Nurse diagnosed with Covid-19 helps to build story of recovery
After suffering with persistent symptoms following a positive coronavirus test, Jane Ireson set up a recovery website to share experiences. Laura Reid reports.
This ongoing tiredness and breathlessness is worrying really.
Jane Ireson, reflecting on her symptoms.
THE PAST few months have been a “scary and confusing” time for 42-year-old Jane Ireson.
On March 24, a day after being tested for coronavirus, she received a positive result. It was not what the hospital cancer nurse expected – and the turbulent 14 weeks that have followed have been an evolving and unclear journey of recovery.
“I had a cold for a few weeks and I started to get a bit worse,” she reflects. “I was able to get a test through work. I was worried about exposing other people if I did have it.
“I lost my sense of taste and I was really achy and shivery and really tired. I was having headaches and had a bit of a sore throat. I didn’t have a cough though and I felt like I had a temperature but I didn’t actually have one. I just felt like I had a bad cold.”
The virus progressed and caused unpredictable swings in Jane’s health. The mother-of-two was repeatedly left feeling better one day before being struck down again by another wave of the illness, with new complaints such as a rash, dizziness and palpitations.
Though things are now improving for Jane, who is also a PhD student at Leeds Beckett University, symptoms of breathlessness and fatigue have been the most enduring.
“There’s been certain symptoms that have been persistent and have been there off and on throughout,” she says.
“They’re acute now. I’ve not had it for a while where I’ve had to be stuck in bed for days on end. But everyday I feel limited by what I can do due to ongoing symptoms.
“I’m definitely better overall but it’s now about 100 days since. In the beginning, I thought it was going to be like if you get a bad cold or flu – you have it and then you feel better.
“It’s been really scary and confusing thinking what’s going on? Why do I still feel ill? Why do I feel better then worse again? This ongoing tiredness and breathlessness is worrying really.”
A month after her Covid-19 diagnosis, Jane launched a patient-focused recovery website with friend and technologist
Ed Richardson, to help others struggling with symptoms.
Through it, she is encouraging people to share their own stories and it is hoped that by highlighting their lived experiences of the illness and recovery, the website can help to manage expectations and reassure others that they are not alone.
“There was a lack of knowledge, understanding and information about recovery,” she says.
“It wasn’t what I expected it to be. Just through the people I was speaking to, there was other people who were having the same thing as I was.
“Obviously there’s going to be a lack of knowledge around the condition because it’s so new but I felt there was a real need for peer support, to reach out to other people who might find themselves in the same situation, try and share our experiences, and to have an online space where we could collate resources such as articles or research that had been published on the matter.”
It is now more widely recognised that there are a number of people whose symptoms from Covid-19 will vary and persist for weeks and even months after falling ill, a group known as ‘long-haulers’.
In Facebook groups, blogs and through the mainstream media, individuals affected are sharing more about their experiences.
“It was a confusing and isolating time for me,” Jane reflects on her own journey. “I think a lot of peer support has been galvanised over the last two months with groups popping up all over the place, because this is not uncommon.
“Having a website available, where you can go for peer support and resources, I think is really reassuring and it bridges that gap whilst the knowledge is catching up. I’m not saying we’ve got answers and we’re not giving advice but it’s a reassuring space to know other people are going through a similar thing.”
Through her PhD research, Jane, who is a Clinical Academic Macmillan Nurse Specialist working in Sheffield, captures the experiences of people living with a rare cancer to make that part of the medical understanding of the condition and inform the way that care is delivered.
In partnership with Leeds Beckett, she is now planning for future research exploring the experiences of those who have Covid-19, through stories shared on her website. “The University is looking to partner up with the website to do qualitative research on the stories,” she explains. “It’s about generating a narrative about what Covid recovery looks like and a lived experience of it, not just a list of symptoms but a look at what the impact of it is on someone’s life...
“It’s a small piece of the puzzle but it’s about trying to figure out what the impact of this is and how we can build a narrative that can be more widely recognised by employers and society in general that people who have long term symptoms from Covid are going to need more support.”
Though Jane is now back in nursing work after several periods off sick, the effects of the coronavirus continue to be felt in her daily life.
“I used to be really fit and healthy - a fell runner, climber, I’m a cyclist and it’s been really hard to not be able to do the things that I love,” she says.
“It’s not knowing how long that’s going to last for either, whether this is something I’ll get better from next week or whether it will take months or be more longer term. We just don’t know at the moment and that’s quite scary.”
To visit Jane’s website, go to covid19-recovery.org