This Lupus Life

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

Exposed

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I have caught you up on the whole saga which has followed the most recent stroke episode. The short version I will recap in a drastically vague way here:

A stroke during a performance lead to sprained ankle and discovery of more masses. Treatment for masses short term was Prednisone, long term is Imuran. I’ve isolated myself as a preventative from becoming Godzilla in Size 8 dresses, but there have been some casualties and I will never be able to take back some of the words I’ve aimed at my family. I’ve still been attending university, somehow have managed to maintain my 70-80% grades through Kidney Stones, other internal obstructions and anaphylactic reactions.

I’ve established some (hopefully) solid new relationships with people recently. I try to tell therm in the beginning about myself. It is always such a hard and vulnerable time for me. I like to be honest about my health because I like people to know me completely and understand why I am so candid, and at times, forgetful. Generally when I meet a new person I like to gauge how genuine they are in the way they treat others, how they speak and how they consider things. I need to know that when I open myself up to them they will firstly respond to me with an honesty and sincerity. Then I need to feel they will actually think about what I have said and appreciate that it is hard for me and I am showing I trust them.

Why is this so important now?

Recently I had the massive green light to start weaning of the Preds!!! No more steroid rage. No more insatiable appetite, sleepless nights, restless hands or body taken over by Superman’s multiple personalities. The going is slower this time as Connor and The Team at RPH don’t want to shock my body, but even so, it doesn’t take much to feel a large impact.

There is no more cotton wool stuffing up my  mind. The language, speech, cognition and all associated cognitive functions are coming back with a vengeance. My intellect no longer feels like a haunted memory of times long gone. Sentences come out of my mouth as I want them to and with articulate intent. I can see clearly (no blind spots) although my vision is fuzzing up once more. I am kind of co-ordinated but I may have to give up my desires to learn some dances. I can cross the street by myself and the supermarket no longer scares me.

Jessie is back baby and she wants to play!!

This clarity has come at a price.

When I was ‘muffled’ in my mind due to the medications and the ‘Brain Farts‘ I existed in a tranquil state. I was very peaceful and untalkative, except for the times when I was irrationally emotional and dazed. Typically I am a positive person, with frequent bouts of over-talkative, excited energy. I am passionate and, while not reserved, I am content to be a fence sitter and drift along. When I was ‘muffled’ I was more dazed than coherent and a frequent introduction or statement I would drop in to conversation was about my neurological troubles, just so people would understand why I won’t remember them or the conversation later. Or why my words mightn’t make sense. It was just what I did in the course and routine of getting through the day as I needed to. I wasn’t a zombie, just a girl trying to mete out politeness and energy as the situation needed.

Now I am not muffled I have found the same conversations have left me feeling emotionally vulnerable. I cannot say what or why this is, only that my awareness of the situation and the other person’s response is so much more acute. You cannot make a person like you. You cannot even change the way they see and respond to you. You can only provide the best setting for yourself to be exposed and vulnerable in this way, and know that whatever happens it is for the best. This knowledge however doesn’t protect you or stop that nervousness you live with for the next hours, days, weeks etc until they show that what you shared hasn’t changed how they perceive you. And they don’t realise just how clearly you can tell the answer to this.

My friend Vollie and I have been discussing when is the right time to share something about yourself with someone you want to get to know. Do you give them a little time and ease it in slowly? Or do you just blurt it out from the beginning and hope it wasn’t too much too soon? You know I’ve lost friends and more because of my disease. You know I don’t blame anyone but you also know I have been hurt, isolated, alone at times. I know who I am now, which is something I didn’t know before. I know what I want for my life, what I have to offer others who come in to it and what I need to function with others. I have a big heart and a lot of love and time for anyone who has the same for me. I cannot commit to negativity, toxicity or any form of abuse.

I can see this all clearly now. It excites me. I hear a melodic guitar in my headphones as I walk down the sidewalk on a sunny spring day and suddenly the possibility of a simple and happy life seems achievable to little old me.

There are no words for that feeling.

Wisterias in Suburbia

Wisterias in Suburbia

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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.

One thought on “Exposed

  1. Pingback: The Best of Both Worlds | Nitya Nata

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