I’m loathe to talk about the effort it took to get me to the sea, for fear it feeds the narrative that effort or will have anything to do with this illness. They do have their place, but not in the ways those misguided, uneducated people assume.
It took a lot out of me to get there. But it also took support, care, the gift of a holiday cottage nearer the beach, planning, understanding that there would be ill-effects afterwards and care and support will be essential to ride out those consequences.
I made it to the beach three times. Two short trips at half an hour each, and one longer bucket list type experience of being in the sea with two of my nephews. I talk to my nephews about my Body Battery. The Body Battery is scarily low, but my heart is full.
Core memories were made on this holiday. I was able to play Uno with my nephews. Games are not a frequent occurrence for me, never mind with little ones.
They expressed their first frustrations about my inability to run or move at any real speed. But my family and I delighted in my being there at all. Sitting at the table at almost every evening meal time. Conversation. Laughter.
There were opportunities I didn’t want to miss. Some I missed anyway, because my desire to do something often has little bearing on whether I can physically do it or not. But others I got to experience.
I was both sensible and reckless. I view my fluctuating health quite differently now post-relapse (2020) and post-major-surgery. It ebbs and flows, and on this particular week I was blessed with more good luck than I’d hoped for. Still, I must ride out the consequences just as I always have to do after doing A Thing, never mind as big a thing as a week away from home with more company than I usually manage.
'M.E. myself and I' by Anna 