The nagging inconvenience

How it all started.

29 November 2015, 5.30am.

It was a Sunday, and I was looking forward to a short hike with fellow hikers in Bukit Saga. The alarm went off at 5am, and like any usual days, I stretched my hand to reach out to my mobile phone on the table ahead of my bed. However, today something did not feel the same.

I had problems lifting my hand. 

It felt as if I had a 20kg rock on my arm, and I was balancing it with great might. Then to aide my hand, I moved my body towards the front of the bed. Then I realised that the agony of the 20kg rock has plagued my whole body. I felt that my body has been ran over by a moving lorry, and my torso and limbs felt like they were paper. I could not move my fingers, they were so stiff and they were stuck together. When I accidentally elbowed against the bed, the pain from my joints were so excruciating that tears came out from my eyes almost immediately.

I was not sure if this had anything to do with my wall climbing activities. I have been climbing slightly harder lately. I had a little voice in my head telling me: Told you that you are too old to climb! That little voice was not giving me any help when I tried to summon my body to move.

Walking down the staircase felt like an insurmountable task where all of my joints are crying murder with each step I took. By then I was thinking: WHAT IS GOING ON? Has climbing really taken such a toll on my body that my whole body takes a beating? I could not believe what was happening to me, and yet I have to accept that the pain is real.

When my family called me from downstairs, I did not have the strength to shout back or stand up to respond. I start to feel like a handicapped person and I needed a crutch.


  • I ascended Mt Rinjani in September 2016, almost 9 months after I was diagnosed with lupus. Back then in my own home, it felt like I had to do a Rinjani peak hike on a daily basis.

I was fearful about the changes in my body, however I did not know what exactly was I dealing with. I have been going in and out of clinics, tracking my blood platelets and eating high dosages of painkillers on a daily basis.  It was only after 1 month I learnt the truth and something deadly that I have been doing without knowing its consequences daily.

I was swarm with fatigue, and daily chores have never been harder before. Walking down the stairs, opening a water bottle, switching off the light and even dressing up has been a real nightmare. None of the doctors could successfully treat my symptoms and tell me what exactly was causing me these agony.

I had low platelet level, joints pain and slight fever that resembled the symptoms of Dengue, a deadly disease spread by the Aedes mosquitos. After tracking the blood platelets level for a week, my platelets resumed to a healthy level. So it was a dead-end.

2015-12-13 13.12.39

  • I was tracking my blood platelets level on a daily basis.

Another doctor diagnosed that I might have Leptospirosis, a bacterial infection spread by rodents. I took antibiotics and painkillers. I exhausted the antibiotics however my pain still prevailed.

Lastly, a third doctor suggested that it might be viral infection. The doctor’s instructions was to drink plenty of fluid, and then to take the painkillers.

One thing was certain: without painkillers, it was virtually impossible for me to carry on my daily activities.

After two weeks of mental and physical torture, I had to decide if I should cancel my trip to Germany and England. This was my annual ‘sanity trip’, where I had been looking forward since the beginning of the year, and suddenly the words ‘fragility of dreams’ came into mind.

I asked myself what else would I have done if I cancelled or deferred the trip and stayed at home. To see yet another doctor? I have been doing that for the past two weeks and my conditions did not improve. In fact, I was feeling sad and depressed with my current state of affairs, and figured that leaving the country, even if temporarily, would be my best bet.

Therefore, I prayed for the best and carried on with my solo trip to Germany and England. I take with me my nagging inconvenience, lots of courage and a rucksack full of painkillers.

Author: Li

This is a blog about the journey with my friend - Lupus, 500 days and counting after I was diagnosed. After I passed the initial stage of acceptance and moving on, it has been well so far. Whilst I have a full time job, I am also a writer for hire and could write just about anything. Contact me if you see anything that you like!

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