This Lupus Life

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

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Dylan Moran: A Surprise Special

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Music and books are ‘my thing’. It may be my upbringing, my personality or some weird combination of past experiences but I have never been overly attracted to what is prominent in ‘popular culture’. Celebrities, games, films and television, clothing trends,music; none of this has held much in the way of long-term appeal. What I did engage in was mostly part of some identified necessity for me to fit into the small world I spent the formative years of my life in.

The small link I have to television was the desire to watch comedy shows or ‘historical fictions’. Comedy mainly was where it was at. Preferably Australian or British. Typically and unintentionally the shows were produced by small studios, offcuts of BBC or ABC (Australian Broadcasting Corporation). Some of my stand outs included Monty Python, Lano & Woodley, Black Books, Black Adder, Absolutely Fabulous and The Two Ronnie’s. I challenge you to try to explain to me I was too young to understand these shows, or even remember them. I challenge you to find someone who has watched them as much, or as often as I have either!

Finally The Big Moment came on Friday night. We had had our tickets for MONTHS and EACH DAY  had been an excruciating wait! Thursday I had been feeling a distracting sore throat and had been sucking on lozenges like a champion. By Friday morning the congestion had begun to build in my throat and nose. Looked like I’d be smuggling a guest in to the show with me! I spent the entire day sitting under a blanket in my pajamas watching The IT Crowd ‘resting up’ for The Big Night.

I decided to get ready early so I could do it slowly and take my time. No stress.

Or so I thought.

I had pulled on my stockings and dress, my hair and makeup were done. I was sitting at my computer preparing the tickets for the show when the feeling came over me. The feeling that I had just woken up and was simultaneously blacking out from low blood pressure. My vision went blurry, duplicating rapidly and coming in and out of focus with neon stars scattered throughout. I recognised the symptoms and thought I should move to a more stable seat (my desk chair has no arms and swivels easily).

As I stood up to move to the couch it became apparent I could not use my leg and my balance was horrifically askew. The farther I advanced the more obvious my sudden ineptness was. This was largely because I’d attempted to step onto my left foot and I fell down. It hurt, as I had no awareness or thought of moving my arm or using it to bolster my fall. Have you ever stood in one spot and looked up, turning really fast with your arms out, and then stopped and tried to jump over a straight line on the ground? If you turn fast enough and long enough your arms start to become numb and your body starts to feel tingly. It’s no wonder why I fell.

I knew I was doing something. I knew I had plans and an agenda. Regardless of what was happening I felt I needed to get to my bed and my phone (on my bed) and check out how serious the situation was. That was a painful and embarrassing experience. I kept falling over, bumping into things and losing my direction. Dragging my foot up the stairs, walking into tables and tripping over floor mats, I finally made my way to the bed. Have you ever had a little too much alcohol, or taken a medication that has made you drowsy? Have you ever been out late in a busy city and seen that girl or boy stumbling along after their friends, perhaps supported by them, as they slur their words whilst ranting about some great epiphany they are in the midst of?

I sat on my bed and ran through my stroke observations, checking to make sure I had not had a stroke. I hadn’t, but this was as close to the episode that I had last July that I have ever had. I recall the doctors only last week assuring me that I probably didn’t have any masses, that it was likely just stress. I want a retry. I think I will contact Connor and ask for an MRI. The whole episode lasted over 30 minutes, but the lethargy of the episode stayed with me all evening.

Not to be put off, you know how tenacious and stubborn I can get, I pulled my walking stick out of the cupboard and replanned my shoe selection. I contacted The Girls, to let them know and help with the tickets. I left home early since I predicted it would taken me longer to get there. It did. My snuffly nose didn’t hold me back much in the cold, but gee was it wet and windy!

Waiting in the foyer for the show to start I bumped in to my great friends Mamy. They stayed with me until Fanny and Jadus showed up with our tickets. The show itself was incredible. Dylan Moran is hilarious, one of my most favourite people in the world. Incredibly intelligent and just a joy to see. The night and show was enjoyable, even given how rough my week had been and how the day had treated me.

In all I think the show came at exactly the right time. I think some fortunate part of the universe somehow ensured I would get a break when I needed it most. I hope this is ‘the most’.

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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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