My cheeks hurt from smiling so hard. Standing in a blue dress and pink crocodile heels, sandwiched between my friends, we posed for pictures – a group of four bridesmaids huddled around one beautiful bride. Hot from the sunshine and the bodies surrounding me, and breathing a heady mix of perfume and flowers, I felt joy fizzing in my stomach. A feeling that six months prior – as I lay sobbing on my bathroom floor, dark thoughts spiralling – had seemed forever out of reach.

As I curled up on those cold bathroom tiles, the idea that come spring I’d be standing tall – feeling beautiful, hopeful and alive at a wedding – seemed an impossible dream. I was having thoughts of suicide for the first time in my life. Something I never would’ve experienced if it wasn’t for the mental and physical impact of long COVID (also known as Post-COVID Syndrome), which I’ve been dealing with for just over two years now.

When I first caught COVID in May 2021, like most healthy people, I wasn’t worried. After a couple of days fighting a fever and a cough, I was weak and nauseous but functioning – and assumed I’d return to normal soon. At that stage I knew very little about long COVID and had no idea that the mild fatigue that lingered post-infection was a warning of what was to come. So I ignored it.

the writer pictured as a bridesmaid with a bride and three otherspinterest icon
Copyright - Liz Greenhalgh Photography

Instead, I returned to my old routine of long hours in my finance job, socialising, and daily Pilates. But as the weeks went by, the creeping tiredness became harder to brush off.

I did little things to compensate at first; taking a bath instead of a shower to avoid standing, getting the bus to work rather than walking, and cutting back on exercise, before abandoning it entirely. But as the exhaustion worsened, and as weeks turned to months, the adjustments I was making to compensate became more intrusive. I began avoiding social situations unless I knew there was a guaranteed seat, before deciding to stay home altogether.

When navigating the office became too much, I started working from home too – initially at a table, before switching to my bed. My boyfriend, who I’d been with for ten years, watched me retreat from the world, and quietly picked up my share of the housework. Given my priority back then was keeping my job, most days I barely had the energy to talk to him – let alone show up for him in any kind of romantic capacity, and although he never once complained, I know it was hard for him too.

For a while, the slow pace of my decline allowed me to deny the reality of my situation until one day in early September 2021, I woke up and found I was too exhausted to get out of bed. I’d heard about long COVID because my good friend Hannah had been living with it since March 2020, but I had never seriously considered it for myself – until then.

It took that experience of immobilising fatigue for me to realise that this wasn’t in my head, I wasn’t imagining things, something really was wrong. I called up my GP who, after a few short questions about my symptoms, diagnosed me with long Covid.

What is long COVID?

Long covid symptoms range from fatigue and brain fog to dizziness, gastrointestinal disorders, respiratory symptoms, and more. For me, the worst symptom is post-exertional malaise (P.E.M) – an exhaustion that can set in anywhere from hours to days after activity. For me, any of the following can trigger P.E.M: watching too much television, laughing, talking, singing, moving my body too quickly or for too long, emotionally-charged conversations, physical pain and sexual pleasure (go figure). P.E.M is a kind of ‘tired’ that’s hard to define if you’ve never experienced it, at its worst, it’s ‘tired’ in the sense that even if my house was on fire, I would be too ‘tired’ to get out of bed.

And that’s how I spent most of September 2021: lying in bed, unable to work, listening to audiobooks, and praying for my energy to return. I hadn’t really explained my illness to my friends or family (heck, I hardly understood it myself), and so it was a terrifying, lonely time. Like many long COVID sufferers (there are 1.9 million of us in the UK), I had very little support in the medical sense either. All my GP could offer me was a phone call from a friendly nurse who told me to rest and that ‘things would get better with time’, and sent me some emails on fatigue management.

I don’t know what I would have done if I didn’t have Hannah, who at that point had already spent a year living with the condition, and knew exactly what I was going through. It was Hannah that I turned to after my disappointing interactions with medics, and Hannah who sat on the phone with me for hours sharing her hard-earned wisdom and helping me come to terms with my condition.

a selfie of the writer in bed with a neutral expression taken on a day where her long covid fatigue left her unable to get uppinterest icon

Katya pictured in September 2021, when she was struggling to get out of bed

Katya Sikuade

As time went by my fatigue and brain fog did start to slowly improve. By December 2021, I was back to working full time from home. I began experimenting with short walks at the start of spring 2022, and by August 2022 - almost a year after my diagnosis - if I was careful, I could do an hour of gentle walking, work from the office once a week, and see friends on weekends. But although I was making progress, I was nowhere near recovered and I still grieved my ‘old self’.

I developed anxieties around my body, as my muscles wasted from lack of exercise, and I began avoiding mirrors. Previously, I had taken real pride in my appearance – I was one of those women who wakes up an hour early to indulge in a ludicrously expensive and complicated skincare and makeup routine – but long COVID saw me relinquish that too. A good day was one where I washed my face.

