Throwback: packing b4 landlord sold the property (homeless since Sept & on the street at end of Mar if we don't find something asap...!)
Ways to help us🆘
V: venmo.com/u/Donia-Lilly
Art: donialilly.com
eBay: ebay.com/usr/island_art
PP: paypal.me/donialilly
Gfm: gofund.me/283d83d9
#CatSky #Cat #HELP
#MyalgicEncephalomyelitis anniversary. A weird virus changed my life forever 20+yrs ago today. So many years lost. Then 18 yr later I got #Covid 1/5. Organ damage.
I almost forgot.
Expectations low but I can’t have basics. Thought I’d escape abuse & be safe by now.
#PwME #MEAwarenessHour #MECFS
Clip: Dr @binitakane.bsky.social explains how ME is an energy-limiting illness.
The hallmark symptom, Post-Exertional Malaise (PEM), means even normal activities can trigger a worsening of symptoms. Some of her patients have to choose between a shower or preparing a meal that day.
🆘 ONLY 25 DAYS UNTIL WE CAN NO LONGER STAY IN THIS MOTEL & I LOSE MY HOUSING VOUCHER AS WELL
I’m disabled & we’ve been homeless 5+ months & the clock is ticking…
Please share & if you know of any single-story rentals in this area, lmk:
#PNW #Redmond #Kirkland #Sammamish #Eastside #SnohomishCounty
A black and white photo of flowers in a vase on a table. The room is dark, and one table lamp lights the flowers and nearby objects like candles, a speaker, and artworks that hang on the wall.
If there are flowers in our house, I try to use the opportunity to photograph them. The light in my room is a big problem, and I can’t stay upright for long without my symptoms worsening. So, any close-up or macro work is usually out of the question.
#MECFS #Photography #Flowers
Just over a year ago, I left my 25 year NHS career to dedicate my life to a group of patients who remain largely unseen and unheard by the NHS - people with severe #LongCOVID and Myalgic Encephalomyelitis (#ME). 🧵
youtu.be/pk00btt7CVs?...
More on OMf's bold BioQuest Study
👉 1000 samples
👉 Wide omics approach
👉 Cohorts of ME, MS, Burnout, Long COVID, depression to filter out bio signals of fatigue
👉 Hope to produce 5-20 biomarkers to identify subsets
👉 Phase 1 of 3
Good article 👇
Purple background with black and white silhouette of person sitting and candles. “newdisabledsouth •• • NEW DISABLED SOUTH MARCH 1ST IS DISABILITY DAY OF MOURNING Since 2012, Disability Day of Mourning has been observed to recognize disabled people who died by filicide.”
Purple background with black and white pictures of an empty wheelchair and a woman looking upset in another picture. “newdisabledsouth newdisabledsouth NEW DISABLED SOUTH 2/3 MARCH 1ST IS DISABILITY DAY OF MOURNING Filicide is when a relative or household member kills a relative with a disability. Every year, hundreds of disabled people die by filicide. In the last 5 years, over 548 people with disabilities have been murdered by their parents, relatives, or caregivers. These circumstances are not isolated. They are part of a cycle of harm where the disabled victim is vilified, and the murdering caregiver or relative is given sympathy and grace in the criminal legal system.
Purple background with black and white photo of people lighting candles: newdisabledsouth ••. NEW DISABLED SOUTH 3/3 MARCH 1ST IS DISABILITY DAY OF MOURNING Today is a day to honor and grieve the disabled people whose lives were taken by filicide. As we remember them, we also lean into community and care. The Autistic Self Advocacy Network offers a Disability Day of Mourning vigil locator and an Anti-Filicide Toolkit that can help you find gatherings near you and better understand how to challenge the narratives that devalue disabled lives.
![Post
newdisabledsouth [Content warning:
Discussion of violence against disabled people, including filicide]
March 1st is Disability Day of Mourning, a day to remember those in our community who were murdered by family members, caregivers, or loved ones, this is known as filicide.
Filicide is deeper than the one-off instances of murder; it unpacks the pattern of violence that starts when a parent or caregiver murders their relative with a disability and continues in how these murders are reported, discussed, justified, excused, and replicated.
Today, we hold the collective grief, anger, and pain of all those impacted by filicide. We will never forget those who have been harmed, and we will continue fighting and advocating for justice, accountability, and transformation.](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:hcna5ngafyx3bmh4ky27nj6h/bafkreih7llehhj4c4eh45np4xuf5iugidsxo3ax25eybzg3hohlr7gu3xy)
Post newdisabledsouth [Content warning: Discussion of violence against disabled people, including filicide] March 1st is Disability Day of Mourning, a day to remember those in our community who were murdered by family members, caregivers, or loved ones, this is known as filicide. Filicide is deeper than the one-off instances of murder; it unpacks the pattern of violence that starts when a parent or caregiver murders their relative with a disability and continues in how these murders are reported, discussed, justified, excused, and replicated. Today, we hold the collective grief, anger, and pain of all those impacted by filicide. We will never forget those who have been harmed, and we will continue fighting and advocating for justice, accountability, and transformation.
