Fighting fibromyalgia with focused effort

Fighting fibromyalgia with focused effort

Roshan Kanesan speaks to Priya Kulasagaran about living with chronic illness, and ‘lifehacking’ your way to good health

Embarking on his college year, Roshan Kanesan was eager to make full use of the experience academically and socially; a typical tertiary student experience. Pursuing the International Baccalaureate at the Mahindra United World College in India, things seemed to be going well. He was maintaining good grades, made a lot of new friends, and was managing his independence well. “I didn’t want to admit then, but I was feeling so tired and fatigued,” says Roshan, now 27-years-old. “I tried to ignore my own health problems and just pushed myself harder and harder. I was living on a diet of instant noodles, but I was also really not getting enough sleep — it was a recipe for disaster.”

Over the course of a year, Roshan found himself flying back and forth between India and Kuala Lumpur, in an effort to get to the bottom of his constant fatigue and brain fog. “We found out that I was suffering from mycoplasma pneumonia, or ‘walking pneumonia’. Then I was diagnosed with chronic fatigue syndrome — at this point, I was advised to drop out,” says Roshan.

Leaving college just six months before his course was scheduled to end, made him feel like a “loser”. “I was utterly ashamed and depressed. It was like, I just couldn’t do these things like a normal person should,” he says. After taking a break for a few months, Roshan enrolled in a local college to take up the Canadian Pre-University programme. “I felt like I had some purpose again; I was trying to take things easier, but things looked okay. Of course, a year later, there was even more news,” he says wryly.

Just before his 21st birthday, Roshan had another diagnosis — fibromyalgia. “I just started laughing,” says Roshan. “I mean, by that point, it was just like, sure, what else can go wrong?”

One after another

Roshan was born with Holt-Comb Syndrome, a rare genetic disorder which is characterised with congenital heart defects and upper limb deformations. In his case, he had a hole in the heart and some damaged valves, which were repaired when he was six-months-old. To add to the complications, his sinoatrial (SA) node, which functions as the heart’s natural pacemaker, was also not working as well as it should.

“The valves and hole were repaired when I was six-months-old. They still leak a little bit, but there are no significant problems there,” explains Roshan. “But the SA node meant that my heartbeat was lower than what’s considered normal. At the time, the doctors didn’t want to carry on with yet another surgery to insert an artificial pacemaker, until it was really necessary to do so.” That necessity arose in late 2015, when Roshan’s resting heart rate dipped much too low — as low as 25 beats a minute. By contrast, a normal adult’s resting heart rate is between 60 to 100 beats a minutes.

Roshan jokes about being “part machine” with his artificial pacemaker, but what seemed to affect his childhood were the more outward symptoms of his condition. “The teasing was bad when I was younger, because of this especially,” he says, holding up his two-thumbed right hand. “It was just a few ignorant kids, but what was worse was not being able to keep up with the others physically. My parents have always been encouraging and never sheltered me or made me feel ‘abnormal’, but there was this worry about not exerting myself too much. Funnily, when I got to high school, my hands were suddenly ‘cool’, so that was interesting!”

These days, Roshan is brimming with curiosity and enthusiasm, lighting up when he speaks about his experiences travelling and conversing about current affairs. Having recently graduated with a degree in business and commerce, he is also currently mulling a job in producing to expand his interest in video-blogging and podcasts. However, it has not been a straightforward road to get to where he is now.

“My life has been a series of ups and downs, some really bad downs even, but if you step back and look at the bigger picture, it’s been a generally upward trend,” says Roshan. “But seven or eight years ago, it was hard to see that; what really drove me nuts was the brain fog because I couldn’t even have a normal conversation. There have been some really dark days, when I seriously felt like just quitting because life didn’t seem worth it anymore.”

What kept him going was the love of family and friends. “They have always been there for me, and my parents have been very patient, kind and understanding. Even when I was acting out from having to deal with yet another diagnosis. I felt like I couldn’t give up for their sake, and eventually I started seeing progress — that’s where hope came in. That’s when I started living for myself instead of just for other people, and I went back to my old habit of growth, of becoming a better person. It’s just that now, the parameters of growth have changed. I’ve gained more acceptance of things I cannot change, while trying to affect change to things I can; trying to change what you can’t just leads to insanity, that’s just denial,” he says.

He adds that he also gained more “self-awareness” after connecting with his peers over social media, particularly the community that starkly describes their life with fibromyalgia under the collective tag of “#fibrofighters”. “I started connecting with a lot more people through Instagram, and I realised that in a way, I was pretty lucky that my condition isn’t as bad as how some people have it. Some of them deal with far worse pain and fatigue, and they don’t have the economic security that I have, so I realised just how privileged I am,” he says.

While Roshan himself used to actively blog and vlog about living with fibromyalgia, he has since eased up on having “solely that narrative”. “It was a great outlet, and I learnt how to write and appreciate the idea of expressing yourself through art. But I didn’t want to be defined by fibromyalgia; it’s a part of me, but it’s not the only thing that I am,” he says.

“My life is a series of experiments”

In Roshan’s words, there are three main components that come into play when he has a “flare-up”; brain fog, fatigue, and pain. “With the brain fog, it feels like your brain just doesn’t have the energy to function, and fatigue is just being too exhausted to do anything,” he says. The pain can be several types, from joint aches, to muscle or nerve pain — sometimes it feels like your skin hurts just from having contact with air.”

Being an avid fan of self-improvement, and science, the way Roshan has learnt to manage his condition sounds deceptively simple. “It’s a series of experimenting with incremental changes with my habits, diets, physical exercise, and just seeing what helps and what doesn’t. For example, I’ve learnt that excessive sugar is probably not a good idea for me,” he says with a laugh.

He also believes that pursuing a more “minimalistic” lifestyle has been one of the biggest gamechangers for him in terms of managing anxiety and overstimulation. “See, when all this started, I would have barely lasted 10 minutes of having this conversation,” he explains. “It’s not just me talking; it’s also having to listen, process the information of what you’re saying, the sounds of the conversations around us, the light shining in through the window – it was like my brain was unable to cope with the amount of information it was being bombarded with. It’s not so much a problem today, but I still strive to be as minimalistic as possible. From the clothes I wear, to the coffee places I go to, everything is planned out so I don’t have to waste energy thinking about these things.”

Interestingly, having recently returned from a holiday abroad, he now has something new to tweak with. “So when I was there, I found myself having two or three choices of what I could do for the day — and it was paradox city, because I kept overthinking about what would be the best thing to do. I’m still always looking for the best, always looking for the opportunity cost. So that was a lesson of reinforcing this need to just chill out a bit more,” he says.

Having always been ambitious — “a type A personality” — this learning of how to cut himself some slack has been one of the biggest lessons Roshan has had to deal with. “I had to make my health my main focus, and putting aside my ego a bit as well!” he says. “I always wanted to be the best, and at the top, but now I have to see — at what cost? Now I look for the ‘minimum effective dose’ (popularised by self-help guru Tim Ferris), where you focus on the minimum effort you need to achieve a goal. It was something my dad had been trying to teach me for a long time as well, this idea of focusing on your goals rather than how hard you have to work to get there. It doesn’t mean that I don’t have any aspirations, but it does mean cutting out the unimportant crap and concentrating on what really matters to me.”

Comments are closed.