From Stuff and Things.
It’s M.E. Awareness Month in May. We’re supposed to brand ourselves as a congruent whole – patients, loving carers, a few good doctors, and our allies – versus – the system that failed us. But what about the carers that stop caring? Is there a time limit on how long we can be ill with our loved ones as well as greater society? Nobody wants to hear about the inconsistencies in our narrative. But they exist, and they are important stories to tell. Stories like this one…
The cracks started to appear in 2013 but the chasm didn’t open until 2014. Things were as ok as they had ever been and I have no idea why this happened. My father was always controlling but nothing like this.
I had just turned 34 and for the first time in a long time I was on an upward swing. I had discovered a few treatments that had added 25%-30% to my previous level of functioning. I kept racking up an extra 1% and 2% here and there; could I actually recover to a functional level? It was the first time since I got ill in 2002 that I allowed myself to think such a thing was possible, after all, it always ended in bitter disappointment.
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