Chronic Adventures

Chronic pain sufferers unite! Sorry this is a side blog so I can't follow back but I'll follow from my main blog! Btw I will be posting stuff that might b tmi for some people. This is just a place for me to vent. My main blog is...

[flares-of-fibro]

Reblog this if headaches are a regular nuisance in your life

[pammiejr]

[kiwianaroha]

I’m not fucking kidding about ableism today - or any other day, for that matter.

If your response to Nazis marching in Charlottesville is to say ugly, bigoted things about disabled people, then you are just as bad as those white supremacists. You also need a fucking history lesson about how the Nazis treated disabled people because you are more alike than you think.

The Nazis, Klansmen, and assorted white supremacist fuckwits in Charlottesville are not “mentally unstable”

They are not “mentally ill”

They are entitled. 

They are not suffering from a diminished responsibility for their actions - their actions are made with intent and a clear mind.

They are not heedless of the consequences of their actions. They are acting the way they are because they think - correctly - that there will be no consequences.

They are not confused or disorganized in their thinking. They know exactly what they are doing and who they are hurting.

[cementforbones-deactivated20171]

hot & cold

I’m like an older woman going through metapause except I’m 29.

why can’t I regulate my body temperature like everyone else?!?

[itallgetsbetttter]

Spoonie Thoughts:

Tired of people (including health professionals) trying to manipulate me into thinking that my chronic illness is highly manageable, that my chronic illness does not cause pain if I changed my lifestyle appropriately. That this pain is my fault.

If you’re reading this: your pain is real & people who truly want to help you will NEVER minimize your pain.

[crohnielife]

chronic illness skills:

-really good at getting blood drawn -sleeping -tv marathoning -doing everything in pain -know the best heating pads -will sit on the floor if there are no chairs -smarter than doctors sometimes tbh

[notdifferent-justme]

To parents of disabled children...

Don’t ever tell your child what you’ve given up to take care of them. Please, don’t ever say to them, “I do everything for you.” Even if it’s in a moment of anger, hold your tongue. It’s not going to serve a purpose or teach them anything.

These words hurt more than you know and they are not easily forgotten.

[eds-stripes-deactivated20231127]

[spoonprovider]

[mindfogandsleep]

"Everyone gets tired"

Headache as though I’ve not had a drink when for the first time in years I’m drinking the amount I should be.

Visual overstimulation and audio overstimulation. This is a mixture of not being able to focus on things I can hear or see. For example not being able to comprehend a conversation on the phone while other people are having a conversation next to me.

Nausea. a near constant feeling that I need to slow down else I’m going to be sick. Always passes and I haven’t been sick but rising more and more often.

Arm pain making it difficult to carry things or even lift my arms for too long. Extreme pain in hand and wrist when attempting to write. Struggling to type on phone or laptop for extended periods.

Speaking of laptop and phone. Finding them too bright even with the brightness at its lowest.

Skin sensitivity. It’s not that my skin hurts and I’m not at the point where I can’t bare clothes or even touch but there is something on edge about my skin. It feels sensitive to touch, including fans air con and wind and unexpected touch.

Leg pain. This has always been one of my worst symptoms and lately it’s been worse than usual. I’m struggling with any real distance and even getting out of bed or off the sofa is difficult. I’m spending a lot of time feeling as though if I don’t sit down soon I’m just going to fall down.

This nicely leads into not having the strength to support my own body. I’m in a neat constant state of needed to lean against something to keep myself upright and cannot just stand and have a conversation without extreme discomfort, dizziness and pain.

I am almost completely unable to go a day without an afternoon nap. And by nap I mean like 2-4 hours sleep. The doctors say not to sleep in the day but honestly sometimes it’s impossible not to. The times I don’t nap often lead to a level of incoherency and out of it ness that almost resembles being drunk.

Sleeping too much/not enough. The constant need for sleep and the lack of ever feeling refreshed from it means getting the correct amount of sleep is pretty much impossible. I struggle getting to sleep because of the pain I’m in or because of the sheer level of my exhaustion or I wake up in the night and cannot get myself back to sleep and simply have to lie there in pain.

But of Course I am just tired, right?

[theecrohniegrace]

Exercise For Spoonie

Walking around while waiting for the store to fill your prescriptions

[eclectic-like-furniture]

Things You Learn When Chronically Ill

- it’s not actually possible to die of boredom - curly hair dreads if not properly cared for - sitting in the shower is better than advertised - there is zero reason for so many chemicals to be in all of our products - doctors don’t even bother to write down symptoms that don’t make sense to them, even if those are your main reasons for visiting - most people still expect you to come to them instead of them coming to you - small successes are still successes - having a typical life plan isn’t necessary or necessarily healthy - people you barely know want you to explain why you don’t conform to social expectations - you automatically explain your illness to people bc you’re so used to them asking - pain has nothing to do with age - baby boomers have zero respect for other generations - healthcare should be a right - literally every body is different and reacts to the same illnesses differently - it’s so easy to fall off the social map - universities have problematic policies that only cater to a certain kind of disability - you will never ever meet anyone’s expectations or requirements for anything, so it’s best to ignore them - if you have to keep explaining your illness to someone, you probably shouldn’t date them - netflix is a holy grail - nobody should be embarrassed by their health issues bc life happens - getting sick isn’t your fault and if anybody says otherwise, never speak to them again

[lymefight]

THIS 🙌🏻🙌🏻

[perksofbeingdisabled]

SHOUT OUT

It’s easy to preach self acceptance and positivity when it comes to body image, but no one really adresses the uncomfortable parts of having a disabled body.

Shout out to the ones who:

Can’t control their body fluids 

Deal with incontinence

Don’t wash themselves as often as they should

Don’t brush their teeth as often as they should

Drool, fart, sweat, secret mucus, or excrete other fluids more than they’d want to

Get enemas

Get constipated regularly 

Get diahrrea regularly

Have flooding periods

Need assistance to get washed 

Need assistance to go to the bathroom 

Need assistance to get cleaned up

Need assistance to get dressed

Need assistance to eat

Need assistance to perform basic activities 

Need assistance at all

Use feeding or breathing tubes

Wear diapers, sanitary napkins or catheters 

Wear stoma bags

This is for you if you only do it sometimes This is for you if you do it 24/7 This is for you if I forgot to mention your condition (please write it down)

You are not the only one. There’s nothing to be ashamed of. Your body is precious. You are valid. You are rad. You are loved.

[thefibrodiaries]

if you think disability is a bad word and a disabled person calling themselves disabled is a negative thing then maybe you need to change the way you think about the word instead of shaming disabled people for using it.

[fibromyalgiais-blog]

Fibromyalgia is...

Being exhausted for hours, but the moment you lay down in bed, all the physical stimulus makes you wide awake

[medicalmarybeth]

I don’t even have enough spoons to complain about how few spoons I have.

[crohnsgirlinpain]

My local supermarket had this on its disabled toilet I was delighted 😁