Kelly

On my own unknown path.
PhD candidate, disability and chronic illness advocate with a drain in my brain.
#NEISvoid #IIH

[Kelly @BrainDrainKelly]

Friends with #IntracranialHypertension :
My PhD research explores our shared experiences of life with #IIH and values your expertise, opinions and perspectives as a person who lives with it. Please consider participating in this short survey https://t.co/VFtFIWmH6p

[Yousef Hyder @YousefHyder94]

Professor Sinclair discusses how intracranial pressure changes with posture, and also rises overnight!
@IIHDrBirmingham @ArmyBrainDoc @DrMollan @O_Grech @Aero_Med #AsMA2022

[Chronic Illness Inclusion @chronicinclude]

EHRC refuses to apologise over ‘shameful’ long Covid blunder – Disability News Service https://t.co/5dLxhTzJ9v

[Kelly @BrainDrainKelly]

Gatekeeping social and economic support is a perfect example of the institutional/attitudinal barriers that many people with chronic illness disability experience - people are disabled because of this oppression, not (just) because of their illness effects

[Chronic Illness Inclusion @chronicinclude]

This is shocking and appalling ignorance. We will be taking a stand

[Chronic Illness Inclusion @chronicinclude]

CII is proud to be hosting this ground-breaking webinar on Disbelief and Disregard in relation to medicine, chronic illness and disability.
Part of our collaboration with @DrBEvans and Liverpool University.
https://t.co/zZPiULLZZw
Thread:

[Kelly @BrainDrainKelly]

@thesiswhisperer My friends and I call this 'productive procrastination'. Latest offerings include watching youtube vids about PhD productivity, making ones' Notion dashboard asthetically pleasing, and curating a kickarse spreadsheet to house a glossary of terms

[Kelly @BrainDrainKelly]

More great research from @IIHUK highlighting the #stigma and #medicalbias faced by people living with #intracranialhypertension

[IIH UK @IIHUK]

"It is evident from the responses by pwIIH to this survey that obesity (weight based) stigma is being experienced during their consultations with health care professionals."

Read this latest research on our website here:
https://t.co/qEKCMJYL2J

[Kelly @BrainDrainKelly]

@chronicinclude The thought just exhausts me... Navigating the crowds, managing my light/sound sensitivities, is the protest in one place or is there a walk/march involved? (Can I sit if I need to?) - how many hours/days will this cost me in recovery time?

[Kelly @BrainDrainKelly]

@channelera

[Kelly @BrainDrainKelly]

@BynThereDoneTht @bennessb I hope you have better luck with telehealth than I have - I called them after waiting 2hrs, told "should be only 10 more min"... eventually received a cancellation text 6 hrs after that. My screams into the void seemed to go unheard.

[Kelly @BrainDrainKelly]

This thread has feels.

[hannah s. f. ♿️ @HannahntheWolf]

Explaining how much I have to sleep to my nondisabled or even my disabled but non-chronically ill colleagues is always hilarious because they *never* believe how much I have to fucking sleep.

[Kelly @BrainDrainKelly]

@HannahntheWolf This thread has feels. Had someone tell me they were envious of my lifestyle... I didn't know where to begin with that one

[Retention and Disability in Higher Education @RetAndDisab_HE]

Call for participants: I'm researching the #Retention of #DisabledStudents in #HigherEducation and currently recruiting participants. I would like to talk to disabled students in #ScottishHE and disabled people who had to leave Scottish HE early. Get in touch if interested!

[hannah s. f. ♿️ @HannahntheWolf]

I don't think crip as claimed politics, community, & culture can be limited to the physically disabled. Crip weaves its way through all disabilities, learning & anticipating justice for all disabled people. It thrives on its synergy with Mad, d/Deaf, and other disabled politics.

[Kelly @BrainDrainKelly]

@wonder_cripple I asked if I could pick up from a different point, and the library offered to have to book couriered to my home - where I wasn't (I was on campus, where the library and collection point is located), therefore taken to a depot for pick-up, accessible only by car. And I don't drive

[Kelly @BrainDrainKelly]

@wonder_cripple Click and collect library services - sounds accessible. Until you go to collect and find the collection point behind (unnecessary) magnetic security devices - and you have a magnetic based medical device preventing you from access.

[Kelly @BrainDrainKelly]

This is not ok. Giving us a medical device and then witholding other medical treatment because the "system" can't communicate with each other is abuse.

[Donna Mo @donnamo_]

Have waited 3 yrs for an #MRI on my spine & brain.
Got the call on Fri evening. Answered all ques & said I have a shunt.
Had to travel to #Belfast for 7pm tonight.
Had to ans more ques & said I have a shunt.
Turned away.
And just when fuel’s so expensive.
#shuntlife #iih

[Kelly @BrainDrainKelly]

@donnamorrison_ I hear your pain. "Urgent" referral by neuro who knew I had a shunt, copy of shunt card given and I told them I needed it checked afterwards -- 3 cancellations. It's essentially abuse (withholding treatment).

[Kelly @BrainDrainKelly]

@wonder_cripple That I need to act more sick if I want proper care/attention

[Kelly @BrainDrainKelly]

@JoannaNoBanana 1. How hard I work when I am "on", and that when I am "off" I literally can't get off the couch/out of bed, and can barely put together a sentence.
2. How much time, energy and money goes into healthcare. It's all-consuming and something "healthy" folx take for granted.