This Lupus Life

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

Small Sacrifices

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I chose this title after my favourite novel from my adolescent years. The novel by Beverley MacDonald as a dark story about an Australian teenage boy on holiday with his dysfunctional family. To this day I still cannot say why such a dark book held such fascination for me, but as an adult the relevance of sacrifice still holds a lot of meaning for me.

You make choices every day of your life but I wonder with how much weight the average adult considers their choices. I would like to put a lot of weight on the importance of making the correct choices in life, as it is something I must do with every choice I make. The decision of how many hot drinks I have each day, how much caffeine, sugar and milk is found in each of these drinks, is as important to me as the total discount others expect in their ‘End of Year’ sales.

Consider this:

I wake at 5am having not slept well the night before. I am tired so I have a coffee, one sugar, a little milk. The milk makes me sick if my stomach is empty so I have a piece of fruit. I don’t have much of an appetite and no way to work off excess energy and food, so this is my main morning meal until lunch so there must be 2 pieces of food. I won’t be eating again for 6 hours so I need to have my medicines for the day so there is a large mount of water as well. I don’t have uni until 9:30, but if I watch TV or look at a computer screen i will ruin  my vision for the day. I can’t read yet as it will give me a migraine. If I stay in bed I may fall asleep and miss uni. So I listen to soft instrumental jazz music and watch my cat. As long as I sit in the correct position on the correct furniture so as to not put my spine out, inflame my arthritic joints, irritate my costochronodritis or just simply put my posture out.

This is just the first hour of my day but you can imagine my extensive decision making process from here until 9pm when I go to bed to attempt recovering my 8+ hours sleep.

I hope you can appreciate what I sacrifice during the day from this little insight into what I can and cannot o in a few hours.

I can appreciate, from my brief periods of relapse, how taxing the average person experiences aches and tiredness after a few heavy days working in the garden or a touring holiday in a new location.

I have lost many friends on my journey, through no fault on their part and certainly no blame comes from me.

You know recently I saw a chance at an incredible relationship slip from my grasp (another casualty of my disease).

I moved way from my first desired line of work, Interior Design, after the pressure of my illness overcame my ability to relate to people on a cosmetic level.

I hold on with the last strength in my yoga-strong arms to my yoga abilities and hope to everything good in life that my karma will bring me a second chance to resurrect both my yoga and my paddle boarding.

I will sacrifice some things I know in the coming years, but I won’t sacrifice my yoga, paddleboard, teaching and I will hold on a lot fiercer to my next real chance at love. I guess I just need to distance myself fro the last loss.

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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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