@marygr65
Retired RN & Qualified Social Worker. #LongCovid since March 2020 Advocate FBLC Adult son, 3 grandchildren and 4 cats A bit preoccupied after serious house fire on 15/10/24, living in temporary accommodation while they rebuild https://gofund.me/99cc079b
🚨 Mythbusting #LongCovid with Dr Amir Khan🚨
Long Covid is real. It’s serious. And it’s affecting millions.
On #LongCovidAwarenessDay, #DrAmirKhan joins us to bust harmful myths.
Watch, learn, and share—because the more we talk about Long Covid, the harder it is to ignore.
A new study links long COVID to a threefold increase in cognitive difficulties, highlighting the need for more research on the disease’s impacts on brain health.
www.beingpatient.com/long-covid-c...
Elon Musk can now access millions of Americans’ Social Security and payment info.
Who does this help? Not the families struggling to put food on the table.
Welcome to the Dark Ages.
A vital piece from a civil servant on the horrific and incredibly dangerous Trump/Musk smash-and-grab of government happening before our eyes:
slate.com/news-and-pol...
This is a reminder for anyone who needs it today: wanting to protect yourself from a virus that has the ability to disable you is not selfish
The Bylines Cymru Austerity Project: origins, impacts, outlooks – and remembrance
Austerity has been reported on piecemeal but our community will focus on it through February and beyond. And we need your help.
Art by kind permission of @martinrowson.bsky.social
bylines.cymru/politics-and...
A thread for eleven #MECFS, #LongCovid, and related research papers from w/c 20th January 2025.
Links are to our forum discussion threads, where abstracts, links to paper, analysis and discussion can be found. Inclusion does not equal recommendation.
1/12
I feel very much adrift on here. My posts rarely get answered. l know I dont always have the capacity to reply but trying to make the effort to help create a community so we can all feel ready to leave the other place for good
Here feels heavy on people getting follows & not following back
#FBLC
#CancerCare in U.K. any examples please where healthcare workers protect patients undergoing chemo from harm eg mitigate against #CovidIsAirborne
#MasksWork #FFP2/3
I feel very much adrift on here. My posts rarely get answered. l know I dont always have the capacity to reply but trying to make the effort to help create a community so we can all feel ready to leave the other place for good
Here feels heavy on people getting follows & not following back
#FBLC
Not just some people, but all people—on Earth—must watch this video and share it as widely as possible.
Every word of it is true, and it confirms that Elon Musk is a white supremacist leader stoking violence around the world.
His two televised Nazi salutes were exactly what you thought they were.
#FBLC Follow Back Long Covid where are you all x @jamesglen.bsky.social
@longcovidsupport.bsky.social
Burnout, shame & nurses crushed. A shocking & heartbreaking report from @sonia-sodha.bsky.social
www.theguardian.com/commentisfre...
White corpse feet after Covid in March 2020
Feet with colour after nicotine patches and second dose of covid in Feb 2024
One white foot, one red foot with engorged capillaries (right leg =blocked artery)
Picture not very clear One white foot (left one) One red foot (right one) Excruciating neuropathic pain in right foot. Awaiting vascular consultant to decide what hes doing after Urgent CT Scan weeks ago. Currently can only walk around the house.
Thought Id show running saga of my feet(pun not intended) First pic corpse feet taken in first months of #LongCovid in 2020. Stayed like that until 2nd pic when I got #Covid and started #nicotinetest both in Feb 2024 and stopped most supplements. 3/4 pic waiting for vascular surgery Now I cant walk
Trying to get some options/ ideas before I get fobbed off. I know surgery is risky but Im 69 with a life on hold, a family I support with childcare and am not ready to become a prisoner within 4 walls. I dont know how to search for people here🤷♀️
@binitakane.bsky.social
@drclairetaylor.bsky.social
Advice anyone what would conservative treatment look like
What would surgery look like
Already experienced insertion of stent, hope this has improved in 15yrs
@longcovidphysio.bsky.social
@sunsopeningband.bsky.social
@nas-vascular.bsky.social
#vascularsurgery
For background
gofund.me/e06a24b4
This is a record of my steps since I started measuring in 2021. Covid in March 2020 and Feb 2024 when my walking became increasingly difficult. Graph shows upwards mobility until beginning of 2024 and a straightforward decline since then. I am mobile in the house because its in increments but can no long go out and pursue my favourite hobby which ironically is walking. All about supply and demand not deconditioning.
