I thought I would never walk again
By Agnes Aineah
| August 18th 2019
I was a happy-go lucky girl going about my life and making plans for my future when disease struck. My woes began with a simple cold in 2015. It then graduated to spells of dizziness and fatigue. There were days I would drag myself out of bed to class. I was in high school at the time. Some days, I just couldn’t get out of bed due to a swollen leg. On many occasions, school nurses gave me medicines that did very little to help. When I couldn’t keep up with others in class, my grandmother came for me in school and took me to her place in Nyahururu where she started tending to me. We went from one health facility to the other and each time walked away with drugs that did not help.
One particular night, at 1am, I woke up with an uncontrollable headache. They became habitual and they would leave me in a daze. That is when my parents took me to Mathari Consolata Hospital in Nyeri where I was admitted for two months without getting tested. A later diagnosis revealed that I was suffering from systemic lupus, a condition in which the body’s immune system mistakenly attacks healthy organs. It may attack the skin, kidneys, the brain and any other organ. A Second Former then, I had never heard of lupus and I struggled to understand what the doctors were saying. I was later traumatised when, after googling the disease, I found out that it couldn’t be treated but only needed to be managed.
To manage my condition, I was admitted at the hospital for six more months, a time that I experienced the worst damage on my body. I developed large sores that left permanent marks on my body. That is why I am very careful how I dress to avoid showing the scars that look like deep holes on my thighs, hands and knees. We ditched the idea of surgery to fix the holes when my mother learnt that it was very expensive. The disease ravaged my muscles and I was in a wheelchair from June 2015. When I left the hospital in December the same year, I tried physiotherapy to strengthen my legs but it was too painful and I abandoned it. But a miracle happened. In 2017, I regained strength in my legs and could walk again.
I am a first-year commerce student at KCA University. My scars are the reason I don’t stay in the university hostels with my friends like I always dreamt of doing. I don’t want people to keep asking questions about the wounds.
I now manage my lupus by visiting the clinic every month and taking my medication every day. My biggest struggle is being focused on my studies while battling this disease. There are days that I never get out of bed because of extreme fatigue. But when I am healthy, I push myself to achieve what I can’t when I am sick. It is also a very expensive disease. I spend up to Sh15, 000 monthly on medication, something that strains my parents since NHIF doesn’t cover the cost.
I have also mastered my body enough to know when I am getting sick. First, my legs, hands and face become swollen; then I get extremely weak and fatigued. Sometimes, a friend points out a rash on my face. It is the butterfly rash common in lupus patients. Whenever I think I can’t manage the bout on my own, I call some of my relatives who stay in Nairobi to check on me. I am grateful that I have people just a phone call away. I know I am not alone thanks to a network of lupus patients on Facebook and WhatsApp.
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