wheelchairtetris

[wheelchairtetris]

I ❤️ when pain and fatigue leads to weakness its so great being able to not lift things or support my body

[wheelchairtetris]

Not even back at full time this week at work and my life already feels like its crumbling. Hell world.

[wheelchairtetris]

Me, any time i feel bad: surely the only thing that would help is a room temperature flat ginger beer

[wheelchairtetris]

oops ! accidentally noticed the background pain levels and now i want to cry

[wheelchairtetris]

Yesterday I was at [work event] with predominantly people I dont work with day to day and at lunch no fewer than four people asked me if I needed help (just waiting in line as a wheelchair user)

[wheelchairtetris]

If you're reading about a medical condition and it says "predominantly affects white (women/men/children) I need you to know that's simply because black people/people of color with said condition are underdiagnosed, misdiagnosed, not listened to, or die before accessing diagnosis and treatment due to medical racism

[wheelchairtetris]

Severe ME is a nightmare and I wonder if that's why they don't believe us?

Like, if they admit it's a real disease and stop hurting sufferers they have to admit that they tortured sick people.

Which seems hard bc. Yknow. Dr's.

late reply but this is it. sunk cost. i could write an essay. a lot of practitioners & institutions would lose face if the harms done to ME patients were publicly acknowledged by the medical world. docs have spent decades doubling down on framing ME as a willpower issue even as evidence consistently shows otherwise. it’s still the norm for docs to tell ME patients they’re manifesting their symptoms, to say every abnormal test/measurably physiological symptom we show is an outlier that should be ignored, to recommend us empty treatments based on either no evidence (e.g lightning process) or based on flawed or unethical studies that have been debunked in the context of treating ME (e.g graded exercise), for it to be known that some of these treatments can disable ME patients long term.. and the medical world broadly accepted all that without objection. if ME patients deteriorate from the treatment we get, it’s supposedly bc we have a negative mindset; the focus on mindset puts all responsibility on the patient and absolves the doctor. no practitioner is ever culpable if the disability is all the patient’s fault.

i guess this is why the changes to the ME treatment guidelines have been so quiet and haven’t really been publicised despite being groundbreakingly important; graded exercise therapy was removed silently from the NICE guidelines in 2021 because it’s known to have caused harm, but there’s been no public outrage and no apology and no physicians withdrawing their past statements where they happily endorsed and pressured patients into GET, bc it wouldn’t be a good look to admit that their past practices towards ME patients were pretty much vibes-based and caused damage to a sizeable portion of patients.

i wish healthcare professionals were able to admit their wrongs instead of sweeping harms under the rug en masse. if we can admit our past mistakes in handling ME, we can move forward and build safer treatment practices. but it’s hard to move forward when doctors are still doggedly focused on defending past practices no matter how many lives they hurt irreparably

[wheelchairtetris]

Out of my migraine nasal spray. Took the oral meds that make me nauseous. Got nauseous. Is anyone even surprised.

[wheelchairtetris]

Obligatory I am not in crisis. But this is why disabled & chronically ill people kill themselves.

[wheelchairtetris]

Ok not even my back this time but while rolling out ink every time I moved my arm back and forth I got stabbing pain up my arm. Which. Usually only happens when opening bottles or putting heavy things down (milk jugs, cat, etc). And alas will remain a mystery.

Don't have craft hobbies if youre disabled w back&neck pain btw

[wheelchairtetris]

OUCH

Don't have craft hobbies if youre disabled w back&neck pain btw

[wheelchairtetris]

It is so disturbing how every time a disabled person is brutally murdered by their caregiver, the conversation revolves around what we can do to give more support to caregivers and not the welfare of disabled people and how to give people with disabilities more agency and support in escaping abusive and neglectful situations. Don’t get me wrong, caregiving is hard but I am so tired of the “I feel so bad for the caregiver, their life was so rough and then they just snapped :(” narrative and not acknowledging that the disabled individual was uniquely vulnerable and completely at the whim of someone who despised them, felt they had no inherent worth and killed them. The rates of abuse experienced by disabled people are always conveniently left out of the narrative. So often it’s twisted into something justifiable, that you should relate to the murderer and not the victim. It is so sick.

[wheelchairtetris]

Yeah i feel a little poisoned But i keep on rocking

[wheelchairtetris]

Ouch ouch oof ouch

[wheelchairtetris]

Don't have craft hobbies if youre disabled w back&neck pain btw

[wheelchairtetris]

[wheelchairtetris]

My headache aka my crown of thorns because im suffering more than jesus