigkeit.. Dieses für die Augen, jenes für die Füsse, dies für die Sehnen, Gelenke, wasauchimmer. Dieses und jenes darfst du überhaupt gar nicht tun, schlecht für dies und das und auch alles mögliche. Achja zu beachten gibts auch Dinge beim sogenannten 'nichtstun'. Oh und ab und zu kommen neue Dinge dazu..

schön und gut ABER ICH MAG SO NICHT MEHR! ICH HABE KEINE LUST MEHR IMMER AN SO VIELES ZU DENKEN, ZU BEACHTEN, ZU TUN ODER NICHT ZU TUN, NUR DAS DIESER KÖRPER TEILWEISE IRGENDWIE FUNKTIONIERT! NACH ÜBER 15 JAHREN BIN ICH ABGEFUCKTER DENN JE, MÜDER DENN JE VON DIESEM KÖRPER, DER ZUM TEIL BASISFUNKTIONEN NICHT MAL BEHERRSCHT

#rant #tw rant #negative #actually chronically ill #chronisch krank #abgefuckt #fucked up #chronic pain #actually disabled #tw caps #chronic illness rant #chronic illness problems #vent #behinderung #vela-aureum

[thesickpanda]

All Aboard the Train of Despair!

 It has been a while since I posted a spoonie rant on my blog. Here goes.

Long story short: I have been sick with a chronic illness for most of my life, which has steadily worsened over time. Recently, I saw a top-rated (and eye-wateringly expensive) specialist in Sydney who, after many blood tests, diagnosed me with a chronic gut infection (I lit up like a Christmas tree for inflection markers). We think we know the exact time and place I became sick, and it was in South Africa when I was aged 11. At that time, I accidentally drank borehole water from a rural area and became violently ill. My neglectful parents never took me to see a doctor about this, even after serious gut problems persisted for years after the initial infection. As the infection went untreated, I grew sicker with every passing year (with a 5 year period of remission when I moved to the UK, before contracting what we think was swine flu in 2009, which effectively restarted the illness as my immune system became overwhelmed). Anyway, in response to this chronic, 25-year-long infection, I have (as I have suspected for years!) developed a mast cell disorder which is wreaking absolute havoc in my body, including, most recently, gastrointestinal bleeding. The specialist decided it was best we treat the mast cell response with stabilizers and H1 and H2 blockers, because he cannot test for, and thus cannot treat, an infection I procured in another country. (He did test me for Australian bacteria, just in case, but unsurprisingly I did not test positive for those). He supported my suggestion that I reach out to South African specialists in the hopes they might provide me a list of microbes and viruses they would test for in their own patients if they shared the same history as me. I would also need to know what lab they’d send a patient’s blood samples to, so I could try to get my blood tests sent overseas to them for analysis. (This would cost me thousands of dollars to do, btw).

I have emailed an infectious disease specialist in S. Africa and had no reply, so I will try an integrative medicine specialist next. I will keep spamming SA experts until someone responds. In the meantime, I started the drug regime prescribed to me by my local specialist. He told me that because my body was so hyperactive (my gut has rejected numerous other MCAS drugs in the past) that it would not be surprising if I rejected one or more of the drugs he was going to trial me on. The first was a mast cell stabilizer which, in theory, should prevent my mast cells from getting all uppity, and thus make way for the H2 blocker and then Low Dose Naltrexone (both of which my body rejected last time).

It is day 5 and.... Guess who has developed diarrhoea in response to the drug that is supposed to stabilize my mast cells so I can eat a wider variety of foods so I can start getting well enough to fight the infection? :D

I have more food intolerances than you can shake a stick at, which has led to all manner of deficiencies and health issues. Chronic low grade infections leads to iron deficiency (I am very anaemic), and the doctor strongly reckons my MCAS is in my lower abdominal tract or even my large bowel, which explains nutrient malabsorption. For example, I have the early signs of osteoporosis as my body cannot seem to absorb calcium, no matter what supplements I throw at it.

