iiinova — where your digital self keeps evolving

Reposted by Tired 🌈🏴‍☠️✨🔇♿🇵🇸

Disability News Service @johnpring.bsky.social · 02/10/2026

The BBC has failed to explain why the host of its flagship current affairs programme Question Time has repeatedly pushed the idea that social security spending must be cut, while ignoring official figures that debunk claims it is “spiralling”. #BBCQT www.disabilitynewsservice.com/bbc-fails-to...

disabilitynewsservice.com

BBC fails to explain why Question Time host repeatedly fails to debunk the lie of ‘spiralling welfare’

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 02/10/2026

tessa used to be my MP back before I developed ME. she always seemed really involved and engaged. good to see that's still the case. I don't live in her constituency anymore but it's nice even to see someone acknowledging ME like this

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Reposted by Tired 🌈🏴‍☠️✨🔇♿🇵🇸

Tessa Munt MP 🔶 @tessamunt.bsky.social · 02/10/2026

Thanks @thereforme.bsky.social! There must be serious review of the government’s inadequate response to #ME, with its cost to us all. Still considering best options to call for including @georgemonbiot.bsky.social proposed public inquiry, Select Committee Inquiry, a Czar or even referral to HSSIB.

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 02/10/2026

if anyone could help me out with buying a new box of facemasks so I can at least try to avoid the worst of it please, please let me know. I'm so desperate. I can't leave due to my health and nowhere else to go.

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 02/10/2026

woke up coughing with bad chest pain, allergies from mould. stepdad then sprayed deodorant absolutely everywhere again, triggered my asthma making it so could barely breathe. TERRIFYIG. I pulled myself downstairs begged him to stop, he continually yelled at me then followed me around house yelling

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 29/09/2026

had bath PEM back BAD crashing all PEM symptom back I want to fucking die In fed up

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 29/09/2026

strange night again (sweaty, restless, woke up groggy after not much sleep) but feel almost human today. sore throat but no longer at death's fucking door like I felt for 10 days straight.

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 28/09/2026

suddenly headache cleared a little bit and I felt less dizzy so I was able to get some fruit, toast and crisps from downstairs as well as a coffee. hard time getting back upstairs but going to rest again now. really really relieved to have some respite for first time in about 10 days

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 28/09/2026

6th b12 jab done will have another every 3 months I think. she said will be back in 3 months. really hurt this time. had all in same spot because didn't want both arms hurting .

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 27/09/2026

just update to say had proper food last night didn't sleep well still bad PEM

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 24/09/2026

I have now had it confirmed that my GP did not make a referral for an iron infusion despite telling me that he would. He coerced me into giving consent for my information to be shared, saying an iron infusion couldn't go ahead unless I agreed. He lied to me.

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 23/09/2026

quick note for me infuture to check back. 2 pack indomie with tinnedpeas and corn and tin of sardines in oil. should be big meal . stop typing

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 23/09/2026

have to try and make something. have to get noodle or something. can't believe have to push through this level PEM just keep permanently getting worse as no one to help me #MECFS wish me luck I can't believe doing it. can't even move. back tomorrow gopefulyl

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 23/09/2026

had 5th B12 jab still in terrible crash. can't tolerate any light or even typing so have to stop now. just lying down with eye mask on for hours and hours all the time in the dark with no sound it's SO boring but PEM is constant. constant flu feeling and unreal exhaustion

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 21/09/2026

the only way to survive this is by having a lot of money or extremely understanding and supportive friends and family. I have neither.

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 21/09/2026

when I saw the occupational therapists I told them how bad things are. they said their job is to get me "up and about". that thinking is literally what MADE me this bad in the first place.

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 20/09/2026

sucks so bad to know that this time last year i was actually able to walk to the supermarket and buy a few things, then walk to a nearby public garden to eat snacks and walk all the way home again and only have PEM that last 2 days, returning to baseline afterwards.

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 18/09/2026

the day ended up getting better towards the end. feel really unwell though. hopefully a lot of rest will help

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 18/09/2026

worst PEM I've had in so long. can't type any more. just want to note severe pain in both legs hips to toes like when I had covid. migraine coming. thanks for bday wishes

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 18/09/2026

birthday. they won't even take my rubbish downstairs.

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 17/09/2026

oh wonderful! not only did the thing I was hopeful about fall through, the £30 food delivery I've been waiting days for was delivered the wrong house and Evri won't do anything about it but the company I ordered from are saying it's between me and Evie. Great. fantastic!

