This Lupus Life

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

My New Team


I had a big shock returning home after my stay in hospital and to explain exactly why I have to take you back a bit. I had not really allowed any time to unwind since I had begun studying. During the year I had done what was typical of me when I am left to my own devices: I used all my time and energy to accomplish any thing I could think of and in doing so ran myself near dry.

Yes, brother. I wore myself out a teeny bit too much. Such a large blessing of this year is that I had learned how to rest, to take time to step back before I exceeded. I acquired also through the year the wisdom to let go of concern for what others did, how they lived and what they thought of me.These skills did not hold me back from building up a bank of weariness within me as I tried to earn my keep whilst paving a way through my first semester.

Yes, I did not drink the well dry this is true. But I was in need of a good rain.

It wasn’t until I was sent to hospital and made to sit in bed and rest inactively for a time that I realised I was exhausted. My mind and body slowly unwound. I was startled to find I could sleep and rest on almost anything. The thin mattress was bearable on the ward with semi-dangerous rehabilitating Dementia patients and the 4-hourly nurse visits for neuro and standard obs weren’t overly stressful. I felt much like I did on the last legs of the Europe trip, minus the infection and congestion issues.

When I returned home I was still much in need of rest. It took me a few days to become comfortable with the idea of sitting back and watching my family do epic gardening, tree-removal and house work, yet when I got there I found I could enjoy it. As well as find small jobs that required little effort on my part, like filing my assignments. In the late afternoon I would wade in to the pool, when the sun wasn’t so sharp and shade covered the shallow end. As I have mentioned previously, the preds kept me from feeling the heat, but if the temperature was high I’d sunscreen up and go out briefly in the morning also. I was in a state of dazed hunger during this time and everyone was keeping an eye on me. I tried to avoid the kitchen, my phone, the internet and television. Reading and viewing were out of the question, as was heavy conversation so I just enjoying thinking, nature and solitude, or listening to everyone else. I withdrew but it was such a peaceful and pleasant time. On some level I did start to question what my future would look like, and how long summer would drag if things didn’t improve.

A few days after Christmas a letter arrived in the mail indicating a time and date for an appointment at Royal Perth Hospital (RPH) Neurological Clinic. This is to be my diagnostic center where I would continue on my search for answers and in a week hence I was to meet the people who would hopefully help me to find them. When the date came my folks came with me in to the city. It was my first time at RPH so I was excited to try to find my way around again, as well as meet some new people and see some familiar faces.

Connor, bless him, is the head of my head and had spent time covering the little history we had from hospital with the rest of the doctors. There was one lady and one gentleman, a Neurologist and an Immunologist both called Leo. I was pleased to have a doctor who I was familiar what was going on and had seen the tests and films, so had an idea of where to go from there. Connor had booked my next test, a PET scan, and had some more blood tests for me to have done.

The Leo’s were more interested in conferring about my Lupus and finding out where it had come from, what my hereditary history looked like on all sides of my family. Lupus is a genetic disorder so it must have come from somewhere. Also what other Lupus-induced illnesses has anyone in my family suffered from. Since no one in my family has cropped up, to my knowledge with Lupus or Lupus-induced illnesses we couldn’t answer this question. Connor asked me how I had been feeling lately and I honestly didn’t have an answer because I had just been sitting in a chair doing nothing. I couldn’t make any comparisons since I was not living life as I would know it. I was very unhelpful. It really wasn’t a great first impression that I or my parents made on these specialists but such is life. That is how I met The New Team (TNT).


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.

17 thoughts on “My New Team

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