I am overdue for communicating here and at this time of year I am sure it is no wonder why, what with Christmas. Our family has undergone some great upheavals in the last year. Many have been personal and not quite interconnected enough to clearly suggest how we have ended up where we are. For me they are obvious, but I am in a constant state of reflection and so often reflect and wonder why we make certain choices and act in the ways we do. I will not speak of others. It is not my place. It is not relevant either. I will cover only myself and to be frank there is more than enough content there alone to give you an idea of where my life is at.

My main focus for the last weeks and months has been largely internal worries and egocentric issues. It has been greatly on my mind that I was entering a long period of inactivity. My family and friends were all travelling either down the south-western coast of Australia or out of the country completely. Practically all of them had expectations of full-time working hours in the times they were not on holidays. My work is tied in with the school calendar so I would be on a tediously inactive break in that respect also. With my housemate taking up a seasonal position that would keep him working for up to 12 hours a day there was no doubt I would be quite in a world of my own and in need of finding my own devices to occupy myself with.

Allow me to clarify very strongly a fact most people never really seem to consider in its entirety: when you are an adult, a holiday is appealing. The illusion of a break from the stress and routine of life is appealing. Yet a person who studies full-time may spend approximately half of their life studying in another physical environment. Study relies largely on reading, viewing, listening and writing, sitting around, considering, processing, copying, relating and reflecting on data and information from texts and media sources. It is like a job, a self-managed position. As well as this study, you spend a large amount of time filling time with…something else. Work, chores, socialising, appointments, general family requirements.

Imagine the life of a chronically unwell person, what they are able to do in their spare time. There is not likely to be as much, if any, physical activity. Less capacity for activities in certain climates or at certain times of the day. Random, spontaneous influences will also hold them back, not to mention a need to include a routine of treatments that can often interfere with plans. Employment can be difficult, so finances may also restrict lifestyle.

Imagine, if you will, what you would do if you had three and a half months free this summer? I think I would go to the beach a lot, even to snorkel a bit. Perhaps I would try to camp down in Dunsborough or apply for work at a children’s summer camp? I would love to take my stand up paddleboard on the river, and some beach fishing. There would definitely be a visit to my friends in Albany, as well as staying with my parents in Lake Grace. Not to mention learn how to Scuba Dive. If I had the money I would even have gone with my friend to London for Christmas.

Not this spoonie though, no way Jóse. I am on a lower dose of Prednisolone and my body is acclimatising. The fatigue is returning, pain is edging back in and confusing addles my brain. When I walk my right hip hurts, dragging my body out of bed is getting harder and harder and the cool weather of this season doesn’t help.  The doctors have not approved me for driver status as yet and I am ever so tired by 5pm that going out for dinner is beyond the limits of thought. So there is no travel, no parties and no activity for me. Having spent so much time this year sitting around reading, listening, writing and viewing I am loathe to watch TV, films or Netflix, listen to my music and read my books or complete my crossword puzzle books. Don’t even get me started on editing my book.

But I am doing all of these things. I gravitate from my study desk, to the sofa and back again. I type with my new rabbit Turvy, pound out on the keyboard the sentences that make up the chapters of my book. New albums and old run through the speakers in the house intermittently with episodes of some documentary I have found to occupy myself with at regular intervals.

I think I have found a balance. The fact of the coolness of this Summer is a gift as it means I can get outside more. But it does nothing to stop the feeling of boredom I feel with the gaping break of two more months of this before me before I can once more start my life and get out into the world to do something. It wasn’t until this holiday that I have really begun to see that my life has become entirely about the brain lesions and university and when both of those things are gone I do not know who I am anymore. It has just been too long.

I never thought I would be the person defined by Lupus but somehow that is what has happened. I will change this of course, but will that change be as much Lupus – driven as the last one was? I do not know.

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