Long Covid: ‘I was bedbound for a year’

Couple Claire Hooper and Antony Loveless were bedbound in 2021 with long Covid. Credit: Anthony Loveless

Going 12 days without a shower, needing to lie down after brushing your teeth and suicidal thoughts were normal for a couple left bedbound for a year because of long Covid symptoms.

But what is long Covid? NHS England describes long Covid as being unable to shake off the effects of the virus months after initially falling ill. Symptoms can include breathlessness, chronic fatigue, ‘brain fog’, anxiety and stress.

Speaking as a guest on Episode 26 of the Let’s Talk About Care podcast, Claire Hooper reveals that the effects of long Covid have been “pretty grim”. Not just for her but also her partner Antony Loveless.

Stuck in ‘endless loop of nothingness’

Having been teenage sweethearts, the couple had only got together again two years ago. However, long Covid left them “stuck in this endless loop of nothingness”.

They thought they had “dodged” the coronavirus in the pandemic until they both tested positive for Covid-19 on 4 January 2021. The couple got so ill they became trapped in their bed for up to 24 hours a day.

Ex-nurse Claire says: “I mean when we first got Covid we were like ‘Oh well good! We’ve got it out the way then. We’ll have it now, we’ll be under the weather for a couple of weeks’.”

‘I can’t even hold my grandson’

She laughs when she thinks how 14 months later, the impact of the virus means she must lie down after brushing her teeth. She cannot leave the house alone in case she gets lost.

Claire became a grandmother in 2021. “I can’t even hold my grandson” says the mother of four. The frustration is evident on Claire’s face, especially as her previous job as a health visitor involved making home visits to new mums.

She says: “If that lead curtain of fatigue falls, I worry I may drop him”.

The couple’s distorted sense of taste and smell meant smoked salmon tasted and smelled “like dog poo”.

What is long Covid? 

Long Covid has been defined by the World Health Organisation (WHO) as the continuation or development of new symptoms three months after the initial SARS-CoV-2 infection (Covid-19).  These symptoms last for at least two months. Symptoms cannot be explained by an alternative diagnosis. 

What are the symptoms of long Covid? 

Long Covid has been linked to over 200 symptoms  and conditions and a person’s symptoms can change over time. 

Covid 19 can attack the body many ways, causing damage to the lungs, heart, nervous system, kidneys, liver and other organs. 

Mini-strokes, brain fog, falls, extreme tiredness, heart palpitations and other long Covid symptoms have led to suicidal thoughts for her and Antony. They both lost their jobs because of long Covid.

Mental health: ‘I was actively looking to kill myself’

 Antony Loveless is a former war correspondent sent to Afghanistan and Iraq. Credit: Anthony Loveless

“For most of 2021, we were in bed for 20-24 hours a day”, says Antony who is a former war correspondent.

Anthony last worked in an investigating role at London Gateway Port.

At one point, Antony felt well enough to return to work. However, he had to go home to bed on his first day back because he suffered a relapse. 
“I lost my job in May…that really sent me in a tailspin.”

Stuck in bed with no income for much of last year, Antony didn’t want to go to the ‘Bank of Mum and Dad’ at the age of 55 but was forced to.

“Last year when I was suicidal. I was actively looking to kill myself.”

Diarrhoea up to 20 times a day – ‘I lost 6.5 stone’   

They had multiple symptoms. Claire recalls having diarrhoea up to 20 times a day. She lost six stone and a half. Antony lost four stone.

The couple say living with long Covid is like running on a battery with only 30 per cent power. Even talking on the phone uses up 10% of their battery.

“I don’t know how I’m going to be in the next 10 minutes” says Claire. She had to stop talking to lie down twice during the recording of the Let’s Talk About Care podcast.

Claire, whose 12-year-old daughter lives with them, says she now tries to get up to spend a little time with her youngest child when she returns from school. But unable to cook, the couple relied on takeaways and ready meals for much of 2021 and beyond.

