Abatgul is a patient advocate who raises awareness of drug-resistant TB in Uzbekistan. Here she blogs about the first time she realised she was ill...
I work as a journalist for the Nukus TV station as a moderator and editor for two shows. One is about the history of the people of Karakalpakstan, the other one is called ‘The magic of the word’, which explores forgotten words of the Karakalpak language.
I also write articles for newspapers, poems and short stories. I got married in 1994 after meeting my husband at work — he is a film director.
In December 2007 I felt a strong pain in the left side of my back. I couldn’t read my texts at work because of the disturbing feeling of having a frog in my throat. I thought it was the usual bronchitis and pain in the chest.
The closer New Year’s Day came the more intense became the work. On 30 December, after conducting the programme review I felt fatigue and agony and my feet were freezing. I was thinking: “Soon I will be home and wrap myself in blankets and get warm.”
My house is near my workplace, but at the time it seemed so distant. I wondered why I felt weak. It was difficult to realise what was going on.
As I entered the house I coughed constantly and fell over. The disease overcame me. When I was breathing my left side became more painful and pinching. Every minute of that day made me worry a lot.
On 2 January 2008 I went for an X-ray. When I heard from the radiologist that the disease had started, I realised what it meant… it meant TB. I felt sorry for my poor lungs and wept.
“Any disease is curable. I need to fight back and start treatment immediately to protect my lungs”
At that moment one thing went through my mind: “Any disease is curable. I need to fight back and start treatment immediately to protect my lungs.” Then I was diagnosed with DR-TB. I did not know what it meant. But my character is to accept challenges and I accepted this disease.
I was transferred to the TB 2 hospital and at first I was scared but soon I felt OK, the care was good. Most people I stayed in hospital with could go home for ambulatory care after two months, but not me. My condition got worse and worse.
I was in hospital for four and a half months. I was then able to go home to continue my treatment there, all together it lasted 21 months.
I had difficulty swallowing the pills in general and found it very hard to gulp them down. Then I observed how a man took his TB drugs — all at once — so, from then on, I did the same thing.
The main problem for me was vomiting after I took the drugs — I had to go outside for fresh air. My skin became darker. Sometimes I couldn’t eat food at home, I went to the bazaar and ate there. I used to like eating Korean salads.
It is very important not to miss any drugs and to find a way to deal with the side effects.