‘On bad days I can’t stand up in the shower: I am 31 and have had long Covid since March 2020’ – The Independent

Amy Durant, 31, from Surrey, has been ill with long-Covid since March 2020. A review published this week found at least 10 per cent of people infected with Covid-19 have suffered symptoms for months, and this is more common in women and children. But what does it really feel like to go from being healthy to debilitated by long Covid? Durant shares her story.

I first got coronavirus symptoms around 14 March last year. I don’t know where I caught it but I wasn’t going out much  – and was being careful – so it was most likely the supermarket. It was before the first lockdown, people weren’t wearing masks, and the general feeling was that it wasn’t that prevalent in the population, particularly outside of cities.

I live with two people who I thought were particularly vulnerable: my grandma, 92, and my partner, who has type one diabetes. I was actually the only person in the house who I wasn’t worried about as the narrative at that time was that if you were young you basically would be fine.

As soon as my symptoms began – the classic high temperature, all over body pain, and later a cough – I was convinced it was Covid. Although you couldn’t get tested back then (I was officially diagnosed in July with an antibody test) in my adult life I’ve never had an illness with a high temperature. I don’t really get ill and don’t have any underlying conditions; I was later diagnosed with Hashimoto’s thyroiditis [the immune system attacks the thyroid gland, causing swelling] but do not know if this predated the Covid. 

When the symptoms started I asked my dad to come and pick my grandma up to keep her safe. Unfortunately she must have already caught it from me as both she and my dad came down with it a week later at his flat. Although thankfully they both recovered quickly. My diabetic partner – who I continued to isolate with – never showed any symptoms.

The first few days I couldn’t get out of bed or eat anything but I was kind of expecting that. These acute symptoms lasted a couple of days but my breathing continued to be affected and my chest felt really tight. I tried to seek medical help but would just be on hold to 111 for hours. Then if you did get through they would ask what felt like silly questions like: “Can you concentrate on watching TV?” And if you said yes then they would say you weren’t ill enough to be hospitalised. It was pretty traumatic.

I would go through patches of feeling better then worse. By April I still hadn’t recovered and my breathing had deteriorated, I was gasping for breath so I rang 111 for a third time. They sent an ambulance when they heard my voice. The paramedics came but when they checked my oxygen stats they recommended I stayed at home rather than go to the hospital, which was really full.

After that I did start to feel better and started pushing myself to recover faster, to make myself go out or try to do some running again. My brain felt good so I tried to start working again – I’m self-employed and work from home – I also felt like because I’d been dismissed by experts, maybe it wasn’t that bad and I should get on with it. But I didn’t know anything about the risk of post-viral complications and I think pushing myself was a mistake. I was just trying to get back to normal and didn’t realise there was any risk of doing things too quickly.

When June came around, the fatigue and brain fog descended and work became a struggle. I would wake up and feel just as tired as when I went to bed. Things I’d normally do easily I’d tire of quickly, even holding conversations was draining. The brain fog felt like intense pressure in my head: I couldn’t read, I couldn’t cook, basic things, I couldn’t do anything that took concentration. On really bad days I couldn’t even stand up in the shower or walk up and down the stairs.

(Amy Durant)

A few months later, at the end of summer, the brain stuff got really worrying where I was using the wrong words quite a lot in sentences without realising, and I couldn’t spell. I’d completely forget how to spell words I can normally. I was worried at that point. In these bad patches I couldn’t even leave the room, let alone the house. I’d try and get out for a short walk but it’s just not physically possible a lot of the time. I’d wake up and know I needed to stay in bed.

Sometimes you will feel better – in November and December it lifted and I was working and feeling optimistic but then I relapsed again in 2021. Obviously getting rest helps, and that means mental rest as well as physical rest, but it’s so difficult getting that balance right between helping your recovery and not being miserable. Just lying in bed is quite difficult, work is really important to me. I’ve gone from being a very independent person to having to say I can’t cope.

Yesterday – nearly 12 months after I was first ill – it was really sunny and I wanted to get out but I stood up and was so dizzy and breathless and so I couldn’t even get dressed. It made me really upset because I hated missing that nice day and just sitting in my room again.

I stood up and was so dizzy and breathless and so I couldn’t even get dressed

I have had some investigations, blood tests and scans and a referral to a respiratory service, which showed some damage in my lungs. They believe it was caused by narrowing of the airways and don’t know yet whether it will scar. So even though I wasn’t hospitalised I have still got damage. Even with these tests, I have felt quite abandoned by doctors. I was rejected twice from the long Covid clinics (the first time in September because I hadn’t been hospitalised) and my second application in October is still pending. I’ve been connecting with other people in Facebook support groups who also have not had good experiences.

In a few days it will be a full year of long Covid. Perhaps if I was a different age, then it might feel easier to put my life on hold for a full year, to take a year off and recuperate. But at my age, that is not really an option. I’ve got so much stuff to be doing. You can’t just switch off from life. I think it is going to be harder in a few months when everyone else is going back to normal and people with long Covid still won’t be.

If I knew it was going to be ‘X’ more months and then I’d start to see a decent recovery it would be so much easier but instead I have no idea how permanent or semi-permanent this is. For me the six month and one year mark were really tricky. Now I’m not doing milestones because it is setting myself up for disappointment. When people are trying to make plans and ask me to do stuff, I just can’t commit. I don’t know how I’ll feel next week, let alone in a month or so.

My life is unrecognisable but I’m still hopeful it will change back

I’m taking each day as it comes and not focusing on the future. It’s hard for people to understand if you haven’t lived through a similar illness. I do feel quite angry because I feel like lots of misinformation at the start of the pandemic and a lack of strong guidelines for dealing with long Covid put me in this position. If you’ve been ill for six to 12 months then most people are going to be having low days. I know some people who have been suicidal.

My life is very changed by long Covid – it is unrecognisable to what it was before. I’m still hopeful my life will change back but there is no knowing when. There needs to be a system for counting people with long Covid, I don’t think I’m on any official list of people suffering, but there needs to be a record so people can look at it to see it’s not just about death rates. As going forward it will be a nightmare if all these people cannot work or participate in society.

If you are experiencing feelings of distress and isolation, or are struggling to cope, The Samaritans offers support; you can speak to someone for free over the phone, in confidence, on 116 123 (UK and ROI), email jo@samaritans.org, or visit the Samaritans website to find details of your nearest branch.