phoebsbo.bsky.social - Profile | ThreadSky | a Reddit-style client for Bluesky

Today is my eleventh ME anniversary. I always try to make a cake for these anniversaries so I have something to look forward to on an otherwise depressing day. This year it’s a carrot cake with cream cheese icing (vegan and gluten-free). #PwME #MEAnniversary #ChronicIllness #Disability

submitted 1 day ago • 3 comments

Pretty Smorky. 🥰 #Smorky #CatsOfBluesky #CatsOnBluesky

submitted 2 days ago • 0 comments

It’s funny how the government aren’t willing to put any money behind the ME Delivery Plan considering how desperate they are to cut the welfare bill and get chronically ill people into work. They just can’t put two and two together. #PwME

submitted 4 days ago • 1 comment

Sometimes I think that non-disabled/healthy people believe that chronically ill people who are unable to work are basically having a nice long stay-at-home holiday, doing lots of lovely resting and maybe feeling a bit unwell from time to time. It’s not. 1/3 #PwME #ChronicIllness

submitted 6 days ago • 2 comments

The attitude that chronic illness is a moral failing is the one that hurts me the most. People seem to feel it more strongly since Covid. Those who know me know how healthy I was… until I wasn’t. Disability can & does strike everyone - it does NOT mean you failed or “deserved” it.

submitted 135 days ago • 2 comments

democrats won’t admit it, but my family’s economic outlook has gotten a LOT better since Trump took office. but what do i know? i don’t have a fancy economics degree, i’m just a regular guy who runs an airplane scrapyard

submitted 11 days ago • 462 comments

The birthday girl. Four years old today. 🥰 #Smorky #CatsOnBluesky #CatsOfBluesky

submitted 14 days ago • 1 comment

New blog post, on days lost to ME. puffsandpens.substack.com/p/35-lost-days

submitted 23 days ago • 0 comments

If my ME were to improve in any significant way, I’d probably share that along with my thoughts about why it might have happened, which may include “I have no idea why it happened”, and I’d make clear any privileged circumstances that could have contributed. 1/2 #PwME

submitted 23 days ago • 3 comments

I don’t know what Liz Kendall wants from me. I have severe ME & my GP told me that I shouldn’t think about working in any capacity unless I’m able to manage all the tasks associated with daily living for at least a year with no consequences to my health. I can’t even manage one day of that. #PwME

submitted 26 days ago • 0 comments

The drive home from my birthday outing yesterday afternoon. My mum took me to one of my favourite spots for a very chilly birthday cake and tea picnic. This was my first outing of the year. #PwME

submitted 27 days ago • 1 comment

From yesterday's @thetimes.com. I find this news from the Labour government far scarier than anything the Tories did. Losing my ESA won't cure me and allow me to work. It will make my life significantly harder, and my physical and mental health will suffer as a result.

submitted 28 days ago • 3 comments

➡️ January 20: FAA director fired ➡️ January 21: Air Traffic Controller hiring frozen ➡️ January 22: Aviation Safety Advisory Committee disbanded ➡️ January 28: Buyout/retirement demand sent to existing employees ➡️ January 29: First American mid-air collision in 16 years Making America Great Again!

submitted 30 days ago • 1412 comments

I think is pretty obvious for most people, but sadly not the Labour Party. www.bigissue.com/news/social-...

submitted 32 days ago • 2 comments

If you aren’t willing to do a small daily act to prevent death & disability, then what exactly do you stand for? I find it hard to believe you care about social justice if you can’t do that. Maybe you just care about looking like you care to people with more social capital than disabled folks?

submitted 35 days ago • 2 comments

Rejected NHS paediatric cardiology referral shared with me: ‘Unfortunately are not seeing patients for assessment or treatment of POTS. In rheumatology and cardiology fields it is widely understood that dizziness on standing is a normal physiological phenomenon, but in some individuals it may be….

submitted 36 days ago • 12 comments

I got this emergency alert sent to my phone this evening, it emitted a horrible screeching siren noise too. Schools are closing tomorrow, buses cancelled, bin collections cancelled, shops closing for the day… it’s getting a bit scary now. 😬 #StormEowyn

submitted 37 days ago • 1 comment

Gregg Wallace Justin Baldoni Neil Gaiman Elon Musk These men are all claiming (or have others claiming on their behalf) that they did what they did because they’re autistic. To be absolutely clear… Sexual assault, sexual harassment, workplace bullying and Nazi salutes are not autistic traits.

