This Lupus Life

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

Malaysia 2015: 28 Nov


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Our flight to Kuala Lumpur was leaving at sunrise on Saturday 28th November from Perth International Airport. We had checked in online, but still were required to be there a few hours beforehand. Gallowe and I both being given to a love of preparedness, we planned to arrive two hours before boarding, so we had to to be a little late, or get held up with the construction that had been going on for so long around the terminals, or just wake up and have a decent wake up and breakfast before we flew out.

Of course, waking up so soon after midnight meant we needed an early night to bed and a dinner requiring little dishes or leftovers. The medications I take in the evenings, valprease and quetiapine, typically have a sedative effect on me. So much so that I struggle to rise and engage in any coherent manner before 10am. I do not mind so much about this normally as my morning medications put me on a high buzz that stops me sleeping. It was a tough decision, but I felt confident that I had woken up early enough and tired myself out sufficiently that I would be able to snatch possibly six hours of sleep before our taxi came. I did not take my sedating medications.

A little over five unbroken hours of lying irritably in the dark and my alarm was going off to get us up again. A very sullen Jessie dressed and ran a final check of the house to make sure everything was packed, tidy and ready for The Big Holiday.

Between frequent trips to the toilet, my gastro still a bother, and infrequent, brief and unsatisfying cat naps on the plane I was able to collect myself a bit. The hour trip from the airport was the first time that Gallowe realised just how different of a world we were entering. I could see the trip would be full of awe for him. Every second minute he would point out ‘How amazing’ all the sites, history and environment was. It was my third trip to Kuala Lumpur so this drive was not new to me but I could appreciate as I had felt this breathtaking awe myself before.

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Mostly I was just overwhelmed with joy to be on holiday and to be back in the city I love so much. There are few places I have ever been that have felt so natural to my soul as this great city and it was like a missing piece of puzzle had been returned to it’s rightful place. As grumpy and sleep deprived as I was, I was home.

By 2pm we had checked into our hotel. This portion of the trip was to be spent at The Royale Bintang on Jalan Bukit Bintang. I had stayed there before and love just how central it is to the city life and how easy it is to navigate the city via tour bus, foot, monorail, train and taxi. It is safe, near shops, hawkers markets, higher class restaurants and some of the greatest sites to see in this great place. Also it has a pool and a buffet breakfast. Two must haves for me in the tropics.

The remainder of this day we spent meandering around the city so Gallowe could get a sense of the place and a feel for the citizens within it. Our first meal was at the first Asian place would could find, which was actually unbelievably hard with so much road works on the street, at Fahrenheit 88 shopping Mall. He decided pretty quickly he was uncomfortable with my choice of outfits in such a strongly Muslims country so I needed to make some decisions of my own over the next while about how to solve this. Dinner was one block down in BB Park. Gallowe wanted to try Shisha (smoking flavoured charcoal through a hookah) and we had nothing else to do so he even had a beer with it.

To clarify, I do not drink alcohol. Nor do I drink soft drinks or bottled juices. Each night Gallowe went searching for beer with me in tow. I opted for a range of freshly squeezed juices made from local fruits during these exchanges.

This evening saw us in our beds and asleep by 8pm. I, of course, say beds because we are unmarried people of opposite sexes travelling and sharing a room together. In this country, in Malay-run accommodation, it is improper for us to have one one king bed to share.

The only other thing worth mentioning regarding my health is my frequent yet sporadic small seizure/ stroke episodes. They had been occurring since mid-morning and were effecting me with lapses in concentration, stability, coordination, visual auras. Needless to say I contacted mum just so she knew and so she could contact my neurologists on Monday.


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.

3 thoughts on “Malaysia 2015: 28 Nov

  1. Sounds like an interesting time. We had a great time in Kuala Lumpur (, too. It’s a stunning city I’d love to revisit again šŸ™‚

    Liked by 1 person

  2. Pingback: Malaysia: Sun 29 Nov | This Lupus Life

  3. Pingback: Petaling Jaya: Thurs 3 Dec | This Lupus Life

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