I’m An NHS Nurse Living With Long Covid

"So has Long Covid changed me….YES!"

Anna, a Community Children's Nurse talks candidly about her journey with Long Covid and her experience of the NHS; as a Nurse and Patient.

I’m An NHS Nurse Living With Long Covid  

An estimated 2 million people in the UK have long covid with varying symptoms and severity and I am one of them.

21% of those people have had long covid for over 2 years and again I am one of them.

Unfortunately, I had covid again in March this year and I also reacted to the vaccine, both causing a deterioration in my symptoms.  

I’m a Nurse, I’m a Mum, I’m a Wife. I’m a sister to Emily with Long Covid and I’m an Auntie to Reuben with Long Covid.  

My family and I have lived and breathed Long Covid for 2 years.  

I was a runner, I was a fit and healthy person and I had aspirations.   Now….I’m a patient.

My Experience As A Patient

I have fatigue, muscle aches, heart palpitations, breathlessness, ear, eye and gut issues to name just a few.

Now I’m an advocate for myself like I have been for patients over the years.

I’ve been off sick more days than I can or want to count.

I’m an employee under sickness management policies.

I’m a mum who can no longer walk her kids to school or go out at weekends like we used to.

I have to pace, rest and carefully consider what I do in my day and week to not cause post exertional malaise.  

But I am not one to let this beat me.

Now I’m an advocate for myself like I have been for patients over the years.

For two years I have sought out treatments and therapies to get me better.

I am a firm believer that the body can and will repair with the right treatment.

I have changed my diet, been on all kinds of supplements, had acupuncture, been abroad for treatment and now I’m under private care on a new protocol.

This has come at a huge financial and emotional cost to both myself and my family.

However there is hope.

Since following the new protocol my nephew is back playing football and at college and my sister is back to full time work.

I hope that I am not too far behind.

Sadly, I know that this option is not open to all due to the cost.  

Since being ill I have felt caught between the two worlds of Nurse and Patient.

Long Covid is a new condition and those of us with it have really had to teach the medical world about it.

Many patients have been dismissed by medical practitioners and told they have anxiety or other mental health problems.

For most of us all the tests come back ‘normal’.

There are huge variations in access to assessment and treatment across the UK.

I was referred to my local Long Covid clinic in early 2021 after I was diagnosed by my GP.

I was not seen until May 2021 and this was only after my referral was chased following a hospital admission.

Even then I was not seen, it was all done by phone.

Since being ill, not one medical practitioner has assessed me in person and discussed my Long Covid symptoms with me.

Although the Long Covid clinic could not help me with any of my symptoms, they have provided psychological support as well as help and advice in getting me back to work.

I read stories of others in the country who attended a Long Covid clinic and were seen and assessed by a multidisciplinary team with ongoing assessments and referrals.

The variation in set up is stark.

This is why many have resorted to other alternative treatments, often expensive and not always in the UK.  

My Experience As A Nurse

Returning to work has proved difficult.

I am a Community Children’s Nurse visiting families and patients in their own homes.

I was able to return to work for 6 months last year doing less hours over more days.

But then I caught Covid again and went abroad for treatment.

Will I continue being a Nurse….I really don’t know?

Flexibility Is Key For Staff Retention

Nurses with Long Covid require flexibility when it comes to returning to work.

In a time when there are over 46,000 Nurse vacancies in the UK we need managers to think outside of the box to get us back.

Lack of care for Long Covid, lack of recognition for those reacting to vaccines…it all takes its toll and I’m scared that I am losing my love, respect and compassion for the organisation I work for.

Our condition fluctuates and therefore, the workplace needs to reflect this with options like working from home, doing reduced hours, having longer breaks in the day, reviewing how the team works and perhaps inventing a different role within the team.  

Not being heard or seen by the NHS has been hard for someone who works for them.

Lack of care for Long Covid, lack of recognition for those reacting to vaccines…it all takes its toll and I’m scared that I am losing my love, respect and compassion for the organisation I work for.  

It is clear that society wants to get back to some kind of ‘normal’ after the last few disrupted years and I too would love this.

Long Term Effects

Long Covid is a new condition and those of us with it have really had to teach the medical world about it.

However, for many like me, the saga of Covid-19 continues as we learn to live with Long Covid and adapt our lives accordingly.

I ask that society and the medical world do not forget us and continue striving for treatment and support so that we can integrate back into a post-covid world.

So has Long Covid changed me….YES!

Will it change me for the better….I hope so!

Will I continue being a nurse….I really don’t know?

But I promise I will find some aspirations again and dream big…and one day I WILL run again.