Tracey Spicer has been sick for 204 days. Here’s what she wants you to know.

Here's what a typical day in the life of award-winning journalist, author, and broadcaster Tracey Spicer looks like: She gets up and meditates for half an hour to get some more oxygen into her blood. She does this in order to stand up and for her body to move effectively without crashing.

Then she'll make herself breakfast and consume about 15 different supplements. This all takes about half an hour because she's moving around in a wheelchair and she has to do things very slowly and deep-breathe before and after, so that she doesn't impact her body too badly.

Then she lies down on the couch and watches TV for about an hour to build up her strength again. Afterwards, she works for an hour on the computer. Then she'll do another meditation session or perhaps take a bath or a shower, which is physically taxing. After her shower or bath, she'll lie down for another half an hour to recover from it.

It will take her about an hour to get lunch ready and she will need to lie down afterwards again. The afternoons are usually when she has medical appointments, so she attends those and then comes home for another lie down and meditation session or some yin yoga for about 20 minutes.

Her husband and kids will make dinner, and they'll all eat together. But having conversations with people is exhausting so she can only do it for about 45 minutes over dinner. Then she'll lie down and watch TV for another two or three hours before going to sleep.

The sleep is not restful, either. It hasn't been for 204 days - Tracey is a sufferer of the dreaded Long COVID.

Long COVID means your symptoms have persisted for longer than 12 weeks after initial infection.

"I got COVID on the second of January this year and it hit me like a freight train," Tracey explains on No Filter. "I was bedridden for two weeks with countless symptoms. It was as if an army was marching through my body attacking each organ in turn. I've really never experienced anything like it."

Listen to Jessie Stephen's full interview with Tracey Spicer on the No Filter podcast below. Story continues below.

For those first two weeks of having COVID, Tracey's symptoms were already pretty severe.

"This will probably resonate with a lot of people who got the Delta strain, which is what I got earlier this year. I lost my taste and smell, I had the coughing, the crippling fatigue," she says.

"There was some unusual symptoms as well. I had tinnitus all the time - the ringing ears. Bleeding gums... Very early on, every time I could drag myself out of bed, I got chest pains and palpitations, as if my body was saying no, you've just got to lie down.

"I also had skin rashes, I had something called "small fibre neuropathy", which means you get a feeling like an electric shock in your extremities, and this kept happening to my right foot. It seemed as if it was having a go at different organs one at a time."

Tracey considered going to the hospital a few times, but ultimately thought that since she was triple-vaxxed, if she just lay down and drank a lot of water and ate vegetables, it would go away.

"I wonder whether this is something that predominantly affects women because traditionally we are the carers in society. I was more worried about passing it on to the teenage kids and I was constantly on the phone and texting them asking, have you got symptoms, are you okay, I hope I haven't passed it on to you. In a way, I put myself last," Tracey says.

Prior to getting COVID, Tracey was training for a four-day trek on Cradle Mountain in Tasmania and a 30-day walk through Sydney to raise money for a charity. She was the fittest she'd ever been. 

"That's why it was so weird that I got hit that badly with COVID," she explains. "But I was keen to get back into exercise because of the training regime. However, my body was telling me, go slowly, you just can't do this. Every time I tried to take the dog even for a five or 10-minute walk, my heart would start racing. So I did a few really gentle walks with the dog and gradually built up to about half an hour with her.

"And then honestly six weeks after I had Covid originally, I tried to do a reformer pilates class, which I've done for about 10 years. And I started feeling like I was having a heart attack - real stabbing pains in the chest. I pulled all the springs off the reformer machine and just pretended to do the rest of the class with everyone else. And then went home and lay down and thought, oh my goodness, I've done something terrible here. I don't know what I've done.

"That's why I'm pretty vocal about advising people to take it incredibly easy when it comes to exercise because your body's simply not ready for it."

Tracey went through a three-month phase where she saw five different medical people and allied health specialists a week, just trying to pick their brains.

"We're so fortunate to have Medicare and a relatively robust health system here in Australia, but unfortunately, a lot of the research is done overseas, and we are behind when it comes to Long COVID. In fact, one of the first GPs I told about this when I said I had Long COVID leapt back from me thinking that I was still contagious. I said, no, no, no, you're not gonna catch anything from me, it's long COVID," she says.

"I guess I'm very disappointed in the lack of government education campaigns when it comes to the medical profession because, I know they're exhausted; they've been through hell with COVID, but there's so many people who are suffering. I'm talking about my own situation [here in this podcast], but my heart goes out to younger people who have this, or people who've had longer chronic conditions for decades, because it must be utterly debilitating and frustrating being gaslit by medical professionals all the time."

Watch: Australian data reveals Long Covid sufferers are often younger, active and female. Story continues below.

Ongoing treatment for Long COVID does not come easily either.

"The medical system is set up for either life or death. It's not set up for chronic conditions. So the first thing they do structurally is rule out the most common ailments that cause these symptoms. They will send you off for a chest x-ray, for lung function test, to see whether there's anything obviously structurally wrong with the heart. But what the latest research is showing with Long COVID is it's creating micro-clots which don't show up on the usual tests," Tracey tells No Filter.

"So you've got all these incredibly frustrated people with Long COVID, who are trying to be taken seriously, getting a battery of tests. And if it's exhausting making a cup of tea, I can tell you I went to the other side of the city today for a hospital appointment, and that completely killed me. You go for all these exhausting tests, and then they find that there's nothing wrong with you or they think there's nothing wrong with you because it's not obvious structurally.

