How to live with lupus

People Can’t Tell How Sick You Really Are

I was officially married two months after I returned from my missions’ trip and went to Israel for my honeymoon. I wasn’t exactly feeling at the top of the world as there were so much changes that I could not cope. As the new flat was not ready, I had to stay for two weeks with my in-laws and moved again to stay temporary with a friend’s family. Being quite a private person and having to share my space now with my husband’sfamily and a friend’sfamily proved too much for me to handle. I don’t take changes very well and tried to adapt to my new married life.

But I was very unhappy and also very tired from all the long hours of work and traveling time. Saturdays and Sundays were very trying for me as by this time of the week, I was so drained of my energy. Especially on Sundays, after church service, it would be back to work till 5pm. After work in the evenings, we would visit my in-laws or my mother before returning home. Mondays may be my off days but it was also a cleaning and laundry day. Eventually my visits to my mother and my in-laws became less frequent as I was experiencing chronic fatigue.

I believed all these could have added more stress to my existing health condition. Imagine in just a short span of less than a year, I had changed job, went for an overseas mission trip, got married, went for honeymoon and moved house three times.

Most people would not understand that one of the major things that happened in lupus is chronic fatigue and there is no way to measure that. The problem with lupus is people can€™t tell how sick you really are!

The only person who knew I was really sick and unwell was none other than my husband. He had been trying to convince me to consult a doctor but I was afraid and kept pushing it off. One day, we coincidentally met my mother in the bus and my husband grab this once in a life time chance and reported everything to my mother that I was sick and my legs were swollen and I refused to consult a doctor! My mother threatened me that should I refused to see the doctor the next day, she would be in my office to personally see to it!

I went to consult a GP and was later referred to a local hospital because of edema. Further blood tests confirmed that my SLE had flare up. Because of my nephritic syndrome and I was also leucopenia and thrombocytopenia, I was put on prednisolone 45mg/day and started IV Cyclophosphamide. However I had frequent URTI as well as pneumonia, the IV cyclophosphamide was abandoned after 4 doses. I was given amongst other drugs Azathioprine but was later stopped because of my low platelets count. By this time, I had all the side effects of the drugs: nausea, vomiting, malaise, hair loss, fever, increased susceptibility to infections, unusual bruising etc. After 3 months of medical leave and no pay leave, I had to quit my job. It was really tough without a job! No job means no income!