Your Wellness

My long Covid journey: I was only 25 but walking up stairs was leaving me on the verge of collapse

I felt like I was 100 years old and feared I would have a heart attack. But slowly and surely, I got better

Áine Kenny.

Áine Kenny
Mon Dec 26 2022 - 06:01

It is Health Season in The Irish Times. In print and online, we will be offering encouragement and inspiration to help us all improve our physical and mental health in 2024.

Back during Christmas 2020, I got Covid-19 for the first time. This was just as our oldest citizens were getting their very first jab.

I spent New Year’s Eve shivering in bed, the noise of fireworks outside disturbing my fitful night’s sleep. The acute stage lasted two weeks; there were night sweats, shortness of breath, a sensation of someone standing on my chest, heart palpitations, indescribable fatigue.

Slowly, I started improving.

Or so I thought.

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I left home once my 14-day isolation was up and went back to work. However, with each passing day, I was feeling worse. Walking up the stairs was leaving me on the verge of collapse. My heart shuddered in my chest and my breath would not slow down. Standing in the shower was tiring me out and I could barely walk around the house without experiencing heart palpitations. When I was in bed trying to sleep, my heart would not stop hammering in my chest, and it often twitched with a squeezing pain. Sometimes, I feared that I would have a heart attack.

I had been fighting my symptoms, believing that if I pushed through it, I would get better

I was just 25 years old, with no underlying health conditions, bar very mild asthma that I didn’t even take an inhaler for. Yet, I felt like I was 100 years old.

Six months after my initial infection, due to the debilitating fatigue, shortness of breath and heart palpitations, I was referred to the emergency department. After a chest X-ray and bloods to rule out a clot, followed by 10 hours of sitting in a hard plastic chair, I was told there was nothing they could do – I probably had long Covid, but that hospital did not have a long Covid clinic, so I was referred for some heart scans. Then the HSE was hacked, so I paid privately for an echocardiogram and other scans. Nothing showed up. Covid-19 hadn’t physically damaged my organs, but my nervous system and immune system were completely malfunctioning; my body was in a constant “fight or flight” state.

[ The Long Covid Plan for Ireland: Is it too little, too late? ]

I had interviewed people with long Covid just a few months prior, so I joined the long Covid Ireland Facebook group they told me about, where I received messages of support and advice. These virtual strangers were a lifeline to me during a dark time.

I had been fighting my symptoms, believing that if I pushed through it, I would get better.

Thankfully, about seven months into my journey, I found an online fatigue management course through the Facebook group. It was ran by a lady from the UK who recovered from chronic fatigue syndrome after eight years. She advocated for the pacing method, which involved proactive resting, and scheduling every aspect of your day, to ensure you do not overdo it. Resting meant lying down for a least 15 minutes with your eyes closed, with no distractions. She said that by pushing against your body, you are only going to get worse, and your “baseline” (what you can do in a day without having a fatigue/symptom crash) will get lower.

I started pacing. My day consisted of breakfast, rest, work, rest, lunch, rest, work, rest, watch TV, rest and sleep. I basically didn’t leave my house for months. While Ireland was opening up, and friends were heading out to the pub, my world was closing in around me. There were times when I felt I would never get better. The only highlight of my weeks were attending reflexology, which I credit with aiding my recovery.

All of this takes a toll on your mental health, and, thankfully, I was able to avail of counselling. I had to accept that I was ill and learn to say no, which pained me. I was afraid my friends would think I was being rude by not meeting up. I felt like I wasn’t going above and beyond in work. I felt like I was a burden on my partner, who had become my carer – he did all the cleaning, cooking, shopping. Without him, I know I would never have recovered, he stepped up and did everything, and never complained once. To him, I will forever be grateful.

People with long Covid need more support from the State – we need to be able to rest and recover at our own pace, as there is no drug or quick fix for many of us

Last summer, I finally got a place in the St Michael’s Hospital long Covid clinic after being referred almost a year previously by my GP. Here, I did physiotherapy to build my body back up, along with occupational therapy (OT). I learned a lot of the OT advice in my fatigue management course a year prior, but it was wonderful to have group support and an OT who was so kind and who also had long Covid.

Slowly and surely, I did get better. I was able to rest less. I hit small milestones: a walk to the park, a hotel break in Ireland last year, a sun holiday abroad this year. Last weekend, I went on a trip to Vienna, where I did 20,000 steps a day.

Just a year ago, this was an impossible dream.

[ Third of long Covid sufferers have serious brain issues after one year ]

My advice to anyone with long Covid is to pace yourself. Rest as much as possible and schedule it into your day. Stop working if you can, and don’t be afraid to put yourself and your health first. I was fortunate that I didn’t have children and had an able-bodied partner who was willing to look after me. Unfortunately, not everyone can do what I did.

People with long Covid need more support from the State – we need to be able to rest and recover at our own pace, as there is no drug or quick fix for many of us. We need mandatory sick pay, access to physiotherapy and occupational therapy in a timely manner, and above all, we need understanding and kindness.

We aren’t “just a bit tired”, we are chronically ill. For me, I can say that I am almost fully recovered, but for many, the journey will take longer, so please, be patient and wait for us.

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