"However, I understand why the medical profession has to rule out some of the more serious, immediately life-threatening conditions... I've managed to find a few really good, progressive forward thinking GPs, who have given me five or six off-label low-dose medications that have helped about 10 to 20 per cent. And they're things like statins to help stop the chest pain and it has stopped the chest pain. Steroidal anti-inflammatories to give you a little bit of energy to be able to work a couple of days a week, just the simple things.

"Some of the antidepressants really help not because this is a psychological condition but because there's neurological impacts from Long COVID in your body and they help a little bit as well. But aside from that, some people are talking about cannabis oil and low dose Naltrexone. I haven't tried those, but really anything you can be given is relatively experimental. However, when you feel like this, honestly, you'll try anything."

View this post on Instagram

A post shared by Tracey Spicer AM (@traceyspicer)

As someone who has worked hard all her life, and who has a very enriching career, the neurological impact has been particularly intrusive.

"I got some really good advice from a colleague of mine - Sophie Scott, the health reporter for the ABC, she has been an absolute lifeline. She was talking about how you've really got to stimulate your vagus nerve and rest before and after you work to help with the flow of the blood to the brain cognitively," Tracey advises.

"So let me give you a very real world example of this. Yesterday, I had to undergo a battery of tests. And because I was standing up more than usual, the executive function of my brain was impacted and I did the most stupid things around the house. The porridge overflowed in the morning and I almost wrecked the whole kitchen bench. I left our garage door open. When I drove out of the house - I'm not driving very much it tends to really cognitively wreck me - for four hours! Anyone could have come in and robbed the whole house. I called one of our children the wrong name!

"This is the kind of cognitive stuff that happens. So then I actively did lots of meditation. Last night, I had a massive sleep, look non-refreshing sleep, but still had a massive sleep, and more meditation this morning. And that filled my cup enough to be able to write one chapter of my book this morning. So what you've got to do is focus on lying down and resting as much as possible before you have to do anything cognitively to refill that cup."

Speaking of cups, Tracey recounted what happened when she had a glass of wine with dinner recently, against her better judgement. She hadn't been drinking alcohol for the past six months because she'd been feeling so terrible, but since it was a special occasion, she decided a small glass of rose with her salmon couldn't hurt.

She was very wrong.

"The next thing I remember, it's three o'clock in the morning, I've got a very sore head, and my husband is looming over me in the bathroom, saying, oh my god, oh my god, oh my god, are you all right?" Tracey says.

"What had happened was I got up to go to the bathroom in the middle of the night. And I didn't realise that I have a very common manifestation of Long COVID called POTS, Postural Orthostatic Tachycardia Syndrome, which means when you go from lying to sitting or sitting to standing, or worst-case scenario, lying to standing, your blood pools in your legs and goes from your brain. Your brain forgets to tell your body to stand up and you just pass out and can crack your head.

"And that's what happened to me. It's seen by some cardiologists as one of the less serious heart conditions you can have. But you can actually die if you pass out and hit your head, and my husband found me pale and unresponsive on the floor. He said it took a good five minutes to get me to come to and he seriously thought I was dead. So it was a very, very scary moment."

Tracey is afraid that we will have new generations of people living with disabilities if nothing is done about Long Covid.

"We will have enormous labour shortages in the next couple of years. And we will have an overwhelmed health system where people simply cannot cope. I mean, look at what's happening in the health system now. There are so many people with Covid at the moment and they can't get enough staff," she says.

"And then you've got this extra layer of Long COVID and people living with chronic disease. This will have an enormous impact on our society in the next three to five years if nothing is done."

View this post on Instagram

A post shared by Tracey Spicer AM (@traceyspicer)

For those who think they might have Long COVID or who are in the aftermath and don't know what to do and where to start looking for help, Tracey has some sage advice.

"If you've had COVID and you feel like you might have recovered a little bit in the weeks or month after, that's fantastic. But keep an eye out after that for any of these signs: any unexplained chest pain or palpitations whether standing up or lying down, any unusual feeling of sickness or exhaustion, and they call it fatigue but it's more than tiredness. You actually feel cold-y and flu-y again, and you think you're coming down with something. But it's the old COVID symptoms coming back as part of Long COVID," she says.

"So whatever you had the first time, keep an eye out for that coming back because it's more than tiredness, it's sickness. Keep an eye out for tinnitus, the ringing in the ears. Also, sinusitis and rhinitis, so anything like hay fever symptoms, that can be your Long COVID feeling like it's coming back again. So they're the main thing.

"The other unusual symptom I had early on in my Long COVID journey was cystitis, because the organs that are affected certainly your lungs, everyone knows that your heart, your kidneys are really badly affected as well. So if you have anything that affects your kidneys, or your digestive system, any of your allergies start playing up again, you feel like you might start being allergic to gluten or sugar or something you were never allergic to before, that's mast cell activation syndrome, and that's part of Long COVID. So anything unusual, really keep an eye out for it."

Tracey advises doing some research on the Long COVID Facebook pages - one of the pages has started up a list of GPs who understand Long COVID around Australia.

"Find yourself a good GP who understands it. Try to get yourself to a Long COVID clinic; often people drop out at the last minute and you might not have to wait a long time," Tracey tells No Filter. 

"Just get the help you need and understand that you're not alone. There are people who want to help you and support you. We're here for you."

For more No Filter episodes, go to mamamia.com.au/podcasts/no-filter.

Feature image: Instagram.