This Lupus Life

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

My amends


I have finished my first semester of university for the year. This means that half of the year is over! A big sigh of relief has oozed out of every pore of my being. I have slept for days, treated myself to a weekend of food, fun and Fremantle. Now I am trying to work out what parts of my life have been scattered so I can pick them up and take off on my month break from study. I think two of my friends have given birth. I know there is a quilt to be completed, two paints to start and I’m two years overdue to return home and visit my hometown and childhood roots. 


Yet my big concern is actually to amend some of the site. I want to express how honestly I try to communicate about my health. I certainly don’t like the idea I have provided misleading or offensive information, misquoted documents or lacked to share sources of influence and information for others. I mean, yes I like to add drama to my writings and tend to enhance my experiences with colourful language. But I do not intentionally include erroneous or false information.

I state this for a reason, which I am approaching.

On Friday June 12 in the middle of the afternoon I had a seizure. I was visiting my good friends and incredibly supportive ‘most inspiring couple of the year’ (my words) Matty and Amy, or Mamy as I call them. We were browsing and meandering along the coffee strip in the centre of town (Fremantle), as you do, when my heart rate started to increase. I felt light-headed and breathless. We walked out of a shop and my feelings intensified. Amy could see what was happening and took my elbow with her arm. She walked me slowly as I lost sensation of the left side of my head and body. When Matty’s voice came from the left side of me I kept starting with surprise, not realising he, or anything else was there.

There is nothing that scares me as much when I am fully cognitively functioning and aware of the loss of the left side of my brain. Nothing except for when I cannot speak during one of these episodes. I could walk and my speech wasn’t so terrible. But my sight, function and awareness on the left had disappeared. The only thing missing was the slackness of muscles visible to those other than myself.

This is the price of Cerebral Vasculitis (CV). This is the price of inflammation within the brain that prevents passage of fluid through the brain vessels.

When I have spoken about this illness in the past I have related about these events differently. Now I am older, wiser and have the experience. Whilst this is a blessing in so many respects, it has also lead me to a discovery which is the cause of my dire need to clarify and make amends. As I had understood and believed earlier, the illness that I was suffering from was Cerebral Vasculitis. The large and recurring effect of this disease on my health, I had taken to understand, was small and minor stroke-style episodes. These episodes I have referred to as Strokes, Transient Ischemic Attacks (TIA) and Partial Strokes.

I wish now to clarify that this information is not true. I’m sorry. I did not mean to lie, provide false information or mislead. I do intend to revisit every post I have made since June 2013 when the incidences began to rectify my mistakes in this regard. The truth is that the events were simply the Partial Focal Seizures (PFS) I have spoken about on occasions. This in turn leads to my second apology in which I must further make the amendment of every post in which I thought I had had a seizure. It have since discovered that what I thought were seizures were actually just the residual impact of the brain damage from the masses caused by the Vasculitis.

I had misunderstood these two vital events because, when I experienced the event in question, it felt to me like a stroke. My loss of function and brain interference seemed like a stroke. When I experienced a minor event, they didn’t last as long but still took a significant role in my present functioning and threw my thinking completely askew.

So to recap:

What I had thought were stroke-style events were actually Partial Focal Seizures caused by the Vasculitis masses placing pressure on my cerebrum.

What I had thought were seizures were simply bad blood circulation in the previously CV damaged areas of my brain.

I have more to relate to you about the last few weeks, however I do not want this message to be confused in any way. Once again, I apologise for providing the incorrect information and I hope you will understand. I did not do it with the intention to mislead, I honestly thought myself that this is what was happening to me.


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.

5 thoughts on “My amends

  1. Hi Chevron,I fully understand what you are going through as I have Lupus,not the scarring on the face but most
    My thought & Prayers are with you as I am going through this horrible disease myself,had it now for 19 years,loads of medication & rest seems to Kinda help!!! Sadly I am not able to work,which I would love to ,as I miss being out there with the Public & Contrbuting to Life,Take Care Love & God Bless you,Pat xx

    Liked by 1 person

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