I think this is gonna be the last time I could share. This month gonna be really hard. My eyes didn't get better yet. The worst part was I know that it might gonna be irreversible, it might be impossible to bring my eyes back. The pulmonologist have to change the regimen again. But still I have great difficulty to take those drugs.
The stress breaks down my body and my mind. My stomach every day getting more upset. I often found myself spill out coffee liquid. I got hematemesis (vomiting blood) and abdominal pain more than before. I have difficulty in sleeping. The headache makes me bedridden almost whole day. I spill out almost every foods I eat.
But I have no other choice. I still have to take my pills for the sake of my family and people around me.
It is really unfair because I have to take drugs that almost kill me, endangered my eyes, broke down my stomach, my mind, my life
What I'm gonna tell here is my thoughts as a patient and also a health care worker. As a patient I think that it is really unfair because I have to take drugs that almost kill me, endangered my eyes, broke down my stomach, my mind, my life. It is unfair that I don't have any choice. It hurts to watch others who are terminally ill choose whether they are gonna continue their worst treatment or just take palliative care so that they could live to the fullest for the last time surrounded by their family and friends.
I think this disease is even more cruel than any other disease
But as a health care worker I thought that it must be really hard for the pulmonologist to explain to the patients, what will you choose die because of TB or become deaf or blind or may be lose their sanity. It must be hard for the doctor to force the patients taking those pills to prevent this disease infecting others while watching us fighting the horrible side-effects. It is must be really hard for them watching the patients who suffered or died.
This disease really gonna be the worst nightmare. I think this disease even more cruel than any other disease. We know that HIV is a highly infectious disease, but it doesn't spread only by coughing or talking. We know that cancer is a deathly disease, but it doesn't spread as easy as TB. We need to find new vaccines. We need to find new treatment. Otherwise this evil bacteria gonna destroy much more life.
If you are an MDR or XDR-TB patient and would like to contribute to the TB&Me blog, you can find out more here.