#WorldLupusDay: How the complex disease ravaged one sufferer's body
The Bryanston resident then exercises and spends time relaxing before she gets ready to work from home.
“Lots of my day involves taking care of myself, and then I divide 30 pills and three shakes over the time,” she says.
Pillay suffers from systemic lupus erythematosus (SLE), or lupus as it is commonly known.
She was diagnosed in 2006.
Lupus is a complex, chronic inflammatory disease in which the immune system attacks its healthy cells, tissues and organs. A healthy immune system produces antibodies that help fight and destroy viruses, bacteria and other foreign bodies.
Physician Dr Thomas Blake says: “With lupus these antibodies, which are called autoantibodies, are produced and work against the body’s healthy cells and tissues, contributing to inflammation and damage to parts of the body, including organs.”
Lupus is characterised by flare-ups and remissions. The signs and symptoms will depend on which part of the body is most affected.
Common symptoms include extreme fatigue, pain, stiffness and swelling in the joints, a butterfly rash that covers the cheeks and nose, dry eyes, confusion, anaemia and fever.
In 2005, Pillay woke up with severe pain in her joints.
“It was painful when I walked. There was pain when I picked up anything. But because I was a director in my company, I had to get up.”
Getting ready for work was a struggle and the pain never subsided.
In October 2005, her family doctor suggested an autoimmune test and referred her to a rheumatologist and gastroenterologist.
Seven months later, she was diagnosed with Sjogren’s syndrome and fibromyalgia. Fibromyalgia syndrome is a long-term condition that causes pain all over the body. Sjogren’s syndrome is an autoimmune disease, meaning the immune system attacks parts of the body.
Blake says lupus is sometimes called “the great imitator” because its symptoms sometimes mimicked other illnesses, making a lupus diagnosis challenging.
Pillay says her symptoms calmed down for about five years. But in 2009, they flared up again - and remained for two years.
“That’s when it really started. My symptoms started to change every few months and I got sicker. You become alienated because nobody can see our suffering.
“You don’t understand what you’re going through. You can wake up one day and you’re happy because there’s no pain and the next day, you can be down in the dumps.”
In 2009 and 2010, Pillay was on prescribed medication for lupus and bedridden. She had five children, now aged four and 24, whom she needed to take care of.
“My baby was only three years old then and I was bedridden to the point where people had to feed me.
“The only thing that could take away my pain for a few hours was morphine and pethidine. I would go to the hospital and be put on a drip. I’d wake up the next day and I would be in pain again.”
Morphine is addictive and has severe side effects, so Pillay weaned herself off the medication.
In 2016, she celebrated 10 years of living with lupus by climbing Mount Kilimanjaro in Tanzania.
But when she returned home, her health deteriorated.
“When I came back I went for a routine colonoscopy and they found that I had colon cancer,” she says.
Her doctors operated to remove the cancer cells.
But lupus was ravaging her body, causing her lungs to collapse and an infection to develop.
Pillay eventually pulled through.
Lupus is an incurable disease; treatment is based on managing the symptoms.
It includes non-steroidal anti-inflammatories for joint pain and swelling, corticosteroids to weaken the immune response, anticoagulants and blood-thinning medication as blood clots are a life-threatening lupus symptom. A healthier lifestyle is also advocated.
“There’s no known cause for lupus, so there’s no real way to prevent it,” Blake says. “A treatment plan and lifestyle adaptations can greatly assist with reducing the number and severity of a flare up.”
Pillay treats her lupus with an integrated medical treatment, which is a combination of medical drugs and natural medicine.
Her treatment plan includes two trips a month to a chiropractor and she goes for deep tissue massages for fibromyalgia. She carries a mobile oxygen tank and exercises regularly - if she doesn’t, her muscles will tense, immobilising her.
At the end of a slow and often painful day, Pillay fetches her children from school and takes time to enjoy the small things in life such as cooking for her family. Before she sleeps, she takes her blood-thinner medication again.
Pillay uses eye drops which she keeps next to her bed - if she doesn’t she wouldn’t be able to open her eyes the next day because of dryness.
“It’s not all sad and gloomy and I like to make the best of the situation but, because not everybody is like me I like to share my story. I want people to know there’s support out there,” she says.
“If I wasn’t diagnosed with lupus, I would not have had that goal to push and climb Kili.”
Pillay spends most of her day taking care of herself and her children and working from home as a board member of a civil engineering agency. She has to ensure she paces herself.
“As you get older, you realise your husband and children are the most important part of your life. If anyone wants to find fault with you, just say: ‘Fine, stay away’; that’s where I’m at. I’m happy in my own space but it is a very tough journey.”
Despite her positive outlook, something keeps her awake a night - “the fear that today might be my last. I’m not ready to leave my children”.@Chulu_M