As for sex, I avoided intimacy with my partner out of fear it would trigger P.E.M and I worried about whether our relationship would survive, as it became less boyfriend-girlfriend and more carer-dependent. I couldn’t speak these fears aloud to him in those days, and I know he was hurt and confused when I’d pull away from him. My relationship with others suffered too, as I didn’t have the energy to keep up with them, and I lost some friends forever during that year.

Still, I clung to the fact that I was making progress and told myself that if I could just wait it out, my health would return and everything would go back to how it was before.

Feeling let down by my body

Just as I was starting to see a light at the end of the tunnel, in September 2022 I caught COVID again. There was no gradual decline this time, it was like being hit by a bus: a crushing fatigue came out of nowhere and I lost all the progress I’d made that year, seemingly overnight. My mental health plummeted as I found myself alone again, in bed, struggling to move. This time, the realisation that long COVID wasn’t going to be a memory any time soon filled me with a pulsing rage.

I seethed at the unfairness of it all and directed my anger towards the body that I felt trapped inside. It was as though my physical and mental self had splintered apart and were at war with one another.

Lying on my bathroom floor a month into my relapse, I wrestled with an intrusive thought of ending my life, one that saw me fantasise about dragging my body out onto the balcony and hurling myself over the edge. I even spent a while trying to calculate whether or not I was high up enough to achieve that desired ‘result’ of not existing anymore, before, thankfully, coming to my senses a few hours later. I had a realisation that will seem obvious to healthy minds, but which, thanks to my brain fog and depression, felt like an epiphany: I realised that if I destroyed my body, there would be nowhere for me to live. Something in me, something kind and protective, screamed ‘no!’ at the thought of that. It was a moment that completely changed my perspective on both life and long COVID.

I’d always thought of my mind as a ‘driver’ and my body the ‘vehicle’ that carried me around, but contemplating the destruction of my body made me realise… that that’s not how it works. My body isn’t a faulty car to be disposed of. It’s me, and I am sick.

"My body isn’t a faulty car to be disposed of. It’s me – and I am sick"

I realised then that I needed help, and that I probably wasn’t able to help myself without opening up to those closest to me, letting them know how bad things had gotten. Each kind word and friendly face energised me, and gave me the strength to keep asking for help, and as I emerged from the darkness, I thought more about the people who were going through this without the same level of support. It inspired Hannah and I to start a podcast about our experience of long Covid, Bounded Energy, in the hopes of bringing comfort to fellow sufferers.

Reconnecting with people in my life made me think of the future – true friends hadn’t forgotten me while I lay in bed. There were dinners, parties, weddings they were expecting me to attend, and I needed to show up for them. Beyond that, creating the podcast forced me to engage with the current research into long COVID, something that continues to fill me with hope. With over 65 million people affected globally, the financial incentive for pharmaceutical companies to find a cure means that over $1bn has been invested in research so far, with numerous clinical trials happening right now looking at treatments.

With renewed faith in the future (and hours of talking therapy), I re-evaluated my relationship my body. The slave-driver/slave relationship had to end – I needed to find a way to reconcile myself with my injured body. I discovered yoga for long COVID, massage guns, physical therapy, and became a disciple of Sonya Renee Taylor (if you haven’t read The Body Is Not An Apology, you should). Fancy moisturisers once again made their way into my shopping basket. After all, I’m convinced that we’ll see effective treatments in the coming years, and I want to be in the best shape possible to make the most of my life once that happens.

the writer, katya, standing on a beach and smiling wearing a wooly hat and jacket as it is a cold december daypinterest icon

Katya Sikuade

I also had vulnerable conversations with my partner about my anxieties around intimacy, and these have only strengthened our relationship. I remember one instance when I declined a kiss, saying ‘I can’t, I’m tired’ and he looked hurt and said, ‘I don’t understand, what does that mean?’, and I suddenly realised that, in his eyes, I was just avoiding him. I reached for his hand, and smiled and explained, "Right now, ‘tired’ means I can't breathe properly, and I’m light headed and nauseous, my legs feel like they may give way, and I’m feeling very emotional and like I might cry". And he said, "Oh, okay. That makes sense."

Moments like these, where I turn towards – instead of away – from him has meant that all the exchanges that would have previously pulled us apart, have instead brought us together. It’s also enabled a more profound physical intimacy, because we take things slow (and often pause while I wait for my heart rate and breathing to calm down), which has enabled me to find a way to enjoy sex again. We just have to pace it, which, it turns out, is seriously sexy.

I’m living in the slow lane these days, but people swing by and keep me company regularly, and I’m often happy. There are days when I have the energy to take a walk or see friends, and other days when all I can do is move from my bed to my desk and back again. On these days, I do bed yoga, and take comfort in knowing a good day is around the corner.

Like many long COVID folks, I’m afraid of reinfection and relapse, but I know that if it does happen, I won’t be dealing with it alone. There are friends and families with warm, loving arms just a phone call away, should I ever find myself back on that cold, hard bathroom floor.

You can listen to Bounded Energy on Spotify and join the community on Instagram

This article is not intended to be a substitute for professional medical advice or diagnosis. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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