Jane
@gingercrone.bsky.social
Queen of Wishful Thinking. North East coast, UK.
Pitch-dark heart 🖤
Catches Lost Souls
Pitch-dark heart 🖤
Catches Lost Souls
I will but im going away for a few days tomorrow so might not be online much to respond.
January 10, 2026 at 6:45 PM
I will but im going away for a few days tomorrow so might not be online much to respond.
Not ME but just lost access to my POTS clinical support, and the hospital admitted its clearing its list of difficult patients. Which is patients with complex conditions causing POTS such as Ehlers Danlos Syndrome. Which can cause ME CFS.
January 10, 2026 at 5:34 PM
Not ME but just lost access to my POTS clinical support, and the hospital admitted its clearing its list of difficult patients. Which is patients with complex conditions causing POTS such as Ehlers Danlos Syndrome. Which can cause ME CFS.
So my breaking point was when Evri told M&S they couldn’t deliver bc ‘the shop was shut’. My house has allegedly transmogrified.
M&S has just sent me a full refund and told me to keep the pants if they ever turn up.
M&S has just sent me a full refund and told me to keep the pants if they ever turn up.
SCREAMS INTO THE EVRI VOID
They've claimed 3 times they attempted delivery and put notes through my door. They haven't attempted once to deliver.
And M&S aren't enabling online customer service support for non delivery, nor answering their customer support line. I'm screaming into nothingness.
They've claimed 3 times they attempted delivery and put notes through my door. They haven't attempted once to deliver.
And M&S aren't enabling online customer service support for non delivery, nor answering their customer support line. I'm screaming into nothingness.
January 10, 2026 at 5:28 PM
So my breaking point was when Evri told M&S they couldn’t deliver bc ‘the shop was shut’. My house has allegedly transmogrified.
M&S has just sent me a full refund and told me to keep the pants if they ever turn up.
M&S has just sent me a full refund and told me to keep the pants if they ever turn up.
Thank you. I hope you and your daughter find a way to thrive as well as survive.
January 10, 2026 at 5:24 PM
Thank you. I hope you and your daughter find a way to thrive as well as survive.
It really wears you out. Constant advocacy with little effect.
January 10, 2026 at 1:26 PM
It really wears you out. Constant advocacy with little effect.
I'm sorry for your daughter. I have POTS hEDS MCAS and leaky heart valves. I wouldn't wish it on anyone.
January 10, 2026 at 1:00 PM
I'm sorry for your daughter. I have POTS hEDS MCAS and leaky heart valves. I wouldn't wish it on anyone.
It's weird. I get in the pool and my limbs suddenly remember how to coordinate!
January 10, 2026 at 9:48 AM
It's weird. I get in the pool and my limbs suddenly remember how to coordinate!
To be fair, I'm looking forward to fit camp. They seem great and have POTS experience. They've been so curious in a respectful manner, and I really hope something positive comes from it. If nothing else, it gives me free access to council pools for 6 months.
January 10, 2026 at 9:46 AM
To be fair, I'm looking forward to fit camp. They seem great and have POTS experience. They've been so curious in a respectful manner, and I really hope something positive comes from it. If nothing else, it gives me free access to council pools for 6 months.
They're asking my gp to take over,after my gp has already said that I'm beyond their competency to treat. It wasn't unexpected. But it still sucks. And this is the same week neurology refused to see me. The gatekeeping is huge.
January 10, 2026 at 8:58 AM
They're asking my gp to take over,after my gp has already said that I'm beyond their competency to treat. It wasn't unexpected. But it still sucks. And this is the same week neurology refused to see me. The gatekeeping is huge.
January 9, 2026 at 8:09 PM
Is that who that shower of suds murdering Dr Hook was?
January 9, 2026 at 7:53 PM
Is that who that shower of suds murdering Dr Hook was?
They are recommending my gp refer me to cardiology rather than syncope, but admitted they’ll probably reject me as untreatable until I have a critical incident. Which isn’t reassuring.
