This Lupus Life

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

My Malaysian Holiday: Preparing to leave

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Early this year, 2015, I was contacted by one of my dearest friends. A girl I had studied with over six years ago, a Malaysian girl by the name of Fareena, was engaged to be married and I was invited to attend the wedding. It was to be held in the first week of December in Kuala Lumpur and I was welcome to bring a partner to attend.


In July Gallowe and I booked our flights and tickets organising tours and planning sites to see and discussing budgets and priorities. Of course, not soon after the organisation of our travel arrangements everything became a mess for me with my health and the mere fact of our holiday and possibility of it becoming a reality was brought into question. In the final few weeks it was agreed I would be able to achieve almost all the plans on my itinerary, unfortunately not the one highest on my agenda which is that of the Batu Caves.

The treatment of the Rituximab infusions in October instigated the lowering of my immune system to heal my Cerebral Vasculitis. The ongoing doses of Mycophenolate would add to this suppression of my immune system. What this meant was that the week preceding the trip was fraught with physical ailments and woe of all sorts. The treatments were definitely working. I had been experiencing an onslaught of unshakable sore throats and blocked nasal passages, scattered and constant cold sores. The visual flashes, auras and migraines that accompany my vasculitis were increasing once more in frequency and longevity. Worst of all was my first ever bout of gastrointestinal influenza (gastro they call it).


So as a whole I was unwell in three very physical ways and there was no sign of abating as the days to our flight drew nearer. I was pushing through three ‘Gastrostop’ a day and the same in ‘Stomach Ease’ medications, not to mention paracetamols on a regular basis. If you recall I am allergic to Aspirin and Ibuprofens, which means I am unable to take a lot of cold and flu medications and lozenges. So I was ‘toughing out’ the symptoms as they progressed.

My self-esteem was plummeting on top of this as I was packing, given that most of my Summer clothes or those for warmer weather did not fit me. Having spent the better part of four months in my ‘casual comfy’ clothes, (sick and sleepwear) and as the time was passing the horribly high dose of prednisolone (corticosteroids) were having their effect too. They were the reason I had gained 8kg in such a brief amount of time, and were certainly the reason my foul moods so packing was such a sorrowful time for me. To go to such a strongly Muslim tropical country during ‘monsoon season’ (thunderstorms, high humidity and high temperatures) with little comfortable and appropriate attire was embarrassing and saddening. Nevertheless I pushed through, accepting and my fate and circumstances.

Now I have set the scene, I hope you will be able to understand the circumstances which precluded the beginning of the holiday which was expected to be the well deserved end to a tumultuous year.


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.

One thought on “My Malaysian Holiday: Preparing to leave

  1. Pingback: Selangor: The Wedding: Sat 5 Dec | This Lupus Life

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