Long Covid kids

A year since the start of the Covid-19 pandemic, we have all become armchair experts. It’s hard to remember a time when it was new and we had so little information about what to expect if we were unlucky enough to catch it. A few key messages emerged early in the first lockdown in March. Symptoms to look out for were a sore throat and fever – anyone developing those was told to self-isolate at home, assured that they would soon recover, unless they were elderly or had underlying health problems. Except that was not always the case. Sammie McFarland, a well-being coach and entrepreneur from Dorchester and founder of Long Covid Kids, tells her story.

“I got a niggling headache and a bit of a sore throat in March 2020 and I was busy. The world was facing a pandemic, there was a lot to think about, pivoting the business, getting the eldest back from uni and making sure we were prepared for the inevitable lockdown. I assumed that was it. A week later I noticed I was, unusually, a bit short of breath during a class I was teaching. With everything else going on, I’d not done my usual activity that week. I assumed that was it.

We went for a walk in the woods after collecting our eldest from Uni. My legs felt heavy and I was unusually breathless. The girls teased me for being old as they went ahead and climbed a tree. I’d been busy. Again, I assumed that was it.  Then later that evening as I began to feel worse, I started to piece it all together. I didn’t have the high fever or a bad cough so I had missed it, but I realised I had Covid-19.

My husband implemented a military-style operation and made up the spare room for himself. That one thing felt like a scary shift into the unknown. He started bringing me food and drinks, wearing masks and gloves, and sending WhatsApps from downstairs whenever communication was required. I felt grateful and isolated and alone all at the same time. 

I drifted into the deepest sleep. Seeing his masked face as he woke me to take paracetamol, or to drink, scan my head to check for a temperature, I remember wishing he would leave me alone. My entire body felt heavy and the headache had progressed to feeling like I was wearing a hat that was shrinking. I didn’t have any major respiratory issues and (like everyone) we were told to stay home, to manage alone, so we did.

As the period of isolation came to an end, I was left feeling like I had been run over by a bus, in the same way, you can do after the ‘flu. I felt relief that I was one of the fortunate ones, I hadn’t needed hospitalisation. My body was weak, but I reasoned that was to be expected, I had been in bed fighting a virus.

As I emerged from my self-enforced cell, our teenaged daughter started with the odd cough. I recall hearing her in the shower and my heart sinking a little. I heard her again getting dressed and my heart sank, we knew what we had to do: put her into isolation. At first, she was amused, fuelled with snacks, Netflix and no household jobs to do. But two days after she went into her room that changed and she got a temperature of 37.8 degrees. It lasted for two days and then disappeared. Her cough disappeared almost as quickly but then symptoms developed:

  • Her throat was sore.
  • She felt dizzy when standing.
  • She regularly felt faint and collapsed.
  • Her appetite reduced to almost nothing, or she felt sick when eating
  • She became floppy, pale and very tired.
  • Unresponsive with a glazed look

It was terrifying, and we felt helpless. We couldn’t find any information, and we knew that we shouldn’t go to the hospital unless she couldn’t breathe. My husband and I would debate every change in her condition continuously, trying to rationalise each step of her care. We took observations every 30 minutes and wrote it on a chart. Towards the end of her first week of symptoms, we called 111. Our vibrant child had become floppy and her breathing was laboured. They advised paracetamol and to stay home. So we did, with our hearts in our mouths. Watching your child so ill, with a virus that nobody understands is harrowing.

Neither my husband nor our eldest got sick. It could be that our precautions worked or perhaps they were asymptomatic? We will never know.

Symptoms came and went, came in different clusters; one minute they would be significantly problematic and debilitating and the next completely vanish. We were never tested, because in March testing was only available to patients admitted to hospital. After five or six weeks, we felt stronger and started to walk the dog in the woods, it felt hard work, but we had been ill and knew it would take time to build up. We managed some meals sitting up in the garden instead of the bed. We thought the worst was behind us.

I began to wonder if we weren’t trying hard enough, everything I read said we should be getting better. Had we become lazy? Some days we felt fine, others super-tired, perhaps we needed to ‘pull ourselves together’. Waves of emotion washed over us: guilt, distress, resentment, frustration. We all took turns, including those in the house who didn’t contract Covid-19. Caring for us was traumatic for our family.

About six or seven weeks after getting infected, we tried a significantly modified exercise session in the garden to see if it would ‘perk us up’. Break the spell so to speak. We set up a fun family exercise session in the garden, like an assault course, thinking it might encourage us all to move, and boost endorphins. It was super-easy compared to the exercise we would normally enjoy. After about 10 minutes, our daughter bent over and said she couldn’t do any more. She dramatically clutched her body and said she needed to go inside to lay down. My husband and I continued, but very shortly after, I began to feel as if my batteries had been removed and I had to stop too. I literally ground to a halt and had to be helped inside.

After that, meals were back to being taken in bed for months. I continued to try to work and teach my classes online, using any energy available to try to support my clients and keep my business going through the pandemic, staying in bed right up until I taught, and returning to bed immediately after on most days. Sometimes my husband would help me back up the stairs, sometimes I would sob in pain or frustration. On camera, I tried to be brave. I love my work, people needed some ‘normality’ and we needed my income.

We tried to do a little more each day, like doctors on TV were suggesting for post-viral recovery. Some days we felt fine, others super-tired with or without activity. We tried to look for patterns and to work out triggers. Our health seemed to go up and down like a yo-yo, with no rhyme or reason to the way we felt.

We began to wonder if we had something else going on, something more than ‘mild Covid-19’. Another condition perhaps? In early May I called the GP for the first time, complaining of a new constant cough. After some discussion, he said he wanted to come and listen to my chest in case there was a secondary infection and take some blood. When he came I had to be outside, even though I hardly had the strength to get down the stairs.

