This Lupus Life

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

The truth revealed

Leave a comment

My recovery through the 100 Days of Healthy was always intended to be as much an inner healing as a road back to good eating and fitness practices. I suppose at the beginning I was still coming to terms with not having the burden of the recent illness on my shoulders, and then after that I had a brief time of intense personal trouble. What I didn’t expect was so much weight to come off my shoulders as so many hidden details about the time in which I was sick emerged. 

I knew that I had not been very emotionally drained by the whole experience of the brain lesion, frequent hospitalisations and resulting Rituximab chemotherapy infusions. Yet I did not think too much on this or how much I was holding back. The worst part, I suppose, was the fact that the situation I had been in was actually as bad as it may have seemed from the outside. I made light of it and yes I honestly didn’t think so much of it, given that I was living it all and I felt fine.

That whole but you don’t look sick chestnut us Spoonies in the Chronic Illness World are so accustomed to perhaps.

Everyone else around me got it. Well, I actually think there was one or two that didn’t and that is fine, they were going off my reaction, not the information. What I am only just starting to learn now is that everyone else was not handling it so well. Many shared conversations were occurring in the background about how to cope, how to talk to me and handle the situation and just generally how not to panic.

It would have been a tremendous moment to grab a copy of The Hitchhiker’s Guide to the Galaxy.

So the people in my life were crying for me, panicking and wondering about how to hide their fear from showing when they saw me while there I was smiling and collecting information on how to pack an effective hospital overnight bag and worrying if the hospital would cater to a low-carbohydrate diet. Fiona Stanley Hospital does for long term stays but the others do not. IMAG2037

During the time all this happened I was also a full-time university student. It was the second semester of my 2.5th year of a 4.5 year double Bachelors in Education. I was scheduled for a practicum, which is an on-site internship in which the university places you in a classroom at a local school, relevant to your degree and current study focus so you can gain hands on experience, utilise the information and techniques you have been learning and become a competent pre-service teacher. The Australian laws require pre-service teachers to complete a specific number of hours in these practicums over the course of their study so as to show they are adequately prepared to enter the Education workforce. My practicum was scheduled for October. You may or may not recall this was just over one month following my brain surgery. It was also the exact same time as the scheduling for my two Rituximab infusions.

It was irresponsible of me to push myself and do the practicum at that time. I was recovering and still unwell. I was of sound mind and body, certainly. I was competent and coherent, in full control of my faculties and functions, of course. But to risk the chance that something would go wrong was unfair to the university, to the school, to the students, and most of all to myself.

It was the realisation of how dangerous this had been that brought me to my senses to be able to perceive the situation as it stood.

Since then I have felt every day the fragility of my mind and body. I have been aware of the loss of my confidence, my easiness in public and my relaxed nature. I feel less inclined to engage and more far more reserved. I want to go out and engage with people my age in a safe, easy, friendly environment where I can make new friends but I don’t know if I will ever have that courage. I don’t even know if I will have the courage to accept a full time work position after I graduate. I use things like the 100 Days of Healthy to challenge myself, not just to regain good healthy, but to gain healthy living practices and the willingness to try.

I’m coming down off my medications now. I have already moved off my sleeping aids. That I can drop medications tells me I am getting ‘better’ as far as the Cerebral Vasculitis is concerned. Another way that I can tell my Vasculitis is coming under control is the pain. I am starting to experience a severity of Lupus and Arthritis symptoms like I have not had for three years, or since the Vasculitis started to develop. There is ever present unbearable pain and inflammation in my hands, elbows and knee joints, as well as extreme swelling in my fingers and feet. My skin is starting to show the rash again and I’m flushing easier. My kidneys hurt, my digestive issues are coming back and the bloodshot streaks are developing across my eyes.

There you have it. The truth is I’m kind of a wreck at the moment.

Advertisements

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.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s