My experience of long covid

My name is Jemma, I am 23 years old and the date today is the 16th of April. It’s been 8 weeks and 6 days since I first noticed that I was feeling under the weather. The initial week was during the February half-term and started like any other flu or infection I’ve had in the past. I first put it down to ‘leisure sickness’, a very common phenomenon within the teaching industry where we all get ill as soon as the holidays come around. I experienced tightness in my chest very early on and this was paired with breathlessness, heart palpitations, and general malaise. It was about 5 days in when I concluded that it was a chest infection, it couldn’t be anything else. I assumed this diagnosis as it felt like my lung were tiny and on fire, my chest felt like someone was sitting on it, and I also had a runny nose. Stupidly, the only time that I considered that it could be covid was when I sprayed some perfume and couldn’t smell it. This was the only instance where I lost my sense of smell. I took a test straight away. Negative. I ended up spending a day in the walk-in clinic to get antibiotics for my ‘chest infection’. I was struggling to breathe and my heart rate was through the roof. They did an ECG which came back normal and sent me away with some antibiotics. "Typical!" I joked, "It will go away as soon as I need to get back to work!". But when Monday did come around, I was still not well and required three days off work.

When I eventually returned to work on the Thursday, I was completely wiped. Over the next few days at work I ‘powered through’. I would teach a class and as soon as the last student was out the door, I would bury my head between my folded arms on my desk. Scrunching my eyes as tight as I could, just dreading the moment the next class would enter, which would typically be within the minute. I was overcome with fatigue. My legs ached and I would feel a huge urge to stretch them in different ways to ease the pain, but it didn’t work. I sent texts to my boyfriend that read "I just feel so ill". The chest pains were worse and my lungs felt so hot and heavy. I would have moments talking to students where I genuinely could not hear them because my heart was beating in my ears too loud. Over the next few days, I continued to push on with the thought that my symptoms would get better. However, they didn’t ease and in fact, new symptoms were making themselves known. I felt nauseous and had an awful sore throat that was worse than tonsillitis (when I still had my tonsils!). The following week, I got sent home from work one lunchtime. On the days I did manage to work until the school day finished, I would come home and have an incredible urge to pass out on the sofa.

16 days after initially getting my symptoms, at the end of February, I was fortunate enough to see a private respiratory consultant. During the appointment, I had Chest X-rays, extensive blood tests, a lung volume test, and a spirometry test. All of which came back normal. I even had a blood test for Lyme Disease. Negative. After the full MOT, in my doctor's words, on paper, I was the pinnacle of health. Great! So why do I feel so awful?

I continued to persevere with daily life, even trying to participate in a game of hockey. I would go to work and continue to put my head down on the desk any chance I got, still with the same symptoms aforementioned. In hindsight, I believe that during this time my body was slowly moving into shut-down mode and I was potentially setting myself up for burnout (which is ultimately what happened). I was doing what I could to survive so that I didn’t let anyone down and so I could carry on as ‘normal’. I played another game of hockey the following Saturday. Albeit, only for a short while since I had to come off due to a wave of heart palpitations, nausea, and feeling as though I would collapse (I still scored 2 goals though!).

The turning point occurred the following day when I was unrelatedly staying at my parents' house. I woke up extremely unwell and just had to be on the sofa. I couldn’t move, couldn’t speak and it felt like I couldn’t breathe. The only thing I could do was cry. My parents insisted that I should not go to work the subsequent day and after back-and-forth teary-eyed discussions, I reluctantly agreed. I emailed my head teacher and my head of department and told them I could not come to work. They were extremely supportive, which only made me feel worse. I coincidentally had a follow-up appointment with the specialist on the Tuesday evening. Funnily enough, I got the appointment time wrong and turned up an hour late. Something I can now blame on ‘brain fog’. The doctor took one look at me, told me that I had something called ‘post-viral illness and fatigue’, insisted that I had more time off work and that I needed to rest. He signed me off work for three whole weeks, which made me feel physically sick. I initially did not take the ‘fitness to work’ note seriously and in fact, when I emailed my employers to inform them of the doctor's recommendations I stated that I won’t be using the note and I’ll be back at work as soon as I can. I was so blissfully unaware of what was to come.

If I was to condense the next 3 weeks into a sentence it would be: 'I used every single day of that fitness to work note'. I stayed at my parents' house so that my Mum could look after me properly since my boyfriend works every day in London. I think it’s obvious when I say that it’s not smart to try to recover on your own. I wouldn’t have eaten if I didn’t get food put in front of me. I gained even more new symptoms, notably the intense surges of pain in my knees, calves, ankles, and soles of my feet. This was paired with extreme muscle weakness but not just in my legs. It would mainly be in my wrists and on occasion, I would struggle to make a fist with my fingers because they were so feeble.