submitted 39 days ago • 0 comments

Disability benefits are not easy to get. For my last PIP review I sent in 81 pages of evidence, including essential proof of diagnosis. It took me 10 weeks to put it together and the whole review process took 1yr, from September 21 to August 22. My next review will be this year.

submitted 44 days ago • 0 comments

Archived version of the Neil Gaiman Vulture article to get around the paywall. This article needs a million trigger warnings, it’s a really difficult read. I read it this afternoon and I still feel nauseous. archive.ph/Y58U9

submitted 46 days ago • 0 comments

I cannot stop thinking about every disabled person who can’t evacuate these SoCal fires, whether it’s because they physically can’t leave or they don’t have the resources to. When we say our systems are designed to leave disabled folks behind to die, this is a prime example.

submitted 52 days ago • 12 comments

Reminder that what a lot of people with chronic illnesses do isn't about "getting better"... It's about mitigation, trying to prevent/slow progression, balancing of multiple issues, and trying to find the best quality of life possible for them in their circumstances.

submitted 51 days ago • 1 comment

If you're in an evacuation zone in SoCal, please check in with any disabled/aging neighbors you have to see if they need help evacuating.

submitted 52 days ago • 34 comments

This is one of the more exhausting aspects of chronic illness. From the "you've been off work again?!?" comments I got when I first became unwell in 2014, to the constant "have you tried..?" comments I still get today, both of which imply a moral failing on my part. #PwME

submitted 55 days ago • 0 comments

This is about writing, but it could literally be about any kind of work or activity: just try to do some. A little bit every day if you can. If you can’t, and this is important- Just chill out. There is no point in beating myself up or comparing myself to a me that no longer exists. Just let it go.

submitted 56 days ago • 5 comments

For a few weeks I’ve been averaging 5hrs sleep/night, I don’t know why. Last night I finally got a decent amount of sleep, 9hrs. Do I feel better for it? Nope. I feel like I haven’t slept at all. ME sucks. #PwME

submitted 56 days ago • 0 comments

My 2024 in (slightly depressing) numbers! puffsandpens.substack.com/p/34-2024-in... #PwME #MyalgicEncephalomyelitis #SevereME #Endometriosis #ChronicIllness #Disability

submitted 59 days ago • 0 comments

I’ve heard that ME can sometimes improve after menopause, and I’ve also heard the opposite. Does anyone have anything they’d like to share with me about their experience? My own (chemical) menopause is scheduled for January, with injections to switch off my remaining ovary. #PwME

submitted 62 days ago • 3 comments

This is my new favourite photo of Smorky. She looks so funny when she stands like a penguin. #Smorky #CatsOfBluesky #CatsOnBluesky

submitted 63 days ago • 0 comments

It’s funny how the people who complain about disability benefit fraud never reply after I share the government’s own statistics that clearly state the fraud rate is 0.4%, and statistically insignificant. www.gov.uk/government/s...

submitted 65 days ago • 0 comments

I recently received letters from the DWP and Social Security Scotland (SSS) to tell me that my PIP award will be transferred to the new Scottish version of PIP (ADP/Adult Disability Payment) in March. My award is due for renewal in 2025 and the letter from SSS said that… 1/2

submitted 72 days ago • 2 comments

It is NOT selfish to protect your baseline. People can’t comprehend what it’s like to exist in a severely chronically ill body. They can’t understand that what minimal function we have left is EVERYTHING to us. Someone who loves you shouldn’t push you to take unnecessary risks.

submitted 75 days ago • 14 comments

I should’ve followed the instructions when I put her together this morning. #Smorky #CatsOfBluesky #CatsOnBluesky #Caturday

submitted 77 days ago • 2 comments

“I didn’t know it at the time, but my last day at work was on Friday 12th December 2014, ten years ago today.” Short new blog post on my blog Puffs and Pens! #PwME #MyalgicEncephalomyelitis #ChronicIllness #Disability puffsandpens.substack.com/p/33-ten-yea...

submitted 79 days ago • 0 comments

I always imagined that cat cafes would have a lovely private room for the cats to hang out in when not in the mood to have an audience, filled with beds, cat trees and toys, and space for the cats to run and play. 1/3

submitted 80 days ago • 1 comment