Of course you want to get back out there doing normal things, just as soon as you feel remotely ready, but there's a right time and a right way to do this with ME/CFS. Exploring some of the expectations, the risks, the difficulties and the lessons of inching back outside again.
I’m beginning to sense that in synesthesia lies the key of so many aspects of my long running chronic pain. If I could only gain a better viewpoint of what actually happens to me when I sense things, I suspect I might be able to catch a glimpse (like some sideways-on reflection of myself reflected back at me in a shop window) of some of the causative aspects of pain where no other provocation for pain seems to exist. This feels like a worthwhile line of enquiry for anyone who is neurodivergent and weary of how unusual levels of pain never seems to abate, especially as I think it is possible to have one of the less talked-about versions of synesthesia and not even realise it since it is your version of normal.
Letting a day of nothing in particular be an accomplishment, even more so than a day of “productivity”, is a necessary mind re-program I am steadily adopting for my health. Allowing myself to feel equally good about myself and, most importantly, relaxed because I managed to go slow today rather than ticking things off a list is a crucial reinvention of myself on the way towards, somewhere down the line, reaping a far healthier nervous system than I ever had in my life. I’m playing the long game now, the fruits of my labours no longer some transient thrill gained from fighting down another dragon but the slow and steady harvest gained from peaceful seeds planted in the ground on some equally slow and steady day and all the intervening patience I had to watch them grow.
Living whole 