This Lupus Life

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

I wonder

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The song ‘When We Were Younger’ by Soja had resonated with me profoundly since the first time I heard it. The words are so strikingly similar to my own musings and it depends on my mood whether I am transported to a tropical beach or deep within my own melancholic longings for what could have been.

I often listen to Soja when searching for answers and inspiration. The lyrics of this song are particularly poignant to me and I’ve basically had it on repeat for the past few days. I have been struggling with the soft lulls and tranquility that comes from living what I consider to be ‘a normal persons life’.

I’m not normal. This isn’t a sad fact and you shouldn’t feel guilt or regret at my admission. It is a simple matter of fact that I have been to more medical specialists than a great deal of people. I have likely spent as much time in waiting rooms at doctor surgeries and pathologists than I think I have in my eighteen months of university lectures and tutorials. I understand medical speak without a degree or dictionary. I know my medical and patient numbers and codes better than my parents phone numbers. I’m at peace with all of this.

The last few years have been big. I have felt it was building to a crescendo. Make or break. Either the final catastrophe was on its way or else lupus was giving me one almighty send off before I was left at peace.

I’ve been through this once before so I will not be easily deterred or fooled. I can never really drop my guard now my neurology is involved. I’m fortunate that I have been through this kind of situation before. Fortunate that I can identify the feeling of it, the way it seeps in to my bones, the way it sends cold water through my veins.

This situation is a ‘calm before the storm’ style event. Or at least that is how it feels. There is an eeriness to it. An unnatural fog awash through the streets of my life. A gloom settles over my heart that never reaches my mind to affect it. Like an insincere smile that never truly hides the cold contempt of the eyes. The feeling is without any emotional attachment and it is for this reason my consciousness is so ill-at-ease. My mood is that of someone who has been hurt or has lost and it is similar to a genuine depression. Whether it becomes a depression depends on how I progress from this point.

In my mind I know I have no reason to be feeling this way. I am loved and I love. I work enough to keep me busy but not enough to make me sick. I see my friends, shows, dine out and walk along the beach and through the park. I have money, shelter, food and things to occupy my mind in a range of ways. If I need to talk about how I feel I have that too. To be honestly last week I felt perfectly blissful with my life as it currently stands. I have not had to worry about my ‘Lupus Health’ in over three months now. This is quite a statement given how hectic everything has been for me recently!

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This darkness that dwells where I dwell, shares my body with me, holds my joy at bay is a fiend that I know. I can tell you the woeful reason behind its existence and to some this may not be an unfamiliar sensation. To those of you who not experienced this yourself, please try to understand and appreciate the gravity without passing (too much) judgement.

See, I am basically in withdrawal from ill health. I have structured my life around the presumption that each day I will be wading through the technicalities present with Cerebral Vasculitis. I have opened up my life, adjusted the way I present myself to others and how I go about each day completely on the presumption that I may have a seizure or encounter other issues caused by or due to the masses within my brain and how they impose on my brain functionality.

When the foundation of your life is built on a significant health impairment and then suddenly, or not so suddenly, your health recovers a space remains. Like all spaces, or losses, it is noticeable. It can be felt. I notice it and I am feeling it now.

Please don’t misunderstand me. I do not miss my ill health or long for it to return. I did not revel in my ailment and enjoy the extra attention, circumstances or care it brought me. That is not what I am saying.

What I am trying to say is I am well now but the extra allowances that needed to be made to get about in my life throughout the past two years have created a void. This void is the present cause for my hollow feelings and restlessness. I know how to watch this incase it spirals down deeper. For now I can confirm for all who may wonder I have already spoken to someone and I am taking ‘preventative steps’. I will focus on my outdoor activities, mental stimulus and the ones who care for me  until I can update you further.

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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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