‘It must be something else.’ I didn’t lose my sense of taste or smell. Maybe it was all in my head.’: Woman shares ‘Long Covid’ journey, says ‘I’m celebrating the small wins’

More Stories like:

On March 24, I was on a video call with a friend when I suddenly felt the familiar waves of dizziness and nausea usually signifying the arrival of the flu. We were in the first couple of days of a nationwide lockdown in the United Kingdom due to the COVID-19 outbreak. The news was full of stark warnings and what symptoms to look out for. ‘Uh oh, here we go,’ I thought. I had no idea over 8 months later, I would still not have recovered.

The first few weeks that followed included a raised temperature, though not quite as high as in some cases, bad headaches, dizziness, nausea, aches, and pains all over my body. I experienced a racing heartbeat, brain fog, and above all, almost debilitating fatigue. There were probably other symptoms at the time, but they were so varied and changeable almost 9 months on, I can’t remember them all. If I had more energy or foresight, I would have kept a diary of some sort, but living alone at the time it was often hard enough to just make sure I had enough food and water each day.

At the time, we were told the main symptoms, other than high temperature, were a persistent cough and loss of sense of smell or taste. As I had neither, I assumed I had just picked up a cold, or something from my travels, as I had returned from South America a week earlier. A set of inconclusive blood tests later, and no test available at the time, my doctor told me I could, in fact, have Covid. A friend of his was still ill 3 or 4 weeks after catching it. Flash forward to today, she is still unable to work and a fellow Long Covid sufferer. As I wasn’t on death’s door, there wasn’t anything else he could do for me other than advise me to ‘rest as much as possible and hopefully you’ll be better in a week.’

Courtesy of Sarah Matthews

A few more weeks passed and for the most part, my symptoms did not improve. On the odd day they did, I invariably overexerted myself with a herculean task such as changing my bedding and ended up bed bound for another week or more. Eventually, someone recommended I call the NHS coronavirus hotline for advice as I had been unwell and unable to work for over a month. The man I spoke to very confidently told me if I’d had Covid for this long, I would either have fully recovered or been hospitalized by now, and it must be something else. I went back to the GP for more tests inconclusive tests. At this point, I knew there was something very wrong with me, but there seemed to be no explanation as to what it was. I had a creeping feeling maybe it was all in my head.

It wasn’t until mid-May, nearly 2 months into my rollercoaster of symptoms someone sent me an article by Paul Garner, a professor of infectious diseases here in the UK who had contracted suspected Covid in March and was still feeling the effects 2 months later. His account almost exactly mirrored my experiences. I finally felt like I wasn’t going mad, I wasn’t making it up, it wasn’t all in my head–this was real and it was happening to others too. I felt an immense amount of relief and validation, although the realization this was an unknown side effect of a virus discovered less than 6 months ago didn’t fill me with the hope I would find a ‘cure’ quickly. But at least I wasn’t alone in my suffering. I subsequently found Facebook groups filled with tens of thousands of others just like me.

Courtesy of Sarah Matthews

During the first few months of my Long Covid journey, I was living on my own, fending for myself. Aside from the obvious issue of loneliness during the nationwide lockdown, when I was unable to leave the house or have any visitors, it meant that even on a very bad day I still had to force myself to get out of bed to take care of my own basic needs. On some of those days, even getting to the bathroom seemed like an insurmountable task. 

It’s hard to describe the fatigue Long Covid brings to someone who has never have the misfortune to have suffered a debilitating illness. Previously, I thought of fatigue as the feeling you get after extreme exercise, or when you’re so crushed by jet lag you can barely function. Covid fatigue is waking up feeling thirsty, but not having the energy to reach over to the water on your bedside table, so you just go back to sleep instead. Covid fatigue is not being able to stand up in the shower or use your hands to help wash the shampoo you’ve somehow managed to apply out of your hair. Covid fatigue is having to lie down flat because even sitting propped up on pillows is too much effort. 

4 months into my battle with Long Covid and living in near-total isolation, lockdown restrictions were loosened. Unfortunately, during that time, I had not seen any improvement in my health and I was starting to decline more rapidly. Clearly, I was no longer able to look after myself and so I made the difficult decision to get help. I moved in with my mother to be looked after full time. 

Courtesy of Sarah Matthews

When I arrived at her house, my resting heart rate was 92 and for most of my waking hours was well above 100, even when lying down. I couldn’t even sit propped up on the sofa for a couple of hours each evening to watch the TV. I could barely manage to get myself up the stairs, and talking to another person was exhausting. Over the next few months, I completely surrendered to the illness and to total rest. I cut out processed foods, dairy, sugar, and basically anything fun from my diet, or rather, my mom did, as I certainly wasn’t doing any of the cooking. I spent almost all of my time in bed resting while my mum cared for me. Slowly, I started improving. The most immediate sign of this was my resting heart rate, which dropped by about two points a day until it came to around 70, where it stayed. Gradually, I was able to sit up in bed, hold conversations for longer, and do a little more. 

