My battle with lupus

If she hadn’t had babies before her lupus was full blown, she may have remained childless. Carolyne Wambua, 36, counts her blessings as she learns to live with the disease. 

In late 2007, I started experiencing strange ailments that saw me in and out of hospital. In February 2008, I developed a terrible cough that had me admitted at the hospital for two weeks. The doctors thought I had TB. I was also anaemic. Two months later, I was back in hospital. I had no appetite and in just three months, my weight dropped from 76 to 56kg. I had joint pains, chest pains and I was always very tired. I was also losing hair on some parts of my scalp. By this time, I had long since stopped breastfeeding my young son, then a few months old, and put him on formula. I was too weak to breastfeed him. Medical tests would later reveal that I had lupus.

I had never heard of lupus before. I must admit that I wasn’t shocked to hear the doctor’s pronouncement. In fact, I was a little relieved that the puzzle to my ailments had at last been solved. In just few months, I had suffered a lot and I needed to know what was wrong with me. So when the doctor told me that I had lupus, my only question to him was if it was treatable. His answer was that it was manageable. However, nothing he told me at that facility prepped me for the struggle that lay ahead of me.

I have been in and out of hospital several times. Lupus is a strange disease that causes your body’s defense system to attack itself. When it attacks the heart, the doctors treat the heart. It may also attack the kidneys, the liver and other vital organs. I have been in hospital for all these and more.

Once I was booked into hospital in 2010 I had inflammation in my muscles. I was in terrible pain. Every single part of my body was aching. I couldn’t walk around without help. While crossing the crowded Nairobi streets, I had to ask for help and when I boarded a matatu, the tout would have to help me out of the matatu. Whenever I sat down, I had to be helped up. When upcountry, I couldn’t use the pit latrine on my own. I have also once been admitted to the hospital because of my consistent loose stool. For about five months between 2017 and 2018, I bled continuously. Even my stool was bloody. This was accompanied by a bad cough and chest pains.

The last time I was admitted to hospital due to back pains and chest pains, was in June last year. I however go for regular checkups now.

Managing the condition

I religiously take my medicines; eight tablets in the morning and five in the evening. Part of managing my condition also involves avoiding the sun. The sun accelerates blood activity in a way that is dangerous for someone with lupus. I also don’t touch cold water as this numbs my fingers. There are days that I wake up feeling extremely tired and on such days, I can’t do much work. I therefore ensure that I don’t stay alone. I am lucky to have an understanding husband who does everything for me when I can’t. My two sons are also very supportive. I am glad I had them in the initial stages of my disease. Doctors told me that lupus patients usually have complications such as miscarriages when they conceive.

I have joined support groups to help me cope because it really isn’t easy coping in the society that has little knowledge of lupus. To anyone with lupus, I would say that it is manageable as long as you don’t stress about it. In fact, stress is a known trigger of the disease. My only prayer is for a cure to be found for lupus. Managing it is also very expensive. I do tests and CT scans every two months that cost me up to Sh25,000 each. Sometimes, my monthly drugs cost over Sh20,000. So what happens to people who can’t afford a medical cover?