no1sarah.bsky.social
She/her.
🏳️🌈🏳️⚧️ ally
@sarahslowsdown on the bird app
In healthier times: Health & social care; homelessness & housing.
Music, music, music. 🎶
Mostly here to connect with
#LongCovid
#MECFS
#ChronicIllness
#Dysautonomia
#hEDS
#MCAS
201 posts
651 followers
1,526 following
Regular Contributor
Active Commenter
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I have noticed other people behave differently to when I was walking, & seem to expect wheelchair users to just be able to instantly get out of their way. So 'feeling in the way' might be due to other people's behaviour, not you!
Remember it is OK for you to be there, taking up space.
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I found it just takes time. I also don't go out very often. Eventually, it got easier as I got more experienced - it's just that the experience took a long time to acquire.
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We have been asked to support this petition which aligns with our advocacy.
Creating change is hard, it takes a whole village.
Please consider signing to support this petition TODAY.
#CleanAir
petition.parliament.uk/petitions/70...
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Hi Zack, I'm hoping to hear more about your position on NATO (& alternatives?) after reading this article earlier:
bylinetimes.com/2025/05/08/g...
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Thanks. I really hope you are able to make some progress with the vestibular rehab 💙
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We really are in a situation where it seems to be the role of the patient to join up all the healthcare if we can, & it is too much! My supportive GP just told me they are leaving the practice 😕
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So sorry. Solidarity 💙
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every share or donation makes a huge difference - one may not be in a position to donate but a RT could get it in front of someone who is ❤️A is hoping so much that her 3 years of hard work will pay off and she will get to graduate at last www.crowdfunder.co.uk/p/help-a-gra...
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A truly astounding result in Kent. Reform UK have literally wiped out and replaced the Conservatives in the county council.
Reform UK split the right-wing vote at the 2024 general election and enabled Lab/Lib Dem wins. Less than a year later, they're usurping the Tories entirely.
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So sorry for everything you're going through.
I haven't been able to find anywhere in the UK, I believe Germany is the nearest option - which is no use for most of us, I know.
If you haven't already come across it, this paper has useful suggestions:
pmc.ncbi.nlm.nih.gov/articles/PMC...
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As soon as mine feel intolerable, I take them off if I'm able to. I definitely couldn't have coped with a full day of them in the beginning.
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Sometimes the effort of putting on/removing can be too much, & sometimes the stimulation from them worsens pain (but often improves it).
The instructions that came with my prescribed, custom compression said you should build up gradually to wearing for long periods though.
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Rob Wüst (NL), @daltmann.bsky.social, @dbkell.bsky.social, @resiapretorius.bsky.social, @claguenjc36.bsky.social,
Will try & think of some more!
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To end our social isolation we need to get well again.
It's that simple.
But without medical treatments that seems unlikely.
So we need the government to prioritise and properly invest in research that will develop the #LongCovid treatments we need.
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Yes please, I'd love one
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It's so hard, isn't it. Music definitely feels like one of the biggest losses to me. 🐦⬛
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Yes, me too.
Blackbird was a good choice 🙂
Hope you do manage to listen to Dvorak!
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This, plus wondering if there will ever be a tune again, & if so, what it might be
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If men want to rape us they do not need to “pretend” to be women to get into our toilets or our changing rooms. They can just…rape us, in those spaces or other public spaces or in our workplaces or our homes, and they can be statistically pretty certain that they will never face punishment for this.
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Making (unevidenced) lifestyle changes for a complex disease is a sign of desperation, not empowerment. It is a sign of a complete failure of medical research and progress. It is a sign the burden is on patients to "try harder"
This is a cop out phrase to hide systemic failures
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Twilight is another additional screen filter you could try.
Migraine glasses also help me with screens, but obviously it's an expense 😕
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These have never been right for me since LC: eosinophils, lymphocytes, all iron markers (despite iron infusions).
Fasting blood glucose was elevated for years (no obvious reason), & is now coming down, cholesterol is creeping up (again, no obvious reason).
Don't know how typical any of this is?