Cork woman: I probably had 25 Long Covid symptoms at one point...

AROUND 114,000 people in Ireland have had Long Covid or will experience it in the future – according to research conducted by the Oireachtas.

“This is a massive issue that is coming down the pipeline,” says Long Covid sufferer and advocate, Tanja Buwalde, “because somewhere between 10% and 40% of everyone who has Covid goes on to develop Long Covid.”

Tanja, from Crosshaven, caught the Covid-19 virus in March, 2020, while living with her family in Cuba. It was the same month in which the World Health Organisation (WHO) declared the outbreak a pandemic. Tanja’s initial symptoms were thankfully mild in comparison to what others were going through.

“For a day or two, I lost my senses of taste and smell, and had diarrhoea. I had chest tightness, like an elephant was sitting on my chest,” says Tanja.

“And I just felt really tired and weak for about a week. That was it. I didn’t have to be hospitalised. I didn’t have a temperature or a cough. And then I got ‘better’ and came out the other side, or so I thought.”

Two months later, Tanja began having symptoms again, but put it down to stress.

“I was breathless, losing my breath walking upstairs. I just put that down to being unfit and not being able to exercise as we were all locked indoors during the lockdown.

“I had lost my business and was generally under a lot of pressure, so I was putting the sleeplessness and the anxiety down to stress as opposed to Long Covid,” she explains.

It was only when Tanja and her family moved back to Cork in August of that year that her symptoms exacerbated.

“I think I probably had about 25 symptoms at one point, including fatigue, lung problems, gut problems, brain fog. And that’s when I started seeking help.”

At the time, Long Covid was just beginning to be spoken about internationally, but there were no diagnostic guidelines. So, armed with as much research as she could find, Tanja approached her GP looking for help. “I’ve got a good GP who knows me well and took me seriously,” she says.

“They did all the tests I asked for, and that made a big difference... being listened to. But there was no Long Covid clinic to refer me to. They hadn’t even thought about setting them up yet. So I just tried to figure out as much as I could myself.”

While researching online, Tanja came across the Long Covid Ireland Support Group on Facebook. This has been a real support to her during her battle with the illness.

“Because there’s very little access to care for Long Covid in Ireland, that support group is really important,” says Tanya.

“It’s somewhere you can go to find help and support. Psychologically, you can become isolated in this disease by yourself and over time, the longer you have the disease, the less people listen to you. They’re like ‘oh my god, she’s sick again’, ‘oh my god, she’s always tired’, and just having a community of people who understand those issues and who are going through the same thing is of massive psychological benefit.”

As part of her recovery research, Tanja has learned to speak semi-fluently in the language of micro-nutrient deficiencies and gut microbiomes. She’s also fascinated by the role inflammation plays in Long Covid.

“A lot of people in the Long Covid community are long distance ultra marathon runners and all these mega athletes, which was surprising,” she says.

“What they didn’t realise is that their bodies had high levels of inflammation from exercising quite heavily, and the existing inflammation in your body is a big issue when it comes to getting Long Covid. So people who have inflammation in their body and have metabolic inflammation - which most of us don’t even know we have, and doctors don’t talk about - this can lead to the right conditions for Long Covid.”

Doing her own research and while forging her own path through this confusing illness, Tanja has encountered many people with Long Covid across the country who feel they aren’t being listened to.

“I’m very lucky that I’m big and bold enough to advocate for myself, but not everybody is able to do that,” she says.

“And that’s a real issue within the Long Covid community. They don’t have understanding medical professionals who can really help them.

“I know people who have been constantly gaslighted by their doctors, or been told to do graded exercise, which is absolutely, categorically, not indicated with this illness. And yet some GPs and, indeed, some consultants, are still suggesting it.”

While some symptoms now come and go, depending on how stressed or tired Tanja is feeling, the one constant has been fatigue. This has had a huge impact on Tanja’s social and family life.

“You can’t plan anything, because you never know how you’re going to feel,” she says.

“If you do accept invitations, often you’re canceling them last minute because you don’t have the energy to attend. I have two young kids and it impacts them enormously to have a mom who isn’t able to go out and play, or run around the garden because I’m just physically not able. The post-exertional malaise (PEM) is pretty significant with Long Covid.”

Tanja uses a phone metaphor to help people close to her understand what she’s going through. “A normal person, like a phone, will go all day long, and slowly but surely their battery runs out. They go to sleep and the next morning they’re recharged back to 100%,” she explains.

“But if you have Long Covid, even though you’ve charged yourself overnight, sometimes your battery only charges up to 40%. Maybe 50% or 60% on a good day.

“So then, by the time you get to 11am you’re already absolutely wrecked and you have to go back and charge your battery. That means resting, taking it easy, cutting out activities, etc.”

Looking ahead, Tanja believes there are a few basic things that need to be done to help Long Covid sufferers.

“One is detailed diagnostic guidelines and training for GPs. The second is the setting up of multi-disciplinary Long Covid clinics. That’s going to be a challenge because the HSE is under-resourced, underfunded, and it also structurally doesn’t work as a multi-disciplinary organisation.

“Long Covid affects all the organs’ multi-system, and therefore you need a bunch of specialists involved in someone’s care.”

To deal with her illness, Tanja has had to become her own experimental doctor. She keeps notes of her activities, her food intake and supplements, what worked for her and didn’t work for her.

“You have to begin to understand the disease on an in-depth level yourself in order to be able to get out of this,” she says.

“I know from some of my Long Covid friends in other countries, it’s very different. But in Ireland, you really do have to become an expert in your own health. Otherwise, you just can’t get the help you need.”

If you think you may have Long Covid and would like some support, look for the Long Covid Ireland Support Group on Facebook.