My Covid and Long Covid Story

How I went from a fit aspiring yoga teacher to not being able to walk or talk

Me (pre-COVID), when holidays were ‘a thing’

Hi, my name is Jasmine Hayer (you can call me Jaz), and I’m one of the earliest COVID-19 Long haulers in the UK (not a label that I thought I’d ever give to myself), but here we are.

You can find my story in Stylist Magazine.

The full version is below.

A fit, healthy aspiring Yoga Teacher

I’m a 31-year-old Life Coach, Ayurvedic Health Coach and the Head of Membership at Kindred,a Members Club in West London. I was an avid yogi, practiced daily meditation and had no existing illnesses.

I noticed that stress impacted me more physically and I was susceptible to the ‘London burn-out’, but hey, what busy millennial in the city wasn’t? I was used to practicing hours of intense yoga, preparing myself for a Yoga Teacher training course. Now, it’s ten months later and one downward dog leaves me short of breath, with the feeling of ‘a firestorm’ moving in and around my lungs.

Me (pre-covid), training for my yoga teacher qualification

It all started on March 14th, 2020…

Like many long haulers, my flatmate and I contracted Covid-19 last March and strangely, we experienced exactly the same symptoms at exactly the same time. The first week consisted of flu symptoms, (yet no cough). We felt much better after a week and thought it was just ‘flu’. We were wrong, it was just the beginning…

On day five, we lost our sense of smell and taste (lasting two months) and on day seven, the breathing problems began. We experienced eight days of intense breathlessness: the feeling of a clamp on our chests and ‘something physically pushing our breath to the top of our chests’.

We just couldn’t get enough air — it was like being shoved underwater and at times we were gasping.

Meditation and yogic breathing were our weapons to push our breath down to our diaphragm, yet thirty minutes later and the virus would push it back up. I experienced an ‘out of body sensation’; as if my mind and body defaulted into it’s own focused survival mode. Our emotions were automatically suppressed. We were then told not to come to hospital because we didn’t ‘have a continuous cough or fever’.

It felt like a surreal paranormal battle.

Relief, PTSD and the start of Long Covid

After three weeks, I took my first ‘normal’ breath. Alongside relief, came the outburst of PTSD: flashbacks, nightmares, anxiety and uncontrollable crying — releasing the suppression of emotions and trauma that we’d just experienced. As well as baffling brain fog — it took me three hours to write a five-minute email and I just couldn’t understand why.

After that, I felt a lot better for one month, easing my return to ‘normal life’ and gentle yoga. I felt normal again. Oh, but ‘the virus was tricking me’. On May 2nd, 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 100m felt like I’d run a 10k.

Around May 2020, support groups exploded online, reporting similar longer-term effects from the virus. People started to publicly share their stories. Suddenly, I wasn’t alone anymore.

Thus, the start of Long Covid began…

The plethora of unexplainably baffling Long Covid symptoms

Many times, I could barely walk around the house because each step I took felt like my lungs 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, ten minutes of stretches continuously left me bed bound for a week — it was like my lungs were allergic to movement. Since May, I’ve had to ‘schedule’ the amount I talk — sometimes I couldn’t even speak as when I did, the shortness of breath was so intense that it felt like I had no oxygen left in my lungs.

I was stripped of my life: my active lifestyle, extroverted personality and simply being able to move.

Due to severely restricted mobility, I completely lost my appetite, resulting in a new wave of secondary symptoms such as noticeable weight loss, severe constipation and extreme fatigue. I was so fatigued that I couldn’t even talk (although, I could barely talk anyway because it triggered my lungs to relapse).

Thankfully, these secondary symptoms were healed by my Ayurvedic Doctor at the The Ayurvedic Clinic — a true saviour.

Other symptoms that I experienced were irregular menstrual cycles (although I sometimes experienced this from stress). However, unusual symptoms/changes that I didn’t experience previously were: acid reflux, a higher resting and active heart rate, severe palpitations, insomnia and PTSD, anxiety and depression. All of which, my current specialist advised, are common Long Covid symptoms.

In June, I experienced a rash for many weeks all over my arms, so itchy that it would bleed. It felt like ‘ants were crawling on me’. That’s when I discovered Kings College’s ZOE Covid Symptom Study had published research about other long haulers mysterious rashes.

What came next was ‘an avalanche of negative thoughts’, perplexingly at a time when I felt positively resilient. I practice, study and teach meditation, so I’ve learnt how to disassociate from my thoughts and emotions. At first, I just observed and thought, perhaps it’s my frustration from being so debilitated, as I’m a highly active person. However, my gut instinct was that it was more. Now, research and studies show that the virus rewires our neurological pathways and actually creates depression and anxiety.

Long Covid is like waking up with a battery of 20% rather than 100%.

My energy battery increases by around 10% each month, unless I relapse, then it’s back down to a starting point of 5% and it increases even more slowly month after month. That’s why we’re all saying that we feel ‘like an old person’. Normally, our ‘energy battery recharges’ yet with long haulers it doesn’t, thus scientists are trying to work out why.

It’s a daily experiment of ‘moving’, ‘seeing how my lungs react’ and dealing with the repercussions. Through keeping a symptom tracker, I eventually figured out that my lungs were triggered by walking, talking and bending over. However, the baselines are different each month; recovery isn’t linear. As I’m such a highly active person, it left me physically and mentally imprisoned.

Everyday is like walking on a minefield; movement is the detonator and my lungs are the bomb.

I’ve now left London and I’m 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.

Relapses: a psychological hell

I describe Long Covid as a sci-fi nightmare with a series of the most unexpected plot twists: ‘the relapses’.

