My Journey with Long Covid

I am a Community Children’s Nurse from West Sussex; this is the story of my journey with Long Covid.

In February 2020, my family and I were on holiday together; our lovely winter sun holiday feels such a distant memory now. I want to remember how I was prior to Long Covid – I was fit and healthy – I ran two to three times a week.

I am a Nurse, wife, mother and wear many hats. Covid has changed so much for me and my family.

I had recently moved jobs as the pandemic hit, coming back into the NHS from working in the charity sector. My family and I caught Covid very early on, just before lockdown. I did not feel that I suffered too bad with symptoms, and my 8 year old son was more unwell than I was initially.

I went back to work after my 2-week isolation period and had a relapse a month later and needed another week off work. I was trying to home-school my children when I was off – juggling home and work life. I tried to keep wearing all the hats I needed to keep going.

Towards the end of 2020, I was starting to feel unwell again – increased headaches, menstrual issues, sore throats, brain fog and just generally feeling unwell. I felt maybe this was due to stress, winter pressures.

However, my sister also had Covid at the same time as I did, and she also noticed the same relapse symptoms. After her diagnosis with Long Covid, I contacted my GP and was diagnosed with Long Covid too, although this did take some time and convincing. I was referred to the Long Covid clinic but was told it could take months to get support. Whilst waiting, I started to investigate alternative therapy and supplements. I changed my diet, stopped exercise and alcohol.

My children spoke about how Covid-19 had affected us, and how it had affected our family:

My little boy painted a rock for school which said, ‘Hope 2021’. He thought 2021 would be better than 2020. My little girl wrote on her blackboard, ‘I don’t know what is going to happen, coronavirus is naughty, I just want everyone to be happy.’

They knew mummy was poorly, they were absolutely brilliant and have learnt a lot through our experience. However, they just wanted things to ‘go back to normal’. I had a good Christmas 2020 and my symptoms seemed to be improving but by the middle of January I was struggling again. My walking was becoming slower and we noticed we were having to do less as a family at weekends as I was too tired from the week at work.

In March 2021 I was admitted to hospital with an acute gastric bleed and a myriad of other symptoms. I was in hospital for 5 days and being a nurse I knew I was really poorly. We later began to realise that on top of my Long Covid I had suffered vaccine reactions; my symptoms had deteriorated after my first dose in January but after my second vaccine I was in hospital a few days after.

I was then off sick and I started the long road to recovery. I was off work until September 2021. I have invested a huge amount of time and money into my own recovery, as the effective treatments and support are not yet well known or understood, and not readily available. This has had an impact on my family finances but we had to do it. I started acupuncture in May 2021 which I needed weekly to try and increase my energy levels. I still have treatments now every 2-3 weeks to help me with energy now I am back at work and doing more.  I acknowledge that I have had time off work supported by the NHS on full pay which helped enormously

I thought I could ‘push through’ Covid, and I remember saying to my manager I’ll be back soon. My head was saying something very different to my body. I kept in contact with my work colleagues and manager.

I came into work around June, to complete revalidation – however I was trying so hard to feel well. People commented on how well I looked but I was experiencing so many symptoms that were hidden and I felt rubbish, but this was not visible to everyone. On this occasion I remember my manager requesting I give her a date for when I would return to work. But I just couldn’t – she didn’t see what I felt.

My manager kept in contact with me and we had regular meetings where HR were present. I noticed that I felt I needed support just for me, so I contacted the RCN and felt supported – being the patient made me feel vulnerable and I was aware that I was fatigued. My union rep was incredibly helpful and supportive. She was my advocate. She supported my phased return and OH also really helped the process.

I would like others not to see the RCN rep as a negative or a threat. I needed an advocate and being in meetings with my manager and HR was exhausting both emotionally and physically.

I started back at work in September 2021, initially on 2 hours a day for 3 days a week. I slowly built up my hours over a period of time – a flexible working approach has massively helped me. Now in January 2022 I am on 5 hours per day, 4 days a week. I only ever work 2 days in a row so that I have time off to recover. I go to work but I still worry that colleagues think I am better when I am not. This is a long road which is not over yet.

One other thing that has really helped me, I have been supported with parking, so I can park closer to the entrance of buildings. This has really helped conserve my energy as I can go out several times during my shift for community visits, carrying equipment.

My children have survived too, my son needed emotional support regarding my illness, which we got for him. It has affected my family and children massively but we talk about it openly and are getting there.

I have hope that things are getting better but the therapy and change of lifestyle continues. I feel like I have survived 2021, 2022 I really want to start living.

Here is a quote from a Long Covid support group, that really helps me to put into words how I feel…

“She was tired.

No one could see the level of tired.
They saw the outside.
The one giving, smiling, showing up.
And yet inside, she felt the fatigue.
The tired of trying to keep up. 
The tired of agendas.
The tired of worries.
But she kept on.

She kept on giving and loving.
She kept on hoping.
She kept on showing up.
She knew her giving mattered.
She pushed forward. 
Out of love.

Even in the tired.”

Original words by Rachel Marie Martin, findingjoy.net