07 May

It’s not easy being me. I’m the proverbial swan, you know calm and serene on the outside, and crazily paddling underneath the water. Sometimes I want to let you in on the world underneath, but I want to keep some friends!! Imagine if I told the truth, to the ‘How are you?’ question. Firstly, how long have you got, Secondly, nobody I know wants that much detail on a regular basis. Imagine, you’re telling them all about it, and they’ve backed away, called an uber, and got the hell out of there, breathing a sigh of relief. I mean it’s too much for me sometimes, much less them. I have to make really long lists; I’ve become the list girl. My lists have lists, lists for symptoms, medicine, hospital appointments, allergies, etc My illness needs a PA of its own it’s so dam busy. So, what is the equivalent of ‘Good thanks’ when you have an invisible illness, answers please on a postcard, to new communication techniques, Liberty Jones, the world. I’d love to know.

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