This Lupus Life

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

Prioritising

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I’m starting to fall behind in the tasks that are small and have been calling my attention for weeks. Things such as acknowledging my now dual nominations for Inspiring Blogger, responding to personal messages from friends, updating friends and family members of my recent illnesses and cleaning the house and yard. I am falling behind as I am still working through my examinations for university and I am having a lot of trouble dividing my attention between two lines of thought at the same time.

It is only recently that I have felt my focus is hard to draw to one topic for an extended period of time. My attention wavers and if something, such as communicating with the people in my life, becomes a priority in my mind then I cannot concentrate on anything else until I have completely fulfilled the task. Often tasks are also followed with a period of empty-minded drifting in which all I can do is cuddle up under a blanket by the fire with my cat for a few hours. At this point even the TV is too much for me. Most don’t understand or believe the extent to which my one-track focus is limited but that is fine, I do not need validation.

At university during the semester I took steps to enlist myself as a student with disabilities and had documents from my doctors to certify the type and extent of my disabilities. Some weeks it seemed silly, but the nature of SLE lends to sporadic spontaneous flares of various degrees and entering in to exams I was pleased I had done so. My exam restraints are somewhat less limited due to my equity plan (EQAL) and my tutors were aware of the potential interruptions in regards to my study schedule. The migraine and medication sagas knocked my grade average down 20-30% this semester and it will seem silly to some maybe but I am saddened that the best I can hope for in all the units is around the 75% if I ace my exams.

For me however, simply passing is the target and this I feel I may be able to achieve with EQAL assistance. The assistance has given me 1-2 hours of private tutorials with my tutors specifically focusing on exam preparation. I needed to have notes and questions ready before the meetings, and they could not write anything down, correct my notes or directly tell me what I needed to have, but they could correct the information I had collected and elaborate on information I was unsure of until they were satisfied. For anyone that feels this is unfair I will challenge them to miss two weeks of lectures and class tutorials, have a sprained ankle, chronic migraines and no pain medications, as well as the fear of loss of sight, disorientation and a cold.

So I write this on one of my designated study breaks with a cat curled on my lap. I think fondly of the recent performance week and miss dearly all the people I met through theatre and the people of the last few years who have stayed by me and will not be seeing me until I can drive out to visit them. Soon I will make a cup of coffee, put on another jumper and make a list of people to contact after tomorrows exam.

 

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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.

3 thoughts on “Prioritising

  1. God, I can totally relate to this; that was me this morning in my Linguistics class. I really admire you for registering for disability status at your school :] Sadly, there is a huge social stigma in Oklahoma against people with chronic illnesses, even at my school, and I can’t get up the courage to go to Student Services and do this. Keep up the hard work, and take care of yourself!

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  2. Jessie, I have only started to follow your blog today and i DIDNT know! 😦 I wish to come for a visit one day and be there for you. bg hugs and kisses from your dearest friend in Malaysia.Prayers for your health,strength and many good days to come.

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  3. Pingback: EEG and Rejuvenation | Nitya Nata

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