‘You develop a very black sense of humour’

Claire and Antony, who regularly collapse when their ‘battery’ is drained, have been told they are too sick to start rehabilitation in a long Covid clinic.

“You develop a very black sense of humour” says Antony of his life living with long Covid.

The condition led Antony to develop Postural Tachycardia Syndrome (PoTS) which affects blood circulation. It can cause an abnormal increase in heart rate after standing up. It causes light headedness, palpitations and fatigue.

Long Covid can impair brain function. People with the condition can experience ‘brain fog’ and struggle to remember things or find the words they want to say. 

‘Jump through hoops’ for benefits and home care  

If you have long Covid, you may be able to claim benefits. If you are already claiming benefits, you may be entitled to an increased amount.

The couple’s cognitive decline compounded by the complexity of applying for a Personal Independence Payment (PIP), forced them to find an advocate. The advocate helped them complete a 50-page PIP application form.

But Claire and Antony still had a seven-month wait before receiving PIP money.

PIP is meant to help people who find it difficult to do everyday activities or struggle with mobility. Applicants may have a long-term physical, mental health condition or disability.

“You don’t apply for PIP unless you are very severely disabled” says Antony who believes the benefits system makes people “jump through hoops”. He says the system “disadvantages the very people that need it”.

Post pandemic, the couple are no longer bedbound but struggle to walk for very long. 

How can you get care and support if you have long Covid?      

If you need care and support at home and you are living in England, you can find out what help you can get by requesting a care needs assessment. 

Your local authority provides this and may be able to help you to receive home care and make adaptations to your home.

Home adaptations can include getting a stairlift, adding grab rails to your bath and bed, installing a walk-in shower or bath, fitting a step rail and installing an outdoor ramp. 

You can read this article about long Covid symptoms, treatments and financial support available.

Council told couple asking for home care ‘we’re not a maid service’

But Antony and Claire have waited over a year for a care needs assessment.   

The couple were referred to the adult social services department of Southend-on-Sea Borough Council last year.

Antony says: “The woman said: ‘what do you need?’ I said …’someone to come in and perhaps put the washing on and to make sure that we’re okay’.

“She lost her temper with me. She said ‘I don’t know what sort of service you think we are but we’re not a maid service. So no, we look after old people not people like yourselves who have got a bit of tiredness’. And then she put the phone down on me.”

Because of the cognitive impairment that comes with long Covid, both struggle to remember to book appointments, let alone chase things.

More medical research and more government funding for it is needed, says Antony. He fears anyone could be exposed to getting a life-changing illness as a result of a Covid infection. 

Around 1.9 million people in the UK were experiencing self-reported long Covid as of 5 March 2023, according to Office of National Statistics (ONS).

The most common long COVID symptom continued to be fatigue (72% of those with self-reported long Covid). This was followed by difficulty concentrating (51%), muscle ache (49%), and shortness of breath (48%). Symptoms adversely affected the day-to-day activities of 1.5 million people. You can check out the latest long Covid statistics published by the ONS here. 

homecare.co.uk contacts council to get couple home care 

After hearing Antony and Claire’s experiences, homecare.co.uk contacted Southend-on-Sea Borough Council to highlight their case and find out what it would do to help. 

Cllr Cheryl Nevin, the council’s cabinet member for adult social care told homecare.co.uk: “When we receive a referral regarding someone who needs support following illness, a member of our Access Team will contact the person to find out more about their circumstances and their individual needs for care and support.

“Depending on the outcome of these enquiries, we will consider arranging support directly. Please be assured we will always provide care and support to those who qualify for it.”

Just days after homecare.co.uk got in touch with the council about Claire and Antony’s situation, a council spokeswoman confirmed the couple had been contacted about their care needs, following our enquiries.

You can listen to Antony and Claire’s story in Episode 26 of Let’s Talk About Care podcast.