Meningitis in your words

Sylvia Djawahir's story

  • Location: Indonesia
  • Categories: Tuberculosis (TB)
  • Age: Young Adult 20-25
  • Outcome: Recovery with after effects
  • After effects: Co-ordination problems
I am 58 years old by the time I am writing this story. Physical fitness and holistic wellbeing have always been a priority in my whole life. I was part of the Indonesian national swimmer team in the 70s and remain as Indonesian Master Swimmers before I moved to Sydney, Australia in 2017 and joined in Sydney Master Swimmers club there. I can describe myself as strong, healthy and fit I have ever been but it changed in just second when I was diagnosed TB meningitis (tuberculous meningitis).
It started in mid of 2018 that I had severe headache, dizziness, stiff neck and back also sweating badly when I got up bed. This happened on and off until the end of year. I felt it was just exhausted and pressure after moving to another country. I took paracetamol when the headache came and it went away in the next day. One time when I was in Jakarta, Indonesia unbearable headache and sweating got me again. I called my doctor and was asked to do some test. The result was paratyphoid. I was given some medicines and was told to go bedrest for a week. I was feeling well when fly back to Sydney. But the headache and sweating persistently came and went after few days. Until one day when I was at a friend’s house around January 2019, I had all the symptoms back with my stomach hurt and couldn’t pee at all. My friend immediately called the ambulance and taken to a district hospital – Ryde Hospital. I fell in coma and I was told I was unconscious for ten days but I never asked in detail whether I was in a coma or was just being unresponsive. I then was transferred to a principal tertiary referral hospital - Royal North Shore Hospital. I was diagnosed with TB meningitis.
I remembered seeing myself at the hospital with doctors and nurses around me. The doctors at the time were quite questioning about this disease I had because Australia was not common with TB Meningitis. I might possibly pick up the bacteria during my job assignments in remote areas in Indonesia few years back which laid passive for quite sometimes in my body. I would never know about this because I never had any symptoms at all. I spent the first three months only laying in bed and was given bunch of treatments like blood tests every day, also CAT (computed axial tomography) and MRI (Magnetic resonance imaging) scans and a regime of various drugs to take every day. Twice of lumbar puncture procedures were performed during my six months stayed in this hospital. The procedure referred to as spinal tap, is a procedure that required obtaining and sampling cerebrospinal fluid from the spinal cord. It was very painful and I wasn't allowed to move for hours afterwards. I started doing physiotherapy daily three months later began with training my motoric and basic mobilizations like sitting, getting dressed and even how to get in/out of the wheelchair from the bed. The team doctors were the best, they made weekly plan meeting for my progress with me attended in. Within six months, I was transferred to other hospital - Prince of Wales Hospital (POWH) for further rehabilitation. In here I continuously undergo my mobilization therapy for another four months. The following months, I was learned to use a walker and be able to do most basic things like bathing, dressing myself. I was also provided sessions with a psychologist to prepare my emotional health after discharged from hospital and back to everyday life. 
I was finally discharged from POWH on 16 October 2019 and decided to go back directly to Indonesia since I haven’t seen my father in his last days before he passed away during my hospitalization. I flew back to my family although in a wheelchair with catheter attached to me and still had moon face because of steroid medication for TB. The past time has been challenging, painful and often scary likely loss of ten months a year of my life. I continued back and forth to referral hospital in Jakarta to keep track of my development and carried on taking Rifampicin and Isoniazid – TB medicines for another six months as outpatient. I am back in Jakarta, Indonesia for good. Four years later, as I am writing this story, I still have limitations such as walking with a cane, balancing, short term of memory, anxiety, tingling in both legs and numb from waist down to both legs as well. I then consistently keep up my physiotherapy, having acupuncture therapy and also do aquarobics once a week with each therapist come to my home. I am back swimming even with limited swim strokes but I am grateful to be back to what I love. I know I still face a long road of rehabilitation, but I keep believing God always with me that one day at a time would take me where I needed to be, whatever that is.
TB meningitis destroyed part of my life but I am very grateful because there are people out there who contract this devastating disease are not always as lucky as I was. I am lucky to be alive for that I also have to thank my family, friends and team doctors, nurses, therapists all of whom worked so hard to make me progressed. Sharing my story has been an emotional process for myself, but also brought me a sense of accomplishment. I see my journey as a masterpiece in progress, a testament of my strength, self-discipline, and the power of the human spirit.
Sylvia Djawahir
October 2023

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