Living With Long COVID
Artwork by Richard Kahwagi. Photos by Glen Carrie and Jessica Felicio on Unsplash
As I write this, I’ve calculated that it is 455 days, 65 weeks and 6 days or 15 months since I first showed signs of being infected with COVID-19. During my journey with what is now known as Long COVID, I have experienced a myriad of weird and non-wonderful symptoms. The random symptoms that range from debilitating to plain annoying. Last week, due to neuropathy, I thought I would lose the ability to walk.
Long COVID is defined by the National Institute for Clinical Excellence (NICE) as signs and symptoms that develop during or following an infection consistent with COVID-19, that continue for more than 12 weeks and are not explained by an alternative diagnosis.
As someone who had no pre-existing conditions, and a good level of fitness I thought I had got off lightly after I was infected. My husband, however, had a far worse time with his infection which included high fevers and a hacking cough, he was bed bound but recovered after 3 weeks. I thought I was better after 10 days, but afterwards kept feeling like I was coming down with it over and over again. In those early days, I reached out to the GPs, pharmacists and even the internet looking for answers. The GPs dismissed me, telling me I had anxiety due to lockdown, the pharmacists asked me to leave the chemist for fear of infecting others. I didn’t know if I remained infectious or not, all I wanted was answers.
Once I was able to convince the GP to let me do an antibody test, which came back positive, I felt vindicated. I found online communities like Body Politic and Long COVID Support that saved my life. It wasn’t in my head after all and it wasn’t just me feeling like this. Symptoms at this point were pins & needles and numbness in my hands and feet, unable to control body temperature, and now my new constant companion – fatigue.
I resigned from my job, thankfully my director refused it and put me on furlough. Luckily, I’d worked with my director in various roles over the last few years so she knew me well enough to know that I was acting out of character. I was known as a ‘super woman’; juggling three kids and their various hobbies, working full time, making packed lunches, batch cooking dinners at the weekend, going to the gym before commuting, helping at the Scouts club and volunteering for my local food bank. I was never ill, I never stopped, and I was constantly multi-tasking. Now I had to learn what convalescence really meant.
For two months I didn’t work, I slept 3 times a day and literally did as little as possible. I began to feel better and was able to return to exercise, jogging a couple of times a week and doing body pump to recondition myself. Apart from the stye-like bumps on my eyelids that had appeared when I was first infected and stayed, I felt totally normal and recovered. I stopped using the social media support groups and researching Long COVID theories. I thought it was over, I thought I was cured!
Two months later, I began pacing my return to work, just doing 3 days a week. I’d even gone into the office a few times, life was good. Then I started to have heart palpitations and chest pains. I thought I was having a heart attack and eventually ended up being taken to A&E by paramedics. On that day, I realised this Long COVID was a very serious condition and the doctors didn’t have the answers.
I was discharged and told that all tests were clear, there was no problem and it was just the ‘unknowns of COVID’, I was told I would be referred to Croydon’s Long COVID Clinic. I returned home and was bed bound for weeks. I could barely get up and down the stairs, couldn’t cook or drive, I couldn’t even cream my feet. I started to get worse symptoms like vertigo, insomnia, vibrations in my body at night-time, adrenaline surges, GI issues, random diarrhoea, swollen glands every other day, the list went on and on. Realising I was probably going to have to deal with being chronically ill, I applied for a lower paid job in a more stable industry and resigned from the well-paid job I hadn’t been able to fully enjoy.
The long-awaited appointment at the ‘Long COVID Clinic’ arrived in November 2020 and was such a disappointment that I knew I had to join the fight to advocate for better care. My Long COVID clinic appointment in the overflow A&E department was nothing more than a check of my stats, a blood test and ECG. Once they established I wasn’t in the middle of a medical emergency, the nurse said I was fine and could go home. I burst into tears telling her I wish I had died as it would have been easier than managing Long COVID. That was a real low point for me.
It spurred the activist in me, and I became more active in the Long COVID Support group and volunteered to be an advocate to raise awareness of this issue and implore the Government to notice this large group of people that do not recover from Covid in a linear way, the way that they had been describing. I co-created a survey for people with Long COVID to record their experiences of accessing Long COVID Clinics in their areas and describe the type of care they received. I co-authored a piece in The Lancet responding to the newly published NICE guidelines on ‘Post COVID Syndrome’. I also joined the NHS (England) taskforce which leads on designing the services to support those with Long COVID. There was a need for more diversity on these panels as they were mostly made up of white, middle aged, middle class women and I knew there must have been people like me who had been affected by Long COVID.
Now 15 months post infections, I’m waiting on follow up appointments for cardiology and neurology consultant, a specialist scan and the waiting list for the University College London Hospital’s Long COVID Clinic, whose experts understand Long COVID and are leading the search for effective long-term treatments. I’ve learnt how to better manage the fatigue but not the random symptoms that pop up whenever I try to live a normal life. I recognise that it’s going to take me a long time to get over this virus.
So this is why I’m speaking out, and I encourage others to be vocal about their experiences too. The virus can have a devastating impact on our lives, not just to those that are ‘vulnerable’, elderly and ‘unhealthy’; our public healthcare providers and professionals need to recognise that. We need to speak up for people that may not be able to send long detailed complaint letters referencing how the Health Authority has not fulfilled their obligations or those who may speak English as a second language and not feel confident to challenge the doctor that dismisses complaints as ‘anxiety or depression’. I hope people understand that, whilst I hope in my heart - not one more person goes on to contract Long COVID, this could happen to them too. We must ensure that we share about our experiences and advocate for others that are not able to, so that marginalised groups and those who are disproportionately impacted by health issues are not left behind.
For more information on Long COVID visit: Long-term effects of coronavirus (long COVID)
