It's been 2 years since my positive test, yet I'm still living with long Covid

My life has been humbled by a single word in a text message: positive.  

 I caught Covid-19 in October 2020 at 19 years old.

While working as a Freshers Representative for Durham University in my second year, I came down with a sore throat and persistent cough, so I took a PCR test. I was living in a seven-person student house.

This was before vaccines were rolled out, or any kind of group immunity.  

At first, I naively assumed my youth would protect me from the worst of the illness. But soon, my itchy throat, fever and cough turned into a full-body breakdown.   

It was a blur of hallucinations, wheezing, coughing up blood and irrationally setting 10 alarms each night, hoping one would ensure my depleted body would wake up the next morning.   

I spent a lot of my isolation convinced I wasn’t going to make it through, believing phone calls home could have been my final conversations with my family. I never told them how bad it was, partly because I didn’t want to worry them and partly because I couldn’t find the words.  

I tried to attend university contact hours on Zoom in bed while drifting in and out of consciousness.

Halfway through my isolation, I started coughing up blood and called 111. After being told to get to the emergency department within the hour, I was then left waiting outside in the cold for 45 minutes.

I could barely stand for a few minutes, and battled to keep myself upright. A doctor eventually just checked my blood pressure and heart rate and told me to go home.

Even after the 14 days of isolation, my lungs felt like they were on the verge of caving in and I drifted about in a slightly suffocated trance. 

I was told repeatedly by medical professionals that because I was young, I was going to be fine, so I started telling myself that I had no excuse to slow down. I tried to attend lectures and seminars to stay on top of my snowballing workload. 

Eventually, a month later, I went to the GP where I was given antibiotics for a secondary lung infection.

But, even after the five-day course of medicine, I was still painfully wheezing as I tried to lug my fatigued body up one of Durham’s many hills. 

In the months following my positive Covid result, a normal day for me would be my heart frantically pounding after any flight of stairs or walking up a slight incline – even just standing up could bring it on too.

Extreme fatigue resulted in words blurring as my vision would erratically lose focus and become double. Ringing in my ears would dull my hearing.

By the end of every day, I would feel utterly depleted, even if I spent it trying to work from my bed.  

Any time I went to a GP, they simply had no idea what to do, as medical tests didn’t reveal any ordinary diagnoses and my vast display of symptoms raged on.

This included things like my left arm or right leg going completely numb for long periods of time or experiencing the occasional pseudo heart attack as severe shooting pains in my chest would spread to my arms, neck, back and stomach.

So it was unsurprising that my NHS app showed that I’d had symptoms of 19 different health conditions and I had 52 consultations in around nine months.

And it wasn’t only my physical health that was affected – my mental health plummeted too. 

Hearing people cough would leave me gasping for air because I’d feel like I couldn’t breathe, and I often found myself fearing going to bed because I’d be haunted by the memories of my isolation.

I would feel so uncontrollably panicked by my extreme symptoms that the only way I could relax was by having to repeatedly make peace with the thought of dying.

To sum up the next two years: my thyroid function was unstable, I was sent to have an MRI to rule out a potential brain tumour and my palpitating heart narrowly escaped being diagnosed with a heart condition called postural tachycardia syndrome.

But it was around six months after that first positive result that I was first introduced to the term ‘long Covid’. Four months later, I was referred to a long Covid Clinic – and then in September 2021 I received a diagnosis.

I went through the stages of grief. At first, I was in denial that I had long Covid, because the thought that Covid was still part of me felt too terrifying to accept. I was angry at my body for letting me down when it was supposed to be fit and healthy.

I was also utterly miserable, watching all my friends live their typical student lives, while I had to limit the amount of time I was out of bed. I became dissociated from my body, feeling that it had been hijacked by this illness that had forced the world into a dystopian lockdown.

I started six months of NHS rehabilitation, with fortnightly appointments in the hospital where I was quite literally taught how to breathe again. This involved gradually building up the habit of pushing my stomach out as I breathed in to force air into the bottom of my lungs so they could work more efficiently. All aspects of my daily routine were adapted to assist my recovery.

This included rigidly setting a time I would sleep every night and wake up every morning, ensuring my diet was as nutritional as possible and that my exercise followed the postural tachycardia syndrome rehabilitation programme of horizontal exercise like rowing, swimming or cycling.  

Throughout this time, I continued to struggle with my mental health, having horrific nightmares and insomnia. 

It took around a year and a half before I finally started to accept that my formerly sporty, active and healthy body was not the same as the one I currently live in. 

Gradually, I started approaching my case of long Covid as a complete mental and physical burnout and organised sessions with an osteopath, a health coach and a homoeopath, and started an 11-week course of cognitive behavioural therapy (CBT).   

The osteopath helped release the ongoing fight-or-flight stress in my body, the health coach taught me how to take on the responsibility of caring for a chronically-ill body, and the homeopath gave me various medications to try to naturally rebalance all of my hormones.

The CBT sessions helped me overcome the anger and misery I felt – which were manifesting in self-destructive behaviours – so that I could focus on recovery and acceptance.  

Somewhere in the midst of all these appointments, I finally managed to ground myself again.  

Today, I still have to be cautious of noticeable symptoms on a daily basis, as my heart often races and palpitates, dizziness is my constant state of reality and I have to continuously pace to monitor my chronic fatigue.  

It was only a few days ago that I found myself in A&E because I endured stabbing chest pain and a numb left arm for almost 24 hours. These symptoms were once more just attributed to long Covid. 

But, I’m no longer controlled by my condition. In the last year, I graduated from university, obtained a Cambridge CELTA qualification and an NCTJ. I have travelled, exercised, socialised and lived.  

I can’t be as sporty, social and busy as I’d like to be as a 21-year-old, but I have learnt how to live in my new state of reality.  

As with anything, you don’t realise what you take for granted until you are no longer able to do it anymore.   

I have been told by doctors that it could take a few years for my body to process the trauma it has endured, as it will mentally.  

The thought of being hit by Covid again terrifies me, but for almost a year now, I have worn two lotus pendants around my neck.

The lotus flower is often recognised as a symbol for rebirth, and the pendants remind me of what I have survived.

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