Moreover, my fatigue became unprecedentedly debilitating. It was like someone had taken my batteries out or unplugged me from the mains. The only way to describe how I felt was to compare it to being sedated, like when you come round after being on anaesthetic. Even speaking was hard as it required me to move my facial muscles. I was so aware of the physical exertion required of my jaw when I needed to talk. I would be in a room with people talking to me and I knew what was required of me and that I had to respond, but at times I genuinely couldn’t. It felt like I was in a dark box, I could see everything going on around me through a blurry filter and heard only muffled human voices. I wasn’t fully there. Nothing felt real. A symptom that I can now name ‘derealisation’. Loved ones would describe me as lifeless during these episodes and a very common nickname for me during this time was ‘zombie’. There were times when the fatigue got so bad that I literally could not move a muscle when I was laying down. It felt like my limbs were weighted. I recall one day, as I was laying on the sofa, my head was in an awkward position on the cushion and I decided that I would rather have the uncomfortable strain in my neck muscle, instead of endeavouring to lift my head an inch over on the cushion. There would be days when I would sit on the sofa and struggle to reach for the remote a few centimetres from my hand. A sensation that unless you have experienced yourself, is very hard to understand.

My mum got really good at recognising how I was feeling. Mothers can read their child's eyes fluently. She’d take one look at me in the morning and knew not to ask me any questions. Even deciding on what she was going to make me for breakfast seemed like an impossible challenge. Decision-making was the worst part of the brain fog. I hated being asked any type of question since I knew it demanded an answer out of me. There were other forms of brain fog too, I was forgetful at times and most notably I was very bad at explaining anything (more so than usual!). I would sometimes struggle to form a coherent sentence and when I was successful, it took a huge amount of brain power to do so. I would struggle to think of the word I needed. This felt exactly like the ‘tip of the tongue’ experience that everyone gets, only more frequently and for words that I shouldn’t have needed to dig for. Another example I can recall was when I attempted to agonisingly type out the word ‘thank you’ in a text message to reply to the well-wishes from a colleague. It was like my hands weren’t really my hands and my brain was signalling another pair somewhere else.

There were good moments though. At around dinner time every evening, I would gain a new lease on life and feel like my old self. I would be able to make jokes and laugh and hold meaningful, insightful conversations. Nonetheless, bedtime would soon come and I would wake up in the morning as zombie Jemma again. I am sure my family must have compared me to Jekyll and Hyde. I certainly did myself. I dreaded going to sleep because I knew I’d be a different person when I woke up. When I did wake up each morning, I struggled to climb out of bed, which was unusual because I am a self-proclaimed ‘morning person’. It was what I imagine depression to feel like, even though I’ve fortunately never experienced it personally. Like most illnesses and syndromes, they always present worse in the mornings. It was like the lottery at the start of every day: "I wonder what symptoms I’ll have today and to what intensity?". There would be ebbs and flows. Some days I’d have extreme fatigue but without the foggy headache. On other days, I’d have the headache but the fatigue would be less remarkable. It was as if my body was experimenting each day with different combinations of ailments to find the perfect concoction of discomfort.

Throughout the day I would feel so envious of those around me that were able to do simple things that I couldn’t. The simple and pleasurable task of taking my dog for a short walk was inconceivable for those 3 weeks and yet, my Mum completed this with ease every morning. When I observed what other people were doing via social media and through messages, it would astonish me that they were able to carry on with their daily activities as normal. Everything for me stopped for those three weeks. There was no work, no hockey, no socialising, nothing. It was what the doctor ordered and I was slowly coming around to the idea of complete rest, even though I was yet to experience its benefits.

However, out of all of this, one of the worst symptoms I experienced has not yet been mentioned. A symptom of the symptoms. This was guilt. Guilt for not being at work, guilt for letting the department and students down, guilt for cancelling plans, guilt for not seeing people, guilt for not playing hockey and letting the team down, guilt for people having to look after me, guilt for not being at home, guilt for not being able to help others, guilt for not being myself, guilt for not feeling normal and guilt for being guilty. It was an illness of its own and I still have it now. However, I do know now that this guilt presented as anxiety and this can be catastrophic to any recovery from an illness. It doesn’t make it any easier to feel less guilty though, dammit!

