chronically ill and coping (ish)

Hi, im Rebecca im 21 and have recently been diagnosed with a chronic illness. This is mainly a place to vent and share experiences. She/Her

[chronicallyillandcoping]

Introduction:

Hello, im Rebecca im 21. Over the past couple years ive been struggling with chronic pain and loss of mobility amongstover things. Only recently have doctors started believing me and i was diagnosed with complex regional pain syndrome. However, this is now thought to be wrong and im undergoing more tests.

I mainly started this account to meet people who understand chronic illness, share experiences and even vent.

Feel free to ask questions below or introduce yourself :)

[fibro-memes]

[xxbl00dsh3dbunnyxx]

Pain free days feels like a lie invented by the media

There's NO WAY everyone else just feels fine 99% of the time...no headaches, no leg pain, no hand cramps, no nausea

SCAM

[chronicallyillandcoping]

A day in my life:

Wake up in pain

Be awake in pain

Fall asleep inspite of pain

Wake up in the middle of the night due to pain

Fall back into a pain filled haze like sleep

Repeat

[trainingseasons]

Friendly reminder that this blog is pro-choice and if you don’t think everyone should have full control of their own body, then kindly unfollow me right now and go to hell

[chronicallyillandcoping]

Hi, I know we dont really talk but r moots(I think) but I wanted to say that I hope ur doing well!! Or as well as u can. Sending hugs if u would like them or maybe a plushy instead :3 <3

Aww thank you i really appreciate this. Im doing okay ive been quiet on here but am definitely looking at getting back into being more active. I hope youre doing well and am sending hugs right back if you would like them :) <3

[chronicallyillandcoping]

Warning : cringe pots themed valentines pick up line

Are you standing up?

Because you make my heart race

Happy valentines day to all my fellow disabled and chronically ill people out there. I hope you all have a manageable symptom day :)

[acestims]

I’m sick to death of hearing “see! Accessibility benefits everyone, not just disabled people/mobility aid users/chronically ill people/etc!!” That shouldn’t matter. Even if the only people in the world that would benefit from an accommodation are disabled people, we still deserve it. I’m sick of non-disabled people constantly being centred and catered to with accessibility content. Every time someone makes an add-on to a post about an accessibility device or whatever, it just feels like they’re saying that our needs aren’t enough to warrant accommodations, it has to benefit non-disabled people too. We deserve accommodations no matter if non-disabled people can benefit from it.

[chronicallyillandcoping]

Does any one else have small little lies they tell about the medical side of their chronic illness that just makes their lives easier?

Usually when people ask I'll just say i have a condition called POTS and its a nervous system condition that impacts my heart rate.

But if a person im talking to isnt understanding that for example they can't for whatever reason grasp it is a nervous system condition or if i know their response to my explanation will be invalidating i have a really bad habit of just saying i have a heart condition.

Which i know is wrong because it isnt true but a lot of the people i meet who will ask about it dont want to be educated they want to know why i look like im going to pass out all the time and sometimes i just dont have the energy to explain it properly 4 or 5 times just for someone to go are you sure you arent just anxious.

Simply saying i have a heart condition and sometimes when i stand or get hot my heart rate spikes and it makes me dizzy although is wrong is so much easier.

[fibro-memes]

[hometoursandotherstuff]

[lupusbaby]

Being chronically ill is like

“It’s fine”

“It’s fine”

“It’s fine”

*complete mental breakdown because you can’t do this anymore*

“It’s fine”

[chronicallyillandcoping]

New favourite thing to do is to remind people of how much they hated lockdown when they say they wish they could stay home as much as I do.

Like no you dont you were miserable when you were forced to stay home all day everyday for the good of your health. Thats my entire existence as a disabled person so pack it in.

[janeacular]

can they invent a mobility aid that helps with the joint pain & also does NOT cause different joint pain in a different area from use

[chronicallyillandcoping]

Not me having an internal breakdown at the bus stop because its dawned on me that there hasnt been a single moment in the past 4 years where i haven't been in pain. Then having to get on the bus and go about my day as if my life isnt and wont forever be ruled by my disabilities.

[softgritspoonie]

July is disability pride month.

Please keep in mind that not all disabilities are visible.

If someone says they're disabled listen to them no one should have to lay out their entire medical record to be believed.

no one is too young to be disabled.

Stop suggesting cures for disabilities you know nothing about.

disabled is not a dirty word.

[chronicallyillandcoping]

The love i have for KT tape is unmatched but it has highlighted a wider issue surrounding the cost of things that make life for disabled people easier. I dont know if its just my area but i went into Boots (a shop here in the uk) and a single roll of pre cut KT tape cost £14. Today i've gone to use it and its not very good in terms of stickiness. I know from experience i can order it cheaper online, but not by a lot. I understand there's a cost of living crisis and inflation is one the rise but vital components to disabled peoples lives are becoming unaffordable especially for a group who experience high levels of poverty.