I caught covid in summer 2020. The actual infection wasn’t too bad for me. I was extremely sleepy, lethargic and unable to think much at all, and had a bit of a sore throat but I wasn’t in pain and didn’t have breathing difficulties or anything else more serious. Being self-employed and a parent, I was keen to get back to my normal life and as soon as I started to feel better that’s what I did.
But about a week after I’d thought I was pretty much better, it all went wrong. I started to get heart palpitations combined with sudden shortness of breath and the fatigue came back so that some days I couldn’t even get out of bed. In addition, the brain fog seemed to be getting worse, not better, and my digestion started to trouble me.
The long-covid journey
That was the start of a long slow journey through long-covid. It was utterly horrific. There was virtually no information available and nobody really knew what to do about it. I had to find my own way through it alongside other sufferers, sharing what we had found out over Facebook groups.
My GP took it seriously (I was lucky, a lot of people didn’t have that support) and ordered x-rays and an ECG, but they showed nothing up, and again I was left to manage the symptoms without any idea of what they were or why they were happening. Imagine waking up at 3am, with your heart going crazy and unable to breathe, with no idea why or what to do.
I have also been lucky that I have mostly recovered. It’s been a long road, and I still have some residual symptoms. And I am also left dramatically reduced in fitness and condition as a result, but hoping to recover those with time too.
The impact of the government abandoning the fight
However, the current situation is horrendous for me and others like me. Now, as a direct result of letting the virus run rampant through the country, it is estimated that 1.7 million people in the UK have long-covid. The majority of those are 30–60 but all ages, including children, can have it.
There’s still been no significant funding for research into treatments, or causes. There is the possibility that at least some cases of long-covid may be very similar to other illnesses such as ME, but sadly people suffering with these conditions have also been long and much neglected in terms of research and treatment. In too many cases, they’ve been treated as though it’s all in their heads, a similar story for some long-covid patients.
Living through a mass-disabling event
I can’t tell you what that’s done to my mental health, it’s appalling to be living through a mass-disabling event in slow motion, which so many people are unaware of or are choosing to ignore; including and especially, the people making the decisions.
Personally, I still feel very restricted by it. I very much don’t want to catch covid again, because the prospect of going back to all those symptoms or worse feels unbearable. So I am not going anywhere where I need to be inside for any period of time with any number of people. So no haircuts, no public transport, no meals out, no gigs, no pubs, no shows, etc., etc. Virtually nobody is wearing masks, and the covid numbers are obscene so the risk just feels too high.
I know there are lots of other people who are vulnerable to covid for various reasons who are also effectively living under house arrest, because nobody cares to look out for us and going out is actively dangerous to us. We feel abandoned and uncared for, because we are and have been.
It’s time to have a conversation about how to live with covid without ignoring all this. It’s time to look after the people who are at risk, and not just shunt us aside as an inconvenience to returning to ‘normal’.