Mairead’s story

Mairead and her husband both contracted Covid-19 in late December 2020.

Over a year on, they are still suffering with the effects of Long Covid, leaving them with a range of debilitating symptoms like breathlessness and fatigue.

Floored by it

I had a bit of a cough on Boxing Day and my husband wasn’t feeling great either. I have chronic kidney disease and I knew the next day I was getting an infection. Anti-sickness tablets from the GP didn’t help and I had to be taken into hospital for dehydration.

The paramedics checked us for symptoms of Covid-19 and said we didn’t have the virus. But a week later we were both still feeling unwell and this time we both had positive tests.

A month later, we were both still floored by it. I’ve had flu before, but this wasn’t flu. We just lay for hours on end, me on the couch and him on the bed. The only thing that got us up was having to let our dog Betty out on to the balcony.

Still suffering

My husband began to notice that after he’d been awake for a while, his head would feel as if it was swollen, his throat became constricted, and he got brain fog. In fact, he said he was hallucinating sometimes. He’s a little better now, but he still gets very breathless, and his heart has started racing. He has pain in his hips, too.

I have joint pain in my foot, as if one toe is permanently broken. My hands and feet regularly get very red and the veins get prominent. I also have breathlessness and my heart has been constantly racing from the very start of covid.

I’ve got a Fitbit. One day I was on the couch for hours and my heart was racing. According to the Fitbit, I’d done five hours and 23 minutes of cardio exercise – but I never moved at all!

Neither one of us has ever got back to feeling as well as we did before Covid. We got in touch with the GP who was really good and listened to us, but she admitted she really didn’t know what she could do for us.

Weird things are happening to our bodies – we don’t have a yawn reflex any longer – but we don’t feel we can constantly go to the GP and report on every new odd symptom.

More support needed

Those of us with Long Covid need a single place to go to for information and for help, a central body that will be noting down all these symptoms and documenting what is happening to people. Otherwise we are all going to be left in limbo for years.

With more young people being diagnosed with Long Covid, we can’t afford to let that happen.

The time has long past for doctors to take people like us seriously. Yes, I’ve been referred to specialists, but they are simply testing for conditions that they know about. But Long Covid is new and is affecting so many people in so many different ways.

Doctors are still not taking our experiences seriously enough. There have been times where I have explained what I’m feeling or going through and been told that’s impossible or just can’t be happening, but it’s very real.

We feel our experiences are dismissed, but we’re the people living with this. We know what our bodies are going through.

Things have changed for both of us in the year since we got ill. But they have not got better. As one symptom fades, another appears.

I now don’t go out on my own because I worry that my breathlessness will mean I get faint and there won’t be anyone to help me. My husband goes to work, then comes home and goes straight to bed because he’s so exhausted. And all the time we worry that we might get Covid again.

People join the Long Covid forums, then leave because they think they are cured, but they’re back within weeks because they have relapsed. Every day we ask ourselves – are we going to be like this for the rest of our lives?

Long Covid is the second crisis from the first crisis of the pandemic. And it’s the one that’s going to last the longest. The NHS will be looking after us for a long time, so we need them to start doing it properly now.