MY STORY: ‘Constant pain does not deter me’

Throughout her life, Benedettah Wangui Mwangi has been living with constant body pain. This is because she suffers from fibromyalgia, a health condition without cure. It causes pain all over the body, brings fatigue, and causes problems with the function of the arms, mobility, breathing, swallowing, balance, memory, sleep and mood.

This condition started to manifest during her childhood in Kinangop, Nyandarua County.

“Wounds would take very long to heal. A little bruise would get septic and spread into a big wound that would take months to heal,” says the single mother of one. If it wasn’t the struggle to heal wounds, Benedettah would be down with hay fever or tonsillitis. Hospital jabs were part of her life.

Things got worse when she joined Magumu High School in 1993.

“I would develop painful spasms that couldn’t be understood,” she says. These painful sensations were the onset of back pains that would henceforth haunt her. “The back pains came with regular headaches. Since no one (knew about) fibromyalgia at the time, I was usually treated for malaria or typhoid. One month I would be taking typhoid medications, and the next I would take doses against malaria,” says Benedettah.

Despite the difficulties, she completed her secondary education in 1996 and joined St. Augustine Teachers Training College where she graduated in 2000 with a P1 teaching certificate.

Five years later, Benedettah got married and a year on, in April 2006, she had a son. Her condition deteriorated in 2009 when she was diagnosed with bronchasthma, an inflammatory disease of the respiratory tract. By 2010, she was so sure that she would succumb to these conditions that she started training her four-year-old son to bathe, dress and take care of himself.
“I had seen kids whose mothers had passed away become neglected, unkempt and hungry, and I didn’t want my boy to end up that way,” she says.

The back pains, muscle weakness continued. Sometimes she would be completely unable to function by herself.
“I needed assistance doing basic things such as dressing. One time, I choked at night and had to hit my husband hard so that he could get up and help me breathe.” She moved from one hospital to the other in search of a proper diagnosis.

“Since my condition was rare, many of the doctors who attended to me were unable to come up with a conclusive diagnosis and treatment,” she says. At worst, there were some doctors who would rubbish her health complaints as made-up. 

Her lowest moment was being told that she might one day wake up with a stroke.

“I was told that my body was shutting down due to multiple sclerosis,” she says. Although she had her child through Caesarean section, her medics had told her that her spine looked like that of a 55-year-old woman with several normal deliveries. “This broke me down. I was only 33,” she says.

Her treatment mainly included physiotherapy sessions.

“They were the most traumatic part. They involved massage and applying of heat, then vigorous manipulation, turning and twisting of limbs and muscles, and stretching them to near breaking point,” she says. “Usually, I would be pressed down hard to make me immobile and ensure that I couldn’t resist the stretching of limbs and muscles. It made me feel like a piece of wire or metal at a construction site!”

Apparently, the process would dissolve any unwanted lactic acid that may have accumulated within her muscles and which was suspected to cause burning sensations. Yet, she made little recovery.

In 2011, she was advised to see a neurologist.

“I was lucky to find one at the Aga Khan University Hospital in December 2011, who put me on a neuropathy treatment plan.” Only then did she see improvement. In July 2012, at the age of 35, her doctor at Aga Khan narrowed her diagnosis to fibromyalgia. By then, the management of her condition had consumed over Sh1 million.

She has now been properly managing her condition for five years, a period within which her marriage ended, leaving her to dangle between treatment, parenting and her teaching career. And though she has been living positively with fibromyalgia, there are still times when the ailment takes a toll on her.

“Sometimes, the pain gets so severe and uncontrollable that I can barely function,” she says.

Since her limbs are weaker than normal, Benedettah has mobility issues, which some people confuse with pride and show off. “When walking, I might seem as if I’m showing off but this is not the case.

I can’t walk as uprightly and steadily as I’d wish to.” Every step she makes hurts and it feels as though her bones are being crushed and her muscles pierced over and over.

“When traveling, I must use the front seat at the driver’s cabin to avoid igniting pain spasms since the seat is more comfortable and adjustable.”

There are times when she has gotten into arguments with medics over how she wants to be treated. “One doctor I saw wanted to treat my muscle spasms as an allergy. I tried to convince him that such kind of treatment wouldn’t yield good results. He ended up dismissing me as a ‘know-it-all’.”

Today, Benedettah says that she has learned to fight her limitations. “Like a rough diamond, I still go through the fire. Despite fresh complications occasionally popping out, my condition no longer controls me. Yes, it limits me, but I can smile because I am on the wheel of my life. I’m in control,” she says with conviction.