CECELIA Maronko and Melody Stander are not afraid to break a sweat to prove a point.
Despite living with lupus, a chronic and debilitating illness which can cause people to struggle even to get out of bed on some days, they swam the Midmar Mile to raise awareness about the reality of the condition so many dismiss as psychosomatic.
A systemic autoimmune disease which occurs when a person’s own immune system attacks their body, lupus causes inflammation and can affect the joints, skin and blood cells as well as organs in the body including the kidneys, heart, lungs and even brain.
Many of the symptoms caused by lupus tend to mimic those of other conditions which makes diagnosis tricky, and therefore treatment and management of the disease complicated.
Like other invisible illnesses, lupus offers no physical evidence of its presence which makes it hard for people to gain acceptance from those who feel they are just hypochondriacs or lazy. The truth is people with lupus are fighting invisible monsters every day, and the better they do it, the less likely it is that anyone will ever notice.
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Maronko puts it like this: “Lupus is real. What makes it difficult to believe is that most times there is no physical evidence. People are fighting something that is so real with no evidence.”
However, Maronko who lives in Kloof, said living a full life is not only possible with lupus, it is important to do. “It is possible to live an active lifestyle. Possible to live with it and manage the condition”
Stander said put simply, lupus is basically your body fighting itself. “Your immune system can’t tell the difference between a healthy cell or a virus so it just attacks everything. This “attack” causes inflammation,” said Stander explaining that some of the symptoms people typically suffer from including extreme fatigue, joint pain, brain fog and the so-called butterfly rash on the face extending across the cheeks and nose.
Stander said that a big part of coping with lupus is adopting a healthy lifestyle including watching one’s diet and exercising regularly.
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Along with medication which is prescribed to help manage the condition, her doctors recommended swimming as it is a low impact sport. “I have found that I feel much better after swimming, as in no joint pains, and I recover a lot easier afterwards.”
This led to her deciding to take on the Midmar Mile as a challenge with Maronko. The two wanted to highlight the reality of the disease as well as show people that it doesn’t have to mean sufferers can’t reach lofty goals. Stander and Moronko were joined in their swim by Robyn Pitot, Heather Collis and Eunice Finlay, who heard what the two were planning and wanted to show their support by joining the team. Even after what both the women agree was probably the hardest thing they have ever done in their lives, the two are keen to keep swimming.
“Physically immediately after the Midmar I was exhausted and my body was sore. But I think it was just from the actual event. Now a few days after, I feel fine and would love to continue swimming as a form of exercise for myself going forward,” said Maronko.
“On the day I was completely shattered. My legs were sore for a day or two after. But all in all, I actually felt really good. I haven’t gone swimming since the mile, but I can feel my body misses it. I can definitely feel a difference in the way I feel between doing exercise and not doing exercise. Doing some sort of exercise is definitely important for a lupus sufferer,” said Stander.
Both also said they would happily swim the mile again. “The benefit I have received on doing swimming are immense. The impact on my body has been so much less than with other forms of exercise so swimming will be an activity I will continue doing,” said Moronko.
Stander said setting the goal was a good way to motivate her to exercise even when she didn’t feel like it. “It was good to have a goal to work towards. I probably wouldn’t have gotten any exercise if I didn’t have a goal.”
The whole point of the group swimming the mile was to raise awareness, and both women feel they have achieved that, but would like to do more. “Now that I have done it, people ask why and the conversation begins about my personal journey,” said Moronko.
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