I NEEDED the Sodium chromoglycate to work, not just for my physical health which is declining year on year, but also for my mental health. I NEEDED something to go right after so many things have gone wrong.  But it’s basically giving me IBS symptoms so far. I have not been on it a week, and perhaps he will just tell me to persevere and perhaps my body will get used to it and stop acting out, but based on my history? I doubt it. Generally, my body gets angrier and angrier the longer I stay on a medication it does not like, and I get sicker as a result. I was meant to trial out moderate trigger foods while on this drug, but I can’t because I won’t know if it is the drug or the food causing diarrhoea! I also cannot introduce the other 2 meds until such time as my body settles down (which it may never). And, TMI but fuck it, this is the reality of living with any IBS-like disease, I have chronic hemorrhoids and painful anal fissures which take WEEKS for me to get under control. I just managed to calm down my last bout when I started this drug, and guess who has a sore butt hole again as a result of constantly going to the toilet?

I am also recovering from the Covid booster shot I had on Monday, so have had extra Fibro pain and swollen lymph nodes to add to my suffering.

I have emailed the doctor to find out what to do next. Persist and hope for the best? Desist and then what? This bottle cost me $180 and the LDN another $270. I have not even tried the LDN! I was a fool to get both made up at the same time from the compounding pharmacist, because it is looking like I won’t be able to tolerate either. We are haemorrhaging money and cancelling days out, short holidays and basically any form of joy, to both afford and get through a treatment regime that so far is just making me miserable.

I fucking hate everything right now. It’s just an endless misery-go-round of exorbitant doctors, failed treatments, body horrors, financial distress, emotional distress and having to re-explain to my friends that no, sadly, the latest attempt at restoring my health also failed. 25 years of feeling like hell, and now there are grey hairs on my head and creases around my eyes. My youth has been lost in sickness, my opportunities robbed from me, and my life put on pause as I wait, endlessly, for the living part to actually start.

#chronic illness #rant #spoonie life #chronic illness rant #fuck my life #negative #sad and angry #MCAS #side-effects

[house-of-slayterr]

Gotta love running on Fang time/s

Re-dislocate your elbow for the second time this week at around Midnight…

Sleep for Three hours in pain…

Wake up and throw up everything you’ve eaten in the last 48 hours because you have a paralysed stomach, and keep throwing up for the next 8 hours…

Then as soon as you think you catch a break, bam, passing out and mini dissociative seizures for the rest of the day…

And people wonder why I say my “days off” are exhausting 💀 my body be trying to kill me and for what? What did I do? 😭

#chronic illness rant #chronic illness things #chronic pain #10/10 pain #throwing up #gastroparesis #paralysed stomach #passing out #fainting #vasovagal syncope #dissociative seizures #fang rants #non epileptic seizures #ya boi is tried

[triggeringtommy]

abt to leave 4 work and i can’t stop crying thinking abt how i rly can’t handle this whole being an adult shit with my chronically/mentally ill and legally considered disabled ass ….. I need to get on disability for my work and college bullshit for real . Ima get that autism diagnosis and go in with my bipolar with psychosis/psychotic symptoms diagnosis plus the deadly gastroparesis nothing can stop me!! I’ll totally get accommodations to help me survive without having panic attacks over not being able to handle living “ normally “ fuck normal what’s normal to u is not to me bitches

#chronic illness rant #chronically ill #personal #I full on scream cry before I get dressed almost every time I go into work since I’ve started working anywhere #to where I’m puking and can’t breathe it’s ugly lol

[purpledspaceship]

Not really looking forward to getting scolded for not doing homework, but we’re also really tired so I’m not going to.

And then they’ll send us to the assistant principal and email our parents which means we’ll have to waste energy to explain ourselves.

Funny how the school system ignores medically diagnosed chronic illness if you’re not d!ing and can still stand/walk to some extent.

The school system also does nothing to prevent people (including teachers on some occasions) from borderline harassing us.

Rant over.

#rant post #school #school system #chronic illness #chronic illness rant

[harvsboy]

being chronically ill, anxious and sick at the same time is a very interesting experience.

tell me why all of my joints hurt, my nose and sinuses are so congested and like 15 minutes ago my body decided 'fuck you' and woke me up to horrible horrible stomach pain. also the constant anxious nausea is beating my ASS.

i am in misery.

#gold talks #chronic illness #chronically ill #chronic illness rant

[indiecrowarts]

2024 hasn’t been easy so I’m trying to have more of a work life balance- hopefully by working ahead of schedule I’ll be able to stop pushing myself over the edge. I’ve been recuperating since the beginning of January and being that it’s February now I feel hopeful and nervous- but I’m working at it. In the video above I talk about having chronic pain as an artist and the struggles that come with it.

