100 days of long Covid torture… and counting

Today I woke up, as I have done for most of the past 100 days, with a sense of dread. I did a mental scan of my body and tried to estimate what kind of day it will be.

Some days the sweeping muscle aches will already be there, a crawling fire in my thighs and calves. Yet parts of my body will feel as if they no longer belong to me — a dead finger, a numb foot and a spreading chill that sits deep in my bones.

On other days, I am free of aches but feel faint and dizzy, with weak, watery limbs that make a trip to the bathroom challenging, let alone walking up a flight of stairs.

Even on the best days, by mid-afternoon I am usually overtaken by a flare of symptoms and a strange, deadening exhaustion. This does not feel like ‘tiredness’ or even ‘fatigue’; it feels like my whole system has been poisoned. At this point, my mood will crash, the muscles around my face will ache and talking will become difficult, if not impossible.

This is long Covid, what’s sometimes also called post-Covid syndrome or long-haul Covid — a syndrome that follows the infectious period of Covid-19 which manifests as a cluster of debilitating symptoms and seems to have its own unique fingerprint for every sufferer.

'Some days the sweeping muscle aches will already be there, a crawling fire in my thighs and calves. Yet parts of my body will feel as if they no longer belong to me — a dead finger, a numb foot and a spreading chill that sits deep in my bones,' Kate Weinberg (pictured) said

‘Some days the sweeping muscle aches will already be there, a crawling fire in my thighs and calves. Yet parts of my body will feel as if they no longer belong to me — a dead finger, a numb foot and a spreading chill that sits deep in my bones,’ Kate Weinberg (pictured) said

It is very far from the lingering tiredness of a slow recovery that many people think when they hear the term ‘long Covid’.

And although doctors are still bewildered by what it is, the theory that has gathered the most traction, and resonates most with me, is that it is some kind of haywire immune response to the virus. For most of last year, I was not fearful of Covid-19. Not personally, though I was scared for a lot of other people.

One night early on in the pandemic I found myself lying in bed making a mental list of everyone I cared about over the age of 65, starting with my father, who is 89.

I even found myself listing people who were already dead, thankful that they did not have to die in this horrible way: in overcrowded wards, struggling for breath, isolated from their family. But at 45 years of age, fit, slim and with no underlying health conditions, I was not remotely worried for me.

When the schools opened in June I wondered — as surely most parents did — whether sending my two primary-age children, aged seven and nine, back to school was the right choice. Perhaps the virus would mutate and start making my children very sick?

Kate Weinberg said: 'This is long Covid, what’s sometimes also called post-Covid syndrome or long-haul Covid — a syndrome that follows the infectious period of Covid-19 which manifests as a cluster of debilitating symptoms and seems to have its own unique fingerprint for every sufferer'

Kate Weinberg said: ‘This is long Covid, what’s sometimes also called post-Covid syndrome or long-haul Covid — a syndrome that follows the infectious period of Covid-19 which manifests as a cluster of debilitating symptoms and seems to have its own unique fingerprint for every sufferer’

If my children were at school, how much more risky was that for my husband who, at 51, was in the age group above me? (In better days, I liked to remind him about this fact.)

The statistics, about this at least, were reassuring. While I was fearful of spreading the virus, it seemed overwhelmingly likely that should any of my family catch it, it would feel, at worst, like a particularly nasty bout of the flu.

And then, in November, I began to feel unwell. At the start I had none of the telltale symptoms that you need to get a PCR test on the NHS. No cough, no fever, no loss of taste and smell. I just felt oddly and unaccountably tired at certain moments of the day, as if someone had taken all my batteries out.

This was some other virus, I decided. Surely it was only because we are living in a global pandemic that it crossed my mind that it might be coronavirus. Plus, it had been a helluva year, wrangling the children on Zoom, never quite getting the space to work and the endless pinging of miserable headlines. Most likely I was just run down. But, as I was due to go for a walk with my father that weekend, I paid for a lateral flow test. It came up negative.

The following week, I started feeling worse. The odd batteries-out exhaustion hit for longer patches of the day and I began to feel light-headed and shaky.