January 9, 2026 at 7:51 PM
They are recommending my gp refer me to cardiology rather than syncope, but admitted they’ll probably reject me as untreatable until I have a critical incident. Which isn’t reassuring.
Pain management clinic rejected my application. Said I was to complex. It’s a theme.
January 9, 2026 at 7:47 PM
Pain management clinic rejected my application. Said I was to complex. It’s a theme.
Gosh that was a long and disappointing day. Yet another NHS department that has kicked me off their list bc ‘we can’t actually treat you because you are too complex’.
I now have no hospital support other than emergency care.
I now have no hospital support other than emergency care.
January 9, 2026 at 7:18 PM
Gosh that was a long and disappointing day. Yet another NHS department that has kicked me off their list bc ‘we can’t actually treat you because you are too complex’.
I now have no hospital support other than emergency care.
I now have no hospital support other than emergency care.
Hospital middle of nowhere. Car park refused to give us a ticket but we should be disabled free anyway. Appointment at least an hour late. Bored stupid. Heart rate 136bpm. They took it 3 times just to be sure.
a dog is laying on top of an office chair with the words `` so bored '' written below it .
Alt: a dog is laying on top of an office chair with the words `` so bored '' written below it .
media.tenor.com
January 9, 2026 at 3:52 PM
Hospital middle of nowhere. Car park refused to give us a ticket but we should be disabled free anyway. Appointment at least an hour late. Bored stupid. Heart rate 136bpm. They took it 3 times just to be sure.
And watching the hexadecimal fail at the last moment.
January 9, 2026 at 3:46 PM
And watching the hexadecimal fail at the last moment.
Morning Skyfolk. Today is hospital in the middle of nowhere in the snow day.
Gotta say, I'm already impressed with the people running fit camp. They're going out of their way to ensure they don't break me, and have a nutritionist working on how to help with my restrictive eating. Good people.
Gotta say, I'm already impressed with the people running fit camp. They're going out of their way to ensure they don't break me, and have a nutritionist working on how to help with my restrictive eating. Good people.
January 9, 2026 at 8:30 AM
Morning Skyfolk. Today is hospital in the middle of nowhere in the snow day.
Gotta say, I'm already impressed with the people running fit camp. They're going out of their way to ensure they don't break me, and have a nutritionist working on how to help with my restrictive eating. Good people.
Gotta say, I'm already impressed with the people running fit camp. They're going out of their way to ensure they don't break me, and have a nutritionist working on how to help with my restrictive eating. Good people.
Attractive men certainly are 😉
January 8, 2026 at 3:15 PM
Attractive men certainly are 😉
Excess cavorting on the dance floor. That was a very attractive man!
January 8, 2026 at 3:09 PM
Excess cavorting on the dance floor. That was a very attractive man!
Our first ever Whitby Goth Weekend, around 2003. Amazing crowd. And my huge grin.
January 8, 2026 at 2:37 PM
Our first ever Whitby Goth Weekend, around 2003. Amazing crowd. And my huge grin.
Ah yes, the work Christmas party when the Christmas tree fell on my head.
Also, my masters graduation with my favourite person.
Also, my masters graduation with my favourite person.
January 8, 2026 at 2:23 PM
Ah yes, the work Christmas party when the Christmas tree fell on my head.
Also, my masters graduation with my favourite person.
Also, my masters graduation with my favourite person.
With a dusting of snow. Big coat weather, which as a Geordie, goes against the grain.
January 8, 2026 at 8:42 AM
With a dusting of snow. Big coat weather, which as a Geordie, goes against the grain.
Morning Skyfolk. Setting aside geopolitical anxiety today & having a pre Whitby packing day, plus time in my study going through old photos of my bro who is 60 next month. He gave me a super record for Christmas that I need to spin. Be prepared for vinyl & old photos spam!
January 8, 2026 at 8:17 AM
Morning Skyfolk. Setting aside geopolitical anxiety today & having a pre Whitby packing day, plus time in my study going through old photos of my bro who is 60 next month. He gave me a super record for Christmas that I need to spin. Be prepared for vinyl & old photos spam!