Tag: chronic illness

Do you ever get, or have you ever heard of, pain that you “think” but can’t “feel”? Sometimes, I get a running monologue of “ow” and “it hurts” and get tired and weepy, but I can’t point to anywhere where it hurts. I don’t know if it’s related to my chronic inflammation, or maybe a mental illness, or if it’s even really pain. Google’s no help, so I thought I’d ask here and see if you or your followers can relate.

thebibliosphere:

So I don’t know if it’s the exact thing, but when I am too fatigued, the thought “ow that hurts” will go through my head, but if I try to pinpoint it my body will just be like, random or even numb feeling, so I’ve always thought it came from general background inflammation pain that my body was going through, but my exhaustion meant I was detaching from. Cause after a while certain things do sort of become background noise and it just becomes a feeling of numb exhaustion. And then something will spike and I’ll know that’s a very not good pain if I’m feeling it through the brain fog, and I should probably medicate and/or self care more effectively and promptly.

I know I’ve had points where I know the irritability is pain that I’m not accurately perceiving – or as I tend to put it, pain below my threshold of awareness AS pain. And it’s an irritability that has a different quality to it than what’s brought on by hormones fucking with my emotional state, or lack of food/hydration/sleep, though I’m not sure how to put that difference into words.

And I know I have chronic pain issues, and have for twenty-one years now, and also probably depression and anxiety on top of that, though at this point I can’t remember which came first. (Puberty came first. Puberty decided it was a freight train and ran me over, and than backed over me for good measure.)

andreashettle:

mmmyoursquid:

seananmcguire:

mmmyoursquid:

chameleonchild:

eenymeenypia:

mmmyoursquid:

People love to talk about whether or not disabled people can work

but if you can work just fine and your disability is destroying your ability to have a life outside of work (because work takes all your energy and more)

Dead silence. Nobody cares.

File this under, oh you can be active for 4 hours? You can work part-time. Um no, I have to get ready for work (30 min) get to work (15 min) get home from work (15 min) feed myself all day (30 min) maintain myself, my home and my life (15 min, yeah right), which leaves 15 min for work and absolutely nothing else.

This is so accurate, back after I’d relapsed I wanted to try and go in for one class at school so I could still stay in contact with the education system. I let slip during a meeting that I managed to drag myself to that I could manage about 4 hours of activity a week, which the teacher sprang on to mean I was being lazy for just trying to get to 1 hour class. Never matter that it was 30 minutes travel, that I would have to get washed and dressed, that I would probably still need to recover for 3 days from it. 

Far too often abled people see the things they do easily as “non activities”, they don’t realise that for many disabled people these things have to be carefully planned and measured, and sometimes they simply can’t be done.

reblog bc the non activities thing seems really important words

I get X number of pain-free steps per day right now, which means that, for large conventions (like SDCC), I need to be in a mobility device.  I had someone ask if I used up my steps every day before transferring to the scooter, and look surprised and a little horrified when I said “no, I save them so I can go to the bathroom unassisted.”  Like, they had never considered that walking is involved in peeing.

!

Reblogging for the important point that the term “activity” may mean something very different and much broader for a disabled person with a chronic pain or fatigue related condition compared to its meaning for a non disabled person. If you’re tired enough, simply sitting up in a chair rather than lying in bed is an activity that drains energy otherwise usable for other things. A thing I knew from other people with pain and fatigue related conditions, but worth reinforcing for followers who didnt know or had forgotten.

On Cures

cornerof5thandvermouth:

chronicallywild:

celebgil:

avilociraptor:

I want to be able to want a cure without the disability community thinking that I have internalized ableism.

I want the disability community to realize that there are some things worth curing, and some things that should not be cured.

If you are healthy and disabled you do not need your disability cured.

You can’t actually cure a disability anyway. You cure illnesses. Not every disability is an illness.

If you are disabled and not healthy it should be okay for you to want a cure.

If you are disabled and not healthy it’s also okay to not want a cure, as long as you leave space for the people who do want one.

The disability movement needs room for people who need or want cures.

Don’t infantilize people who are ill and disabled by assuming we just have a major case of internalized ableistm. Society infantilizes us all enough as is, we don’t need more of it from the community.

I am disabled and chronically ill. I want me some cure for my illnesses. If I’m still disabled after, that’s fine.

My problem isn’t being disabled. My problem is being chronically ill.

Absolutely, I wouldn’t mind having to use my cane, being restricted or having treatments even, but if I could not feel like hell every moment of every day. If I could maybe not have to retreat into darkness and silence when my brain decides it’s time for the ‘migraine agony rave’. If I could not be at 7 on the pain scale on a good day, that would be amazing.

I accept my disability, but I would love for someone to say “You know what, we found a cure for chronic migraines, and actually we can fix your discs surgically after all! Oh and all the other weird painful things that are wrong with you? We worked out what they are and here’s a treatment.”

