This Lupus Life

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

Many strong steroidal emotions

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I’m now on a break between university semesters and I find myself once again torn inside. The adult part of me that grew up in the barren and isolated regional country town combats with the wiser nurturing nature withing me. On one hand I still feel guilt when I sleep past 8am each morning. When it is a struggle to dress and leave the house by lunch the whispering voice in my head is a constant nag on my consciousness. Yet another six week break in which I should be finishing projects, taking on a few extra shifts somewhere and just filling each and every day with busy-ness. I’ve been in the routine for two weeks already and I can confirm not much has happened.
Yet have I caught up on much needed sleep?
Have I found a resonance of tranquility in my daily practice?
With impending exams and the threat of disruption with skin irritation I begged my GP Evs for a solid solution. Yes, I was once more loaded into the shuttle of corticosteroids. Yes, they work.
But they were not an answer, just a quick sanction for my stressful exam period. I cannot express the gratitude I feel for my doctors that they understand and appreciate my need for help and are equally respectful and compassionate towards me. The steroids worked. I returned last Thursday for my Implanon insertion and Evs was adamant in insisting it was time to come down.
Quid pro quo Clarice.
The steroids weren’t a fix, they were temporary measure for me to finish uni. I needed to he almost off them by July 6 when I return to RPH to see my neurology team. They will need to do more tests and so my blood needs to be clean.
I have to admit I’m filling with dire fear but I trust this is needed and so

I am trying not to think too hard about it. Even as I drop down, the extent of my unoccupied time each day leaves me acutely aware of the effects of the medication on my body. I look in the mirror and see nothing inspiring. I take daily walks in the sun with my hair done nicely yet feel this twisting in my chest and an echoing boredness in my head. I listen to my more upbeat music and all I feel is a further distancing from my liveliness. Gallowe and I spent a wonderful weekend together but all I feel was an irrational need to niggle and nag at him. The worse I felt the more hugs and forced smiles he got but I can’t help wondering what impression I was giving him. I go to bed at 9pm and read my books until 2am, waiting for my inner light to dim and switch off.
I don’t want the itch to come back but I don’t want to feel like this. Every attempt I may to satisfy my urges, fulfill creative longings, complete long ignored chores and reorganize the chaos of my designs just feels hollow and dull. Do you think you understand or am I just babbling.

This is not me.

This is the depression.

This is the steroids.

This is the life I’m trying to work with these days.


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.

One thought on “Many strong steroidal emotions

  1. Pingback: Rituximab – First Infusion, First Attempt | This Lupus Life

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