“I have ‘long-term Covid’, here’s how it’s affecting my fitness”

For writer Jasmine Hayer having long-term Covid-19 means that every day is like walking through a minefield. Here’s how coronavirus is still affecting her movement, energy and lungs today. 

My name is Jasmine Hayer and I was one of the earliest people to contract Covid-19; I also have one of the longest-standing cases in the UK (not titles that I ever thought I’d hold, but here we are).I’m a 31-year-old life coach, ayurvedic health coach and the head of membership at a members’ Club in West London. For a large part of my life, I’ve been an avid yogi, have practised daily meditation and had no existing illnesses – so I think it’s fair to say I was a pretty fit and healthy person.

Yet, 10 months after having Covid-19, my stamina and strength is still affected. Doing one downward dog leaves me short of breath, with what I can only describe as feeling a ‘firestorm’ moving through my lungs. Despite the fact that I’ve been used to practising intense yoga and was even preparing myself for a yoga teacher training course, my health is not what it used to be. The same yoga poses that I used to perform with ease and for long periods of time, now leave me breathless and exhausted.

My flatmate and I both contracted Covid-19 on 14 March 2020. We experienced exactly the same symptoms at exactly the same time. The first week consisted of flu-like symptoms (yet oddly enough, no cough), a loss of smell and taste (which lasted for two months, much longer than I thought it would) and on day seven, the breathing problems began.

For eight long days, both my flatmate and I experienced intense breathlessness. It felt as though I had a clamp on my chest and my flatmate describes it as having something physically pushing her breath out to the top of her chest. When we discussed how it felt, we both agreed that we just couldn’t get enough oxygen – it was like being shoved underwater and at times we were gasping for air. 

I used meditation and yogic breathing to try to push my breath down to my diaphragm, yet 30 minutes later, it felt as though the virus was pushing that breath that I gained back up. I remember experiencing an out-of-body sensation; my emotions were suppressed, as though my mind and body defaulted into a survival mode while it worked tirelessly to survive. 

Both my flatmate and I were told not to go to the hospital since we didn’t have a continuous cough or fever.

It wasn’t until after three weeks of this that I took my first ‘normal’ breath. Alongside relief, came an outburst of post-traumatic stress disorder (PTSD): flashbacks, nightmares, anxiety and uncontrollable crying. It was as though all of my suppressed emotions and trauma were being released. I also experienced a baffling brain fog – it took me three hours to write a five-minute email – and I just couldn’t understand why.

After about a month, I began to feel much better and even began easing back into my old routine which included a gentle yoga practice. I felt normal again – only to realise that I was not, in fact, back to normal. On 2 May, I woke up gasping for air without any logical explanation – and it’s plagued me ever since. The clamp on my chest returned and I was shockingly short of breath; walking just 100m left my bodyfeeling as though I’d just run a 10k.

A plethora of baffling symptoms
Many times, I could barely walk around the house because each step I took made my lungs feel as though they were on fire and I was extremely short of breath. That meant for many months I was unable to go for a walk or even stretch. Last June, 10 minutes of stretching left me bed bound for a week.It was like my lungs were allergic to movement. I was stripped of my life: my active lifestyle, extroverted personality and simply being able to move.

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As a result, I lost my appetite completely, lost an extreme amount of weight, and had severe constipation and fatigue. I was so exhausted that I couldn’t even talk (although even if I did have the energy to speak, it would have triggered my lungs to relapse). I also began to experience irregular menstrual cycles (which previously, I would only experience occasionally due to stress). 

Other unusual symptoms of ‘long-Covid’ include: acid reflux, increased heart rate (including a higher resting rate), palpitations, insomnia, anxiety and depression.

Come June, I began to experience a rash all over my arms that lasted for many weeks. The rash was so itchy that it would bleed from scratching. It felt as though ants were crawling all over me. It was around this time that I discovered King’s College’s ZOE Covid Symptom Study had published research about other long haulers experiencing the same mysterious rashes.

