02 Apr Long Covid – Finding a silver lining

For many of us, the covid-19 pandemic is fading into memory, but for millions of people, that isn’t possible as they are still unwell. An illness that is often brief and mild is, for some, the start of a rollercoaster of symptoms that can last years. By 2023, it was estimated that around 65 million people worldwide may have long covid and suffer from the persistent, crippling symptoms of this still fairly unknown and unseen condition.

Timboon resident Tahlia Berry is one of them and has very bravely decided to share her journey with this debilitating condition to spread awareness and recognition.

The World Health Organisation (WHO) defines long Covid, or also called post -COVID-19 condition, as the continuation or development of new symptoms 3 months after the initial SARS-CoV-2 infection, with these symptoms lasting for at least 2 months with no other explanation.

Tahlia still remembers the exact date she contracted COVID-19, 13^th June 2022, as she changed from a healthy and fit 17-year-old to being unable to move.  Her initial COVID-19 symptoms were quite mild as she only felt a bit lethargic, had a chesty cold and some brain fog.

“I didn’t feel too bad, so I kept on doing things, including exercising.” Tahlia said. “I’ve always been very fit and love exercising, so continued doing YouTube workouts on the treadmill that I started doing during lockdown in 2020.”

Unbeknown to Tahlia this was the beginning of an illness from which she is yet to recover completely as following her COVID-19 infection, she went on to develop longer-term effects that can now be recognised as post-COVID-19 condition or long COVID.

For a while she tried to ignore the initial signs and pushed through, but when she kept on having chest pains, after she felt something pop while changing after a netball game in Warrnambool, and experienced hot flushes and brain fog at school, she started to think something a bit more sinister was going on.

“My mum, Christie, was working away from home for work and even though she checked up on me all the time, I started to get very anxious about my health, especially being alone at home during the nights,” Tahlia said. “More than once I woke up during the night experiencing what I thought might be a heart attack as the pain I felt mimicked a lot of similar symptoms, like chest pain, heart palpitations and feeling hot and cold.”

Mum Christie was getting very concerned as well, as she saw her always very healthy and fit young daughter changing into a very anxious and tired looking teenager. “As I work in healthcare, I know not to ignore the signs and Tahlia started to change in front of my eyes, so we decided it was time to see a GP and get things checked out,” Christie said.

The GP couldn’t find anything physically wrong with Tahlia and suggested she might have depression. As Tahlia was still grieving the marriage break-up of her parents back in April 2021, both Christie and her daughter considered this could be a contributing factor to Tahlia’s deteriorating health, not knowing that Tahlia’s health would decline even further in the upcoming weeks.

Studies have associated more than 200 symptoms with long COVID, which has made it difficult for the medical profession to diagnose and treat it. This is complicated by the fact that the condition often has a relapsing and remitting pattern.

“I kept pushing through and kept going to school, even though my head felt so tired a lot of the times, that I had to rest it on my desk. It was like somebody was pushing it down,” Tahlia remembered. “But then I thought: you’re young and fit; you can’t feel like this!”

The morning of the netball final in September, Tahlia woke up and could barely drag herself out of bed, but she was determined to play in the final as that was what she and her teammates worked towards all year and it was very special. While she made it to the game, she wasn’t able to play, which might have been a good thing in hindsight as some research shows that exercise while having long COVID could exacerbate the symptoms even further.

“Tahlia’s team won and she stayed to celebrate, but the next day she couldn’t even get out of bed,” Christie said. “She was bedridden for two months with fatigue, sensory overload and inability to process information and still had a chesty cough and runny nose.”

Christie decided to take Tahlia to the Emergency department at South West Healthcare where she was seen by a young intern, who, after a 6-hour complete check (including depression interview and blood test), diagnosed Tahlia with long COVID – chronic fatigue.

“I am so grateful to this intern and was so happy that he finally made sense of the different symptoms I had over the last 3 months and that it wasn’t in my head,” Tahlia said. “I was also very relieved that my heart was fine and that I didn’t have cancer, which runs in the family.”

Although the news was positive in some ways, Christie and Tahlia were told that they might have a long 12 – 18-month struggle ahead of them as, what was becoming clear from early studies was that, people experience wide differences in their long covid symptoms, so treating this condition is an exercise in personalised medicine: no single approach will work for everyone.

“We had to do a lot of our own research to see what treatments were out there, that could work for Tahlia, but we were also very fortunate with the support we received from local health professionals (GP, naturopath and osteopath) and Mercy Regional College,” Christie said.

“The lack of understanding about how debilitating this illness is, is the hard part,” Tahlia said. “Often people would suggest to just go home and have a nap. If only it was that easy,” Tahlia said.

A coordinator at Mercy Regional College was very understanding about Tahlia’s condition as his wife had chronic fatigue syndrome, which has similar symptoms to long COVID, and he brought his wife in to have a talk to Tahlia. “I found a kindred spirit, who understood completely what I was going through, validated how I felt and accepted me for who I was, which made me also accept my new me,” Tahlia said.

The coordinator would also talk to the teachers to work out a schedule (one day off a week to recover physically and mentally), which took away the stress and pressure and meant Tahlia and Christie could focus on finding ways that would help Tahlia’s recovery.

“Mum and I found some treatments that have really helped me with my recovery, but they might not be right for everyone,” Tahlia said. “We didn’t want to resort to any medication but worked on a healthy and balanced body and mind, which included mindset coaching and post-viral fatigue education/program delivered by exercise physiologists.”

After an 18-month journey Tahlia feels she has almost found the right balance and is positive again about the future. She is even looking at spreading her wings overseas and taking on a new, exciting adventure to leave the struggles from the last 1.5 years behind.

“It has been tough, but I feel very lucky that I had a great support network in my mum, my friends and health professionals that believed me,” Tahlia said. “Long COVID is an invisible condition that requires recognition and understanding as you don’t know what goes on behind closed doors or inside somebody’s mind or body.”

Christie is very proud of Tahlia and they both believe they were meant to go through this for a reason.

“We’ve learned a lot along the way giving us an opportunity to share our experience and let others know they are not alone and that there is help out there,” Tahlia said.

 

For more information on long COVID, you can visit Long COVID and post-COVID symptoms | healthdirect or you can contact the Timboon Clinic on 5558 6088 to make an appointment with one of our GPs.