My Long Covid Journey and Reflection

 I work as an Independent Nurse Consultant, and work ad hoc as an agency health visitor and midwife within London communities.

It was during my role as an agency health visitor, at the beginning of the pandemic in March 2020, when I first contracted Covid-19. At the time, little was known about Covid and the term ‘Long Covid’ did not exist.

I started feeling unwell with only one of the three symptoms the public were being asked to look out for. I had other symptoms that were not listed including loss of smell and taste, fatigue and a constant crushing headache. Despite several calls to 111, I was advised that the other symptoms I had were not Covid-related. Within a few days of becoming unwell, I infected my 15-year-old son. During this time, I lost my uncle to Covid-19, which was very distressing. Following a brief stay in hospital, he contracted the virus and was discharged home and died five days after discharge from hospital.

Within a week of being infected, the NHS Trust I was working for terminated my agency contract. My symptoms worsened and one of my greatest fears every night was dying in my sleep and my son finding me dead in bed. Thankfully, my son and I both pulled through the initial infection without being admitted to hospital, although we both had several relapses within the six weeks of being ill. With the virtual support of family and several colleagues, who also were infected, I felt much better after six weeks.

When I initially contracted Covid-19, testing was not available. I had to wait until June 2020 to confirm that I had Covid-19 when I tested positive with an antibody test. At the same time, I enrolled on the SIREN study (SARS-COV2 immunity and reinfection evaluation [Covid-19] and commenced regular antibody testing.

Diagnosing Long Covid

I continued to feel very fatigued, and the headaches persisted. I was also getting constant body pains and some days I was unable to get out of bed. I initially put it down to overexertion as I was carrying out regular interviews as part of the Nurses & Midwives Talk series.  I consulted regularly with my General Practitioner who ordered several blood tests and other investigations to establish the cause of persistent fatigue. However, despite the thoughts it may be menopause related or other underlying conditions that I had, all the tests came back fine.

I got very anxious as to the cause of the fatigue and kept adjusting my working hours and where I could, paced myself and incorporated multiple breaks into my working day. I also tried to maintain regular exercise, but this appeared to worsen my fatigue and some days, I was completed depleted.

Despite numerous visits to my GP, my symptoms did not subside. In December 2020, my son contracted Covid again and I was terrified for both of us. I consulted my GP again, and this was the first time, the term Long Covid was suggested.  However, the Long Covid clinics had not been fully set up in my area. It was not until April 2021, after numerous consultations, having to tell my story several times and lots of diagnostic tests, that I received a diagnosis of Long Covid.

The care and support I have received from the Long Covid clinic locally has been pivotal to my progress. I get seen regularly by a multi-disciplinary specialist team comprising two consultant physicians, a specialist nurse, physiotherapist, occupational therapist and psychologist. I was also referred to other specialists – rheumatology and neurology for specialist input as the Covid triggered an autoimmune response. The team have been incredibly helpful in managing my symptoms with medication. I also have had to invest in alternative therapies including acupuncture, osteopathy and deep tissue massage.

Sadly, in March 2022, I tested positive for Covid again, and my symptoms worsened. I now have to live with intense muscle pain, fatigue, throbbing headaches, brain fog and concentration problems. I remain under the care of neurology and rheumatology care for symptom management and continue on prescribed high-dose antihistamines.

My biggest anxiety continues to be not knowing if I will ever return to my pre-Covid health and when that will happen. I am constantly plagued by questions such as: Am I going to stay well? Am I going to become unwell again? My son has also tested positive for Covid on five different occasions, which terrifies me. Being surrounded by the news of colleagues, family members and the news of Covid was a trigger of this anxiety. I remain hopeful that more research will be undertaken to find out more about the disease and its management. But for now, I must learn to be content with the fact that long Covid is a ‘new disease’, even though on some days, I want much more than that.

The Impact on the Individual Nurse

This is something I feel strongly about: the nursing workforce calling for more teaching and knowledge on Long Covid. I am keen to support the work moving forward to help roll out and embed this across healthcare services. Despite being so unwell myself, I remain positive and part of the team of nurses who will continue to drive change within services.

I occasionally get angry that I was not given adequate Personal Protective Equipment (PPE) at the start of the pandemic. I contracted the virus in the line of duty (as did so many nurses, especially community nurses) and subsequently my son contracted this from me. I was worried about him and his health, worried for my colleagues.

I also struggle with survivor guilt. Having a background in infectious diseases means that I know many nursing and midwifery colleagues who contracted Covid and subsequently died. I lost my uncle and a few friends to the disease. Many nurses expended themselves in service and paid the ultimate cost – their lives! Many others like me, continue to suffer with Long Covid. Many have been unable to return to work, and are having financial difficulties, especially agency nurses like me, whose contract was terminated within one week of my becoming unwell. Many are having to retire early on the grounds of ill-health, and for many of whom nursing is a great part of their identity.

I would like to see more support for the NHS/Healthcare workforce who continued to support their patients with Covid-19 but have been left behind when it comes to their own need for support.

Lessons for the Future

One question I am often considering is why has society taken a view that its EITHER/OR? To elaborate, either we are in a pandemic and will wear masks and other safety protection measures, or not in a pandemic and no safety measures are required. There is a safer and more considerate option – the AND approach! We can be in the midst of a pandemic and continue to protect and prevent further variants and preventable illness by continuing with the safeguards as we did previously. It saddens me to see little protective, proactive measures in place now, or if in place not being used to protect further virus spreading. Free testing has also stopped, posing difficulty in effective monitoring of the spread.

Whilst I am learning to accept my new way of life, as difficult as the journey is, I hear how society wants normality to return, and I empathise with this, but fear that we cannot simply return to ‘how things were’, we all need to learn to live with Covid and Long Covid, not ignore its existence and persistence. I have hope that we may reach this conclusion together as a society. The impact that Covid-19 and Long Covid has had on societies is huge and can’t be ignored. The underlying issues of health poverty and health racism was magnified during the pandemic and again, many lessons are there to be learnt. I hope we do not lose these lessons and that the NHS, and all health and social care services can learn from them.

Change for the NHS, for health and social care services needs to happen on many levels and as a Nurse Consultant I am keen to be part of the changes needed: I remain positive and grateful to the effective and efficient supportive services I have received. But I am also keen to change the narrative. I strongly believe that preventative services could support recovery plans and need greater investment.

I also believe health and care services need to fully acknowledge those nurses in the workforce who are unwell because of Long Covid. Awareness of the condition needs to be highlighted and education throughout all levels of Nursing, Medicine and healthcare is key. We must ensure that we do not marginalise those who expended so much of themselves in service to others – colleagues who continue to be challenged by Long Covid. One of my missions is to ensure that their expertise – clinical and lived experience – continues to be utilised.

Ruth Oshikanlu MBE, Queen’s Nurse