By Guardian - Sam Wollaston - Wed 19 Jun 2024 10.00 BST

Natacha Gray had an active life, diving, climbing and playing music, before illness left her so tired she would collapse on the way to the couch. She discusses two and a half devastating years – and how she stays optimistic.

Natacha Gray is singing the song she has written about living with long Covid. It’s a lovely, haunting song and she sings it beautifully. It begins:

There’s a piano in my home
Untouched for many months
With black and white keys
That gather up dust

Natacha Gray: Long Covid Song

The piano is there, in the corner of the room, but Natacha is sitting on the couch, feet up, with an acoustic guitar. “I used to play the piano a lot,” she says. “I lost the ability to walk, to see friends and go to work. But to lose the ability to sit at a piano in your living room is pretty drastic. And I used to write a lot of songs. Not being able to play or create because my brain wasn’t working right was pretty rough. I actually wrote poems because they were short and I could do them during little bursts of energy. I used the poems to create lyrics later.”

Natacha – one of 950 people who responded to a Guardian reader callout – got Covid just before Christmas 2021, when she was 27. Not especially badly: she felt she was getting better. She went back to work – customer services in an office – but started having breathing problems and feeling exhausted, even after lots of rest. “One morning I sat there waiting to start work and I just stared at a black screen for half an hour without a thought. Someone came up to me, I remember, and asked: ‘Are you OK? Do you need to go home?’ And I went: ‘I think so.’ That was the last time I worked in that office.”

She and her fiance, Tom, had recently moved in with her dad and his wife outside Bolton – just for a few weeks, while they found somewhere for themselves. Two and a half years on, they’re still here. Tom works upstairs; he drops in and out of the interview, with tea, checking Natacha’s OK, helping with the memories. Dad John sometimes appears at the door to chip in. He has to leave when she sings the song, though – it gets to him every time.

On the walls are photos of a super-active, outdoorsy family – Natacha diving on the Great Barrier Reef, rafting, climbing, ecstatic on the summit of a snowy peak. It was a long way down from there.

She recalls an early low point. “I was at what we call level zero, which is complete energy crash: I couldn’t move, speak, turn my head.” And she was finding it hard to breathe, so Tom took her to hospital. “I was sat waiting on those seats, staring at the front doors going round and round and people coming in and out. All these people were sick, but to me they seemed to be doing insurmountable things. There was a frail old woman blowing her nose, and I thought: ‘You look so healthy to me – you’re so full of energy.’”

“It was as if you had locked-in syndrome,” says Tom. “She was thirsty for an hour, maybe two, but couldn’t tell anyone, she couldn’t communicate.” Tom has become very good at recognising where Natacha is at and knowing what she needs.

Her GP diagnosed long Covid, and the local long Covid clinic gave her some fatigue management video lessons, and later some sessions with a physiotherapist, who taught her how to increase her energy levels. “We started with 30-second walks that would exhaust me beyond reason.” Another GP told her she had chronic fatigue syndrome. “He said it was lifelong and there was nothing I could do about it really. That sent me into a downward spiral.”

I spent a whole week wondering
If my entire future – life –
Was slipping through my fingers
Painted with an unknown colour

Fortunately, the long Covid clinic didn’t agree with the second GP, and Natacha was referred to a therapist for counselling, which she says saved her. “It’s difficult to describe long Covid simply, but if it is one thing, it is heartbreaking. I was unable to work, think, move. My only exercise would be getting to the couch in the morning, trips to the bathroom during the day, and going back to my bed in the evening. Often I would collapse on these tiny trips, and someone would have to pick me up off the floor.”

I asked Dr Binita Kane, the Manchester-based respiratory physician I’ve been speaking to throughout this series, whether it’s known why some people get long Covid, while others recover quickly. “We don’t officially know the answer to that: the research hasn’t been done,” she says. But when she looks at the medical histories of the patients she sees in her private long Covid clinic, she can identify clear themes.

“I definitely see one group who have an allergic-type history such as mild asthma, eczema, hay fever and, say, lactose intolerance as a child, or a bit of irritable bowel. Another common finding is a previous viral infection with a prolonged period of recovery, such as glandular fever. Other themes are having a head injury in the year before they got ill, or going through severe stress or trauma in the run-up to getting Covid. We need to research whether these are risk factors, and why.” Natacha says she does get bad hay fever.

Natacha spent her days sitting on the couch – this couch – watching the seasons change and the world passing by outside the window. Everything was difficult – eating, thinking, speaking, even sleeping and laughing. “I couldn’t cry for months, because influxes of emotions would drain my battery immediately. Imagine you are so upset about something that you burst into sobs, and immediately slump down, so tired you can’t lift your hands, or push your hair out of your face, or call for help.”

It changed things with Tom, who had to take on a whole new role as a carer. “I’ve had to accept that it’s frustrating and tiring for him. I was a lot more, you know, ‘I’m an independent woman’ before, and suddenly I’m like a child who needs to be taken care of by someone who was your equal and now needs to be more than that. You still are equals, but it’s hard to find that balance. Where does the carer stop and the partner and the friend begin?”

