Tonight I am staying at a different house. I’m sharing a bed with Ellie. It’s 1am and for the last 2 hours, I have been watching her sleep.
Sleep should be her sanctuary. It’s that crucial time for your mind and body to restore itself. A 4 year old should be having dreams of rainbows and magic. This 4 year old has been in a constant battle with herself for the past few hours. She isn’t aware of it though as she is in some kind of restless slumber.
Intense itching with no realisation of the damage those little nails are doing to her skin. First it was her ankle, then her leg,then her face. Quiet for a moment, covers off (too hot) scratch and cough and cough and scratch. Lay sideways on the bed, trousers hitched up, scratch legs. Rub back on the wall. Tummy scratch, duvet on (cold) coughing fit, Itch, scratch, repeat. This is with a “sedative” antihistamine. I’ve applied top up emollient to her. I’m exhausted just watching her, no wonder she wakes up exhausted.
Night times can seem never ending . There aren’t the distractions that are around during the day. Sometimes it may just take a re-application of emollient. Other times we can be sitting up together downstairs all night, Windows open (even in winter!) doing things to distract from the pain and self damage.
I can only liken it to a mosquito bite, I know how irritated and sore just one can be. Imagining hundreds of those all over the largest organ of your body is more than I could bear. Yet here she is, living it.
If I could have 1 wish for my little lady right now it would be to have a peaceful, uneventful 12 hours of refreshing, comfortable sleep.