What my rollercoaster ride with ‘long COVID’ has taught me about being a pharmacist

Cough, tick. Shortness of breath, tick. Sudden change in taste, tick. On Easter Monday — 13 April 2020 — I’d tested positive for COVID-19.

Mine was described as a ‘mild case’. I was lethargic, had no appetite, sometimes my skin would be painful to touch and there were pins and needles all over my body.

Six days after the symptoms began, I started to feel better, but the next day I dipped dramatically, feeling heavier and more breathless than I’d felt before. But, determined to support my colleagues during the first wave of the pandemic, I rested and returned to work on 20 April.

I was back for ten weeks until, one morning, I woke up with an extremely sore throat. I had, by that point, been exposed to the virus a second time. I had another test, but this time it was negative.

A week later, I felt a sharp, stabbing pain just below my ribcage, like my stomach was on fire. A gastroenterologist assured me it would settle in a few days, but the days came and went. The pain travelled around my abdomen, and I had no interest in food. Off to A&E I went with suspected appendicitis.

My blood results came back normal and I was sent away with omeprazole. At a loss, I returned to work the next day, but the pain never went away. One day it was too much to bear: I was sure a fire had lit inside me.

I returned to A&E on the advice of the acute medics. I was retested, re-examined, and told to rest. This ‘would’ naturally resolve. But, again, it didn’t.

Instead of resolution, I got diarrhoea. Without going into too much detail, I’d not seen this kind on the Bristol stool chart before… I found myself scared to leave the toilet, sitting there for hours on end, doubled over with painful cramps. Some days I would take a handful of medication: mebeverine, Buscopan (Sanofi) and peppermint oil capsules — among others — but, 20 minutes later, I’d be passing them.

By this point, I’d lost a stone. This was unlike me: I’m 30-years-old, and usually very fit and healthy. I broke down wondering how long this would continue.

My GP recommended fluoxetine to help my mood, but I know that my physical symptoms were not brought on by my anxiety. In fact, I am certain it was the other way around; that the anxiety was triggered by my symptoms and the drastic effect they’re having on my life.

At the time of writing, it’s week 20 of these symptoms, which range from mild discomfort to the severe symptoms I’ve described here. The pain keeps me awake at night and I long for a decent rest. However, I still don’t have a definitive answer on why this is happening — it’s ‘just COVID’.

I’m finding it difficult to accept that I’m still so unwell. I look with admiration on other people returning to work, knowing that, early on, they were significantly more poorly than I was.

I’m not alone though: emerging evidence and shared experiences have helped me see this. I’m one of more than 30,000 members of the Long Covid Support Group on Facebook, and I’ve been overwhelmed to see strangers offering support to each other, but it’s also unsettling to realise how many people have the same devastating symptoms.

I’d like to think it hasn’t all been for nothing. Having spent the past five months at home, I’ve had time to reflect on how it feels to be a patient and how this will make me a better pharmacist.

One thing I’ve learnt is that laboratory tests do not always provide the full picture; we need to listen to the patient. Some illnesses may be ‘invisible’, with no immediately noticeable symptoms, but it doesn’t mean that they are not emotionally or physically draining.

Next, as professionals, we need to accept that we don’t know everything and that there will always be inaccuracies with testing. Our technology will always leave us a few steps behind, but we must not fall behind on really listening to our patients.

As we emerge from an unbelievable year, really learning from each other, and supporting each other, has never been more important.