This Lupus Life

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

What can I do?


2014-05-18 14.01.18

I am now in one of the two most important fortnights of the year. Mid-year examinations. They are the culmination of my first semester of study and the mark of how much I learned in my first three units. One unit, the Children’s Theatre unit doesn’t have exams as the performance was the big assessment, so there are only two for me. I am struggling with study, and with my reflective essay on my performance. I just cannot focus or concentrate my mind on one thing so wholly in the way I need to to write 1500 words of analysis.

Apart from my university assessments I still have to cope with my body in my new life. The sprain is no longer swollen half as much and the bruise is on is way out. I am keeping my vegetable intake up and drinking much water. I have a cold coming on and am taking all the garlic, chili and lemon to help my body overcome it, as well as over-the-counter pharmacy aids. The migraines have come back since I stopped the migraine treatment Propanolol, so it was good to know that had been working regardless of the skin reaction I had to it.

My main issue now is finding out how to get around the places in my life without a car. I have had my license revoked until I have gone 6 months without a seizure. I can no longer drive down to the store, so  have to plan what I need each day and if I can fit it in my backpack without overloading myself and irritating the costochronodritis (inflamed cartilage in my spine and rib cage). I could not ride my bike with my ankle swollen so was relying on others to get the things I wanted, or else just doing without. My university is only 3 kilometers down the road and I live by a bus stop so now I am just working out the stop timetable. There are plenty of stairs on campus but it is very handy for wheelchairs so taking the long way via ramps in a campus dedicated to wildlife preservation and eco-biology is actually wonderful in a way.

In a windy city such as ours I have learned the hard way the perils of riding places after 4 pm. With weight on my back, a big coat and scarf (its getting to the coldest part of winter and I’m under the weather), added to the rains, my swollen ankle and my partial disorientation which has not disappeared since the episode, undertaking any expedition outside for me at the moment can be quite a risk. I do foresee a return to my days of solitude.

On the weekend I had to withdraw my assistance from a wonderful family of close friends whom I have been helping with school work and yoga. On Monday I resigned from my part-time work. On Tuesday I officially closed down my yoga business and resigned from my volunteering roles with the Cat Haven, as a carer, and The Smith Family.  My days of freedom have officially been put on hold for at least 6 months. I will find new ways to help others. I will find new casual sporadic work opportunities in my area. My friends all know and are prepared to support me and visit regularly. Polly is beside herself with joy at all the time I have been spending with her.

I am definitely not in remission anymore and it scares me how my world seems to take a new hit as doors are closed every few months by yet another failure of my bodily functions. I will persevere. I am so grateful for my friends and family and so pleased I am studying currently. My time at university has been the most enjoyable year I can ever remember and I’m looking forward to the next three, trusting my body will hold out that long.

wpid-imag1370.jpg2014-06-08 09.43.53



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.

2 thoughts on “What can I do?

  1. Pingback: Exposed | Nitya Nata

  2. Pingback: My Mass(ive) Year | This Lupus Life

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