Cartoon by @SKZCartoons
I posted this online yesterday, but I’m going to leave it here as it’s just as relevant to the blog. Seeing the posts and protests from so many others with CFS yesterday reminded me of not only how far there is to go in the world’s understanding of this illness but also how far I’ve come and how incredibly fortunate I have been:
“I’m sure I’m about to speak to the converted but couldn't let 12th May go without a note. Today is an international day of action #milionsmissing for the people missing from their lives due to the neuro-immune disease called #ME or #myalgicencephalomyelitis (even I struggle to spell it properly). Athletes, teachers, students, performers, parents, children, executives, nurses... It's otherwise known as #ChronicFatigueSyndrome, more about how that's a bit of a crap term below.
Anyway, I'm definitely not missing from my life - I've just today landed in Los-freaking-Angeles after exploring and snorkelling in the South Pacific for hecks sake. I refuse to be missing. I will fight by living more than I ever thought possible - albeit in a new and very different way.
But it's not that I have more will power, I'm no more positive than the millions of people who really are still constantly bedridden. The truth is I am one of the very lucky ones. I am slowly finding my own way through the medical maze to reach a level of functioning that can allow me to live more richly than ever before.... But I still have to manage it in most moments of my day. And I still have the lowest of times when I can't lift my left arm or hold my head up and have to watch the life I so really want to live dropping away from me again. I have no idea if this is nearly over now or if like many people I know, this will be decades.
We need more research. Desperately. There isn't an obvious pharmaceutical answer to this and funding has not been fourth coming (any cause and effect there I wonder!??). The NHS unit that did provide the physio that actually helped me a great deal has now been completely shut down. We are making progress with understanding - I have met a lot, but we still need so much more. Today brave souls all over the world from Canada to Australia and The UK are compromising their recoveries to get out of bed and make a noise and be seen. The people who can't physically make it are putting out an empty pair of unworn shoes with a note. And I think this great little cartoon says a lot. Ask around, and google 'spoon theory' if you fancy it.”
An ME/CFS Thriver