How living with Long Covid gave me a new perspective on life

In this week’s blog, Holly Johnson, a nurse with Long Covid, discusses how living with Long Covid gave me a new perspective on life

This week’s blog is written by Holly Johnson a nurse with Long Covid.

When I reflect on when I became ill with covid-19 I realise what a big eye-opener it was for me; to understanding what was going on politically in this country, how people are treated in the workplace as well as giving me a new perspective on my own personal circumstances.

I find it difficult because I know thousands are worse-off and/or are in the same boat. I also feel fortunate because I survived and so many didn’t. Whilst it’s important to remember to feel gratitude for our survival, it’s also important to talk about:

  • Our experience and raise awareness of the prevalence of long covid in adults and children
  • The impact it has on our lives
  • The impact it is having to this country’s workforce
  • Where the gaps are in terms of research
  • Being recognised as a disability
  • Being recognised as an industrial disease.

There are also gaps in support and treatment of long covid and many of us are struggling financially whilst being unable to work.

I contracted covid-19 in April 2020, working as a nursing sister on an oncology ward. At that time, we had little to no PPE protection. Patients were admitted in droves with symptoms we now know are covid and in the days before becoming ill myself I looked after severely unwell patients with acute symptoms, and most went on to die. The viral load on frontline staff must have been particularly high and it wasn’t long before lots of my colleagues and myself developed symptoms of covid-19.

I started with a fever and achy, but the symptoms got worse at day 5. By then I was severely out of breath, had my first visit to A&E and was sent home. By day 10 things got so much worse and I was struggling to breath, I was delirious, coughing, extremely weak with a raging fever. I was admitted to hospital on the infectious diseases ward. Fortunately, I started to turn a corner on day 12, didn’t need ventilating or oxygen and was sent home.

It took several months however to recover. On my daughter’s 9th birthday, we were in lockdown, and it was the first time I made it out of bed, I felt so guilty. When I tried to go back to work, I crashed after a couple of months, which left me almost bedbound for months. On my worst days I could barely get to the toilet, and I was totally reliant on my partner. This pattern carried on, I’d return to work, reduce my hours, have a phased return and just crash again 3-6 months later.

More recently I have been off for a whole year, the symptoms aren’t quite as bad physically as they were at first but still following a cycle of crashes and mini crashes that are hard to predict and prevent. I have since been diagnosed with fibromyalgia, brought on by long covid. My symptoms follow all the classic signs of long covid:

  • Pain
  • Crushing fatigue
  • Headaches
  • Dizziness
  • Unable to concentrate and multi-task
  • Sensitivity to light, sound and smells.

I struggle to find words and communicate when I’m really bad and struggle with forgetfulness.

I’ll be attempting to return to work in the next few weeks, losing my sister’s post and on reduced hours in a job that, fingers crossed, will be more suitable.

Although our awareness of long covid is increasing, from my experience society has had enough of hearing or talking about covid. It’s almost a collective desire to just move on as a coping mechanism, which I completely understand but it has also meant that I have often felt not believed or heavily judged for not just getting on with it.

I’ve been told I look well when inside, every part of my body hurts and I  feel like all the energy has been drained from every cell.

I’ve been told that it’s depression or gaslighted about my own experiences and have been told that I just need some ‘purpose’ or ‘positivity’.

It’s hard to explain to people that one day you are functioning and okay for part of the day, but that when they don’t see you, you are paying for that activity in some way and unable to be consistently functional.

My experience with long covid and being acutely unwell has changed my life. I ended a toxic, verbally/emotionally and physically abusive relationship which became highly apparent when I was at my most vulnerable. When, for the first time in my life I was the one that needed help. I became a campaigner for the NHS with our campaign NHS Workers Say NO. We’ve been campaigning for fair pay for NHS staff, against privatisation and for patient and staff safety. I’ve become an active trade unionist and also gave evidence to parliament through my union on the need to change the government guidance on PPE. Being unwell has given me perspective on the injustices in society and the need to fight for a socialist future.

My symptoms have nowhere near gone, I still struggle to accept my limitations and still compare myself to what I was before catching covid but there is so much that I have learnt about myself. I’ll never forget feeling like I was going to die as I left my house in an ambulance and it’s made me realise what is important in life, and that is my family and friends. I’ll never take them for granted again. I feel so lucky that I have a chance to enjoy my life and the people, nature and animals around me with a new-found perspective.

Author: Alison Twycross PhD RN

Chair - Supporting Healthcare Heroes UK; Editor-in-Chief - Evidence Based Nursing; Former Deputy Dean and Professor of Children’s Nursing

Leave a Reply

%d bloggers like this: