This Lupus Life

I am the dancer and Lupus is my music. I want to make it look beautiful

Feelings, nothing more than feelings


I dont know what to say but i know i should say something so here i will jyst share with you the white nouse that is the my (lack of) depth of awareness.
Typically when I start on a course of prednisolone (50mg at present) it occupies the bulk of my mind and I become overwhelmed with the extreme state of hunger. I buzz with energy, bounce of walls and try to go jogging or gardening daily. I start new art projects and talk at hyperspeed with everyone about everything. Yet now I barely feel like im on the drug and honestly most days forget it is in me.
I’m numb.
Hunger is of no consequence here.
The only time the energy peaks is a vague sense of ‘not tired’ at 2am when I still can’t completely turn my mind off. I’m losing weight, hate when people attempt to engage me in conversation and feel sluggish at the idea of focusing on a TV show for 20 minutes, let along an hour.
My humbled sense of gratitude is still overwhelming from the kindness and generosity of others during my hospitalization. I know people are good I was fortunate, but that in many situations when someone is in desperate need a passer by will help. I just haven’t been in such a situation before.
I feel that my house mate Bow was far and beyond a great help. He was understanding at my folks appearing and staying for so long when I wasn’t there. He came to hospital for a visit one day for hours, and it was a great comfort. I wanted to show him my appreciation.
So I bought a 3kg rainbow trout for us to fiddle with new recipes to cook from our massing specialist cookbook shelf.
The first meal was awesome. Trout in lemon & thyme butter. Bow has decided its his new favourite fish.


I see my girls very regularly now. I am very open and candid with them. They know exactly how I feel and what I’m thinking. I tell them so they know and they can keep an eye on me. I don’t trust myself to make good decisions any more. They can keep their eyes peeled in case I start to behave in little ways that may not be too concerning in isolation, but are not desirable in me.
Gallowe us good as always. I don’t know what he’s thinking but he has started to come to my appointments.
My room is clean. My stuff is organised. My books are interesting and my diet is nice. I study, eat, read. I interact, work, create.
I exist.
Anything more than this is not a thought I entertain. I don’t think I have the capacity to think. I suppose this is my low point.


Author: Chevron Spots

I am in my mid twenties and fighting my battles to discover who I am and where I fit in to this zany, beautiful world. I was diagnosed with Lupus in in 2008. This takes up most of my focus, as I want to share the experience of trying to live with and rise above chronic invisible illness, so to speak. I would like to stress very much the information regarding medications, medical procedures and illnesses are discussed from my point of view, and with my understanding, colloquialisms and metaphors. I do not attempt to be legally and precisely accurate for the general population, rather I try to be emotionally and descriptively true to my experiences. I hope I can help in understanding others with chronic illness by providing one more personal recount of just how spontaneous and difficult these lives really are. One day I hope to visit every continent, climb some pretty high mountains, sleep in an ice cavern, marry a wonderfully understanding man, have children and teach more children. Mostly, I just want a simple life, you know the house with a husband and kids. Oh, and no pain.

3 thoughts on “Feelings, nothing more than feelings

  1. Pingback: Brain Surgery | This Lupus Life

  2. Pingback: That awkward feeling between well and unwell | This Lupus Life

  3. Pingback: My Balancing Act | This Lupus Life

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