#artists on tumblr #small artist #digital art #procreate #digital illustration #youtube #small youtuber #disabled artist #my art #chronic pain rant #chronic illness rant #chronically ill #chronic migraine #chronic pain #chronic fatigue #fibromyalgia #fibro problems #fibro fog #fibro flare #muscle pain #joint problems #joint pain #arthritis #young and disabled

[solarcicada]

I want to talk about chronic illness for a second. I have a condition called EoE, or eosinophilic esophagitis. It causes various symptoms including stomach pain, acid reflux, heartburn, nausea, vomiting, inflammation of the esophagus, food impactions, and more.

I was diagnosed at five years old. When I was in kindergarten I missed over forty days of school, the vast majority of those absences were due to either having to go in for treatments/tests for my condition or experiencing severe enough symptoms of my conditions that I was unable to attend school. This pattern continued for several years. For the entirety of elementary school, I missed at least twenty days of school every single year.

I eventually figured out how to properly manage my condition through diet changes and medication. I still often experience symptoms due to cross contamination, being misinformed about the ingredients of a dish, or me being careless with my diet, and I am still unable to eat various foods.

Despite this, it could’ve been a lot worse. If my mother hadn’t been so proactive about my healthcare and fought back against doctors saying that I was perfectly fine from a young age, I could have gotten to a point where I choked to death, developed a food impaction and required surgery to remove it, or had my esophagus swell to the point where I required a feeding tube.

And guess what? Because of her diligence and concern for my health, my mother has been, at multiple instances, labeled as crazy or dangerous to me in some way. For trying to get me treated for a condition that I have. Which I have been diagnosed with by medical professionals and which is easily verified. We have had CPS called on us because I was being “starved” (I was put on a hypoallergenic diet which consisted mainly of nutritional drinks, which, while nasty, were, as the name suggests, providing me with adequate nutrients and I was carefully monitored by doctors during this period to make sure that I was doing fine).

I absolutely hate the American healthcare system as it is today. Why do doctors think it’s okay to dismiss patients concerns out of hand like this? Why is it so difficult to obtain a diagnosis or treatment for anything less common than the flu? Why do we let thousands of people, if not more, slip through the cracks of our shoddy medical system every year and just let their health continue to worsen when they could be receiving treatment for their conditions? Why are doctors so reluctant to diagnose and so eager to label people as either crazy or drug-seeking for thinking they (or their child) are sick?

Not to even mention the cost, the months to years long wait times for an appointment if you want to see a specialist, and the fact that a lot of specialties will have, if you’re lucky, a small a handful of doctors in that field in your state, so you are probably driving multiple hours to go to them.

I still can’t get the new treatment for my condition which would improve my quality of life and greatly lessen my symptoms because I can’t get an appointment at the one clinic in my state that’s able to prescribe it. Which is four hours away and has been booked up for the last year and a half.

Sorry for the rant, I’m just pissed.

#chronic illness #healthcare #chronically ill #eosinophilic esophagitis #eoe #chronic illness rant #reading over my medical history from my early childhood pissed me the hell off #healthcare system

[foe-of-fate]

After years I’ve given up on the idea that medicine can take away the pain. If you pop enough pills you can hurt less but the pain never goes away. Not really.

#idk I mean morphine might do the trick #or getting knocked over the head with a frying pan Tom & Jerry style #idk i’m rambling #I just want to have a pain free day #am i asking for too much? #chronic pain #chronically ill #chronic illness #chronic illness rant #chronic pain rant #chronic pain problems #chronic illness problems

[nondivisable]

disabled people are allowed to have hobbies that clash with our disabilities by the way

I'm allowed to like journaling even if my hand tremors make it so I can't do something as "pretty" as an abled bodied person

I'm allowed to like crocheting even if it's bad for my joints and it takes me double the time it would take someone else to finish a project

and yes I'm trying to switch to knitting which is lighter on the hands, but even that - even fucking using my phone - makes my finger hurts

I'm allowed to complain about it, just like you - specially if you're abled - are not allowed to tell me off about it

it's so hard for us to find joy, you're not allowed to police the small things that help

#chronically ill #spoonie #chronic pain #cripple punk #cripplepunk #ableism #disability activism #disability justice #chronic illness #disability rant #arthritis