Today is Disability Day of Mourning 🕯️
Some great slides from
@newdisabledsouth.org about this day:
(featuring the @autisticadvocacy.org )
#disability #disabled #autistic #caregiver #ChronicIllness
🤞🏻
Damn… I did notice your account from IG was gone. That’s devastating.
You have supported so many of us, me included, on social media. I’m sure there are plenty of people who will support you if you start over.
I wish there would be a way to get your old one back.
Feeling very blue. After Twitter became X I lost all my audience there. I dedicated time to Instagram, built it back up to over 10k. Now I've been hacked, as a result ALL my following is gone, all my contacts, all my friends, no Threads, Facebook or Instagram. About 500k of views a week.
Awww that is very caring and kind 💙 we all deserve that.
Thanks! ✌🏻
A black and white photo of Niko’s mother about to open his bedroom’s blackout curtain. The room is still dark and a single ray of sunshine makes a stripe pattern that lights part of his mother.
Every morning, my mother comes to my room and opens my curtains. I can’t do it myself as I’m 99% bedbound due to severe myalgic encephalomyelitis (ME/CFS).
During the winter months, the rays of the morning sun reach my room from the other side of the house.
#MECFS #pwME #Photography
screenshot of a Zoom chat between Miles, betsy, Torie, Funmi, and Madeline. Their names are emphasized in starburst shapes. The text reads, “The Sick Times. Watch now! Expert tips on pitching and writing Long COVID op-eds.”
Help break the stigma around #LongCOVID: share your story by writing an op-ed! To help demystify the process of writing and pitching, we hosted a free webinar with expert guests Torie Bosch, Funmi Okunola, and Madeline Miller.
Watch now, or share with a writer friend! bit.ly/4s1qJxb
Next month, March is #LongCovidAwarenessMonth
It’s also my birthday.
Can I please get out of this hell? I can’t take much longer.
Anybody got a spare room in #Australia? I’m #Melbourne but need somewhere safe.
Info👇Please read.
chuffed.org/project/1619...
#MutualAid
#MutualAidAustralia
💕💸
The amount of pressure from the right side of ME/CFS is really building in Norway right now.
There’s a high-profile case regarding welfare for ME patients, New Guidelines in the work and a lot of people are rallying with what little energy they got.
I smell CHANGE in the atmosphere!!
Promotional graphic for LONGCOVIDADVOC.SHOP featuring a fluffy ginger cat sitting in green grass, reaching one paw up toward large, white, hand-drawn text that reads "FREEPOST" decorated with paw prints. Below the cat, a white box says "All Orders, All Weekend" above three small t-shirt icons on hangers. The website address is displayed at the bottom on a black banner.
💌 Last FREEPOST before Long Covid Awareness Day
You can get gifts, & advocacy boost tools like stickers, postcards, t-shirts 😎
🖇️ longcovidadvoc.shop
There's an update on Savannah's gfm. TW so much medical abuse.
Please keep sharing and donating!
By trying to find somewhere less unsafe, she has now lost her NHS provided carers. She's too unwell to do without, so needs to self fund them.
Thank you 🙏🏻
#SaveSavannah #SevereMErgency #ME/CFS
Update:
Feeling unsafe Savannah self-discharged & left QEH in a private ambulance. Even with the CEO of a national charity advocating in person, Guy’s refused to admit her. After waiting over two hours in the ambulance, she was forced to return to QEH.
www.gofundme.com/f/severemerg...
Ahhh that is so shitty 😩 I’m so sorry. It’s the main thing for many to raise funds.
I’ll send you a DM here!
#SaveSavannah #SevereMErgency
#pwME please repost and boost the below. Nobody is willing to intervene. The health minister must step in and prevent a tragedy
@ashleydaltonmp.bsky.social
Your words “these must become never events”
PLEASE INTERVENE TO SAVE LIFE
Savannah has not eaten for 9 weeks. There are no NHS services for severe ME - 7 months since publication of the Delivery Plan for ME/CFS
www.meresearch.org.uk/claims-of-nh...
Yes, I did sent you a DM on Instagram last year!
But in short we have a form on our website for applying to be featured.
Once we agree to feature you, you would need to fill two forms with all the needed information.
Can I DM you here so we can discuss this some more?
We hope you will enjoy our updated gallery!
—A Quiet Storm Team’ 7/7
Additionally, we are debuting an upcoming group exhibition, ‘Myalgic Encephalomyelitis Kills’, on International ME/CFS Awareness Day on May 12th. With open call submissions accepted on our website from March 12th to April 12th! 6/7
A text: ‘Our exhibitions’. And below it a square-shaped collage of 9 different exhibitions: collages, black and white photographs, digital drawings, and abstract works.
Our gallery currently features 8 artists and 9 different exhibitions, with new artist introductions, exhibitions, and blog posts in progress. 5/7
After all, our gallery is all about raising awareness of ME and representing the 25% of patients who suffer from the most severe form. Our updated colour theme is now in line with our core values, and we are excited to share it with you! 4/7
Our old white colour was a nice canvas for the artworks, but it wasn’t accessible for those severely affected by ME/CFS, due to its brightness. 3/7
In all honesty, we should have done this from the start. When we initially built the website, our team of volunteers had very little knowledge of website building. We learned it along the way, and in doing so, we oversaw accessibility for simplicity. 2/7
