Grieving and others expectations

I have amazing friends I am so so lucky the hardest part of this all is telling them exactly how low my current baseline is

 Nobody unless they have gone through this will understand, so I'm grieving for myself I'm also grieving through telling my chums and trying to manage their expectations too. Its so so hard, they don't understand and why should they? This is so extreme, well at the moment anyway. 

I am hopeful for progress. I just really need to pull right back and concentrate on the first stage of stabilising this. I can't do zoom just now I really can't, it takes and enormous amount of energy which I just don't have, if I do a zoom it has to be with my physio that's all I can do

Seeing others upset also just wipes me out completely, having to be strong for them too is impossible just now and managing their expectations around my condition is too much. But I'm also scared they forget me but that's a chance I will have to take

A lot of chums do get it, the gorgeous Jen, Glinda quilts is making my Siblings blocks for me and also sent me this 

It's lipstick from liberty 💕💕💕💕 she said gin probably wasn't the best idea! So sent me a red lippy, oh Jen this was the best, grey Donkey thinks so too 🥰🥰

This screenshot from visible shows how much a zoom can take out of me, the bottom one was.with my physio took 3 points but those are necessary! The second two were the set up for and a half hour with my best chum

My daily budget of energy is 11 points a half hour or even a 15-30 minute zoom call takes almost a third of my daily budget .... that's energy I don't have

My top for anyone who has a chronically ill chum??? Listen to them, if they say they can't do something then accept it and believe that they know their condition best. I know.its hard when you want to DO something but sometimes that something mean doing nothing but waiting and being there for them on the other side