FIGHTING BACK
At the age of 32, Wetsho Motshwana has suffered a lot from a very little known illness, but one that took away her body’s mobility.
She always considered herself healthy and at the prime of her life up until she was diagnosed with polymyositis, a rare incurable disease that progressively attacks the muscles.
Polymyositis is an autoimmune disease that causes muscles to become irritated and inflamed. The muscles eventually start to break down, become weak and damaged.
At first she noticed the changes in her body gradually, week by week, month by month and around September 2019, she noticed that her hands were getting really dry and chapped.
“I assumed it was washing powder and ignored it even though it wasn’t getting better. By November, I was bathing and suddenly I couldn’t stand up in the bathtub. I had weakness on my arms and feet,” she narrates.
Extreme fatigue and brain fog were also a major issue. The pain and weakness progressed subtly with a few embarrassing and painful trip and fall events, as well as difficulty rising from the ground.
“I noticed heaviness in my legs, like my feet and calves were encased in cement. I had to drag my feet to walk, barely moving and at this point they were swollen. My back would be stiff. It was hard to rise up from a lying or sitting position. I slept seated upright on continental pillows.'
By January 2020 Motshwana was bedridden, unable to do anything. She was fed and bathed and everything else in between.
“I couldn't even lift my finger. At one point I couldn't breathe on my own as the respiratory muscles were giving up. I was completely weak and lost body strength,” she shares.
She was finally diagnosed in February. Before then, it had been a long journey of doctor visits and various tests had already begun but she was no closer to knowing what was wrong.
“It has been a long and exhausting ride and because He is God, I am winning this battle,” Motshwana says enthusiastically.
Her journey to managing polymyositis has not been easy. There has been an array of medical complications that have taken a physical and mental toll on her. She is on a treatment plan consisting of steroids, immune suppressants, pain medication, physiotherapy and a psychologist.
She was diagnosed with Type 2 diabetes, caused by the steroids she was taking. The medication she has to take also makes it near impossible for her to have children of her own.
With Motshwana being on immune suppresants, she and her family now have to lead a “cautious life” because the medication also weakens her immune system, putting her at higher risk of becoming seriously ill if she catches Covid-19. “It’s not just COVID-19 I am susceptible to, it’s
everything,” she says.
“I have to isolate most of the time, never go anywhere. Even my husband’s movement have been limited, going to work and straight home most of the time,” she explains.
“Life has also become quite expensive for us with medication costing around P2 300 a month which we sometimes have to fork out from our pockets because shortage of medication from government facilities and medical aid funds run out very fast. I have also had to change my diet because of the diabetes,” Motshwana says.
Even as the medicines and physical therapy keep her alive and thriving, polymyositis can be painful and frustrating.
“Some days I’m too weak to accomplish tasks as simple and necessary as getting a good grasp on a drinking glass. But I have accepted my reality and have left all in God’s hands.
“Even if I don’t get completely healed, my prayer is to get better enough to be able to do things I used to do for myself, have children, have my privacy back and just have a great life accomplishing my dreams.”
According to Dr Alex Udeha, polymyositis, a form of the rare disease myositis, is an autoimmune disease that normally affects all muscles found in the human body.
“Polymyositis is an autoimmune disease. It means that the immune system attacks your own body, causing inflammation and subsequent muscle damage, leaving the patient with muscle weakness,” he says.
He also states that the exact cause of this disease is not yet known. However, it is known to affect people over the age of 30 and mostly women. Polymyositis affects many different muscles, particularly around the neck, shoulders, back, hips and thighs. In terms of symptoms, Dr Udeha specifies that the first parts of the body to show the presence of polymyositis are usually the arms and legs.
“The first thing the patient presents is muscle weakness, particularly in the arms and legs. It leads to difficulty climbing stairs, getting up after sitting, or reaching objects overhead,” he says. However, the doctor emphasises that the patient diagnosed with this disorder may also have symptoms such as breathing problems if they affect the chest muscles directly, or malnutrition if it attacks the oesophagus.
Regarding the treatments that can be used to stop the progression of polymyositis, Dr Udeha says they vary.
“But it also depends on the commitment of the person. What is usually used is immune-suppressants, which regulate the proper functioning of the immune system.
“Corticosteroids can be used. Physical therapy is one of the important components of treatment.'