I was free of pain only when I was pregnant
I was on my way home from running errands with my mum one evening when I felt a sharp pain in my right leg around the ankle area.
I was in so much pain that I couldn’t move an inch from where I stood.
My mother thought the shoes I was wearing were responsible for the pain. When I got home that day, I headed straight to bed in deep pain and on waking up the following day, my whole body was swollen. I also had a terrible headache. No one understood what was happening to me and thus concluded that I was bewitched. That was 25 years ago.
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It marked the beginning of my numerous visits to traditional healers in various remote parts of Mombasa as my family looked for answers to my strange illness.
Each time, the healers applied some herbs on my body, relieving the pain for a few days before the pain came back in full force. School became tough too. With twisted legs and fingers, it felt different to be in a school with normal children.
I found it hard to concentrate on my studies. Besides, I was always in pain and I spend a lot of time in the dormitory while other students attended classes. It got so bad that I had to be transferred to a day school.
At 19, and after traditional healers failed, my family took me to Aga Khan Hospital in Mombasa. I had been to other health facilities where I underwent acupuncture to ease the pain in my legs and arms by having needles injected into them but even that was not working. At this time, I couldn’t walk or perform such simple tasks like combing my hair or holding a cup.
It was at Aga Khan that doctors told me I had rheumatoid arthritis. They told me the disease was not treatable but that it was manageable. That part of management would include doing physical exercises. However, the exercises were painful and I gave up along the way. It was only until the doctor threatened to drop me from his list of patients that I resumed the exercises.
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I have had surgery on my right leg. The doctor found some fluid retention on my right leg and prescribed surgery to drain it. I later found out that I shouldn’t have had the surgery but alternative therapy. Since then, I have had pus removed from that leg more than 10 times. It starts building up as soon as it is drained and it causes me immense physical pain.
I can’t hold down a job due to my physical state. I now tend to my sisters’ kitchen garden that supplies vegetables for our meals. I also try to prepare simple meals that do not require a lot of hand movements.
At some point, I lost all my teeth. They just rot and fell off. I had them replaced recently but I have also already lost two of my new teeth. Because of the medicines I take, I have developed ulcers that sometimes leave me bedridden for long intervals. This period of dormancy compounds pain in my joints.
I get fatigued a lot too. So much so that I can’t move and I need to be carried around. I am grateful for my sister who willingly does it. She has taken on the care giving role. She also foots the associated costs which can be too much on her teacher’s salary.
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We spend Sh35,000 monthly for my medication. Recently, the doctor prescribed three injections that cost Sh125,000 each. I have had one and waiting for other two.
I take my drugs religiously and only stopped when I was pregnant on the doctor’s advice. He explained that I wouldn’t experience any pain and true to his word, I didn’t. But three months after, the pain came back with a bang; stronger than ever.
Back in the day, I would feel sorry for myself when I saw people stare at me due to my deformed limbs. But I have since learnt to accept my condition knowing that to be accepted in the society, I must learn to first accept myself.
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Aga Khan HospitalMombasa