Shannon (name has been changed) is a nurse in her 20s who works at a busy hospital in Dublin, Ireland. When the COVID-19 pandemic struck in March, 2020, Ireland was one of the countries that went into a relatively early lockdown. But still, the patients began to mount. At work, Shannon was told her ward would be made a COVID ward and she was scared. “It was so much to take in. We basically learned as we went along. All the policy changes, the changes to personal protective equipment (PPE). And all this combined with the constant worry we ourselves could be infected and take the virus home to our families”, she explains.
Nothing could really prepare Shannon or her colleagues for what followed in late March and into April. “The ward became like a war zone. All the doctors and nurses were scared. We just didn't know what we were dealing with, or how to treat these patients. It seemed like on every shift, we'd have to move one or more patients to the intensive care unit (ICU), and also at least one would die”, she explains. “We were dealing with the stress and grief of the families. Normally when a patient dies, their family is there with them. As this can't happen during the pandemic, we had to ring their families. It was heart-breaking every time.”
Shannon decided to move out of the home she shared with her parents as soon as she knew she would be working on a COVID ward, and moved in with her partner, so that her middle-aged parents would be less likely to be exposed to the virus. It was at the end of April, when she had done two long shifts over two consecutive days, that Shannon started to feel unwell. “I had a few aches and pains in my legs, but as I had increased the distance I was running that week, I thought it was related to that. I also had a headache, but when you wear PPE a lot, headaches are common”, she explains. “But the next day I was very short of breath and exhausted, and later that evening I had a slight dry cough, followed by the loss of taste and smell. I knew that it could only be COVID-19.”
Shannon went to be tested and her positive result was no surprise, “It turns out there had been something of an outbreak at work among colleagues”, she says. “But looking back, it was unavoidable, we were all working closely together, sharing break rooms and had to remove our PPE to eat. There wasn't proper ventilation. And for nurses, we had so much close contact with the patients.”
Shannon also became aware of another colleague, also in his 20s, who ended up in intensive care with COVID-19. “I thought could this happen to me too? Could I end up in ICU? I was really worried.” Shannon infected her partner, but thankfully he recovered after just 2 days of illness. However, Shannon's symptoms continued, and for a month she felt like she had a bad case of influenza, with a blocked nose, sore throat, fatigue, and feeling breathless without moving. The doctors were worried about her breathlessness so they sent her a pulse oximeter to monitor her blood oxygen. “My partner and I even discussed at what point we might need to call an ambulance for me, just to have a plan in place”, she explains.
From the time of her positive test, Shannon isolated for around 3 weeks, worried that because her symptoms were not going away, she was still infectious. “I did what I could— rested, took vitamins, went on short walks in the back garden and lay in the prone position, because we'd been told that was helping patients with their breathing”, she remembers. The fatigue continued, and Shannon also suffered chest tightness and muscle aches and pains on a regular basis. Her heart rate was also regularly much higher than normal and she experienced palpitations. Attempting to go up the stairs left her exhausted. She also experienced night sweats and weight loss, and became prone to other infections—she had one fever, two urinary tract infections, and three skin infections. In addition to these physical symptoms, what she has been going through was and still is mentally tough.
Throughout this time, which was still relatively early in the pandemic, she had not heard anything about so-called long COVID, a much more familiar term now that collectively describes all people with long-term COVID symptoms. “When I was still experiencing symptoms, I started to wonder if I was losing my mind or if there was possibly something more sinister going on. Finally, in June, I saw a blog post in the BMJ by Paul Garner, an infectious diseases expert from Liverpool, UK, discussing this. All the things he was talking about, I'd been experiencing”, she says. “In addition to the physical symptoms, I have also been suffering a brain fog, difficulty concentrating; sometimes having trouble speaking correctly.” One place she found support and empathy is on Facebook, where she has joined a group of fellow long COVID patients who can all speak frankly about their experiences.
Shannon could see that, for most colleagues who she knew had been infected, they had eventually returned to work, mostly quite quickly. But as the weeks rolled by, 4, 6, and 8 weeks later, she still was feeling very unwell and could not go back to nursing. “It's not just for fear of my own health and my really limited energy, it's more that I worry about making a critical mistake in patient care when I can't rely on myself and my skills as I could before.”
She also worries that she could end up with chronic fatigue syndrome (CFS), limiting her work and personal life forever. To avoid having complete energy slumps, she follows advice for patients with CFS: prioritise, plan, and pace. “I plan my tasks one by one, and my day based on energy levels. I can't plan the day before because I never know how I'll feel until I wake up”, she explains, adding “I feel cold all the time, and have muscle twitches and reflux and am now taking various medications that I never used when fit and healthy”.
Her general practitioner (GP) has been very supportive, helping her onto medications where needed and also referring her for specialist care. Thankfully, Shannon also has private health insurance that is enabling her to see specialists she needs, including recently having a cardiac MRI scan to help work out the issues she is having with her heart. “While lying for 45 min in the confined space of the MRI scanner, it hit me how much I've had to do because of getting the virus; the consultant appointments, tests, physiotherapy, and GP visits. I have had to be my own advocate throughout this process and that's been hard. When I first requested an MRI 6 months ago, I had been denied, so I had to go privately. I thought of how my life has completely changed and I don't know when or if I will fully recover.” She adds: “I have been lucky having this insurance—I'm not sure what people do who need this specialist care and don't have any private insurance”. Following her MRI, Shannon was diagnosed with pericarditis and a pericardial effusion, requiring more medication.
Day to day, Shannon can become quite lonely. She tries to exercise every other day, but a slow-paced 30-min walk is the most she can do. She is looking forward to returning to work, but realistically believes she is at least 3 months away from a phased return. To deal with the mental struggle of COVID, she has had multiple sessions of counselling, which helped immensely, and also meditates daily.
She wishes that the Irish health-care system had more long COVID clinics to help manage cases like hers, but says these are only available in the cities of Dublin and Cork. She was able to attend two of these clinics herself. She pays tribute to the first-class care she has received in the post-COVID clinic at St Vincent's Hospital. “Here in Ireland, we are not as far along with treating long COVID as they are in places like France and the UK”, she explains. She has kept herself informed about the latest research on long COVID, and was particularly interested in a study by Dr Liam Townsend of Trinity College Dublin, Ireland, which showed that persistent fatigue occurs in more than half of patients recovered from COVID-19, regardless of the seriousness of their infection. The results of this study were presented at a European Coronavirus Conference in September, 2020, and received media coverage worldwide. “It was a real relief to me to see that people who did not need hospitalisation, like me, were just as likely to have long-term fatigue as those who were in intensive care”, explains Shannon. “It just made me realise there must be so many people out there going through something similar to me.”
Shannon is looking forward to something like normal life returning for her. “I just want my quality of life back, I want to be back at work, and feel like myself again. But for now, I'm having to deal with a whole load of physical symptoms and also my brain not working properly. Even for this interview, I had to write myself a list of key things so I didn't forget them. Just to be able to climb stairs and not be out of breath, that would be wonderful. But for now, my partner, who has been so supportive, is helping me do pretty much everything. When I'm completely out of energy, he's even carried me up the stairs to bed!”
For the blog post see https://blogs.bmj.com/bmj/2020/05/05/paul-garner-people-who-have-a-more-protracted-illness-need-help-to-understand-and-cope-with-the-constantly-shifting-bizarre-symptoms/
For the study on long COVID see PLoS ONE 2020; published online Nov 9. DOI:10.1371/journal.pone.0240784
