More support is needed for people with Long COVID

Kirsty, who has asthma, caught coronavirus in early March. She explains what she went through, and how her continuing symptoms have affected her everyday life and asthma.

When I first started feeling unwell, I put it down to a busy week at work. I phoned the doctors and they mentioned the possibility of me having COVID-19. But because I didn’t have a temperature, they weren’t sure. They gave me antibiotics and steroids for my asthma and told me to call an ambulance if my symptoms got any worse.

Over the next couple of days, I didn’t feel any better and could barely move. My chest felt very tight and I couldn’t catch my breath.

I was scared. And I thought that if this isn’t COVID-19, I don’t want to risk going to hospital and catching the virus there. I spoke to my doctor again and told them I wasn’t getting any better. I went into surgery and found out my heart rate and blood pressure were high, but they couldn’t hear anything in my chest to suggest an infection. I was coughing a lot at this point. It felt like a similar cough to when my asthma flares up.

I still wasn’t getting any better and ended up speaking to lots of different doctors at the surgery. One doctor eventually did say it sounded like I had COVID-19, but I couldn’t be tested, as tests were only available at that point for people in hospital. Because I hadn’t been abroad or in contact with anyone who’d had COVID-19, they couldn’t test me.

I was in hospital twice

While I was recovering, I had a bad asthma attack. I phoned 111 and they told me to go to hospital. My heart rate was 150 beats per minute and my blood oxygen levels were low. I had an X-ray to make sure my lungs were clear of infection. My heartrate settled and, as I was in a stable condition, I was sent home, as they didn’t want to risk me having to stay in hospital. They told me to come back if anything got worse.

I was also recently rushed to hospital again for what I thought was an asthma attack. I had CT scans and they discovered a clot on my lungs. I don’t have any family history of this, and they don’t know yet what caused it.


COVID-19 is still affecting me

I’m not on the shielded patients list. But after I went to hospital, I spoke to the doctor about my concerns. They said they couldn’t add me to the shielded patients list, but did say I should stay at home. Not having the letter made it really hard at the beginning to get a supermarket delivery slot.

Eventually I had an antibody test, which came back positive. This helped put my mind at ease and helped me understand what I’d gone through.

After the first 8 weeks, I started to feel better. I’d have a good day, then relapse into having a few bad days. That cycle happened quite a bit. I’m feeling much better, but nowhere near where I was before I had COVID-19. I’ve noticed a definite change in my lungs and breathing, and how I move around.

My asthma didn’t used to affect my day to day life, but now it does if I’m doing too much. I was racing a bike with my daughter recently and I had an asthma attack. I know now to stick to my limits. My asthma is also now triggered by the smallest things, which never used to happen before. Recently I could smell someone having a bonfire nearby, and it triggered an asthma attack.

More support is needed for people with Long COVID symptoms

I was off work from 10 March until 26 June, and I’m now back on reduced hours. I haven’t been offered much in the way of support. I think much more is needed to help people recovering from COVID-19. At times, I was made to feel a pain and I had to beg for help. It was incredibly frustrating. I’m just thankful my husband has been working from home and has been able to look after our children. I can’t imagine what this would have been like on my own.

I found this Long COVID advice through the Asthma UK Facebook page. It put my mind at rest having somewhere to go where there are people who understand what you’re going through.

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If you’d like to share your story of recovering from Long COVID, please get in touch.

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17 February 2021