This Lupus Life

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

January, starting my recovery

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Being unwell in the way I was in the last six months placed me in a delicate position. I had to cede my independence and accept another adult, or more, was responsible for my life and wellbeing. It had been that way prior but I had yet to admit this to myself. I still became upset and flustered at the mere suggestion of needing a secondary opinion, set of ears in appointments, assistance in traversing public places, making decisions in supermarkets or even crossing the street.

I’ve learned humility, patience, trust. I may not have been great at showing this but that was my pride. The obnoxious, sarcastic and bitchy person I let others see was my way of expressing fear and sadness as I realised I had been diminished. I was less. Locked in my head was the Jessie who scores so high in written exams without preparation or study, the girl who wrote three novels at the age of fifteen. All of that girl was barricaded behind an uncoordinated, disoriented, forgetful young woman who struggled with simple maths addition and grammar principles.

I was frustrated. I was upset. I was lonely in a way that only comes from losing part of yourself. I was never angry, regretful or bitter. I never felt unfairly treated, misused or as though I had exhausted my welcome from the great thing that is life. I simply had a calm, knowing patience. I would either heal or I wouldn’t. If I did it would be hard, unbelievably difficult. It would be slow going. But if I didn’t things would still be okay. I was loved.

 When you are unwell in the way that I was and tests show the treatment is working your doctors don’t secret this information. They don’t wait until the next time you come into their office. They call you. My call came days before Christmas. I’ve been ‘in the system’ a long time. I’ve had so many illness complaints in such an array, and now this Cerebral Vasculitis for issue for a few years now. I was wise to some truths here, so this clearance didn’t mean a fix for everything from this point forevermore. It didn’t even mean a fix for now. It meant ‘what we did worked’.

Relapses and remissions love to play fight more than kittens. My parents and brothers understood, they had been through this before. My girlfriends, too realised without me saying much. I don’t think Gallowe did.

Cracks.

Even I didn’t know how to test my limits. My humility and caution was also fear. I was afraid at how easily I could break. I now had a scar on brain from the lymphocytic lesions. Another scar from the surgery. Who knows what impact this small amount of damage could have. Who knew what I could or could not do now.

Fear.

Through a personal goal program I began to come out of my shell. I began to try to move in baby steps. I built up my stamina, strength and social skills again slowly. I attached to my folks for the majority of my outdoor activities, I suppose it was easiest to fall back into being cared for by them rather than friends, I didn’t want to impose. I made great advances this way. I developed my fitness until I was able to take short 15 minute online yoga classes at home occasionally, I was also able to experiment with my diet and settle on something that suited and was beneficial for me. I was feeling good. I wasn’t going out at night, I don’t think I can do that much any more. I wasn’t looking to be too physically active anymore, again I don’t think I will be able to achieve this. To be quite frank the current state of my health and activeness. I tried to explain this, as well as the high possibility of relapse somewhere down the track.

Cracks turned into crevices.

When you are unwell in the way that I was and the tests show the treatment worked the doctors revise your medications. They want to help you by remove any that are not necessary. In my situation some could definitely be changed and I want more to disappear altogether. In addition to this we had all been living in a state of baited breath for so many months. Our stomach in knots, our lungs so full of stagnant air, our cheeks rosy and swollen so that the sigh of relief we collectively released probably started a cyclone or typhoon somewhere else in the world. You would think I’d be relieved at this point and riding high and in elated bliss. No, that positivity had been burned up getting me through this whole ordeal.

I crashed.

When it wasn’t essential for me to engage in something my mind switched off. I was Just. So. Tired. But sleep was still beyond reach with the higher dose of Steroids. Any excuse to get out of the house and wear my body and mind out was desirable and needed for my wellbeing. My university timetabling and employment in education inevitably set me in different realms of organisation to many of my regular contacts which in turn led to social planning issues.

Crevices became gaping valleys.

Suddenly there were too many irreconcilable divides.

This is my way of telling you where I was in January. My absence was personal in a way I cannot share so much, but it is valuable in the way that it is a typical story for chronic illness. In trying to heal one piece of myself, bring back a part that had been hanging loose for so long, a part the was now touchable after so long, another part of me was broken.

I was made to choose.  I made the choice we of the chronically unwell always will choose. I choose the part that I have been fighting for this whole time.

I think one day there will come a fighter than will take over for me so I don’t have to choose.

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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.

2 thoughts on “January, starting my recovery

  1. Pingback: 100 Days of Healthy | This Lupus Life

  2. Pingback: The truth revealed | This Lupus Life

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