used all of my energy to go downstairs and get the last tiny dregs of vegetables I could find. wash and cut them, washed my pan and spoon and bowl and knife and chopping board. cried while doing because I was so so tired.

probably a really stupid idea. going to try walking up to the road and back down steps again. was so tired earlier I just cried and cried. I don't even want to be here anymore what's the point. I can't do anything

Seriously struggling. Couldn't do aything for days. I've written a slightly snippy appointment request to GP essentially saying I've been left with no help, with same symptoms I've had for years. they'll probably decide i'm being too difficult or hysterical. whatever. we'll see.

MADE IT OUTSIDE had loads of caffeine. very shaky managed to slowly walk downstairs and outside to sit. shame mum cut down tree the birds loved and got rid of the buddleia that would be covered in butterflies now. no life in the garden anymore. can't type more too tired hope everyone is well

woke up with flank pain again. no idea why. headache finally going. still very dizzy, nauseated, extreme fatigue. very hard to type. have telogen effluvium AGAIN (have chronic TE since 2022) which is upsetting as i'd been happy about my hair for once. oh well.

had really bad stomach yesterday and was too dizzy to use the stairs for most of the day so didn't get to eat again. woke up still with vertigo and also very bad nausea and stomach pain. going to try and use stairs now to get cup of tea and snack? never any ready to eat food and no energy to cook

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drank two cokes and managed to make some food. lentils, spices, oil, tomatoes, a small piece pepper,last of the rice. took 6 hrs before cld get out of bed. unbearably tired. had disrupted feverish sleep as always do in crash, extremely twitchy legs and wired feeling. so tired felt I would be sick

made crahs worse getting ready to go outside and not happening now. out in all my energy to make sure presentable. oh well

slept for 2 hours then woke up because the rash is back. it's everywhere and intolerably itchy. impossible to sleep and to not scratch. it's so so so bad

BAD crash just updating to say rash has gone right down with coal tar shampoo, betnovate and emollient. barely there I'll be back hopefully sooner rather than later really really bad crash

since the GP won't do anything i need to try and treat this rash myself as it's spreading quickly and bleeding and i don't want it to get infected. please could people share my ko-fi link and/or donate so i can try some home remedies? i would be so, so grateful 🩷 ko-fi.com/hanslabyrinth

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸@flintsponytail.bsky.social · 2w ago

GP booked me an appointment at the surgery saying my rash needed to be looked at. when i replied that i'm housebound they decided it doesn't need to be looked at and told me to moisturise more and take fexofenadine.

Are you FUCKING kidding me. I just got charged 19 quid for more prescriptions and there's NOTHJNG I can do about it

in a crash. i think the coal tar shampoo actually helped a bit. i'm just allergic to it. used again while in bathroom. it causes painful burning and angry redness but once that subsides (after about 30 mins) the rash is less itchy and swollen. so have to weigh up cost vs benefit

can't order groceries today because I have to wait 5 days for my Tesco refund apparently 😒

I've found so many photos online with rashes identical to mine. all women, most of them pregnant. none ever received an explanation for it, just had other things ruled out (folliculitis, eczema, prickly heat) so I wonder if it's hormonal? 🤔

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I just got charged for another prescription what a day!!

oh a text from the delivery guy- sorry there's a what??

I hadn't realised the rash is all over my neck too. must've spread in the night 😔 at least it's not itchy there

since the GP won't do anything i need to try and treat this rash myself as it's spreading quickly and bleeding and i don't want it to get infected. please could people share my ko-fi link and/or donate so i can try some home remedies? i would be so, so grateful 🩷 ko-fi.com/hanslabyrinth

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Tired 🌈🏴‍☠️✨🔇♿🇵🇸@flintsponytail.bsky.social · 2w ago

GP booked me an appointment at the surgery saying my rash needed to be looked at. when i replied that i'm housebound they decided it doesn't need to be looked at and told me to moisturise more and take fexofenadine.

he's now told me to take two fexofenadines every day for two weeks. they won't send me for allergy testing even though my allergies are out of control and not responding to anything. just take two fexofenadines instead. right. great. thanks.

Tired 🌈🏴‍☠️✨🔇♿🇵🇸@flintsponytail.bsky.social · 2w ago

i told him emollient creams are making it worse and his response was to prescribe literally the SAME EMOLLIENT CREAM i was using i'm so fucking fed UP. the NHS is so fucking SHIT.

GP booked me an appointment at the surgery saying my rash needed to be looked at. when i replied that i'm housebound they decided it doesn't need to be looked at and told me to moisturise more and take fexofenadine.

one last thing before I go to bed. I was able to get food today. I had noodles and then later I had lentils. They're making SO much noise so can't sleep for a while and in a lot of pain but will hopefully at least get some rest night night

got so irritable about this rash I decided to do the exact opposite of what I've been doing (washing quickly in cool water, applying thick moisturisers and steroid cream)

PEM kicking in fr first time in a while. same nerve-type burning headache across scalp, burning nose, achey joints, shivery, nausea, light sensitivity. here we go again. I'm out of snacks which is annoying. Amazon keeps putting cost of protein bars up 😒 Will try to cook some noodles adiós

mum left and he came in and sprayed deodorant all over me again and thru house then tried to shut the door, trapping me in with it. I had to hold on an yank it back. I've had really bad asthma as result that caused me to vomit putting huge strain on my body again. I can't keep doing this

lots of very loud, deliberate noise around me today since i've made it obvious i'm not going to be completely confined to my room again now they're back. doing their best to keep me trapped up here, unfortunately. but i got fresh food from the fridge; salami, cucumber, peppers, tomatoes, cheese.

this rash is driving me insane. it's got even worse & is now spreading across my legs & to my upper arms again. it is maddeningly itchy. got to be some kind of eczema. i've ordered some latex-free marigolds to do the dishes because it got really, really swollen on my hands when i tried earlier.

I've been kicked outside. like literally shoved outside when I was in the kitchen trying to get food. she kept pushing me to go outside then started making lots of noise so I'd have to and couldn't even get upstairs to my room how am I meant to survive here