iiinova — where your digital self keeps evolving

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

i'm really, really desperate. i hate doing this but i would be so grateful if people could share or donate. i desperately need to buy food and toiletries. i wish i could do something in return but can't right now ko-fi.com/hanslabyrinth

ko-fi.com

Buy Han a Coffee

Become a supporter of Han today!

013

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

haven't used stairs in a couple days. i'm trying not to use them at all until i feel better because they're fucking me up so bad. i have protein bars, tinned tuna, crackers and 1 500ml bottle of water. i ordered more water, should come today but it's unlikely they'll bring it upstairs so not sur

000

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

really fucking struggling. i don't know what to do at all. the only people im in contact with now is occupational therapy and they're completel ignoring everything i say and just saying they're glad i feel better now (which i DON'T) and they'll be helping me "mobilise" which i can't. im worried

110

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

not improving. been 3 weeks think im permanently worse. i am very depressed im trying to hold on to hope will get better

120

Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 08/10/2026

noticed typing look at screens def make tihngs worse. back tomorrow maube

030

Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 08/10/2026

nausea and thudding headace reliably triggered by his deodorant spraying but not always into full migraine, causes coughing sneezing watery eye etc but not alsways asthma wheezing. miserable

010

Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 08/10/2026

quick note in case phone breaks again still extreme fatigue, haven't eaten real food in days no energy, light sensitivity mild headache mild burning, can't move body too tired, sleep not helping, pvcs predictable come on around 4-6pm last rest of nightworse when moving or after moving

120

Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 08/10/2026

weird email from OTs saying thanks for letting them know i'm better after my crash and to confirm an appointment in a few days i haven't emailed them since last one saying i was in extreme crash and not getting better

120

Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 07/10/2026

my phone camera doesn't work for videos or regular photo. only works in extreme zoom and not for recording. nothing I can do I need to sleep I'm so fucking tired instead wheezing and migraine triggered

100

Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 07/10/2026

awake all night with chest pain and palpitations. woke at 9.20am from stepdad blasting loud music. at 9.40am he sprayed the landings, bathroom, my door and hall with deodorant. when I tried to landing to open window he turned music way up and sprayed directly at me

110

Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 05/10/2026

it's been going on for ages but annoyingly it kept happening between recordings. really glad i captured some just to prove i am having a lot of them and very close together. i'm so so so tired right now cant type more going to try and sleep or at least rest.

020

Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 05/10/2026

so last week i did manage to find my kardiamobile and the battery still works. i thought it was broken but it randomly started working again a couple nights ago and i actually managed to capture some PVCs just now.

110

Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 04/10/2026

he did it again today. mum now refusing to bring water or food i ordered upstsairs. cant survive here

000

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’

15331

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

well actually I did have ME. It just took me an incredibly long time to get a diagnosis.

020

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

151

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.

59434

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.

153

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

it always means mum will stop helping with my laundry again and won't bring my parcels up. happens every time.

110

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

the thing is because I asked him to stop he will now start doing this even worse and multiple times a day again. I'm so upset with myself I shouldn't have said anything but I couldn't fucking breathe

110

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

I messaged mum begging her to please talk to him but I know this will make things harder for me. she will accuse me of lying, say I'm unstable, say I'm attacking her husband and the usual. he never does it when she's here . only when she's at work or away for the day

110

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

I am still in PEM extreme bad. he went around slamming the windows shut after I opened. he then sprayed even more all throughout downstairs and up half the stairs, slammed windows again and locked the door. I vomited & smell triggered migraine again

110

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

110

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

210

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

Didn't wash, just used body wipes. Lay there in the dark for almost the whole day feeling disgusting with greasy hair, in clothes I hadn't changed in days, glued to bed, no screens, eye mask on #MECFS

120

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

I think the reason I'm so much better right now is that yesterday I just. didn't eat after brekkafast. Didn't make any food at all because it uses up so much energy.

120

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

I can also type like a normal person right now! instead of just tiny, punctuation-free fragments while I clutch my head, lying down with phone propped against pillow. have to stop now though as causing added fatigue. HAVE to wash hair unfortunately. hopefully it's okay. back later, maybe.

130

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

what sucks is how I feel today would've been "bad PEM" a couple years ago but it is what it is. still can't tolerate using stairs or walking around much but I can at least run a bath and sit in it, put the kettle on, sit up, tolerate sliver of light through crack in curtains

130

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.

130

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

020

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 .

010

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

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

030

Tired 🌈🏴‍☠️✨🔇♿🇵🇸 @flintsponytail.bsky.social · 26/09/2026

thank you so much sorry didn't respond have severe migraines at moment can't look at phone

010

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.

120

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

000

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

120

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

nurse came straight upstairs which was nice I could lie down

010

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

I have couple tins veg and packet noodles and microwave but NO energy to cook. none. can't do it. I tried. can't get to microwave can't clean pan and cook things. Will tell OTs how bad it's got againwhen I see them . can't get out of bed & have to put phone away agjn

100

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

didn't eat yesterday aside from bit of bread and leftover cake and some salt in my hand. ran out of cup noodles, instant mash, cereal bars and can only buy in bulk. can't afford. will post Kofi later please please please share. don't know what else to do.

100

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

100

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.

010

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.

110