After a couple of months, I started being able to spend a little bit of time each week at my own house and now can manage 4 days fending for myself before I have to come back to stay with my mother for a few days to rest again. I am gradually able to manage more mentally taxing tasks, such as writing this article, although the difference between now and my old self is still significant. In a previous life, I worked writing for a legal publication, and an article this length would have taken a few hours to write. This one has taken me over a week, as I am only able to concentrate on it for a short amount of time with the need for frequent breaks.

As I’ve mentioned above, Covid fatigue isn’t just physical. It can be mental too. I’ve never experienced the levels of mental exhaustion I’ve had since becoming ill. I struggle to concentrate on particularly complex plotlines in films or TV and for a long time, I could only manage shows or films I had seen before. I find reading tiring and have thrown myself into audiobooks as a less taxing alternative. Sometimes my brain becomes so tired, all I can manage to do is stare blankly at the wall next to my bed. Anything else makes me feel overwhelmed and unable to cope. The closest experience I can relate it to is cramming for school or university exams and getting to the point where your brain literally cannot process any more information but this is on a much greater scale.

Courtesy of Sarah Matthews

8 and a half months on from my first symptoms, I am still unable to live independently, unable to work, and unable to do most of the things which were staples of my pre-Covid life. I am slowly improving still, but the changes are measured across months, rather than days. Doctors still know very little about Long Covid: what causes it, why it happens to some and not others, and most importantly, what they can do to help it. We now know that Covid can cause inflammation of the major organs including the lungs, heart, and liver, and it’s unsure whether it will lead to long-term or permanent damage. For now, we are recommended to not push ourselves physically, which could put more strain on our already struggling bodies. The main advice I have received is still just to rest, and so that is what I am doing until my body tells me it’s ready for something more.

So, what would my advice be to fellow Long Covid sufferers? First of all: REST! It’s becoming very clear this is not something you can just ‘push through,’ and in my experience, it can actually make it worse. Secondly, try to let go of as much stress, anxiety, and anger as possible. Yes, it is unfair this can strike you down when you could have previously been healthy, fit, and young. No, focusing on how unfair it is or comparing your life to others will not make you feel better, and to be honest, it is never helpful. 

Courtesy of Sarah Matthews

In battling Long Covid, I have found a positive mindset, and the ability to reframe the problem is key. You can’t go for that 5-mile run you’d usually do with your friend? Okay, what can you do? You could start watching that show people have been nagging you to start for ages? Read that book you’ve had on your shelf for 3 years but ‘never had the time’ for? FaceTime that friend you keep meaning to catch up with? We usually feel pressure to live our lives at a fast pace, rushing from one thing to another, wondering if you’re working hard enough, seeing friends and family enough, have enough interesting hobbies, posting cool stuff on social media enough.

If there is any positive to Long Covid, it gives you TIME. It forces you to take a step back and make time for yourself. A day watching Netflix isn’t wasted, it’s a day of you and your body working hard towards recovery. So let yourself slow down, appreciate the little things. Enjoy the sound of the trees, have a look through some old holiday photos, listen to a good podcast. Think of this as probably the only time in your life where you will have a month, or 3, or 6, or even more, to be selfish and to do things for YOU. When you look back, you won’t see time wasted. You’ll see how well you looked after yourself when you needed it most. 

I’m still a long way from my former self, from working a high-pressure job at a large accountancy firm, from spending time with friends and galivanting on exotic adventures whenever I could. For now, I’m working every day to look after my body as best I can and celebrating the small wins. When I’m able to get back to my old life, I will be ready and I will appreciate it more than ever.”

Courtesy of Sarah Matthews

This story was submitted to Love What Matters by Sarah Matthews. You can follow her journey on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories like this:

‘My daughter called me from a party. ‘Mom, I’m violently throwing up. I swear I’m not drinking.’ She went from asymptomatic to waking up at 3:00 p.m. every day.’: Mom details daughter’s journey with COVID-19

‘I thought it was allergies. It started with a dry cough and the slightest tickle in my throat. I didn’t think twice.’: Woman explains how to navigate coronavirus diagnosis while battling anxiety

‘I’m not scared of getting the virus. I probably won’t die,’ they say. I survived, and now I’m battling post-viral syndrome.’: Woman diagnosed with Myalgic Encephalomyelitis after COVID-19 recovery

‘I knew the test was positive before they even called. I’m FaceTiming him from the other side of the house, just to tell him I love him.’: Woman asks for prayers after healthcare worker husband’s COVID-19 diagnosis

SHARE this story on Facebook with family and friends to let others know a community of support is available.

 Share  Tweet