The results came back clear, my bloods were fine except for some reduced kidney function. The GP dismissed it and thought it would probably be due to dehydration, but he ordered repeat bloods to check in two weeks’ time. The Covid-19 test he took then was negative.

It was three months after infection and we were still unable to prepare food, shower or perform simple essential living tasks, we had little or interest in anything other than rest.

My husband and I discussed if we were trying hard enough, if lockdown was giving us an excuse. Had we become used to doing nothing, were we depressed? He didn’t think so. Our daughter had stopped showering, and I wasn’t strong enough to help her, it wasn’t because I was lazy, I was so unwell. We both needed a carer. My heart broke. I wasn’t well enough to help our daughter with simple essential tasks.

My husband was working from home and had become our carer, bringing food and drinks throughout the day and running our home, we were starving all the time and kept him busy. We later learnt this was due to altered sense of smell. Without him, we would have needed assistance, or to be in the hospital.

By the end of May, we were essentially on bed rest still. We did try one trip out for a picnic and had a lovely couple of hours, but those hours out resulted in three days bed rest, severe brain fog, breathlessness and weakness. We soon learnt that everything with Long Covid has a kickback. By June new symptoms had emerged:

  • Brain fog, cognitive decline, inability to find words, memory issues
    • Sense of detachment from surroundings
    • Pink dry eyes
    • Joint pain, hypermobility
    • Changes in menstrual cycle
    • Insomnia
    • Mouth sores
    • Burning mouth
    • Numb toes/foot
    • Stuttering
    • Abdominal pain
    • Increased shortness of breath
    • Inability to communicate

and more

The author before Covid-19 and its long term consequences

The depth of the fatigue and clusters of symptoms were like nothing we have experienced, it was only while propped in bed that we felt it was manageable. There have been days where I haven’t been able to communicate, and I have worried about what that means for the future.

The second blood test was with a nurse we had never met, she was the first person I had seen outside of my home in four months. When she asked me how I was feeling, I became tearful. She asserted that she thought I was “depressed, not ill’ from Covid-19; she reminded me (inaccurately) that it is like a mild flu.

I didn’t feel depressed, I felt exhausted and worried so I reasoned with her that I was interacting with my family as much as I was able, communicating with friends and reading into ways to support our recovery. I mentioned that our daughter has similar symptoms and was also ill. The nurse decided that my daughter was also “depressed, attention-seeking” and “mimicking” my symptoms.I came away disheartened and in utter shock. It rocked my very being to the core. The nurse later retracted her statement and the GP confirmed he did not agree with it.

The next days were spent in bed. I felt weak and tearful, I cancelled the small amount of work I was doing and lay soul-searching, looking out of the window trying to process what was happening to me. My husband says I hardly spoke. I felt distraught, detached from my usual life.

Our daughter’s first GP appointment in mid-June showed nothing. The GP thought he heard a heart murmur but then said it was fine. The GP reported back that her ECG was clear which, like everything else we were experiencing, made no sense. I asked him what we should try next. He looked at me as if exasperated and I felt judged for asking,

He never said anything, it was a feeling I got when he asked me what I wanted him to do. All tests were saying everything was normal, she should have been healthy. But her symptoms continued and I began to worry about calling the surgery, did they think I was fussing or had mental health issues?

Our plans to make the most of our time and sit and do crafts in bed were thwarted by weak arms, fatigue and lack of capacity. Concentration levels deteriorated, vegetating in front of the TV was enough, sometimes too much. I remember staring at the tree out the bedroom window. There were no leaves on it when we got ill, but now the leaves were in bud.

One day I woke up with a wave of determination and got onto my laptop. I stumbled across the Long Covid Support group, I can’t remember how. Fate I guess. There were 5000 members at the time, it is now approaching 34,000. It was like opening the door to a friend’s warm kitchen and hanging out with people who really understand you. It was a lightbulb moment. 

I wrote to the practice manager at the surgery and highlighted our experience. To their credit, the surgery soon responded to my letter of complaint with a phone call, and the promise of a letter to follow, but the damage could not be undone. The letter we received felt like an attempt to placate us, in truth it was a disappointing letter of excuse. The nurse had “misread my body language due to the mask I had been wearing” but was writing to recognise it was inappropriate to discuss a child who wasn’t present or to make a diagnosis she was not qualified to make, especially on a child she had never met. Trust was broken. 

I realised I needed to look into understanding the condition for myself and seek advice from further afield. The realisation that we were unsupported was all consuming, and seven months after my daughter and I got ill, it nearly completely broke me.

I channelled that feeling into making a short awareness film with other parents I had met on Twitter and using data collected in a study by Frances Simpson, published in the British Medical Journal. We put the film on YouTube.

After the release of the film, more parents started reaching out with the same challenges, so with Frances’s support, we started The Long Covid Kids Parents Campaign & Support Group which grows day by day. Now we have LongCovidKids.org which we will continue to develop as it is needed.

As it stands, eight months on since we got ill: I’ve had blood tests and x-ray. I had an antibody test, it was negative. I had a call from the GP to say I have hyperinflated lungs and was told it’s COPD (chronic obstructive pulmonary disease) but I haven’t been given any advice. My bloods continue to show reduced kidney function. My symptoms are the same.

Our daughter has had a blood test and an ECG. We have been told she has a ‘soft’ heart murmur and symptoms of POTS (postural orthostatic tachycardia syndrome). Her symptoms are the same. My daughter and I still have Long Covid and most days are in bed. I can’t do housework or prolonged standing, but I can swim in the cold sea, and that feels glorious.

We still don’t have any answers, but we have more knowledge and are learning all the time. We will keep campaigning and supporting others until we all get meaningful support.”