What came next was an avalanche of negative thoughts, despite usually being such a positive person. I practise, study and teach meditation, so I’ve learnt how to disassociate from my thoughts and emotions. At first, I just observed the situation and thought that perhaps my negative thoughts were my frustration from being so debilitated – after all, I used to be an incredibly active person. However, my gut instinct knew that there was more to the change in my resilience. I’ve learned recently that studies have shown that the virus rewires our neurological pathways and can actually cause depression and anxiety. 

Eight months later
I thought I was finally healing; my lungs were noticeably improving and I was feeling optimistic and stronger by the day. Then on 22 November, I went for a long walk (at a snail’s pace of course), and felt ecstatic – the only symptom I seemed to have afterwards was a tight chest. Oh, if it had only been that simple. An hour later, the ‘firestorm’ started. It gradually progressed into a full swing ‘tornado’ sensation, ripping through my lungs with a sharp pain in my heart. It felt like I was dying; as though the life was being sucked out of me.

After dealing with this for many months, I’ve become conditioned to suppress my emotions whenever this happens, since fear only makes things worse. I dose up on ashwagandha, magnesium and Ayurvedic oils to calm my lungs, place one hand on my heart and stomach while repeating “you are safe”, “this will pass” and “we’re going to get through this”. It’s the most helpless feeling that I’ve ever experienced. The impact is devastating not only on my lungs, but also my mental health. The tornado gradually calms down but I’m always left with a permanent ‘firestorm’ in my lungs. It took one and a half months for my body to be able to walk for 10 minutes. 

Then came a severe wave of PTSD for two months, particularly the uncontrollable crying about 10 times a day.

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Relapses: a psychological hell
I describe ‘long-Covid’ as a science-fiction nightmare with a series of the most unexpected plot twists: the relapses.

My lungs felt (and still feel) like they’re attacking themselves whenever I move, which I described previously as the ‘firestorm’. Yet, the firestorm occurs an hour or more after walking or talking for longer periods of time (sometimes that’s 10 minutes and other times it’s 40). Therefore, I never know what’s going to happen.

After months of showing progress, I’m able to do a little bit of gentle yoga and a slow 30-minute walk. But then, I relapse again and the ‘firestorm’ (or at its worst, a ‘tornado’ sensation) returns to my lungs and I feel as though I’m dying. I’m then bed bound for a week and it takes me months to work my way back up to walking for 10 minutes or talking for 30 minutes again.

I’m sure you can imagine what that does to a person. Naturally, I’m grieving the person I used to be.

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Meanwhile, my family and I were learning that Covid lung damage isn’t always detected via normal X-rays or CT scans (could this get any crazier?). Sheffield and Oxford Universities created a special MRI technique to detect lung damage, which I’m still desperately trying to get into.

The heartbreaking part is that I have no medical evidence for even contracting Covid-19because I couldn’t get any tests done at the time (remember this was back in March 2020 when tests were not easily accessible) – so all I have is my story. When I did get tested, my results came back negative for antibodies. However, I was retested using a more developed test (as doctors were finding sensitivities with the previous tests), and surprisingly, it came back as positive. It was only then, that I was taken more seriously and advised that I would be added to the waiting list for a ‘long-Covid’ clinic.

I endured this torturous medical gas lighting for eights months, which left me feeling insurmountable loneliness and despair. I feel as though I’ve been on my own in this battle and it’sup to me to remain strong-willed and to continue fighting for the help, belief and answers that I so desperately need.

Eight months of medical gaslighting
I was advised that I had ‘suffered a traumatic experience and my mental health could mimic these symptoms’. The gaslighting was unbearable. The PTSD was unbearable. Frantically researching for answers and for a specialist who could help me, every minute of every day, was unbearable. Together, it drove me to the brink of despair that I hadn’t experienced before. As a result, I was diagnosed with ‘long-Covid-related moderate depression, mild anxiety and PTSD’. Pre-Covid, I hadn’t experienced any of these.

Desperate phone calls to my GP and several trips to a respiratory specialist always ended in the ‘it’s likely that you have anxiety’ diagnosis. My specialist is a top respiratory consultant who told me that ‘Covid-19 defied respiratory medicine’ yet that ‘my lungs appeared normal’. Of course I began experiencing anxiety because doctors wouldn’t believe me and kept telling me that I had anxiety. How could anxiety be their diagnosis for me not being able to walk for five minutes without panting? 

