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#FND

2 posts2 participants0 posts today
LeliBug Vaeda

BLOG | Betrayed By Our Nation... The PIP Wars Are On | Phoenix DragonQueen

The government attacks on Disability Benefits, #PIP on Disabled People is horrifying. I'm a permanent wheelchair user, who can’t use the toilet, needs her mother to look after her, unable to leave the house, has #Dysphagia, is #paralyzed, in agony, has Functional Seizures, #FND & #Fibromyalgia. Severely #disabled — and ALL because I got PNEUMONIA aged 32...
😡☹️😖😢🫣
#disability #disabilityrights
phoenixdragonqueen.webador.co.

Woman with black wings, on her knees and head in her hands is surrounded by skulls and darkness of demaons
ALT
LeliBug Vaeda

Between being in IMMENSE PAIN, with SEVERE Exhaustion & FREAKING OUT about the Brazen Political Attack on #disabilitybenefits...There hasn't been much room in my head for writing. I'm struggling to see past any of it.

The shock of the sudden #PIP attack has thrown me for a loop, shaken me & left me panicking.

It's a reckless manoeuvre - nothing but a car crash waiting to happen.

I was made to do a reassessment at Christmastime; No idea how that going to go now...
#FND #fibromyalgia #Disabled

LeliBug Vaeda

BLOG | Time Has No Meaning... Neither Does Life

Everything is too much and too little...

delphinemusic.wordpress.com/20 #Abscess, #Anguish, #autism #Autistc , #AutisticBurnout, #ChronicConditions, #ChronicIllness #chronicpain #Degrading #Depression #Despair #Destroyed, #Devastated, #Disabilities, #Disability #Disabled, #Distraught, #Distress, #Distressed, #Fibromyalgia, #Fibroplegia, #FND, #Health, #Healthcare, #Incontinence, #livingwithdisability #MentalHealth, #neuropathicpain #Shame

DelphineMusic | LeliBug Phoenix · Time Has No Meaning… Neither Does LifeTime slips by and means Nothing. Days, Weeks, Months and Years just… vanish… into a dim mist of vague dreamlike memories of barely-there Things-That-Happened…I exist barely in any…
David Tuller

Video of October Talk in Ireland on How “Biopsychosocial” Research on ME, Long Covid, and Related Illnesses Harms Patients

By David Tuller, DrPH

In October, I spent 10 days traveling around Ireland and giving a talk called “Bad Science, Bad Medicine: How Flawed Biopsychosocial Studies on ME, Long Covid, etc Harm Patients.” (I wrote about the trip here.) I came as a guest of the Irish ME/CFS Association, which had previously arranged similar tours with two physicians who are ME/CFS experts–Dr William Weir, an infectious disease specialist, and Dr Nigel Speight, a pediatrician.

I started in Dublin and then traveled to Bray, Cork, Limerick, Galway, and Sligo. The Irish ME/CFS Association has now posted a video of the first talk, in Dublin. (I think the talk got a bit smoother as I went along. Oh, well!)

(View the original post at virology.ws)

virology.ws · Trial By Error: My Tour of Ireland, Through Wind and Rain; Slides of My Talk | Virology BlogBy David Tuller, DrPH Last month, I took a quick speaking tour around Ireland at the invitation of the Irish ME/CFS Association. I first became acquainted w ...
#CODES#FND#LongCovid
Ben De Nevis

The Patient Voice: Antidepressant withdrawal, MUS and FND – BJGP Life

@recover2renew 🐦
The #PatientVoice: #Antidepressant withdrawal, #MUS & #FND
"🤔What is the person’s #medication history – from the very first #prescribed meds, then over the long term?
🤔When did the ‘#unexplained’/ ‘#functional’ #symptoms first become apparent.." 🤔😳

bjgplife.com/the-patient-voice

bjgplife.comThe Patient Voice: Antidepressant withdrawal, MUS and FND – BJGP Life
Ruben

I worked a late shift last night. Ended up one-on-one with a woman who had a rapid decline in neurological responses. I have cared for this intelligent, kind and independent person for years. Despite escalating up the care pathway, in the end there was little we could do (aside from practical nursing care obvs) except be empathetic and kind.

As the shift ended she recovered her senses.

This is her life. She lives in a broken body and just wants to be home.
#nursing #FND #neuro

Dgar

2020: Started recording original songs and uploading to Soundcloud to a positive reception. Original project was to grab people I had worked with in the past and record something with them. Recorded a few songs with Reid playing some bass and guitar parts on various tracks, and he sung Proud Woman. Recorded one song with Kaaren which Reid also played some guitar on.

2021: Worked on some music solo after having some difficulties with arranging recording sessions with others. Undertook the massive task of learning Blender to make the Space Pop music video.

2022: Lost job. Lost a ton of project files from a computer crash. Attempted and catastrophically failed to assemble a band to take #DgarMusic to the live scene. Ended up deciding that if Harry Nilsson can write songs without ever performing live, so can I. Got some part time creative work. Then #Dgar joined Mastodon.

2023: Told awful jokes, posted terrible memes, and promoted my music on Mastodon. Met amazing Fedizens and connected with incredible musicians, songwriters, and artists. Got played on underground online radio stations, created my own hashtags, and grew my audience.

2024: Wanted to get back into recording, so my New Years Resolution was to write a song a month. Did my first collaboration with an artist from another country (@Onj) which was awesome. I ended up breaking my new years resolution after six months and six new songs after family tragedy struck thrice. My mother passed away, and a few weeks later, we lost my older sister in a traffic accident. The stress of all this may have been the reason my younger sister then presented with “Functional Neurological Disorder”, or #FND. Thankfully she is on the road to recovery now, although that road seems very long and difficult. I’m currently dabbling with some YouTube projects while I get my songwriting mojo back, namely #CillasGarden, and a #Valheim Let’s Play.

Future: I’m having trouble writing songs at the moment - I’m not in the right headspace, I guess. I’m jotting down ideas here and there, but I’m also toying with the idea of working on some sort of album. I really want to do a #Satisfactory Let’s Play when 1.0 drops next month too. I also have to figure out how to get more people to listen to my #music because the stats would suggest only about 1% of the people following me have ever played one of my tracks. The stats are on the right trajectory though which, I hope, is an indication that I’m doing something right.

Once again, I would like to express my deepest gratitude to all of you who enjoy my work and share this journey with me. Your support has kept me going, even when all I wanted to do was give up.

Big love. Forever grateful.

ffm.bio/dgar

Screenshot of stats from Soundcloud showing an increase in the number of streams of Dgar tracks year over year from 2020 to 2024, with an exception in 2022 which dips to its lowest point.
ALT
#DgarLore#introduction
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