It sounds like Tom did good. He learned to understand how Natacha was feeling when she couldn’t speak, to anticipate the crashes; he’s always prepared. “Like the other day we were out and I was getting cold (I am affected by temperature a lot more). And he just pulled out a scarf and gloves and hat like it was nothing: ‘Here you go – cover up.’ I started crying because he shows care in so many small ways that always catch me off-guard.”

Oh yes, Natacha can – and does – cry now. She chokes up a little when she talks about the really dark times, when it felt as if she was locked in and couldn’t communicate. But mostly, when she talks about how brilliant Tom has been.

And she can go out now, too. They went to Chester Zoo, because Tom found out it offers free wheelchairs …

The zoo looks different from down here
It’s full of people who part like waves
I ache from bumpy bridges
And watching butterflies fly overhead

It was a success, and led them to buy their own chair, with knobbly tyres for more rugged, off-road adventures. It’s not quite the mountains of before, but maybe a tiny step in that direction.

Natacha has been taking tiny steps herself – actually walking. Not far to begin with: to the end of the garden (and carried back), then a bit further. She set a new record the other day. “Was it like a kilometre? It was crazy,” she says. “It was the slowest kilometre anyone has ever walked. I used the wheelchair as a walker, and I kept saying to Tom: ‘I’m taller than everyone!’ It was weird because for the last two years I’ve been shorter than everyone, sitting down.” Still, they never leave the house without the chair.

The progress Natacha has made, she feels, is down to them figuring it out for themselves – what to do, diet, exercise and so on. She hasn’t been impressed with the treatment and support from the health service. A referral to a cardiologist simply never materialised. “The NHS long Covid system was slow and there was very little of it,” she says. Yes, she had some counselling, but it took a year to get it and now she’s not seeing anyone. She has family abroad (her mother is French), “And everyone goes: ‘You’re not seeing your doctor? They’re not checking-up on you?’ It seems they’re doing very little here compared with other countries.”

Kane says that 2 million people struggling with a multisystem chronic problem has created a huge challenge for an already overstretched NHS. She describes the organisation as a “juggernaut” that lacks the agility to keep up with the changes, and says a lack of funding and research has meant that patients aren’t getting the treatment, support and rehabilitation that they should be.

It’s not just the NHS that Natacha takes issue with but the whole government response. She thinks that people like her have been forgotten and abandoned, that long Covid has been brushed under the carpet. “If I had had more support, I wouldn’t have tried to force myself back to work after four weeks off, because I had to,” she says. “That probably tanked my health.”

She ended up leaving that job, because she couldn’t do it even while working from home on the couch. Then she was rejected for both disability living allowance and mobility allowance. “Why? Because I’m not receiving any treatment or any medication and I haven’t had a crash for a while. I’m not receiving treatment or medication because there isn’t any and I’m not crashing because we have spent the last few years figuring out how to avoid crashes,” she says.

Kane has an idea why people like Natacha aren’t getting more support. “If you acknowledge long Covid as a disability, it costs money and requires significant investment to wrap the right support around children and adults, from home to school to work to clinical services,” she says.

Natacha says she has not been believed. “Constantly. Because there are things in the news about people pretending to have long Covid to get out of work. If someone faked having a broken leg, would you assume everyone with a broken leg was faking it? No, you wouldn’t, but they do with long Covid.”

To the list of things Natacha has lost to long Covid – a long list that includes health, muscle, mental health, time, mobility, memories, passions, music, freedom – she can add faith. Faith in the NHS and the system.

She has gained one good thing though: she and Tom got married. It came from a low point. “My thoughts had turned so dark, so depressed and hopeless, everything felt worthless, I genuinely couldn’t see how life was going to get better. And I felt as if I was ruining Tom’s life. I felt a lot of guilt.”

They had previously planned a big wedding in France before the pandemic. “I said: ‘We’ve put off our wedding for three years because of all this. I don’t really care about having a big wedding – I just want to be married to you.’”

So that’s what they did: they eloped. Well, kind of – they drove to a hotel in the Lake District, with four friends as witnesses. Tom fetches the photo album. Natacha says: “I would stand for a few pictures, then sit in the wheelchair again; it was the most I’d stood for two years. Energy and happiness carried me through the day – it was wonderful.”

Something that she hasn’t lost is hope. “I’m optimistic – it’s just a slog.” One day she’d like to be on top of those mountains again. “And I want to have children, even though that is not imaginable right now.”

Natacha actually considers herself to be one of the lucky ones. How come? There’s a line about it in the song (one that chokes her dad up):

There’s people at my back

She means her family, her dad and Tom. “I can’t imagine how people survive if they are on their own or with young children or no partners. I was incredibly lucky to have people around me, to have the safety of their home, despite how horrible it has been.”

They are talking again about getting their own place. Natacha has a new job, which can be done remotely. Her employers are understanding and encouraging. She has told them that she might not be going back to work today and they’re fine with that. She does suddenly look tired, and pale, she’s speaking more slowly, her battery is visibly running down. Talking for two hours has taken it out of her. Talking, and singing. There’s a note of optimism at the end of the Long Covid Song:

So hear me sing
See me stand
Feel my hands
On the keyboard again
Cos I can sing
And I can stand
I put my hands
On the keyboard again.

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