This Lupus Life

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

The End: 6 & 7 Dec


After the wedding we didn’t really have much else planned for our holiday. We had visited all of the ‘must see’ places on our itineraries, as well as the ones we had added on as the trip progressed. We had spent much time wandering the streets in various directions at odd times of the day and night just taking in the sites and experiences of the city and country. Most importantly we had been to the wedding of my dear friend, the beautiful soul Fareena, which was the reason for the trip. 


Finally the holiday was coming to an end and though we were staying by a large and exceptionally awesome shopping mall, we had little inclination to spend the money we had remaining or even waste time browsing. We filled the hours with snacking, drinking coffees, lounging by the pool and resting. Nothing much was exciting or exceptional enough for me to mention so I won’t go on.

We flew out of Kuala Lumpur at 12:05am Tuesday 8th December.  I wanted to share my holiday with you because I know what it is like to feel as though you are at the bottom of the well and there will never be an exit to hope for, let alone expect to reach. You know this as you have followed my journey. When you have been through this experience, or even ones half or a quarter the size of mine, people harp on at you to ‘take some time off’ and ‘give yourself a break’, ‘let someone else do it’. But you don’t want to and cannot. You start to feel like it is necessary for you to retain your independence and show you are able to accomplish the same things as before, that you don’t need help, that you aren’t weak. I know this was me and I am seeing it often in my friends with similar illnesses.

It is hard to let go. It is hard to be dependent and okay with it. It is hard to let down the walls and show your vulnerability and weaknesses as you battle your illness. In my ill health I did not relinquish much ground to those around me and what I did cede took a long time to step back from. I had to leave the country and be physically, mentally and psychologically THAT FAR from my comfort zone to see that these barriers hindered my recovery and inhibited my healing. I finally started to see that practices I had established, which I felt were necessary and beneficial to struggling day-to-day were actually weights I had placed on my shoulders that had dragged me down. Granted they may have been acceptable and helpful in the depths of my anguish, but as I rose above and began to wade into the shallow waters of what should be my normal life, these weights should have been left behind.

I have a hard road ahead of me. I have to break so many bad habits. I have to learn some simple skills that children learn young about manners and etiquette. I need to stop falling back on excuses because of what had happened to me and start to fight to know where my limits actually are again.

The lesions took mobility from my left arm, some etiquette and common sense behavioural awareness and left me with ridiculously curly hair. The treatments for4 them left me with unneeded kilograms and an insatiable appetite, as well as uncontrollable mood swings and flippant concentration. The experience has left me vulnerable to fears of my body falling ill or changing in anyway that may lead to inabilities to communicate and think, paralysis, pain or restricted movements. The holiday shed light to me on this, but now that I have returned I am armed with this knowledge and can see what must be done.

Bring it on son. IMAG1541


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 “The End: 6 & 7 Dec

  1. Pingback: 2015: Yearly revision | This Lupus Life

  2. Pingback: A lack of inflammation | This Lupus Life

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