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 17/09/2026

I just had the funniest/weirdest delivery experience. I was meant to get a delivery a couple days ago that I paid a *lot* for to be delivered next day. but never arrived. 3 days later (today) I put a note on the door saying it can take me a while to get downstairs, since I needed to sign for it

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 17/09/2026

never mind. anyway severe PEM from yesterday's appointment can't move or do anything. have to rest a few days hope its not permanent

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 16/09/2026

at least one of the things I was feeling hopeful about has been confirmed! so that's good. it's not a huge thing, just a little positive thing

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 16/09/2026

Feeling dangerously hopeful right now. This is usually followed by a crashing blow so trying to temper it .

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 15/09/2026

previous GP made me give consent for some program where I basically lose my privacy as everything is shared between services. he told me this was the only way to get help with transport so I reluctantly gave it, saying this was the sole reason I was doing it

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 15/09/2026

shit. they've stopped tesco whoosh (via uber) where i live. this is the only way i've been able to get groceries.

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 15/09/2026

really shaky now. need to clear space to record more in case he threatens me or punches wall next to me like he used to do

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 15/09/2026

super stressful as they started doing roadworks next to my window and it's painfully loud in there even with ear defenders on. came down to living room and stepdad kept turning volume way up on TV. I kept turning down. he then started yelling at me, kept telling as I said he was hurting me

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 15/09/2026

managed to walk along the flat bit of my road and felt fine (apart from some guy laughing and yelling at me while walking his dog people are SO weird now) but became suuuuper dizzy, headachy and tired on the way back again. haven't heard back from GP (surprise surprise)

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 14/09/2026

i think i'm gonna have to be pushed to be seen by cardiology department again. not looking forward to trying to make my case because i already know they'll say it's all anxiiiietyyyyyyy

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 14/09/2026

These fucking palpitations. It's just constant again. Woke up with them and it's been like this all day. Huge painful squeeze, then either a string of fluttery beats or nothing at all followed by another painful THUD. Leaves me breathless. Same pain in my neck and arm too.

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 14/09/2026

of for FUCK'S SAKE. i was told by the nurse i saw last week that it's ok to delay friday's jab & the next one would happen on monday. got ready today & heard nothing. emailed the district nurses and have been told that since my doses weren't completed within the 2 week timeframe they've been stopped

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 12/09/2026

couldn't get groceries as no drivers for the whole day. thought okay I'll just have to spend my food money on a pizza instead since it's the only way I can eat today. can't do that either (tried for 3 hours). yay rural life.

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 12/09/2026

ohhhh wow I have like no data left already. I'm so screwed.

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 12/09/2026

well that's okay i'll just use my phone as a hotspot hashtag love my life ✌🏻

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 12/09/2026

Internet's been down since about 10pm last night. Apparently the problem is with the cables at my house and they can't come out to fix it until THURSDAY ???? so I'm fucked because I need it for emails and I'm supposed to watch a bunch of videos and fill in a form before the 16th. Which I can't now.

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 11/09/2026

going to try tiny walk again. really dizzy and tired but I hate being in that one room all the time. hopefully it goes okay

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 11/09/2026

so that all continued until I fell asleep sometime after 3.30 am. i've just woken now at 8am and the pain has mostly subsided but still have dizziness, nausea and feel like complete shit. really shaky. Will try contacting doctor.

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 10/09/2026

this chest pain is really not nice going to try watching new taskmaster maybe getting loads of palpitations and twitching muscles. i wonder if it's potassium-related due to the B12 shots. or maybe just heart weirdness from being mostly bed bound for years & very poor diet :(

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 10/09/2026

huh. a few hours ago i had extremely intense ain in my left arm which i assumed was from the injections but i just checked and it's not painful like that now at all. my arm is weirdly tingly ad numb the whole way but the severe pain (that was way worse upon prodding) is gone. what is even going on

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 10/09/2026

was sleepig then suddenly had burst of high BPM and restless feeling with chest, arm and neck pains. been going on for about an hour now. super dizzy, slightly nauseated, left arm tingly, pain in chest and neck, palpitations. BPM actually loks good at 75ish, occasionally jumping to 100

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 10/09/2026

okay yeah so it's a day after a B12 shot and I once again have headache, nausea, very uncomfortable palpitations, breathlessness on extertion, fast heartbeat, random chest pains and really bad vertigo. so there's a clear pattern there whether the GP wants to acknowledge it or not.

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 09/09/2026

4th b12 shot done. full head feeling, loud tinnitus, tight chest, tight throat, nausea, dizzy, sore throat, sore palms, shaky, puffy eyelids. all within 5 minutes. tbh probably even less. it JUST happened. the throat is what bothers me most.

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 09/09/2026

Slept 7 hours last night! Going to attempt to walk along the road next to my house, very slowly, for just a couple minutes. I'm wearing real clothes today and it's not raining or sunny so going to give it a go. Hope I can manage a little bit. I have a cup of tea to take as well.

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