I have a memory of a birthday in my twenties that still chokes me up. I can’t remember much of the day itself, but I know my family will have been their usual wonderful selves in making it as special and as good and as lovely as was possible.
But the memory is of me standing at my bedroom window looking out into the night sky and sobbing by heart out. My life, in that moment, was both exceptional and terrible.
I have always been very lucky with the support I have had from those around me during these ‘M.E. Years’. But my goodness it was so far from the life I thought I’d have. And another birthday had come around and my health, although improved to a point of being able to use the stairs again, was so restrictive and so plagued by symptoms.
I turned 37 last week. I celebrated it in the home I share with my husband, who I didn’t meet until after my 26th birthday. I was visited by my parents, my brother, and four of my nephews. I was able to collect one nephew from nursery, with my husband’s help, for the first time ever. He was delighted to see me and flung himself at me when I arrived.
I have been confident for a very long time that I will never be free of M.E. I know now, after the 2020 relapse, that Severe M.E.* could well reappear at any point. I live with that knowledge in dread, but also with a unique ability to truly, truly savour every little thing.
I have the upmost respect and admiration for the versions of myself that just held on tight as best they could. Because health does not equal happiness. A life can be created right where we’re at. I know. I did it.
Birthdays are notoriously tricky and complex when you live a life with chronic, ongoing illness. But this one was the first in a long time I felt nothing but happy, loved, and very, very lucky. Even with the knowledge that I will be poorlier for it in the week to come. Even with M.E.
*I still have M.E. but am no longer in the Severe category.
'M.E. myself and I' by Anna Redshaw 