#14: The year I couldn’t drink coffee

A year of me vs a tuberculosis and steroid alliance. Greatest achievement: swallowing 30 pills without gagging.

Thanks to the drugs that suppress my overactive immune system, I caught TB (tuberculosis) from an unknown source. Everyone else around me was fine. My doctor conjectured that I had caught it from someone coughing on the streets. I hadn’t realised how notorious it still was in this day and age, and had chalked it up as a third world disease. The weird thing was that I felt well, and wasn’t coughing even though the evil bacteria filled my lungs.

There was a squishy lump on my foot, but an extraction of liquid revealed nothing. It didn’t hurt or cause any problems apart from being an obvious extrusion. Then another popped up on my left wrist after a year or so. My rheumatologist referred me to a hand surgeon, who proceeded to remove my tendon lining and do a biopsy. Both leaving and removing it ran the risk of paralysis, which was scary, being my dominant hand. From the biopsy, they discovered that I did have TB all along. All the surgeon’s assistants had to get tested because of this, and I felt apologetic.

Thus began the regimen of TB drugs, on top of the 20 pills I already consumed every day to control my autoimmune disorders. How this works — you need to visit an assigned clinic every day and take these medications in front of a nurse. You get a take-home pack for Sundays, and you do this for nine months rain or shine. This is because TB can still kill you, and this is the only method of controlling it. If you have drug-resistant TB instead, which many of the foreign workers from third world countries do, then you’d have to go on a different treatment. This requires painful, deep intramuscular injections, and would be a bigger nightmare. It surprised me how many people in Singapore actually have TB, by the way. The clinics were always full!

The TB drugs did strange things to me. They reduce the efficacy of steroids, so I had to double my dose. This also doubled the side effects, and my mental well being went downhill fast. The vitamin B tablets didn’t help much, and I ended up seeing a psychiatrist and psychologist for the first time. The antibiotics also triggered my heart rhythm disorder (PSVT), further contributing to my depression.

Food or drinks that I usually consumed became trigger traps. I had to give up coffee, to my great annoyance. The one thing that I looked forward to every morning, that little cup of joy, was now taken away from me. Even a small sip could trigger a palpitation, and I had to reset my heartbeat via injection at the hospital. Chocolate was another trigger, especially the dark variety. That was my after dinner pleasure taken away, too. It may not sound like much, especially if you don’t consume either of these. But try swapping it with your own little daily pleasure or ritual, and you get the idea.

That was the year I had to stop working, as I was being admitted to the hospital every two or three days. I never have much savings at any given moment, as my medical bills add up to the thousands every month. Now they dwindled to zero, and I had to rely on my partner for support. He was a solid pillar who not only handled my financial worries, but was present in every way possible. It must have been hard for him too, especially those nights where he had to take me to the hospital at 3am, then go to work after.

That was the year I finally grew adamant and demanded to see a psychologist or psychiatrist. I’ve always had depression and anxiety since I started on steroids more than a decade ago, but I had reached a wall that I couldn’t scale. Every waking and sleeping moment was like treading across a landmine. I could be sitting there in peace, and a heart palpitation would hit me. I could be fast asleep in bed, and a shift in position would trigger another one. There was no substitute drug however, only this one treatment. So I had no choice but to bear with it until the course was complete.

It was a year of nightmares. Of living in constant fear, never knowing when an episode would strike, or what would trigger it next. Of not being able to eat or drink well, or being able to partake in a good meal with friends. Of feeling like a criminal, as I couldn’t leave the country. Of feeling like a child, as a nurse had to supervise my medicine intake every day. Of feeling useless, helpless, in pain, and messed up in the head.

It was a year of shedding unimportant friendships, and learning who my real allies are. Of learning more about my friends — who are the empathetic ones, what methods they preferred to use when trying to cheer someone up, what sort of characters they really are. Of closer connections and where time slowed down for in-depth bonding. Of letting go and healing. Of learning how to ask for help, and that it’s okay to do so.

Of learning that I will always be okay in the end.

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