The first moments of consciousness spark in my brain, searing across the peaceful, silent darkness of oblivion. No! I don't want to wake up! I try to sink back down, down into precious, unfeeling sleep. Relentlessly, my brain cascades itself awake, pulling me higher and higher, towards blinding internal illumination behind closed eyes. The pain swirls over and around and through me, like a tempest at sea. I think that if only I could break free, I could ride out that storm on the surface, rolling with it. However, I am chained; chained to the depths, my body a marker buoy in the maelstrom of pain. I must lie here, buffeted by overwhelming sensations that crash my waking thoughts. My skin is on fire, my joints crushed by their very existence. From experience, I trust my brain will dampen down the input, will mute the silent screams, but I also know that for those with the most severe ME, this is how they will feel all day and every day.
My husband hears me move; he appears with a glass of water to help me swallow my painkillers and assorted hopeful supplements - my first action of every day. He speaks to me, but I can only reply with 'mm'. He hasn't realised that today is starting so badly. He pulls open the curtains, heavily lined to keep out even the tiniest shafts of light that blaze at the edges of the blackout blind. As I turn my face away from the window, I know that I am lucky - my eyes will adjust to the light of day, but I think of those who must stay in darkness. I can feel him looking at me; assessing. He curls up behind me, laying a hand on the back of my neck - for me, a soothing gesture I can use to focus my brain and help to dissipate the pain, while knowing that for many that gentle touch would bring agony.
I lie there, breathing.The storm abates; I will survive today.