Tiny victories

When getting out the house is a big deal

(Diary entry: October 2022)

I’ve had a bad week. I’m in pain and feeling so anxious I’m talking to myself but not on purpose. I rhythmically bang my feet on the floor, tap my fingers. I live within the parameters of a panic attack.

Until yesterday, I hadn’t left the house in seven weeks. The sun was shining, when my partner said he was taking our son to the beach, did I want to come? Yes.  They know how hard it is for me to move, to get dressed. I know what I have to do to get out the house. It’s on the boundary of my capabilities. My clothes stick to my skin. I’m roasting hot and shivering. I must be strong now. I repeat a count to four, counsel and reassure. I rip my top off, stained red and wet, dry skin confetti. Breathe. Breathe. Breathing, I put on a new top, a shirt, loose trousers.

I shout down “I can’t go out looking like this, you both go”. As soon as they leave, I know I’ll feel worse if I stay here, so I phone and say, “I’m coming, walk slow and I’ll catch you up”. I put on a floppy hat as sun protection, then big sunglasses, zip my coat up to my chin. I only expose a couple of inches of my face, even that is enough to betray me.

I lock the front door, walk down the street and meet the boys. Pain pulses in every part of my body. We walk down the hill towards the sea then along the prom.  The wind pushes waves, sun hits the water in a blinding gleam. I hold my hat, walk slowly and take it all in. Look out to the islands, so close today. Small children throw stones into the water, delighted.

I want to be here but I’m crawling out of myself in shame, horror. I attract stares and the effort of pretending wears me out.

But I am here. This is a tiny victory. I am no more and no less than a human. I am entitled to exist. I am entitled to exist.

Thank you for reading and being with me here.

This is a journey for me of sharing my writing about living with chronic illness for the past eleven years. I want to explore where we can find joy, gratitude, beauty and hope, even in the most difficult places.

I’d love for this newsletter to develop into a conversation - I welcome you to comment below if you want to share your own experiences or thoughts.

Sending lots of love and best wishes,

Lorena xxx