Phoebe

So proud that I know you both!

It was pretty fast. I submitted my answers/evidence early August. I was preparing to wait until next year so this was very surprising. The whole process took just over five months.

I received my ADP (Scottish PIP) review determination letter today and I’ve kept my enhanced daily living and mobility awards. Phew! They made their decision without needing to see/speak to me, and I won’t be reviewed again until 2030. Very relieved!

#Disability #ChronicIllness #PwME

…I have to make. Every single day I have to balance my energy, symptoms, and basic needs. This means making decisions that may not always align with me ethically. While I wish I could make different choices, I have to go with what is most accessible, and Amazon is often what works best for me. 3/3

…all my purchases. Amazon allows me to buy what I need while exerting as little energy as possible and maintaining what little independence I still have. I understand people’s strong opinions about Amazon, but unless you live with the same limitations, you cannot understand the trade-offs… 2/3

I’d prefer not to use Amazon, but I have a severe energy impairing disability and I’m predominantly housebound. I can’t shop locally. I rarely have the energy to search online for alternatives. I don’t want to rely on my mum/carer for… 1/3

#Amazon #Accessibility #Disability #ChronicIllness #PwME

Many of the struggles faced by disabled people are also faced by abled folk.

But they don't have the added issue of being disabled on top... Which makes every issue harder to deal with, and sometimes impossible.

3/3

2/3

Happy Gotcha Day to my sweet little Smorklepuss. Three years ago today! 1/3

#CatsOfBluesky #CatsOnBluesky #Smorky #GotchaDay

I like mice! If it had been a spider I would’ve been screaming!

This happened last night as I attempted to liberate one of Smorky’s mice! I eventually managed to persuade mousey to scamper off into the night, and while we do now share a bond, I hope it finds a new home far away from Smorky the Huntress.

Scooby I am as white as a hotel towel, and the closest thing to Mexican I am was a single all inclusive resort stay in Cancun. I put a Mexican flag sticker on my old Tacoma abd was promptly pulled over by ICE in San Antonio. I'm happy to waste their time 1d RookaTX This is the way Scooby • RookaTX Their big question was like, "why the sticker" I told them it was on the truck when I bought it-and they suggested I remove it. Obnoxious creatures. 1d

White woman puts Mexican flag on her truck to waste ICE’s time.

40. Ten Years Ago Today. Ten years ago today I moved out of my flat in Leith, Edinburgh.

A short new blog post.

Ten years ago today I had to leave my beautiful flat in Edinburgh because of ME. I thought I’d be back, but I never stepped foot in it again.

puffsandpens.substack.com/p/40-ten-yea...

#PwME #MyalgicEncephalomyelitis #ChronicIllness #Disability

Nope, there’s no option to save progress, so it has to be done in one sitting. I thought that by keeping my laptop on with the tab open, and automatic updates disabled, I could go back to it as/when I was able, but someone suggested the error could be because it timed out.

Photo of laptop screen that says "we're sorry... There has been an error with your form. You can start another form to tell us about any changes in your circumstances.

I spent ten weeks writing my answers for my ADP (Scottish PIP) review.

Then I waited to feel well enough to fill in the online form.

I spent today doing it bit by bit, because I can’t use my laptop for more than 5 mins at a time.

I pressed submit, and then this happened…

I am FURIOUS. 🤬

Screenshot of my ADP 'to do' list in my Notes app: Changes. Symptoms. Conditions or Diagnosis. Medication. Treatment. 1 Preparing food. 2 Taking nutrition. 3 Managing therapy or monitoring a health condition. 4 Washing and Bathing. 5 Managing toilet needs or incontinence. 6 Dressing and undressing. 7 Communicating verbally. 8 Reading and understanding signs, symbols and words. 9 Engaging with other people face to face. 10 Making budgeting decisions. 11 Planning and following journeys. 12 Moving around. Additional information.

I’m almost 7 weeks into my ADP review (Scottish PIP). I’ve completed 13 out of 18 questions, and I’ve written 11,000 words so far. So basically I’m writing a dissertation on everything that’s wrong with Phoebe. 🥴

#PwME #Autistic #ChronicIllness #Disability #DisabilityBenefits

White cat with black splodges lying flat on a wooden garden bench.

I have a melty Smorky.

#Smorky #CatsOnBluesky #CatsOfBluesky #Heatwave #MeltyCat

Bear in mind that if you held up a sign saying "I support genocide", you would not be arrested under the Terrorism Act.

Should she hide her disabled cat from the world? Like we used to do with disabled humans when they were institutionalised rather than allowed to live in the community?

Smorky wishes everyone a happy and safe Pride Month. 🌈

#PrideMonth #HappyPrideMonth #PrideMonth2025 #Smorky #CatsOnBluesky #CatsOfBluesky

A small drawing I recently completed. According to some, it looks like a carnivorous plant. I see plants, insects, octopuses, music, and one tiny giraffe!

#Drawing #DoodleArt #DoodleDrawing #DisabledArtist #AutisticArtist #PwME #Autistic

…and subsequent symptoms) over the course of a few years in the lead up to menopause. Well, as of yesterday, I’ve basically had a sudden jump right into menopause, with all the perimenopause symptoms happening very rapidly all at once, on top of severe ME. I feel like death. 2/2

I had my first Decapeptyl injection 16 days ago to treat my endometriosis. It works by shutting down my remaining ovary and inducing chemical menopause. Typically, someone will experience perimenopause (with fluctuating hormone levels… 1/2

#PwME #Endometriosis #ChronicIllness

White cat with black splodges sitting in a loaf position on the grass in the shade of the garden fence.

A lovely sunny day for Smorking in the garden.

#CatsOfBluesky #CatsOnBluesky #Smorky

39. What the New PIP Eligibility Criteria Will Actually Mean. PIP (Personal Independence Payment) is a UK benefit designed to cover the additional costs of being disabled and can be claimed by people in or out of work.

A new blog post, on the reality of Labour’s proposed changes to the PIP Daily Living eligibility criteria. It makes no sense.

#DisabilityBenefits #Disability #ChronicIllness #PwME

puffsandpens.substack.com/p/39-what-th...

38. How I Feel on a Normal Day With ME. With Labour’s proposed benefit cuts being a topic of conversation all over social media, I’ve encountered many people who appear to believe that disabled/chronically ill people who are unable to work ...

puffsandpens.substack.com/p/38-how-i-f...

Short new blog post!

How I Feel on a Normal Day With ME.

“I promise you, living with this every day, it’s no holiday, it’s literally one sick day after another.”

Link below… 👇

#PwME #MyalgicEncephalomyelitis #ChronicIllness #Disability

37. The Government Have Not Thought This Through. The government believe they will be able to incentivise (force) disabled and chronically ill people into work with their proposed cuts.

Short new blog post!

The government believe they will be able to incentivise (force) disabled and chronically ill people into work with their proposed cuts. The government however are not operating in the land of reality.

#DisabilityBenefits #PwME

puffsandpens.substack.com/p/37-the-gov...

Almost no ME/CFS patients return to work 'The help we have provided to patients through the welfare and healthcare systems has had little rehabilitative effect,' says a researcher.

“Almost no ME/CFS patients return to work.”

As with most illnesses that are left untreated (there is no treatment for ME), people won’t get better.

#PwME #MyalgicEncephalomyelitis #ChronicIllness #Disability

www.sciencenorway.no/chronic-fati...