Happy Imbolc and Blessed Be 🧡 This is my first time making a video like this, but I hope you enjoy getting a glimpse into my Imbolc celebration this year. youtu.be/ExteRMIvLso?...

I really hate being a burden 😢 poor Thea has to do so much to look after me, O, and the house. Especially at times like this. And I hate it 😭

FYI fellow Pagans - @paganmusic.bsky.social's monthly House Concert is live now. Just in time for Imbolc. www.youtube.com/live/sqSPJ7M...

I really don't want to go for my afternoon nap 😩 But I will, because the alternative is major symptom exacerbation. You can't understand how much it sucks to have so few usable hours in a day anyway, and then have them reduced even more by this 😭 ME/CFS fucking sucks.

Remember how I didn't react to any of the allergens on my skin patch testing last week? Well, I've suddenly reacted to one. A whole week late, and after going back on my high dose antihistamines 🙃 Sent a photo to the hospital, but they want to actually see me. So we're travelling again tomorrow.

I have royally fucked up my neck 😫 It's been a bit stiff and crunchy for days, and now I can barely move it. It's so bad I just screamed in pain when I put weight on my arm to help me get up, and the other side of my back is spasming in protest. Lorazepam & Naproxen have been taken 😭 EDS sucks.

Updates to the UK's Online Safety Act had "not achieved its goal of protecting minors" and had "diverted traffic to darker, unregulated corners of the internet" Yeah, no shit

Spent over 2.5 hours with an advocate going through my PIP renewal form last night. The PEM is hitting hard today. But it was *so worth it*. She knows the system so well. She also fully understood the complexities of my health, unlike the DWP. I'm never dealing with them on my own ever again!

My body is such a dick 🙄 Yesterday I had a stiff neck, last night my back went into spasm, this morning my jaw kept clunking, and just now I wiped my nose and something *popped* painfully and my nose started bleeding. It's sometimes hard to explain how much EDS fucks up your body, but this helps 😒

We grew up on hero movies Media celebrating empathy After school specials showing diversity and acceptance We grew up with Mr Rogers Bob Ross Reading Rainbow Wishbone Power Rangers Indiana Jones Hellboy and the Matrix and you think we'll sit back for fascists?

I had a dream last night with @chaoticauthor.online in it 🥺 He was excited to share a new book trailer, before heading off on some adventure. He gave me a hug before leaving, and I said, "I wish I'd been able to hug you in real life." He just said, "this is how I would have hugged you!" 🥺

This has been on my TBR for far too long. Finally started reading it today. Almost halfway through. Highly recommend. Especially for those who, for whatever reason, struggle with longer texts. This is a graphic novel, and packs a lot into each page, but is still a fairly quick read.

As I'm currently going through the PIP reassessment process, I want to know what YOU want people to know about PIP. The general public has this idea it is super easy to get disability benefits. So what do you wish they knew? I may turn this into a blog post, when I finally have the energy.

I emailed - it doesn't take long if you have the spoons to copy/paste and tweak the template email as desired. #MEcfs #LongCovid #NEISvoid #Disability

PEM is so much more than fatigue. Just as ME/CFS is too! Yes, the fatigue absolutely sucks, but it's just one symptom. For example, usually my heart rate rises over a few minutes upon standing. Today, it's shooting up to 130bpm within seconds of standing. Hence I am avoiding it as much as possible.

Some good news! An accessible diagnostic biomarker would transform the medical landscape for ME. Turning it from a clinical diagnosis to a verifiable disease. 🧪 Best of luck to @cgatist.bsky.social & the team at Edinburgh. More details 🖇️👇 www.meresearch.org.uk/research/pon...

As an accidental roommate of two of these venomous little fuckers, I can confirm everything about this

I'm here to shamelessly plug my partner's bookstagram 😤 She's an avid gothic fiction fan and is reviewing books to begin with! There are big plans and it's going to be a fun journey, but we need to get it off the ground first 👀 If it sounds like your thing, go and follow the_cosy_crypt on Insta 🌻

Question for those with MCAS: can reactions cause extreme anxiety, internal tremors, and shivering? I had to stop my fexofenadine this week for skin patch testing. Along with an Asthma flare and general itching, I had those symptoms too. 1/2

Medical trauma is so awful. I just cried because I'm scared the dermatologist is going to tell me I wasted their time, as I didn't react to anything but the tape. I only feel that way *because* of multiple past experiences. The fear is so real.

Got to do a 2 hr round trip again today to see dermatology and basically say: "I didn't react to any of the allergens. I did however react to the tape, and my Asthma & MCAS are deeply unhappy without fexofenadine. Apparently I react to everything except the most common allergens for skin issues" 🙄

Did not expect my second guess to be right 😂 Wordle 1,678 2/6 🟩⬛⬛🟩⬛ 🟩🟩🟩🟩🟩

Anyone else yearn for more intimate friendships? I have some amazing online friendships, which I'm so grateful for. But I long to have friends nearby too. Everyone disappeared when I got this sick. But they weren't cuddle up on the sofa, life sucks, we've got each other friends anyway.

I saw this last night, and need to share. You should NEVER pay to be involved in clinical research. This is preying on a vulnerable & desperate population of patients, whilst presenting itself as legitimate research. Please do not pay almost £2k to share your genetic data!! #MECFS #LongCOVID

So I just got hit with the most intense feeling of anxiety & sadness. This morning's admin finally hitting my nervous system. Had a cry. Thea hugged me. Now I'm gonna listen to an old favourite audiobook and try to rest. This week is kicking my butt. (Oh, I have a migraine too. Because why not?)

