This Lupus Life

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

Kuala Lumpur: Mon 30 Nov

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Population: 28 million

Religion: 60% Muslim, 20% Buddhism, 9% Christian, 6.4% Hinduism, 4% Other

Government/ Politics: Elective monarchy, Constitutional monarchy, Federal Parliamentary

Language: Bahasa Malaysia and English

Capital City: Kuala Lumpur


Each day our breakfast creeps up a little earlier and the dinner pushes back a little later.

We were back on the monorail on Jalan Sultan Ismail early, this time heading for the National Cultural Centre of Kuala Lumpur. This is not exactly one centre, but the location of many iconic buildings and sites which represent the and reveal the rich culture that makes up the nation that is Malaysia. From monorail and onto the KTM Komuter train we rode to Kuala Lumpur station and headed in the opposite direction from the day prior, in eager search of the National Kuala Lumpur Islamic Mosque.

Did I mention we left our map home today? And we had planned a day of foot touring around the area? And we had no internet reception so you can forget that new fangled way of travel.

What an incredible site the mosque was. As a mark of respect, all visitors must don full traditional attire to set foot onto the grounds of the mosque. Gallowe and I both wrapped ourselves in a robe provided by the help desk, and I also was fitted in a hijab. Once our shoes were off we were up the stairs and away into the great tiled pillars and gazing in awe at the mosaic and stained glass designs.


Following the mosque, we crossed the street to the National Islamic Art Gallery where we saw the complete architectural history of Islamic mosque design and how and what influenced the changes over the last thousand years. It was an insightful experience for the two of us to navigate from the Gallery to the Kuala Lumpur Bird Park afterwards. I knew from deep analysis of the map earlier that the park was only a short walk away and the direction in which we should walk. I had been there before and had a thought Gallowe might like it, as well as that it was across from the Orchid Garden and the Butterfly Garden, which was my other ‘must-see’ destination of the journey.

As I say, it was a short distance and with our heads together we manoeuvred the monkeys and arrived hungry, sweaty and in due course. I had to be dragged away from both the orchids and the butterflies but I was ever so grateful to have been back. We did need to make another hasty exit this afternoon with the daily thunderstorm  setting in. It was a perfect wake up to the fact we needed to organise ourselves for dinner.

A few good turns down some back alleys and we found a restoran that served such exquisite local Malay food. Such great food that I felt bolstered to push Gallowe into trying some of the local fruits. I wanted him to try Durian, but he kept insisting to over indulge himself during the main meals and so never had room for dessert such as now. I had to satisfy myself with buying him a rumbutan and a mangosteen.

I have loved mangosteens since my first visit almost a decade ago and my tastes were unchanged. It was the perfect way to end a wonderful day.



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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