It is unfathomable to me, at times, that the person who has just had to be helped out after a bath because her arms couldn’t push her own body weight up, and the person who joined in so much over the weekend with what everyone else was doing is in fact the same person; me.
It can still blow my mind; the fluctuation between utterly dreadful and just about bearable. It swings like a pendulum from ‘my good’ to ‘my awful’. There will always be a consequence for activity, for that is the very nature of the beast that is M.E.
This evening I found myself having what felt like the most gruelling bath in a long time. I wanted to be clean as I hadn’t showered in a few days and the work on our bathroom is still ongoing so I may not be able to tomorrow or the next day. I fought back tears as I tried to get up and out of the bath by myself. Waited for the water to drain. Waited longer. Waited for some energy to come from somewhere. I screwed my face up as my husband dried my hair for me, willing myself to not to cry or feel down about this situation – never wanting him to be my carer. Reminding myself that there is still immense good amongst the rubble of my previous life.
I have a husband who will turn finding my hairbrush into a ‘Crystal Maze’ type challenge. Any tears tend to turn out to be tears of laughter. He will fetch and carry for me, as my mum did before him when I lived at home. And ultimately, after 8 long years it is my own personality & perspective, who I am inside, that allows me to, each time, come back to seeing those unavoidable silver linings. I am so lucky. And I am clean!
Written 9th October 2018