This Lupus Life

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

My Balancing Act

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Hate is such a strong word. It is an emotion I have been trying to avoid feeling over the last month. Actually, if I were to be precise, the higher levels of chemicals, anxiety, desire for perfection and a need for things to be ‘just so’ are all things I have been trying to avoid. And yet I will admit that I have hated these last few months.

This is not to say everything that has happened has been hate-worthy. Certainly not. This is more a hatred at the overall situation and the general lack of control coupled with spiralling inevitability, high-momentum life-circumstance and just bad timing.

Cranial Biopsy August 28 2015

Cranial Biopsy August 28 2015

It is now the end of October. One day shy of the two month anniversary of my cranial biopsy. less than a week shy of the instigation of my Rituximab infusions to heal the inflammation currently residing in the right occipital lobe of my cerebrum. That mass was also discovered a little over three months ago. Curiously enough, in the Real World, precisely three months ago I began my first week of my second semester of my third year of university. That second week I was admitted to Fiona Stanley Hospital following a Stroke-Like/ Partial Focal Seizure Like Episode in class. One week later, University Week Three, I was treated and ‘set free’ only to be admitted to Royal Perth Hospital a week after this for More Tests (Week Four). At the end of Week Five I was admitted to Sir Charles Gairdner Hospital for the Cranial Biopsy, then spent two weeks at home on bed rest pulling off the Bride-Of-Frankenstein look. The staples were out after a week, I was able to return to university briefly before I was ‘set free’ for study break and to prepare for my upcoming in-school placement (practicum). Eventually I was given a date for my treatment (Rituximab infusion by intravenous line (IV)) as an outpatient of Royal Perth. Of course one of my dates fell in the time I would be on my placement, which meant taking time out to be treated and then returning to make up my lost day later.

Yesterday was Monday 26th October. Yesterday I finished my placement. I only have two assignments left, both due this week and both are largely finished.

Did any of this confuse you? Would a visual timeline help?

IMAG2083

The hardest part of this last period of my life was that I felt so isolated. Everything that was happening in my life was about me and I did not like it. With the buzziness of activity that were my appointments, treatments and illness everyone was ‘catering to my whims’ on one level, but trying not to interfere with me and my life. My mother lived with us during this time, she took on the burden of the chores so I wouldn’t have that to worry me. It may sound strange or unfair or unreasonable but the emotional weight on me, as well as feeling the physicality of my situation, wore me out to a point that 3pm was a barely achievable target. I think she needed to be near me and to do these things as a way of confirming in her mind and heart that she was still my mother and her taking care of me was still helping to heal me. My father took a week to stay too and he did the ‘man things’ with Gallowe, my brothers and housemate Bow. Gallowe was as patient as always, listening and caring without taking my moods to heart. I mentioned that I felt isolated and above you can see I was in fact not alone. The isolation came because I was held apart from this activity both by others and their need to care for me, and by myself and my desire not to get in the way or inflict my manic moods on them. Oh, and I had a lot of things to do for university.

There were so many people in my house, so much activity occurring every moment of every day, that it overwhelmed me. As a person that needs space I struggled. On top of my own nature and my illness my treatments were driving me to dangerous extremes of moods and that was about the time The Mania came in. I cannot say what happened during this last month, the moods I felt and the energy from the steroids made much of it incomprehensible in my mind. I just saw red in the moments I wasn’t moving like the Road Runner. My heart hurt from all the anger it felt and I don’t know how I didn’t feel like crying more.

Yes I held it together through my placement. But this is not really a proud moment for me. It is not something I feel was an accomplishment. It was reckless and foolhardy. I see now that I should not have done the placement in these circumstances. Yet it is over now. That is as far as I will go. I passed. I learned a lot of things and I have some very good directions to take in the future. But I do need to make a lot of time and take a lot of effort to ensure I am in a better position cognitively and mentally the next time I enter an in-school placement.

This Jessie is fragile. She may ‘be strong’ and she may be ‘a survivor’ but she just wants to be ‘asleep’ and ‘in the background’ for a few months. She wants to be a girlfriend, an artist, a peacemaker, a writer and a cook.

No more tightropes here.

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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.

4 thoughts on “My Balancing Act

  1. Ugh! That sounds like the month from hell! I’m so sorry you had to go through all that. Brain stuff and mood swings are beyond terrible (for the sick person AND whoever has to put up with us).

    I hope the Rituximab works for you and that you feel better as soon as possible. I remember also feeling like everything revolved around me this year and I really hated it. I kept having to remind myself that the best is yet to come, even though I didn’t always believe myself when I said this.

    I hope you get the rest and peace you need very soon. And congrats on passing your placement also 🙂

    Liked by 2 people

    • I cannot agree with you more lupolympics! The best is definitely yet to come and we are thinking for us that this is a final ‘hump’ in my health battles and this is the indicator of smooth seasons on the horizon. Thank you so much for your kind words, it always helps to know we aren’t alone in our battles.

      Liked by 2 people

  2. Pingback: My Current State of Affairs | This Lupus Life

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