This Lupus Life

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

Back to basics

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I’ve spoken about that odd mentality that develops in people with chronic illness such as myself. The state I refer to is the fear that encroaches in us about resuming our old lives, wondering how much we can do the same and what has changed for the long term. There is also the older, wiser perception we carry on our backs, that awareness that life is that bit darker, harder, less simple to navigate. We need to be prepared to resume and integrate a dual identity, extra time and duties and just accepting a change in character and personality, physical capabilities and energy levels.
I think, know, I’ve hinted at all this before. Emotionally it is more draining than the health itself I feel. Mostly because you are well and it is hard to adjust back to an easy (ier) life. It is genuinely difficult to transition back to well.

If you want to sit here, reading this and think I’m a privileged ingrate, I’m sorry but you should stop reading.

I’ve been suspended in stasis, awaiting for another episode or something to indicate the drugs weren’t working, the lupus was active, my body was just ‘doing its thing’. Wondering what would happen next is a big one. You may recall I developed heightened anxiety (mania) before my Rituximab infusions began. You may also recall before my August episode I was existing in a state of extreme depression that I did not come out of until the middle of August.

Most importantly you will be aware I have had a busy life these past few months, juggling my university studies and hospital visits, dotted with practicum placements and medical testing and appointment’s.

I’ve been busy!!

But I have kept up with my reading (as you can see with my monthly challenge updates). My investigations have revealed supportive theories I’m looking into implementing this Summer break in the hope of taking control of my health for myself.

I know right?!

What I want is to take you on this experimental journey with me. We will start in a place I made the attempt to start at five months back. I will tell you how that went and why. Then we will look at why my mental health has been in its current state. Finally we will journey through December and January on what I hope to be my new road to recovery, and if it goes well, off medications!


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.

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