A puppet in search of answers and pulled by the strings of Long Covid

CW: Long Covid, anxiety, medical gaslighting

When I say I will write in a few days, I usually mean a few months. Or several. I had the best intentions for new routines in 2021, hoping to blog every month. It started off well in my first term as a Newly Qualified Teacher (NQT), when I could depend much more on my energy levels. I should know better than to promise you updates, though; my first year of teaching forced me to work on being more realistic with my expectations, both of myself and others. I frequently put off tasks for weeks and months, especially when I am rundown or under pressure. A seemingly simple task like washing up yesterday’s breakfast bowl gets left for longer than is sanitary. And you can add to that list: paying council tax in time to avoid incurring a summons, putting out the bins before collection or even pressing ‘Send‘ on a simple message draft to a friend. I am ashamed to say I put it all off and no amount of to-do lists or post-its seems to work, as I seem unable to prioritise anything other than my job. 

Previously, I had always turned to Google to guide me through the challenges in my life. Google was like a non-judgemental friend, with its comforting guarantee of answers just a click away and always on hand to help me navigate overwhelming new cities abroad, instruct me on how long to roast potatoes for, and talk me through how to change batteries in a smoke detector. Google was a comfort, at least, until I tested positive with Covid-19 in December 2020, on the last day of the school term – just when I thought I had made it through with less drama than some of my unfortunate colleagues. When it comes to the matter of catching a new infectious disease at work, though, there is only so much that Google can really help with. The answers do not exist for anyone – Covid-19 has defied Google and medical science, and disturbingly, its seemingly never-ending supply of symptoms has defied me and my sense of self. I know myself pretty well, I thought, I am mentally strong and consistent. But after nine months of learning what my physical limits are, I am still finding my way on this journey with ‘Long Covid’. 

A puppet in search of answers and pulled by the strings of Long Covid – ink and watercolour

What is ‘Long Covid’?

The broad term refers to long-lasting symptoms that continue to develop more than 12 weeks post-infection. Over 500 symptoms have been recorded and can include – but are not limited to – fatigue, chest pain, shortness of breath, palpitations, muscle aches, gastro-intestinal issues, and neurological symptoms such as headaches, brain fog and dizziness. The list goes on and the symptoms can change over time. According to the Office for National Statistics (ONS), approximately 114,000 of the million people living with Long Covid in the UK work in education (2021). In the context of low vaccine take-up among young people aged 18-34 and amid increasing research into the long-term effects, I hope that sharing my experience can raise awareness and provide comfort to others struggling. 

When you find yourself sitting on the floor to clean, or allowing deliveries of shopping bags to congregate at the bottom of the stairs for days, you realise you are well outside of “normality”. You have a problem, and accepting that problem can be difficult. I only realised I hadn’t washed up for three weeks when I had no clean cutlery left – I had completely let myself go; I had lost control and my usual dyspraxic coping mechanisms were just not working. Friends noticed the difference too and told me that I seemed very out of breath on short walks when we met up. One said they didn’t think it was right that I was working full-time in this condition.

Beyond a collection of irritating physical symptoms, the experience has been unnerving due to its unpredictability; it is anxiety-inducing to wake up each day and not know quite how I will feel or how a certain activity will trigger a symptom in the future. My energy levels still seem to fluctuate each day, so while teaching full-time, I find the symptoms distracting and challenging to manage without regular rest breaks. When faced with low-level disruptive behaviour, the pressing sensation in my chest intensifies the lack of physical control, at just the time when I am in most need of reliable energy levels to exert my presence in the classroom and meet the Teaching Standards. There is certainly an uncomfortable tension involved in prioritising what feels good for my body, over what feels right for my students’ education, and vice-versa.

And what about Dyspraxia? 

How Long Covid might interact with pre-existing conditions like Dyspraxia has not yet received much attention by medical professionals, though through support groups I understand that other dyspraxics also notice that their memory and processing has worsened since Long Covid. Whether or not dyspraxia is a “neurological disorder” has been subject to much discussion. Forgetting my best friend’s birthday, for example, was a catalyst for me realising that I was not functioning at “normal” capacity, as I had never forgotten something so important before. So was this ‘brain fog’ – a reportedly common Long Covid symptom, affecting cognitive function and memory and most likely caused by inflammation to the functional nervous system – or just dyspraxia, the coordination disorder I have lived with for years and for which I have found my own coping mechanisms? To what extent is dyspraxia a permanent part of my ‘personality’, or as Occupational Health described it, something I am ‘suffering’ from, like symptoms of a disease? 