November 2020 — unable to talk or walk; feeling something ‘moving in my lungs

My lungs felt (and still feel) like they’re attacking themselves when I move, which I describe as the ‘firestorm’.

Yet, the firestorm occurs an hour or more after walking/talking for long (sometimes that’s ten minutes and other times it’s forty) and there’s varying levels. 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.

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

Eight months of medical gas lighting

Desperate phone calls to my GP, a trip to A&E and two trips to a respiratory specialist always ended in the ‘it’s likely that you have anxiety’ diagnosis because ‘there’s no medical abnormalities’. He was a top respiratory consultant at the best general hospital in London, who told me that ‘Covid-19 defied respiratory medicine’ yet that ‘my lungs appeared normal’.

I was experiencing anxiety, not only because I could barely walk but more so because doctors wouldn’t believe me and kept telling me that I had anxiety!

‘This’ was their diagnosis for me not being able to walk for five minutes without panting? There was not a world where I was going to believe that.

Meanwhile, we were learning that Covid lung damage wasn’t always detected via normal X-rays or CT scans (could this get any crazier, I know).

I endured this torturous medical gas lighting for eights months, which left me with a feeling of insurmountable loneliness and despair.

I had no medical evidence for having Covid because we couldn’t get any tests at the time so all I had was my story. I even tested negative for antibodies. However, I was retested using a more developed test (apparently all the tests have sensitivities!?).

In November 2020, (eight months after having Covid), I was told that the test came back positive — I had Covid-19 antibodies, much to my shock yet delight. 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’ but there was no timeline of ‘where or when they would open’.

That wasn’t good enough. I knew something was wrong with me and I needed urgent help. I was on my own in this battle; it was up to me to remain strong willed and continue fighting for the help that I so desperately needed...

November 2020: the worst relapse yet

Eight months later and I thought I was finally healing: my lungs were noticeably improving since September and I was feeling optimistic and stronger by the day.

Then on November 22nd, I went for a long but slow 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 aggressed 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.

Calming my nervous system; telling my lungs that they’re safe

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, cradling myself, 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 on my lungs and my mental health. The tornado gradually calmed down the next day but I was left with a permanent ‘firestorm’ in my lungs. It took one and a half months for my body to be able to walk for ten minutes. If I tried to walk or talk, the ‘firestorm’ in my lungs started again.

Afterwards, came a severe wave of PTSD for two months, particularly the uncontrollable crying, ten times a day.

Again, ‘tests showed no irregularities’ and I was advised that ‘I had suffered a traumatic experience and my mental health could mimic symptoms’. The gas lighting was unbearable. The PTSD was unbearable. Frantically researching for answers and a specialist who could help me, every minute of every day, was unbearable.

Together, it drove me to the brink of a despair that I hadn’t experienced before. As a result, I was diagnosed with ‘Long Covid related moderate depression, mild anxiety and PTSD’. I wasn’t experiencing any of this pre-Covid.

A Christmas miracle

A family friend who’s also a GP sent me an article about a Covid Recovery clinic at The Royal Brompton and Harefield Hospital.

Dr William Man — the Head of Royal Brompton’s Covid Recovery clinic & international respiratory authority
Karen Dobson — cardio-respiratory physiotherapist at Air Physiotherapy

I had finally found a respiratory specialist that was experienced in treating Long Covid patients: the extraordinary Dr William Man, the Head of Royal Brompton’s Chest Clinic and Covid Recovery. And not just ‘any’ specialist — he was an international authority in respiratory medicine who worked at the leading specialist lung and heart hospital in Europe!

On the 18th December, we spoke for 1.5 hours. I sobbed after the call, like the end of a war cry, with the greatest relief and the deepest thanks.

Dr Man connected me with the best Cardio-Respiratory physiotherapist — Karen Dobson from Air Physiotherapy. I suddenly went from having to fight to be believed that I was even ill, to now having a team of experts working so closely together to track my progress.

Karen taught me breathing exercises which enabled me to increase my physical activity. It was a game changer.

They’re the same breathing exercises given to people who have lung disease. It turns out that my yogic breath work was the best thing to do in March but the worst thing to 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 — the breathing centre), which changed my CO2 levels, as a result of experiencing low oxygen levels in March from Covid pneumonia.

Covid VS Long Covid

For what I experienced, the best analogy I can think of is this…

Covid was like having a tornado ripping through my lungs whilst shoving me underwater so I couldn’t breathe. Plus, the other symptoms.

Long Covid is a tornado of different magnitudes, returning unexpectedly to rip through my lungs whenever it wants, when I walk or talk for long but I’m no longer underwater. Plus, the other symptoms.

The thing about having Long Covid is, no one would ever think I’m ill from looking at me; they cannot see what I feel in my lungs.

Finding acceptance and purpose

Life for me now is a delicate balance between accepting my physical ability whilst managing and rebuilding myself from the mental and physical trauma which follows every relapse.

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.

I’m experimenting with gentle yoga poses lying on my back which doesn’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 boss — without them, I wouldn’t be where I am today.

I am healing but it’s excruciatingly slow. A good day means I’ll be able to walk for thirty minutes without symptoms or talk for an hour. A bad day means I have to sit down for hours, minimise talking and not walk.

On the 11th February, I was given the ‘full MOT’ — a day of comprehensive specialist heart and lung tests at the Royal Brompton Covid Recovery clinic.

I was moving one step closer to a diagnosis whilst preparing myself for what that diagnosis may be.

I had a video call with Dr Man on the 12th February for my tests results — no amount of preparation prepared me for what was to come…

Throughout this journey, I’m learning a deep practical life lesson of accepting what I cannot control and focusing on what I can. I guess in many ways, we are practicing this as a collective right now.

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