Updated: Dec 18, 2020
I don’t get headaches and was surprised when I got a niggling head ache and a bit of a sore throat in March 2020.
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.
Short of Breath
It was almost a full week later that I noticed I was unusually a bit short of breath during a class I was teaching. I excused it with the thought of everything else going on, I'd not done my usual activity that week, and we were facing the known. 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, 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.
I realsied I had Covid.
My husband implemented a military 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 Whats apps from downstairs whenever communication was required. I felt grateful and isolated and alone all at the same time.
I drifted into the deepest sleep. Waking to see 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 feeling like my head wore a hat that was shrinking.
"headache had progressed feeling like my head wore a hat that was shrinking"
My joints felt doughy and achy.
My body was heavy, slow, exhausted.
My muscles became weak, especially in my upper body and left hand.
My brain felt like it was in slow motion.
My breathing was occasionally a bit ‘puffy’, almost like an allergic reaction, mainly after moving.
My temperature never went over 37 degrees,
I never needed help breathing, and save for one night where I began to wonder if ‘this was it’ the tipping point that I would struggle to breathe enough to need to bother the NHS, I didn’t have any major respiratory issues.
That one night though, my chest tightened and breathing was really laboured.
We kept checking my O2 levels with the monitor ordered from Amazon pre lockdown, ‘just in case’.
Maybe it was the fear of the unknown that caused my breathing to deteriorate that single night, who knows, my throat felt like it was closing up, my chest heavy.
I drank lungwort tea until it came out of my ears when I could, and tried to slow my breathing using breathing exercises, my symptoms eased after a few hours.
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.
I emerged from my self enforced cell, and as I did, our 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 sunk, we knew what we had to do.
Although she said she felt fine we discussed it she agreed and we put her into isolation. At first, she was amused, fueled with snacks, Netflicks and no household jobs to do.
Two days after she went into her room that changed, she got a temperature of 37.8. It lasted for two days and then disappeared. Her cough disappeared almost as quickly. 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 mins and wrote it on a chart.
It was towards the end of her first week of symptoms that 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 mouthes. Watching your child so ill, with a virus that nobody understanding is harrowing.
Neither my husband or our eldest got sick. It could be that our precautions worked or perhaps they were asymptomatic? We will never know.
Symptoms came and went, come in different clusters, one minute they would be significantly problematic and debilitating and the next completely vanish.
We were never tested for Covid as tests were not available in March.
By weeks 5-6 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, if lockdown was giving us an excuse. 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. Caring for us was traumatic for our family.
About 6-7 weeks after getting infected that 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 pre Covid exercise we would normally enjoy. After about 10 minutes into the session, our daughter bent over and said she couldn't do any more, at first we thought it was teenage -itis.
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 my batteries had been removed and I had to stop too. I literally ground to a halt and had to be helped inside.
My breathing deteriorated, it felt like I was trying to draw breath through a wet sponge, and like a fat cat was sitting on my chest. I remember feeling scared and we started monitoring my O2. We checked on our daughter, who was okay, but asleep. I crawled into bed and slept in a deep sleep.
After that meals were back to being taken in in bed for months, we did everything we could to conserve energy, showering and getting dressed became non-essential. Our world became small but we were too tired to worry. Hair washing was non existent, hair brushing, changing clothes had become exhausting. We stopped caring, it was all such hard work.
My husband cared, he was worried sick, but he didn’t let on to us at the time.
I continued to try to work and teach my classes online using any energy available to try to support my clients & keep my business going through the pandemic, staying in bed up until I taught, and returning to bed immediately after 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 'normaility' & 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 work out triggers. Our health seemed to go up and down like a yo yo, 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’. 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 out and listen to my chest in case there was a secondary infection and take some blood.
When he came I had to be outside, 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 dehydration, but ordered repeat bloods to check in two weeks time. The Covid test he took then was negative.
3 months after infection 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, 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 mensural cycle
Increase in shortness of breath
Inability to communicate
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 4 months. When she asked me how I was feeling and I became tearful. From that short appointment, she asserted that she thought I was “depressed not ill’ from Coronavirus and reminded me it is like a mile flu. A statement she later retracted and the GP confined he did not agree with.
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 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 the window trying to process, my husband, says I hardly spoke. I felt distraught. I felt like I was detached from my usually life.
Our daughters first GP appointment mid-June showed nothing, the GP thought he heard a heart murmur but then said it was fine. Her symptoms continued and I began to worry about calling the surgery, did they think I was fussing or had mental health issues?
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.
Our plans to make the most of our time and sit and do crafts in bed were thwarted with weak arms, fatigue and lack of capacity. Concentration levels deteriorated, vegetating in front of the TV was enough, sometimes too much. I remember starting at the tree out the bedroom window, there were no leaves on it when we got ill, by now the leaves were in bud.
Then 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 up to 30,000 )
It was like opening the door to a friend's warm kitchen and hanging out with people 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 nearly completely broke me, but just before it did I channelled that feeling into making a short awareness film with other parents I had met on Twitter.
I had an antibody test, it was negative.
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, 8mths on since we got ill;
I've had blood tests, and x-ray. I had a call from the GP to say I have hyperinflated lungs and was told it's COPD 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. Her symptoms are the same.
My daughter and I still have Long Covid and most days are in bed.
I cant't do house work or prolonged standing, but I can swim in the cold sea, and that feels glorious.
We live 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.
Founder Long Covid Kids
Sammie Mcfarland is a Wellbeing Coach & Entrepreneur.
She is also a sufferer of Long Covid and the visionary behind Long Covid Kids.
LongCovidKids.org is a parent and patient-led campaign & support group for parents of children with Long Covid. Our story started with a short film on long-lasting symptoms of Covid in children & we are working on