sad that you only have white polyester tee's to choose from - no way on earth I can wear polyester, I'm afraid. And white... won't be white for very long! look forward to next Christmas 🫠

Thank you so much to all, thank you Emerge ❤️❤️❤️

wrote that 5 years ago, 3 years after getting sick. still holds.

... my life plays out
in torturous slippery snapshots,
catching at my limbs,
as they flail around,
attempting to cling on
to what is solid,
the me before,
the me i cant forget.

#MECFS

unbelievable. @bsky.app - is there a way of getting these bots off the platform?

I love the sound of this! where can I watch it?

Hi! 👋🏽 I'm here, just sporadically 🐢

of course, thanks! really appreciate your input!

Thanks for yr reply! I don't have benadryl, but I cd try famotidine? I'm thinking it may be a BP thing, as I take l-theanine, taurine, ashwagandha & garlic atm.. my blood pressure is prob in the minus figures ... I realise now! lol

@rahaeli.bsky.social - you got any ideas on why the extended hot flush? is it a mast cell thing, or just menopause going haywire?

yay! good luck at the clinic- hope you can remain stable enough to go!

so glad that it's been so beneficial for you. I've had mecfs for coming up 8 yrs now, so I've pretty much learnt how to pace - the body battery feature has been invaluable in that learning. HR is now controlled by clonidine!

Hey, have you come across clonidine? It's a new one for me, but works really well alongside ketotifen - both great for MCAS (if you weren't aware)

ah, last time I checked, the armband wasn't available over here, down under. I think I'll just stick with my Garmin! I gave up recording symptoms, because... WAY too stressy and too much work. How's the armband working for you? Do you have anything to compare it with?