It's so miserable listing out my diagnoses & meds for my PIP advocate. At least I know she'll make sure these are all properly taken into account, unlike when I've tried to deal with the DWP on my own and they've said things like, "you can't be in that much pain, you don't take strong pain meds!" 🤬

Feels SO GOOD to take all the tape & patches off my back. No reactions so far, but my EDS skin is bruised from the tape 🙃 My back is also SUPER SENSITIVE. Thea touched my back gently and I practically leapt in the air like I'd been electrocuted 😂 Chest & gut not happy without fexofenadine though.

Skin patch testing is no fun 😫 My back itches, but I can't tell if it's the substances or just the tape 🙃 My fragile EDS skin is not happy about the tape and has already bruised on one area. And dropping from 360mg of fexofenadine a day to nothing is a wild ride. And it's only been a day!!

On the phone to the DWP to try and get an extension for my PIP renewal paperwork. Took over 6 minutes even to get to the hold music. Experience tells me I'm gonna be waiting a loooooooong time. Pray for me.

I just gave my teen son some chocolate. He promptly started chomping through it, so fast. I was like, "whoa, do you never just let it melt in your mouth to savour the flavour and texture?" He looked at me like this was the most absurd suggestion ever 🤨 So which do you do? Chomp or savour?

Had to travel for skin patch testing. Bit of a sensory nightmare tbh. So we treated ourselves to lunch from M&S 😋 and I ate sushi for the first time in years! Yay for another OCD win. How I went from absolute despair and meltdown last night, to exposure therapy today I shall never know. But go me 😃

I'm not in a good place right now. My PIP renewal forms arrived. I have to, once again, prove how sick I am, without losing myself within such a cruel and dehumanising system. I've sobbed so much today, my head and face hurt. I even dreamed my family and doctor didn't believe me. I'm not okay.

One of the hardest things about being chronically ill, is being made to feel like a burden. By society. By medical professionals. By family and friends. By yourself.

A crow landed on our gazebo. We all cawed hello to the crow, who promptly flew off... making Thea spot a robin stuck in the greenhouse. I went running out to save the robin. It landed on O's window ledge, whilst everyone watched. We're now thanking the crow for making us aware of the robin.

Okay, so definitely sick-sick 😭 My head and stomach are a MESS right now, and my temp has risen to 37.9°c (100.2°f) 😫 My Garmin also congratulated me for being active. I was on the loo with tummy troubles 🙃

Me: ow, ow, OW! Thea: ow, ow, OW! Me: stop mimicking me, bitch! Thea: have you taken any painkillers? Me: 😳 Thea: see, I'm not a total bitch! Ah, true love 😂

Living with chronic pain sucks. There is never a time nothing hurts, and you never know when a new pain will emerge for seemingly no reason at all. This morning my lower back, left heel, and left thigh have all just given up and I am struggling to walk. Didn't have that issue when I woke up 🙄

The awful reflux I had yesterday is still here this morning. I also struggled to eat dinner yesterday as I felt too nauseous. Put it all down to PEM, but starting to wonder if I'm sick-sick 🤔 It's SO hard to tell, as PEM feels like the worst flu. *But* I don't normally get reflux with it...

The only thing worse than PEM, is PEM with migraine-induced-insomnia, so you can't fucking sleep even though you're sick and dizzy from exhaustion 😫

PEM sucks. Weds - spent a couple of hours sorting out my writing drafts. Whilst in bed. Thurs - lost most of the day to sleep. Fri - still beyond exhausted, but *can't* sleep. Because I have a migraine that brought insomnia with it. So I just feel nauseous and dizzy and out of it.

Because I overdid it yesterday, I didn't wake up until gone 10am, and then slept again from 1-5pm. So I haven't seen much of today. And I'm still tired 🙃

Heads up - I got a new profile pic. Realised my old one was very out of date 🙈 This was when I was all glammed up to go with @theajane.bsky.social to her boudoir shoot. I don't normally look like this 😂

A tale of two halves. This afternoon I copied and pasted bits from a couple of drafts into Scrivener, so I could see how much I can salvage by editing and how much needs writing from scratch for my fantasy WIP. 1/2

Well fuck! They already peeled off. They were a cheaper brand, but even when I bought a fancier brand ages ago they kept slipping off. So I'm guessing it's my EDS nails again 😭 We shall try on Thea's nails to compare. Because they lasted less than an hour.

I got some nail wraps, as I'm fed up of never having pretty nails thanks to hEDS (my nails are so bendy, nail polish never stays on!) I need more practise. I also cut them in half, but then stuck the straight edge at the bottom like a numpty 🤦‍♀️ But I'm so happy right now! Here's hoping they last 🤞

Next week I'm having patch testing done. I've never had it before. What do I need to be aware of? And what do I do if something becomes super itchy and irritated? It says don't take antihistamines, unless prescribed daily. I take a high dose daily, will that not impact the result? 🤔

Just a thought that has been on my mind recently. Also remember how I said books were part of what radicalised me? The Tortall books by @tamora.pierce were a huge part of that. I will never stop recommending them to others.

Darn it. I have several key scenes, including the opening one, in my fantasy WIP where the characters ride in carriages. Going back to it now, I realise that if it is truly going to feel like it sits in a medieval type era, they would not travel in carriages. Past me did not do enough research 🤦‍♀️

Wes Streeting promised to "consign corridor care to history." But words are not enough. We need action, not guidance. We need a clear plan, not promises. Join thousands of people demanding Wes Streeting take immediate action to end corridor care today 👉 bit.ly/end-corridor...

ARGH MY EYES!!! 😭 I was making tea for @lady_thea21. It was a loose tea blend of rooibos and ginger. Some of it fell into the bottom of her cup, so I blew into it to get them to come out. Well, they came out, straight into my eye. And there was GINGER in it. Damn, it burns 😭