Long Covid stories – All About Long Covid

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.

A personal perspective of Long Covid: As a patient and a professional

I caught Covid-19 in March 2020. I never got better. Nearly three years down the line I am better than I was but still nowhere near back to normal. I resigned from my academic job last year having taken my occupational pension early when I ran out of sick pay in 2021.

My ongoing symptoms include: fatigue, headaches, and cognitive dysfunction (commonly referred to as brain fog) – click here for more information about cognitive dysfunction and Long Covid. Other symptoms come and go – new ones appear. This is hardly surprising when more than 200 Long Covid symptoms have been identified. During the time I have had Long Covid I have received very little support from healthcare professionals – most of the care I have been offered is because I asked for it to be put in place by my GP. Even when I persuade my GP to do a referral it often bounces – e.g., both my neurology and endocrinology referrals last year were “sent back to my GP”.

I now have no job ….

This week I’m publishing a second blog – a vlog from Brenda Eadie (@BrendaEadie). I don’t normally publish more than one blog a week but Brenda’s story needs to be heard. (Watching this vlog and reading Anna’s blog about her guilt at not being able to return to work provides insight into the impact of Long Covid on our so called NHS Heroes.)

In the vlog Brenda describes how she felt when she was sacked from her NHS role this week after 28 years of service with no financial safety net because she has Long Covid having caught covid at work. #NHSHeroToZero

Some of you may have seen a shorter version on social media yesterday via @LCNMUK but Brenda’s message is so strong I am publishing this longer version here too (with permission).

Dear Work Colleagues or Long Covid, Nurses and Guilt

This week’s blog is written by Anna Carey

I’ve been living with Long Covid for 2 years now and I also reacted to the covid vaccine in early 2021. As a result I have had more than a year off work in separate periods. I qualified as a nurse 22 years ago and having only had time off for maternity leave and the occasional sick day, this is hard to take and the feeling of guilt is there.

However, the notion of guilt was challenged recently in the long covid support group I attended as it was a feeling that most people in the group had experienced or were experiencing. The psychologist said that guilt is usually as a result of having done something wrong and none of us have done anything wrong by getting Long Covid. We are not being naughty by not going to work. We shouldn’t feel guilty for resting and trying to get better. Do nurses feel guilt as we tend to be duty bound and want to serve others so when we can’t it’s hard? Or is the emotion getting confused with other emotions such as sadness, regret, loss and grief?

Living with Long Covid: Two poems

This week’s blog is two poems by Becky Walls (@beckywa79046435) describing what it is can feel like living with Long Covid.

Where are you?

It’s the day you wake up and realise the old you has gone

A life worth living seems so far away it’s unreachable

You look the same yet your completely changed, people you once loved now don’t know you or understand why you look exactly the same on the outside but inside your screaming in desperation, longing for a life that was once yours.

Overnight the fight has begun to regain the independence that has cruelly been taken away.

The pain is invisible yet seeps to the core of your being. The yearning for the end but there seems none in sight.

Long Covid ramblings: Action is needed NOW

This week I want to point you in the direction of some of the @LCNMUK blogs published over the past couple of months where nurses with Long Covid told their stories. I also want to highlight that Covid Isn’t Over and that many NHS workers with Long Covid are facing financial destitution now that covid sick pay has been removed across the UK. (More information about the removal of covid sick pay can be found here.)

Anna tells her story here.

Dee’s story can be read here.

Jenni’s story can be found here.

Treasa’s story is here.

Brenda’s story can be seen in this video.

Please share these stories far and wide. If you are living with Long Covid please feel free to send me your story.

Brenda’s Long Covid story

In our first Vlog Brenda Eadie (@BrendaEadie) provides an insight into what having Long Covid is like.

The Adventure That is on No-one’s Bucket List: My Life with Long Covid

I woke up at 02:02:02 on 02/02/2020 and thought it was a sign that I would have my best year ever! That was the most spectacularly incorrect premonition ever recorded ….

I have approximately 500 – 800 words to try convey the astronomical ramifications Long Covid has had on my life, seems paltry in comparison, but I’ll give it a go.

My life previously was incredible, I lived in 12 countries, travelled to more than 40, ride motorbikes, have a scuba licence, ride horses, fail at surfing every-single-time, can kayak, have sky dived, white water rafted, raised £50k + for charities, rode London to Paris, renovated my house, moved house several times, cleaned the house, moved jobs, got qualifications, went on holiday, dated, met up with friends, walked my dog, went food shopping, cooked meals, washed my teeth, turned over in bed, got out of bed ….. breathed, all without a second thought.

Jenni’s Story

Hi, I’m Jenni.

I’m a wife, a mum, a sister, a daughter, a friend & a nurse but I’m more than that.

I am a fighter, I am a warrior, I am a survivor. I’m a long hauler.

I have post covid 19 syndrome or long covid & depression & behind my smile, I fight a daily battle against my body to just function.

Before I got covid in 2020 I worked full time as a band 6 specialist nurse & ran a household, doing the cooking, cleaning & general management of the house. I used to spend time with friends & family & did 5k charity runs & had a positive outlook on life. Since getting covid I struggle to cook a meal in one go, I can’t stand for any length of time & I struggle to walk even the shortest of distances unaided without being in pain or experiencing breathlessness.

Dee’s story

“Please Believe Me” by Dr Dee Burrows

Dee prepared the information below for someone to present on her behalf at RCN Congress in June 2022.

I am a non-voting member who has been a Nurse in practice, education and research for 45 years. I am a published author, speaker, educator and innovator – at least I was. Now, I live with Long Covid, I am a patient, a waiting list number and invisible. I have been off sick since I got Covid last July, have lost 95% of my social life and only manage around 50% of my home responsibilities. I live on my own.