This Lupus Life

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


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I have been at home for a week. The first day I dressed in my best hobo-chic. Bow joked I had made my least effort to merge bed clothes and day clothes in the most unflattering way imaginable.
He wasn’t wrong.
We both have our first assignment for a shared unit due in a fortnight and so Tuesday sat down together to plan, research and structure the task. By 3pm I was exhausted. Gallowe came over after his shift, we ate a very late dinner and went to bed.
Wednesday was my birthday. There were minimal gifts. Breakfast was cooked. Uni started at 10:30 so Gallowe left for work and Bow took me to uni.
My saviour from the previous week, Allison, and the wonderful tutor Laura were welcoming, as was the entire class. Allison and her friends have taken me under their wing, which has humbled me further. I’m a solo flyer at uni, I find it hard to recognize people of similar interest and so make few friends in my studies. It truly was a blessed day. Bow made two Jamie Oliver recipes for dinner and B-Dizzle came to join us.
Thursday I did little. Had a massage and went to afternoon work shift. It exhausted me!
Friday was much the sane, less the massage but more emphasis on work. I didn’t tire as much and I honestly felt like I’d make it through my Saturday shift.
I only just survived Saturday. 5 hours with the students (only skeleton attendance) a small nap and chat in the afternoon with T-Dog before pitting on my Saturday night best for a surprise birthday dinner treat with Gallowe.


Dinner at Jamie’s [Olivers] Kitchen!
Best. Meal. Of. My. Life.
A brief cocktail at Helvetica’s after found us home by 10:30 and me in tears from exhaustion. And pain from the brain swelling.
Worth it.
Late on Sunday I met the Craft Club in Leederville at the new cafe Babylon (LOVE), we meandered to brunch at Oxford Cafe then found ourselves whiling away the afternoon at the Polka Dot Vintage Market.


Needless to say I overdid it again and could barely stand up or walk straight by 4pm when Gallowe picked me up to take me home.
Ma and Pa were home not long after us and we went for a quiet dinner at The Picked Fig in South Fremantle, a birthday tradition.
Dinner is important as it was the discussion and negotiation of Mondays physical and neurological appointments. What would be discussed, who would attend, times, important details and all such topics were clarified.
Ok so perhaps I just used this to brag.
But I want you to know that my life is good.
I have made the most of it and have been enjoying myself. I have had so much support and positivity lately and I want you to know it isn’t unnoticed. It isn’t unappreciated.
It is humbling. And heartwarming. And inspiring.
Thank you for helping make these last few weeks special inspite of life.


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.

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