'One night early on in the pandemic I found myself lying in bed making a mental list of everyone I cared about over the age of 65, starting with my father, who is 89,' Kate Weinberg said

‘One night early on in the pandemic I found myself lying in bed making a mental list of everyone I cared about over the age of 65, starting with my father, who is 89,’ Kate Weinberg said

I went to my GP who sent me to a gynaecologist to check my hormone levels. Nothing doing. I took another lateral flow test. Negative.

Spooked now, I started wondering about my genetic inheritance. My mother had died of a brain tumour at 35. Could these be early warning signs? And if not, how to be sure that it wasn’t Covid? No need for a brain scan, my GP said but, you know, those lateral flow tests have proven very unreliable. Take a PCR, she suggested. I did, and felt sheepish when it came up negative again.

By now I was going to bed for long stretches of the day when my kids were at school. I wasn’t a very good patient, though. ‘When a dog is sick, it lies down,’ I’d been told. Yes, but what about a dog that really hates being sick?

It wasn’t until the third week that I noticed my food tasted strange and my appetite had decreased (strange too, at least for me). I stuck my nose in a jar of coffee and inhaled. I’d lost my sense of smell.

At this point, my GP diagnosed me with long Covid. There is no other virus that presents like this, she said. Your last test was negative because you are no longer in the infectious stage, she explained, and the lateral flow tests that I had taken, most probably when I was infectious, are only 56 per cent accurate.

This was in November and, even then, she told me she had 30 or so patients, all of them women between the ages of 35 and 65, who had had similar symptoms. This was worrying. How many people had I passed it on to, thanks to the negative tests? And now that I was diagnosed, were there ways to treat it?

Not really, she admitted. Listen to your body. Absolutely no exercise, and do as little mentally as you can. Perhaps I would be lucky, she said, perhaps I would get better within a month, in time for Christmas.

I soon discovered that I had more questions than the doctors had answers. In fact, the doctors — and I spoke to plenty of them — mostly had the same answer: ‘We don’t know.’ Experiencing long Covid is a process of not finding out information — not finding out how long it will last, what might cause it, what might remedy it. The doctors simply don’t know.

Doctors are only now beginning to get a sense of how many people have it. Rajarshi Banerjee, who has set up a long Covid trial on multi-organ inflammation in Oxford, says that, according to current estimates, ten per cent of people who catch Covid-19, will develop long Covid.

And here’s the thing that took me completely by surprise, there’s a particularly high incidence, according to Dr Banerjee, of long Covid among Caucasian women between the ages of 30 and 50. In other words, I am likely one of ten million suffering some version of these symptoms around the world. I’m not an outlier, I’m a common case.

Kate Weinberg said: 'I soon discovered that I had more questions than the doctors had answers. In fact, the doctors — and I spoke to plenty of them — mostly had the same answer: "We don’t know"'

Kate Weinberg said: ‘I soon discovered that I had more questions than the doctors had answers. In fact, the doctors — and I spoke to plenty of them — mostly had the same answer: “We don’t know”‘

My doctor prescribed Panadol (paracetamol) and time. Most people, she tried to reassure me, get better by 12 weeks. Twelve weeks!? That couldn’t be right.

At this point, I was still not very sick and the idea felt impossible. I felt drained, dizzy and aching most of the time, but I was still mostly on my feet. So I smiled and left thinking, if I could organise childcare for a few days, and truly rest up: well, then, I’d be better within a week.

Exactly seven days later, I woke up feeling released. No muscle aches to speak of and a feeling of wellbeing I had forgotten. Time to go for a walk, I told my husband, and he accompanied me at a very gentle pace, ten minutes each way, to pick up a coffee in celebration.

The next morning I was floored. The symptoms were back in an ugly, vengeful way. Not only that, but my brain felt like it was covered in dust-sheets. I could barely string a sentence together. And that was my first experience of how long Covid can gaslight you. This is one of the worst things I discovered about the illness. Not only is it long, but it is cruel, too.

Like a manipulative lover, it allows you to feel good for a short time, just enough to open yourself up to hope, then it shuts you down. Reading to my daughter for half an hour in bed left me shattered for a day. A Zoom call for work gave me a two-day long hangover. And one long family lunch left me with blistering symptoms for days.

