#chronical fatigue syndrome

[ta-matia-tou-morfea]

My best friend Nevra Liz is a 27 year old woman in Karachi, Pakistan who has been suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Ehlers-Danlos Syndrome (EDS), and related comorbidities such as dysautonomia since childhood. However, her health has taken a dramatic downturn in recent years with the onset of severe Premenstrual Dysphoric Disorder (PMDD). Before becoming dangerously ill she studied many languages, and later used her translation skills to help out disabled patients all over the world, and advocated for disability rights. She is no longer able to do any of these things. 

The first smaller goal for Nevra is £4,000 (equivalent to $4898.30, euros: €4661.12)

This includes laparoscopic surgery

at Aga Khan University hospital and a hospital stay, which costs about 670,000 PKR or £2,500.

Nevra needs relief for her excruciating pelvic pain as soon as possible. (Her pain is 9 to 10 on the pain scale every day.)

The remaining £1,500 will go towards hospital stay for additional days, food, medication, transportation, home care, at home nurse, caregiver, supplements, and medical device support items.

We have less than 4 weeks to reach our goal and we need the doctors to continue taking the pain seriously and not deciding against the laparoscopy because of a lack of funds and putting Nevra on random medications again.

The GoFundMe link to donations: https://www.gofundme.com/f/save-nevra

To know more about the case:

https://www.meaction.net/2018/04/05/chronic-illness-foundation-launches-in-pakistan-call-for-support

Your help is valuable and we appreciate it really in these crucial times.

May God bless you 🙏

[lupusbaby]

Some people don’t want to hear this but sometimes accessibility is not sustainable or eco-friendly. Disabled people sometimes need straws, or pre-made meals in plastic containers, or single-use items. Just because you can work with your foods in their least processed and packaged form doesn’t mean everyone else can.

[chronicallydragons]

anyone else ever wish they could lie down harder? Like, I'm already horizontal, but I need more horizontal. I need to be absorbed by the floor. I think that would fix me

[crippledpunks]

i wanna say fuck you to anyone who shame disabled, chronically ill & neurodivergent people, especially homebound folks, for "spending too much time on their phone/on the internet/etc." when it's the only (Somewhat) accessible way for them to experience the world. many people don't get to get out much even if they want to because of their disabilities. shaming someone for trying to connect with the world, make friends and engage with hobbies in ways that are accessible to them is beyond cruel and unnecessary

[mybodychoseviolence]

“surely this will not cause my chronic illness to flare up,” i say, actively doing something that has never failed to flare my chronic illness

[potsiepumpkin]

Useful information

[i-the-spoonie]

[stars-and-branches]

Chronic pain pisses me off cause I'm not even incapacitated for like a cool or badass reason instead my body is throwing the world's biggest temper tantrum because it's raining outside

[mindblowingscience]

In 2016, years before long COVID was a thing, the US National Institutes of Health, the largest single public funder of medical research in the world, launched a study into a long-neglected and puzzling condition: chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis, or ME/CFS. Eight years later, the results of that study are finally out. In one of the most thorough investigations to date, researchers took a deep dive into a small group of 17 people who developed ME/CFS after an infection and found distinct biological differences compared to 21 healthy controls. "Overall, what we show is that ME/CFS is unambiguously biological, with multiple organ systems affected," neurologist Avindra Nath, lead researcher of the study and clinical director of NIH's National Institute of Neurological Disorders and Stroke (NINDS), said in an interview with JAMA. For decades, many doctors had dismissed ME/CFS as a psychosomatic condition that was 'all in patients' heads'. Now there is little doubt: a host of biological changes underpin ME/CFS.

Continue Reading.

[jenacat8-blog]

Being neurodivergent and chronically ill is crazy because you already have issues with executive functions and then your body hinders you even more. AND your sensory issues are heightened by the pain you feel.

[a-sassy-bench]

do able-bodied people not understand that if disabled people call out of work every time they don't feel good that we would call out of work every fucking day?

like honestly. what do you think being disabled means?

[anxious-and-in-pain]

it’s okay to do things that make your symptoms worse (as long as you’ll stay safe)

every once in a while you need to eat something yummy. or go on a walk. or a trip to the zoo. take a hot shower. cry your eyes out. dance. listen to music. draw for way to long. write. laugh. sit in a cafe with a friend. paint your nails. dye your hair. go on a run. pet a cat

sometimes you need to do things that are cathartic or make yourself feel alive. sometimes you need the reminder of why you’re fighting so hard to stay alive

this is your reminder that just because it makes your symptoms worse, it isn’t always the wrong thing to do. there can be value in these actions

[disabled-bug]

I’m so proud of people living with chronic health conditions. That shit is HARD. Idk who needs to hear this, but if no one else has said it: I’m proud of you. You’re sticking it out through so much pain and grief. That’s no small feat.

Every small thing you do for yourself health adds up. The grief is heavy and it comes from a place of love. The grief knows the pain is wronging you.

I’m proud of you. I hope on the good days you can be proud of yourself.

Keep going.

[crippledpunks]

chronic fatigue weaves its way into everything. people love to tell disabled people they'd love to rest as much as we do, but they fail to understand how tired we are while we rest. we are not relaxed, we are generally pretty miserable, either from pain, irritability, or fatigue- which bleeds into every aspect of your life. being too fatigued to get up off of the couch means that you're too fatigued to get to the cupboard to pull out pans to attempt to start cooking.

the steps hidden within steps that are required to do a lot of tasks related to being a "functioning adult" are daunting, there are often way too many steps necessary to make "Simple" foods or do "simple" chores for disabled people to accomplish these tasks. chronic fatigue often means that even waking up from a nap or night's rest requires time to adjust to and power through

waking up is a process for me. im often no more alert and awake hours after i've woken than I am right after doing so. caffeine does not help fatigue- at least not at safe doses, for me, anyways. many days the act of moving from my bedroom to my living room is too much. taking dishes to the sink can be too exhausting. i have began falling asleep in front of the kitchen counter while standing because i realize the amount of steps required to clean the counters, or do the dishes, or prepare a meal that all of my energy instantly bleeds away

it's okay if you feel this way too. i have been dealing with chronic fatigue my entire life and it cost me my best paying job. i lost my ability to work because of it. it's not just you being "sleepy", you are genuinely too exhausted to function. you do NOT have the energy levels other people do, and that's okay. it's okay to let yourself be tired sometimes and address that instead of trying to pretend you're not tired.

i wish you good luck. you are loved

[chronically-mars]

I never truly knew the meaning of friendship until I became chronically ill and disabled. When my health declined I had people leaving left and right because I couldn’t keep up with other teenagers. I stopped having people check on me, I stopped getting invited to stuff, stopped being included, until I just got left behind. Now as an adult I found friends who check up on me, make sure whatever we do is accessible to me, always making me feel included, they are my support system.

Check up on your chronically ill and disabled friends, keep including them in stuff even if they have to end up canceling it. Being excluded for something you have no control over is horrible and no one should go through that.

[potsiepumpkin]

When the chronic fatigue is chronic