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The year I couldn’t drink coffee

Thanks to the drugs that suppress my overactive immune system, I caught tuberculosis from an unknown source. I had to learn how to let go and heal, how to ask for help, and that it’s okay to do so. It was the year which emphasised the knowledge, that I will always be okay in the end. Click to read or pin to save for later. | www.sicklessons.com | #sicklessons #lifelessons #achronicvoice #tuberculosis #coffee #littlepleasures #spoonie

The year I couldn’t drink coffee

Gee Thanks, Immune System and Drugs

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 prevalent it still was, 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 occupied my lungs.

Strange Lumps and Squishy Bumps

While there was a strange, squishy lump on my foot, an extraction of the liquid within showed 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, and it started to press against my nerves. I could leave it in or take it out, but either way it ran the risk of paralysis, which was frightening as it was my dominant hand.

I was fortunate enough to meet a kind and skilled hand surgeon, who removed my tendon lining and did a biopsy for me. Turns out it was TB after all, and everyone who was in the operating theatre had to get tested because of this, to my chagrin!

And So it Began…

Thus began the regimen of TB drugs, on top of the 20 pills I already took daily to control my autoimmune disorders. How this works — you show up at an assigned clinic every day, while a nurse trails your actions with her eyeballs. You get a take-home pack for Sundays, and you do this with diligence for nine months.

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!

TB Drugs Did Strange Things to Me

TB drugs reduce the efficacy of steroids, and so I had to up my dosage by half. This also increased the side effects, and my mental well being went downhill fast. I ended up seeing a psychiatrist and psychologist for the first time in my life. The antibiotics also triggered my heart rhythm disorder (PSVT), which further contributed to my depression.

Life Becomes a Landmine

Food or drinks that I used to consume became trigger traps. I had to give up coffee, which was the one thing I looked forward to every morning. Even a small sip or decaf could trigger a heart palpitation, where I would have to go to the hospital to reset it via injection. Chocolate was another trigger, especially the dark variety. That was my after dinner pleasure taken away, too. It may not sound like much if you don’t consume either of these. But try swapping it with your own daily ritual that brings you comfort, and you get a rough idea.

That was the year I had to stop working, as I was admitted to the hospital every two or three days. I never have much savings at any given moment, as my medical bills amount to thousands of dollars 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.

Forced to Advocate for My Own Mental Health

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 is no substitute treatment for TB, so I had no choice but to bear with it until the course was complete.

A Year of Difficult Lessons

It was a nightmare of a year where I lived in constant fear, not knowing when an episode would strike, or what would trigger it next. Eating and drinking was problematic, and I couldn’t partake in a proper meal with anyone. I felt like a criminal as I couldn’t leave the country, and having a nurse supervise me daily felt disempowering.

It was a year of shedding unimportant friendships, as I learned who my real allies were. I gained insight into my friends’ personalities – who the empathetic ones are, and their different methods of cheering others up. Time slowed down for in-depth bonding, and allowed for closer connections to form. I had to learn how to let go and heal, how to ask for help, and that it’s okay to do so.

It was the year which emphasised the knowledge, that I will always be okay in the end.

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