'Some days I’ll move backwards rather than forwards. I’ve just got to accept that. But I do believe — slowly, and with frequent relapses — that I am getting better,' Kate Weinberg said

‘Some days I’ll move backwards rather than forwards. I’ve just got to accept that. But I do believe — slowly, and with frequent relapses — that I am getting better,’ Kate Weinberg said

Another week later, I woke up once again feeling much better and walked around the garden twice feeling relatively strong. I was first elated, and then consumed with imposter syndrome. Was this all in my head? As if to mock me, two of the toughest days yet then followed.

I became afraid of the uncertainty. I was told to keep a diary of the illness, to try to chart progress. But when I was sick I was too shattered to write for ten minutes, and when I was feeling better, I didn’t want to tempt fate by writing it down.

I had this gnawing guilt. After all, I wasn’t struggling for breath, I wasn’t in an intensive care unit. I got frustrated at people who sounded dismissive of my fatigue, as if I were a character from a Jane Austen novel who had taken to my bed; but long after my doctor had diagnosed long Covid, even I remained suspicious, wondering what else it could be. ‘Let the time flow,’ one doctor said. But I was still not resigned to the fact that there was nothing I could do.

Alternative therapies all over the internet advertised success with long Covid. And so, armed with supplements, I went to battle.

Here are the things I tried: reflexology, homeopathy, Chinese herbs, shiatsu, high-protein diets, meditation, vitamin C, vitamin D, magnesium, zinc, niacin, iron, lactoferrin. My bedside table began to resemble Holland & Barrett.

‘Try the Wim Hof method,’ suggested two friends. He’s the man who advocates ‘cold therapy’. One ice-bath later I had to crawl back to bed. My children, who had broken up from school for Christmas, became used to sitting with me on the sofa, in bed, in the bath.

I started to get better. Then I relapsed again. ‘You’re still doing too much,’ said my GP. ‘Measure the steps you are taking. Limit it to 500-800 a day around the house.’ I couldn’t believe how few steps that was. Barely enough, I discovered, to take myself downstairs for mealtimes. I used up 25 steps making a bowl of porridge.

I started looking at the online forums for long Covid. It was a revelation, moving and appalling.

There were just so many people all around the world talking about symptoms much like mine. Many of them had been suffering since the outbreak of the pandemic in March last year.

Some had been hospitalised with the virus. Others, like me, had had such a light dusting of the virus they hadn’t noticed it and skipped straight to long Covid. There were terrible stories, too, far, far worse than mine: people who’d had strokes, people who were on dialysis, people in wheelchairs.

Perhaps most of all I was shocked by how many people spoke of the scepticism they encountered about the condition, whether from family, friends, employers or even doctors. Many had lost their jobs and been plunged into depression.

Even healthcare workers suffering from long Covid were being frozen out by colleagues. ‘Oh just get on with it,’ was the phrase that kept coming back. It felt as though the ‘pull-your-socks-up’ stigma of conditions such as ME and Lyme disease had found a new patient.

I am one of the very lucky ones. Lucky because I have not been hospitalised and I am not living with fear that I am going to die.

Lucky, too, because I have a very supportive husband, sisters and friends. One friend, who has struggled with long Covid since March last year, swaps notes with me on the phone most days. Every one of these things feels crucial to my recovery.

Often, when I cannot sleep, when my body is gripped with pain, I think about how I would bear it without this kind of love and support — and how many people suffering symptoms like mine or much worse are feeling isolated, bewildered, wondering some days if they are going mad.

Tomorrow I will wake up as I have for most of the past 100 days, with a sense of dread. The fear is different now because, for the first time in weeks, I am hopeful again.

Perhaps it is misguided optimism: I’ve learned that nothing is guaranteed about long Covid, least of all when it will end. But, in recent days, I have begun to spend more time with my family and to write a little. There is an energy and a lightness to my voice with the kids I no longer have to force.

Some days I’ll move backwards rather than forwards. I’ve just got to accept that. But I do believe — slowly, and with frequent relapses — that I am getting better.

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