This Lupus Life

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

Going without

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I have been off my medications for 9 months now, almost to the day. In this time I have been through some pretty emotional life-changing experiences. The journey of coping without the various aids which helped to bring me back to healthy living has been a hard one and I’d like to share a bit about what I have dealt with.

When Cinta passed away I almost went back on my anti-depressants. The pain of that loss was something more than I could bear. Cinta passed only shortly after I was through weaning off the pills and my emotions were somewhat fragile already. I found there were so many days that getting started each day without her there were empty and it was all I could do to make it through until the end of the business day without taking a sedative, calmative or natural soothing therapy. For well over a month I slept each night with a large pillow in Cinta’s spot and a light dose of lavender oil on my temples.

When I had my prac placement in the school I found my asthma started to play up a bit, and my knees were hurting a bit more. My feeling with this was not so much the actual work, but more the aches came about due to the change of movements I was going through. By the end of the third week my knee pains lessened, but I had come down with a cold. Normally this is not of note, but I rarely contracted colds and flu’s with the immuno-depressants so this was an undesired and novel experience.

By mid-Spring I had ‘The Works’ hit me. There were finger swelling episodes, mega lower back pain, severe wrist pain as well as spontaneous bouts of panic attacks, sporadic eczema. Don’t forget the  Erythema Multiforme too! There was a period that saw me experiencing some of the worst depression ever. Many topics of conversation and activities had to be  cut out form my life altogether during this time while I focused on keeping positive and just getting through an excessive amount of Yoga to balance my mood swings.

Throughout the year I have had my ups and downs. While we know that is no different to any other year for me, the important thing is that I have not had just cause to return to my medications. I have managed to cope with the kicks in the guts this year has dealt me. Sober. I have to say, I feel like a new person. Stronger. More independent. A little prouder too.

The feeling in myself is that I am no longer a girl who lives with illness everyday. I am just a girl, who has the world at her feet.


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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