It can be hard to explain the impact, though mild, on my daily life. Narratives tend to dominate that such symptoms might be ‘just stress’, when someone looks ordinary on the outside. After all, I am certainly not ‘ill’ in the sense of having a cold or the flu. But I am in a different body, a shell of the person I once was. I can no longer exercise properly without chest tightness, pain, and shortness of breath. Intermittent tremors, headaches, earaches, tingling, crawling, itching, and electric shock pains that pulsate through my body make me question my sanity on a daily basis. How can a new part of my body be zapping; where is the logic in this twitching when I grasp my hair straighteners? Muscle weakness when I struggle to open a jar? In my head and hands deciding to go numb as I try to fall asleep to switch off my body and fall asleep? Why is it that my brain is still wide-awake and now fizzing, like the contents of a bottle of coke left out in the sun? I have felt like a puppet whose strings are tugged at and pulled in all directions, whilst I am determined to throw myself onto the stage and pretend that I can do this and ‘teach as normal’, desperately wanting to be ‘fit for work’.

But this is my stage, I repeat as a mantra borrowed from a close friend whose grounding words helped me get through my first year in teaching. I have tried to ignore the symptoms, meditate through them, exercise despite them, and continue as ‘normal’ (whatever that means) – but however I seem on the outside to my students or colleagues, it is a different story on the inside. Mild as the symptoms are classed as, they are real and they still interfere with my life, worsening when I over-do it. I have to be much more mindful of my ‘spoons’ and how I choose to spend them (click here to read more about Christine Miserandino’s helpful Spoon Theory analogy to explain chronic illness). It took four months of blood tests, ECGs (heart tests) and chest scans coming back as normal before I could be diagnosed by exclusion and referred to a Long Covid clinic, and nine months before I was seen by the clinic. When seen by the clinic, it was disappointing to not be offered any sort of ‘quick fix’ for the discomfort and fatigue, yet I was also grateful to learn that Covid has caused a dysfunctional breathing pattern, known as a ‘breathing pattern disorder’, which could be exacerbating my symptoms. This is apparently common in ‘Long Haulers’ and I learned that I must now retrain my breathing pattern and reduce how much I do, in order to support my recovery from symptoms.

Throughout the past months, though, I have felt a major gratitude for my baseline health. I was never hospitalised, never left bed- or house-bound. I am fortunate to be able to walk and manage to work in a job I love. I can go about my daily life still – even if ‘functioning’ certainly means something different to what it meant in November 2020. These are things that huge numbers of people with Long Covid are not able to do. In its own way, this gratitude has been healing for me, much like painting and writing as an outlet for untangling my body’s warped state. Ultimately, my own Long Covid experience is just that – and can only be that – just one experience. It has heightened my awareness of the experiences of thousands of Chronic Fatigue Syndrome (ME/CFS) sufferers, whose voices have been gaslit and silenced for decades. The struggles of chronic illness are multiplied when they intersect with race and gender inequalities, where people living under greater oppression struggle for their voices to be heard. I share links to some other voices and advocates below, so please do have a read.

In light of how frequently women and also people in the neurodiverse community are subjected to medical gaslighting, I also feel fortunate to have had a patient and understanding doctor who has listened to my concerns and made me feel heard each time I phoned her about a mysterious new symptom. Even when she didn’t know the answers to my disgruntled whys and hows, she took steps to refer me for further testing and to the Long Covid clinic. The professionals at the clinic were incredibly reassuring as they had heard my symptoms so many times before. “You will recover from this”, they promised me, “it is just going to take time”.

Long Covid Kids

Of course, Long Covid does not only affect adults. As many as one in seven children (14%) who test positive with Covid still have symptoms 15 weeks later (UCL, 2021). Developing Long Covid as a teacher has made me more aware of the long-lasting symptoms in the children I teach. It is concerning that increasing numbers of young people who contract the virus are presenting with an array of long-lasting symptoms after weeks and months post-infection. One of my students came to see me at the end of a lesson back in May: “Miss, my chest feels tight”, he said. “I feel a pressure on my chest and my arms are also tingling. I’ve had blood tests and I’m waiting for the results…” And another student the following week: “Miss, I have virus-induced chest pain, I need to take some time out…” These are just the students who are able to or choose to articulate their symptoms aloud. If my brave students can talk about their experiences then I think I can, and should, too. After all, they are what push me to get up in the morning and drag up my reluctant body into school everyday, so it matters to try and make them feel less alone in their experiences. 

Finally, please feel free to reach out to me if you are affected with lingering post-Covid symptoms and would like to share your story with me. Your experiences are real and valid, and I promise you are not alone. Be kind to you.

This time, I will avoid the rookie error of promising to write again in a few days… But I hope to write again soon.

Take care everyone,

Misspraxic

Links to further reading

Support and information:

Articles:

Instagram accounts to follow:

@longcovidsos

@long_covid_kids

@jasminehayer_

@wearebodypolitic

@_coronadiary

Petitions you can sign:

Please let me know of any others and I will add to my list.

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