It’s not internalised ableism to want to not be in pain anymore.

IT’S NOT INTERNALIZED ABLEISM TO WANT TO NOT BE IN PAIN ANYMORE.

I’m here for this. There are many ways in which I still struggle with internalized ableism. I try to be inclusive and never discriminate, but of course I make mistakes. I admit them and I do my best to learn.

But my wanting to be healthy isn’t ableism against myself. I just want to be able to not be in a state of constant pain and exhaustion. That’s about suffering, not discrimination.

i would love for there to be a cure for some of my mental shit, i would like to not feel like absolute shit 24/7, i feel you

kittenwitchandthebadvibes:

I am struggling with
😭Depression
😨Anxiety
😠Anger
😟Grief
🤔Impulsive/intrusive thoughts
🤕Dysphoria
😕Maintaining control
🤗Relationships/family/friends
🤢Illness
😔Abusive situations
🙃Everyday life
😷 Maintaining self care
🤐 Something private
😤 Something else

and…

😺I just need you to know
🌹  I need a little kindness and consideration
🐾I need to be left alone for a bit, I will contact you when I’m ready
🐋I need company
🙊I DON’T want to talk about it
🗯I need to vent
❓ I need advice
👍 I need reassurance
💅I need a distraction
❤I need to feel appreciated
🦄I need to feel accepted
💌I need someone to check up on me
🎈 I need someone to ask me how I am
👂 I need someone to talk to me
💤I might not have the energy to communicate
💨I need someone to help me with physical tasks
✈I need to get out of the house
🛀I need to be somewhere comfortable
🐰I need someone positive
🕊I need someone sympathetic
🥑I need encouragement with taking care of myself

😭😨😠🤔🤕😷😤

and…

❤💌🎈💤👍

jabberwockypie:

viridian-witch:

that-eds-life:

Physical touch is very startling, and can be triggering. It also can hurt people!
If you don’t have permission, don’t touch!! Why do I have to say this!!

Many people with chronic conditions (especially fibromyalgia or neuropathy) experience allodynia, which is the sensation of pain triggered by light pressure. I have days where brushing against my soft sheets or cotton underwear cause me pain. Imagine what an unexpected pat on the back or hug would feel like someone in this state. If you can’t imagine, I’ll tell you: it’s fucking excruciating. Also, don’t be a creep and touch people without asking.

Also if you touch someone who isn’t expecting it who has PTSD, you might get an elbow in the face.  Or groin.  Or … look, it’s been close a few times.

And I LIKE being touched! Most of the time! By people who I said are okay for touching!

Unless I’m upset in a way that it’s a time for NOT touching, which is also a thing that should be respected.  Someone being okay with being touched one time does not mean they are ALWAYS okay with being touched.  Even if one time they wanted a hug when they were upset!  If it is a DIFFERENT KIND of upset, they might not be okay with being touched then.

There are emotionally abusive parents who either use withholding touch as a punishment or overriding a child’s boundaries or desire for personal space or choice about being touched.  (Like “You’re upset, so you need a hug to shut you up”.  It’s not unlike that creepy “shut up kiss” trope in movies.)  Or both.  In adults, that can make your relationship to being touched REALLY WEIRD.  (Even if you’re touch-starved.)  Consent is IMPORTANT!

“Would you like a hug?” is a good phrase.

allez-argeiphontes:

thefibrodiaries:

coming to terms with and accepting your illnesses is good and healthy it does not mean you’re “giving in” or “letting them win”

also: there are no medals for getting off your meds, stopping therapy or no longer needing regular appointments.

You are not weak for needing ongoing treatment. Accepting your condition and getting the help you need is HARD but it’s a massive achievement and you should be proud. You got this.

Medicine’s Women Problem

lothkitten:

geekandmisandry:

pom-seedss:

chronicallytrying:

berniesrevolution:

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(Continue Reading)

TheNib.com

@thenib

THIS!!!

The Continue Reading link is somewhat small so I just wanted to point it out i the OP so people don’t just stop at this point of the comic.

SUPER relatable, but the rest is so important.

If you are relating to this then I advise clicking the link for the rest.

I had kidney stones for at least 13 years before they figured out what was wrong. Most doctors assumed IBS or period pains. Yeah. Not so much.

Medicine’s Women Problem

Dear Spoonies

koiotchka:

spoonprovider:

trianglewins:

It is okay to whine.
It is okay to acknowledge that your situation sucks and that it’s unfair.
It is okay to throw yourself a pity party.
It is okay to be pissed off about the things you go through.
You don’t have to grin and bear it.
You don’t have to suffer in silence.
You have a right to talk about your struggles and no one has a right to shame you for that.
Do what you need to do to get through the day/flare/episode/life.
Your pain is legitimate and you are under no obligation to hide it.

Just a reminder

@elegantmess-southernbelle

@harvynhart

@knowledgeofemeralds

@morgynleri