Sick Ness

I am scared that the damage done by the Vyepti infusion is permanent.
My M.E and fibro are worse because of the insomnia.
The chronic migraine is still as bad but now with the addition of hypnic migraine.
#MEcfs #Migraine

My bowels stopped working when I was mild...

@tessamunt.bsky.social what can we do?

London hospital STILL starving severe ME patient, Savannah — bias medical approach to blame A South London hospital is still putting severe ME patient Savannah's life at risk and a clinician who psychologises ME might be why.

NEW 🚨 A South London hospital is still putting severe ME patient Savannah's life at risk and a clinician who psychologises ME might be why.

www.thecanary.co/uk/analysis/...

Someone has put templates and addresses together to
- Email the hospital leadership.
- Email the CQC (regulator).
- Email local MPs (and your own MP).

Please do so if you can!

#mecfs #greatestMEdicalScandal

Or the cats vomit 🤢 😼

I am trying to do what's right for my body and my health, but I cannot control the weather 😫

Nobody died here and there's no support.

An NHS hospital is starving a severe ME patient and has now stopped giving her fluids Savannah has now lived with severe ME for several years - but the Queen Elizabeth Hospital in South London is putting her life at risk

An NHS hospital is starving a severe ME patient and has now stopped giving her fluids! Please scroll to the end to copy/paste an email to NHS Trust Chief Executive! Please share! www.thecanary.co/uk/analysis/... #pwME #MECFS #SevereME

"Unfortunately Elizabeth's home life was stressed prior to illness. And her illness has made the situation worse."

Pregabalin for me, I tried gabapentin but couldn't stand the side effects. It took a couple of years trial and error to find a painkiller that worked for me (dx fibromyalgia at the time).

YouTube video by Norges Myalgisk Encefalopati Forening PEM - post exertional malaise

One of the best and most accurate as well as concise videos on #PEM the core and cardinal symptom of #ME/CFS
by The Norvegian ME Association @meforeningen.bsky.social

👋

Cardboard box with circus lettering "lucky dip", and an opening in the shape of a clowns mouth.

I made an advent calendar for my husband. Super festive... 🤡🎅🤣

😁🤣

A rainbow on the bottom of a wooden sideboard

Strong rainbow game today

💙🫂

Isabella Rosellini in Death Becomes Her

Please post what you'll wear when you become dictator. This is mine.

If you're in the UK, make sure you have read the NICE guidelines for M.E., don't let anyone make you do "graded exercise" in any form and be sceptical of CBT as a treatment. Rest properly - no phone, no tv. Learn to pace - I recommend the book Classic Pacing by Dahl.
Look after yourself 💙🫂

All of my skin hurts, inside and out. 0/10, do not recommend.
#allodynia #PESE

Waiting for migraine botox 💉💉 in a brightly lit room full of maskless people 😬😷

It's important to remember that sometimes you will do everything "right", and still feel awful and that it's not your fault 🫂💙

💙🫂

Pacing is easy to say, easy to "prescribe" but SO DIFFICULT to do.

I am feeling very sorry for myself today.
I miss my old job.
I feel pointless.
Low self esteem is no good for pacing with #MEcfs

DecodeME Complete the DecodeME Questionnaire by 15th of November 5pm to Become a Participant Just two weeks to go Please highlight this opportunity widely, on and off-line. UK participants only but important to all of us around the world

This trial has funding to analyse 25000 samples but is well short.

To register/find more info, go to: decodeme.org.uk/portal

Please tell others.

This article explains why the study is important: www.healthrising.org/blog/2023/10...

#MyalgicEncephalomyelitis #DecodeME #MEcfs #CFS #PwME

Mundane Halloween is back!

Today is the "Mundane Halloween" contest in Japan, sponsored by website
Daily Portalz

The idea is to dress up as something incredibly ordinary.

Here is a thread of some of my favorites from this year!

Good news: I slept well.

Reality: I slept so soundly my whole body seized up and I couldn't move my torso and needed help to get out of bed.

Swings and roundabouts.

Can’t get upset about Boris Johnson getting a job on GB News. That’s exactly the kind of low-rent bollocks-talking gig he should have. The thing that was appalling was when he got the job of Prime Minister.