After the 3 weeks of staying at my parents' house, Easter Holidays had begun. Not that it made any difference to me, I barely knew what day of the week it was. Typically at this time of the year, I’d be filled with excitement at the thought of making it through term 2 and going away somewhere. But instead, I was trying my best to concentrate long enough to fill out a claims form for my travel insurance company as we decided to cancel our trip to the Lake District. The thought of even packing for the holiday sent me into a spin. Instead, I got home and used every ounce of energy I had to unpack my clothes and I rewarded myself by getting into bed. I felt extremely overwhelmed to be home again and I am not ashamed to say that there were many tears produced by me that evening. Over the next few days, I continued to take it easy, but I did notice myself feeling a little brighter. Perhaps it was the change of scenery, the three weeks of rest, or the many vitamins I was taking. Whatever it was, I did notice a slight lift in the fog. My boyfriend and I did decide to go away but to somewhere far closer to home. We stayed in a relaxing shepherd's hut with a log-fuelled hot tub. Typically I would drive as I get car sick, but I asked my boyfriend to drive everywhere as I was still suffering from fatigue and brain fog. During our 3 nights away, we did manage to go to two restaurants which allowed for a slice of normality and it was another indicator that I was picking up. I had a really lovely time away. When we got home, we spent lots of time with family over the Easter weekend (the best medicine in my opinion!) and I still knew I had to take it very easy. I certainly was not out of the woods yet. The second week of the Easter holidays brought more signals of recovery. I felt motivated to complete small tasks I wouldn’t have dreamed of doing when I was at my parents' house. I went on a short dog walk by myself. However, I have still had episodes of extreme fatigue. I have good days, bad days, good moments, and bad moments. Symptoms come and go, not to the same intensity or frequency as previously but I still experience them. There is no rhyme or reason to any of it. Even using a fatigue-tracking app, I am yet to find a pattern. For example, I had an extremely severe headache a few days ago which lasted 2 days. There was no obvious trigger. No painkiller could shake it and only sleeping helped.

I know very well that I am still in recovery and a few days ago, with the end of the Easter holidays looming, I saw a GP to discuss my symptoms (something I probably should have done in the first instance). She has put me on the Long Covid referral list, which could be sent off in the middle of May, depending on whether my symptoms are still present (it can only be sent off 3 months after the initial symptoms appeared). In the same appointment, the doctor also signed me off work for the first 2 weeks of the summer term. A measure that I did not anticipate happening but now have to accept again.

It’s now one day before school starts up again and out of all the days this week, yesterday and today have been the worst. My muscle weakness, especially in the wrists, has made a comeback and I have found it difficult to even talk at times. I have felt dizzy and lightheaded whenever I’ve been standing. I forced myself to go on a short dog walk with my boyfriend yesterday, but I struggled to keep up and had to walk slowly as I was completely out of puff. I’ve been breathless and my chest and back feel as though they are between a large vice being tightened. Although, for reasons unknown to me, over the weekend my foggy little brain has allowed me to write this entire post. I’ve just spilled everything down onto a document and it’s made me feel a little lighter. Before writing this, I was searching for any blog post that resonated with me about how I am feeling, especially since I thought before this weekend, that I was making incredibly big leaps in my recovery. I couldn’t really find anything. On one hand, I thought the clear lack of posts about other people experiencing post-viral illness is a good thing, as I would hope no one else has had a similar journey to mine. However, I know that this is not true at all and lots of people, of all ages, have been suffering. Some have been suffering far far worse than me and for much much longer.

Whether this is long covid or another type of post-viral illness, I probably will never know and it doesn’t really matter either way. I do not think the doctors will ever be able to tell me. The most important thing is my continued journey of recovery. I have now accepted that I will not be returning to work on Monday, no matter how badly I want to and how guilty I feel. I have had to accept that my year 11s will have another couple more weeks without me to help them prepare for their GCSEs starting soon. I have accepted that I won’t be doing many fun things for my birthday at the end of the month. I have accepted that I probably won’t be playing summer league hockey and that I won’t be going on a run or exercising anytime soon. I have accepted that when I do go back to work I won’t be a ‘perfect’ teacher and I will need extra support from colleagues. I have accepted that I have let people down and I will continue to let people down and that’s okay. It’s taken me a long time to get here but I have accepted (almost) everything.

---

I am, by nature, a glass-half-full kind of person, and so I have found some silver linings through all of this, which I am very pleased to share.

Here are 11 of them that I have listed below:

• I have spent more time with my parents, sister, and baby niece than I could ever have wished for during those 3 weeks at my family home. It was wonderful (even when they called me zombie).

• I have had far more time on my hands and breathing space to think more about my future and what I want to do with it.

• I have started painting a picture a day which I have enjoyed doing.

• My hard work as hockey captain showed that it paid off (even when I wasn’t there for the last few games) because we won the league and secured promotion.

• I have learned to appreciate more of the small things. For example, the sun shining through the window or when my rescue dog tries to get close to me on the sofa (she would normally demand her own space).

• I have confirmed more than ever that even when I feel ‘useless’, I am still awesome and worthy. I am perfect exactly the way I am, regardless of what I achieve in a day.

• I’ve spent way more time on FaceTime with my lovely sisters and I would have never had the time to do this normally.

• This time off work has shown me that life does truly go on (no matter how much you think it won’t) and the school will be okay without me so quit feeling guilty about it.

• It’s made me realise that a far slower-paced life is not always a bad thing. I have found so much joy in little things and it’s made me consider that potentially I was a little bit addicted to stress.

• It has shown me how loved and supported I am by my family members and loved ones. The support they have given me has been invaluable for my recovery.

• And finally, It’s forced me to prioritise myself, say no to people, set up healthy boundaries, and focus on my health, because that’s the most important thing.