Hey it's me, Lena. I was one of the patients who did an interview about hope for @ChronicLiving1 As you might know I'm kinda the hope grinch, but I've tried to make it not that bad 😅 chroniclivingtherapy.com/len…

There's something very scary about reacting badly to so many meds. It's not just about not being able to try things for my chronic illness. What about emergencies. What about life-saving situations. What if I ever need end-of-life care to ease the suffering.

My ADHD is ruining my life. Makes it impossible to rest and my cognitive symptoms are getting really really really bad because of it. Don't know what to do :( Does anyone with v severe me/lc tolerate adhd meds?

Does anyone know of a UK headache or pain neurologist / consultant who is open to prescribe off-label medication and prescribing beyond the usual NHS pathway? It would need to be a telephone consult with my mam as I’m too poorly to manage it myself. Asking for a 🦄- I know👇

Single me has much better mental health than relationship me 😄 It's always been like this.

Why do I feel like such a failure for having to cancel a medical appointment, while it’s them failing me (and all of us) for making healthcare inaccessible

I never understood “having nothing more to lose,” especially when it comes to severe illness. The less you have, the more you have to lose

Monbiot writes with sensitivity & empathy about how patients with ME - &, since the pandemic, Long Covid - have been abandoned & gaslit by medicine. If you have a friend, loved one, or acquaintance with ME or Long Covid, perhaps give this a read. theguardian.com/commentisfre…

It’s always when some nice things start happening in your life again that your health has to ruin it, right.

My ferritin keeps dropping, but my serum iron stays about the same. I’m obviously going to discuss it w my doctor, but has anyone else experienced this?

Happy Fat Bear Week to those who celebrate! ✨🐻✨

Ready, players? Fat Bear Week voting goes live today at 12 pm ET.

I'm trying to distract myself with the things I usually do, but my "adrenaline" levels are pretty unbearable and i have no idea when this will settle down again 😞

Message written by my partner, who is seeking advice on how best to prepare for a possible hospital admission: My specialist want me to be admitted to hospital due to my ongoing decline and daily post-meal crashes, which have been going on for over a year and have left me weighing 50kg at a height of 1m75. I’d like to hear from people who have been hospitalised, particularly those very severe. What advice can you give me to ensure I’m taken seriously, and that my stay in hospital goes as smoothly as possible? I’m trying to make this stay as bearable as possible, knowing full well that it will be awful and that it risks making my condition extremely severe… I’ve already thought about asking for a private room and requesting a letter from my doctor explaining my condition and the precautions to be taken with me, but I’m sure you’ll have plenty of good advice to offer; I’ll take anything that might help. Personal stories, documents, resources, etc. If the documents are available in French, so much the better. To give some context, my condition is very severe; I’m bedridden and can only tolerate my partner’s presence. I haven’t been able to speak to anyone else for over a year, no showers, and no video or audio stimulation whatsoever. I crash even from a simple blood test, and a 30-minute ambulance trip in February left me unable to go to the toilet to urinate. I already have crashes almost daily in the quiet of my dark room. Any help is appreciated #MECFS

Hey peeps, asking for a friend with low iron during pregnancy: how can she get some iron into her system without “normal” pills? She can’t stomach them at all.

I have no idea how to get out of this very bad "adrenaline". It's always like this, a med triggers it and then it takes ages to settle down a little and go to more bearable (but still bad) levels 😞 And I'm calm and it's not happening in surges, it's always there.

10 things other people like, but I hate: Coffee Tea (unless it's to spill) Traveling New year's eve Crafting 🥱 Mentioning LC but never ME Doctors Kids People singing together People in general

POTS I really hate the name POTS as diagnosis Why? Because it leads to massive under diagnosis for an already very common but little know about disorder POTS is a type of dysautonomia. It is named after the cardiovascular response to standing with symptoms

What Ed Sheeran did wrong tonight: - Started with Oct 7th - Called it a conflict - Pretended that he didn't know enough - Both Sides it - Didn't apologise to Macklemore - Didn't call it a genocide - Didn't say FREE PALESTINE - Used a teleprompter - Didn't blame Israel