No longer alone
Around May of 2020, support groups for those with ‘long-Covid’ began to explode online, with others reporting similar longer-term effects from the virus. Suddenly, I wasn’t alone anymore.

A Christmas miracle
I finally found a respiratory specialist that was experienced in treating ‘long-Covid’ patients: Dr William Man, the head of Royal Brompton’s Chest Clinic. On 18 December, we spoke for one and a half hours. I sobbed after the call, like the end of a war cry, with the greatest relief and deepest gratitude.

Dr Man connected me with the best cardio-respiratory physiotherapist – Karen Dobson from Air Physiotherapy. I’m receiving the same treatment given to people who have lung disease. It’s been a game changer. 

It turns out that my yogic breathwork was the best thing I could have done in March, but the worst thing I could do for ‘long-Covid’, due to expelling too much CO2. Karen explained that I had a ‘dysfunctional breathing pattern’. Covid changes a part of the brain (the medulla – or breathing centre), which changed my CO2 levels, as a result from experiencing low oxygen levels in March from Covid-related pneumonia.

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Differentiating Covid vs ‘long-Covid’
The best analogy I can think of is this…

Covid was like having a tornado ripping through my lungs whilst shoving me underwater so that I couldn’t breathe. Plus, the other symptoms that come with it such as fever, coughing and a loss of taste and smell.

’Long-Covid’ is an unpredictable tornado of a different magnitude, returning unexpectedly to rip through my lungs whenever I walk or talk for longer periods of time, but this time, I’m no longer underwater. 

The thing about having ‘long-Covid’ is that it’s not as visual as someone who has Covid. No one would ever think I’m ill from looking at me, but they cannot see the firestorm that I feel in my lungs.

What life is like with ‘long-Covid’ now
Having ‘long-Covid’ today feels like waking up with a battery life of 20% rather than 100%. I feel as though over time, my battery increases by an additional 10% each month – unless I relapse, then it diminishes to 5%. Many ‘long haulers’ report feeling as though they are like an elderly person, which I can relate to. Normally, your ‘energy battery’ might recharge with some rest and nourishing food, yet with ‘long haulers’ it doesn’t – and scientists are trying to work out why.

Now, every day feels like an experiment of how much I can move and how my lungs will react – always anticipating that I’ll have to deal with the repercussions. Through keeping a symptom tracker, I’ve eventually learned that my lungs (the feelings of fire and breathlessness) were triggered by walking, talking and bending over. However, the baselines are different each month; recovery isn’t linear. Because I was such a highly active person, having ‘long-Covid’ has left me both physically and mentally imprisoned. I’ve now left London and am fortunate to be able to move back in with my parents to focus on healing. Unfortunately, I had to stop working because my body and mind just couldn’t cope.

It’s a delicate balance between accepting my physical ability now, managing and rebuilding myself from the mental and physical trauma that follows every relapse, while continuing to search for answers. 

I’m still grieving the person that I used to be, but I’ve chosen to pivot my attention to what I can do now: meditation, reading, writing and creating. It’s given my healing journey a newfound catharsis and purpose.

In terms of my current fitness regimen, I’m experimenting with gentle yoga poses while lying on my back and that don’t involve bending over. I sit in gratitude and reflect on the immense support from my new respiratory team, my family and friends and my employer – who have all been supportive in my mental and physical recovery.

In a few days, I’m seeing a doctor to discuss my most recent tests results – moving one step closer to receiving a diagnosis, and at the same time, preparing myself for whatever that diagnosis may be.

Throughout my journey, I’ve learned (and am still learning) to accept what I cannot control and to focus on what I can. In many ways, we are practising this as a collective right now. 

You can follow my journey on Medium @mylongcoviddiaries and on Instagram at @Jasminehayer_

If you’re struggling with long Covid and would like some additional support, you can check out the NHS’ ‘Your Covid Recovery’ online rehab centre which has links to information and resources which can help you with your recovery. The NHS website also has more information about long Covid, including the types of symptoms you can expect and when to seek additional support.

The post-Covid hub from Asthma UK and The British Lung Foundation is also offering support for people left with breathing difficulties after Covid-19.

IMAGE: Jasmine Hayer 

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