Had a severe housefire in October which meant I had to pack up what had survived, find somewhere to live, set up a new house all with minimal help. The only thing that slowed me down was not having oxygen on demand to my right leg not deconditioning, although that's starting now bc of my leg not #LC
Copy of letter from Consultant to Gp surgery saying both my iliac arteries are blocking, the right one in a higher spot than the stent thats already there. Its apparently working ok despite not getting enough blood flow from higher up. The left blockage is lower down
Mdt meeting without me and based on appointment in September took place in November after my Ct scan. They assumed because I have #LongCovid I would be at risk having the surgery I need to increase blood flow to my right leg and foot. Currently I cant feel my foot, cant walk outdoors because my calf muscles are not getting oxygen fast enough. I can walk indoors and do between 3000 and 10000 steps a day. The assumption being I am too deconditioned and ?my lungs wouldn't cope with with surgery. This from someone who has never examined me. Letter posted end of Dec suggests clinical review with me, still waiting and for stent to left leg which I will be grateful for in the future and conservative treatment to the worst leg, no idea what, probably physio but hoping for blood thinners. I already take aspirin, nattokinase and Lumbrokinase.
Finally a reply from Vascular Consultant. They think trying conservative treatment will help because surgery is too risky for someone as deconditioned as me! Good grief I cant feel my foot, so cant leave the house, bet theyll suggest exercise 👍
Lack of medic understanding sucks
So bl**dy angry 🤯
Merci! @apresj20.bsky.social and @millionsmissingfr.bsky.social were already included in my starter-pack for the patient community. Added the other three (split up between the researchers pack and the patients pack).
go.bsky.app/LciucLP
Two identical cat towers mirror image, set in the bay window where the Christmas tree had been. Five beds, eight platforms and eight dangling mice to play with. Cat heaven
Two of the cats using the tower, just chilling and taking in the view. One in the round bed and the other on a platform eying up a dangling mouse. Ive no idea where they would fit in my house when we go back but they will probably have destroyed it by then.
Bought a cat tower to replace the Christmas tree when it came down, however the base board had a broken corner. Didn't really affect the structure, and Id got it for £28 in the sales. They sent me a new one, told me to keep the broken one so built a jungle, happy Cats, happy Mama
Pepsi and Cola curled up one side of my leg and Max and Coca on the other side pinning me down
4 very happy and content cats stopping what little blood I have getting to my feet 😹😻
Ive stopped tagging mine now because everything I do causes huge peaks in heart rate. The worst being bending down to change cat litter, that has been the highest heart rate since 2020. Not as bad as it was though, now 120bpm instead of 160. I cant walk outdoors to check that atm 😢
Pepsi and Cola stretched out on my bed
All 4 cats spread out on my bed
Max giving me a hug 🤗
All 4 cats sleeping on pillows by the side of my bed. Three cuddled together and Coca is the one by herself but they all take turns in having alone time
Since I moved Ive felt sorry for the cats and they scratch at the doors and carpets 🤦♀️ so Ive been letting them into my bedroom, dont normally. After first spreading themselves out on my kingsize bed, stopping me from tossing and turning theyve found a spot beside my bed. They still come up to visit
Snow covered road and cars view from my bedroom window
3 of my 4 cats sitting on downstairs window ledge looking at snow covered road and cars. Sky is as white as the snow. More to come?
Morning from snow covered Wales. Its stopped now but the sky is full of it 😱. Keep warm everyone. I woke up and couldnt feel my right foot, nearly fell over when I stood up. My 11 yo has just been dropped off, Dad at work and is already outside building a snowman! Oh to be young.
Elon Musk has posted ***300 TIMES*** about UK "grooming gangs" in the last ten days.
Including: Calling for UK government officials to be hanged and jailed; demanding the removal of Keir Starmer as UK prime minister; suggesting Tommy Robinson be released from prison.
www.wired.com/story/elon-m...
Happy New Year everyone
Right foot much redder than left, you can see the small blood vessels/capillaries struggling to circulate the blood.
Still waiting, the right foot is struggling with circulation feels like Ive a tight sock/tubigrip on. Neuropathy pain not so bad atm but lack of sensation around my toes and sole unless theres pressure on it, then I can feel the pain. Shoved pillows in my bed to keep the weight of the bedding off it
