Tracey’s story

Tracey’s life was turned upside down when she developed Long Covid. She has been left with a series of health conditions which affect her daily life.

To help others with the condition, Tracey joined Chest Heart & Stroke Scotland as a Community Involvement Co-ordinator and facilitates a peer support group for people living with Long Covid.

Changed beyond all recognition

Long Covid has turned my life upside down. I used to be an active mum who thrived on a busy working life and enjoyed long walks with my two dogs. Now I need a half-hour rest after even the lightest of activity.

My working life has also changed beyond all recognition. I ran a successful pet-sitting business and worked as a contactor too, but falling ill with Covid-19 in March 2020 put paid to that.

My life has completely changed. I used to be a very active and outdoorsy person. Now I am pretty much housebound, and I reply on my family to do all the things I used to be able to do.

For me, Long Covid means constant fatigue, brain fog and muscle ache. I also have a lung condition for which I have to use an inhaler. I’m now on beta blockers after being diagnosed with PoTS – postural tachycardia syndrome, which is an abnormal increase in her heart rate after sitting up or standing.

Adjusting to changes

I’ve had to adjust to big changes physically and mentally. But I’m fortunate that my GP has been very supportive. And the GP practice has done their very best to support me as well as they can with a novel condition created by a novel virus.

Many other people with Long Covid are not as fortunate. And that’s why it’s so important that more education is done with the medical profession. When people call their GPs, they are pushed aside. And if they do have an understanding GP and are referred on to secondary care, they are still constantly pushed back.

I appreciate that the NHS is under pressure, but that’s not right. People need help and support because they are often very unwell, yet their symptoms aren’t taken seriously.

Fighting for help

There are a number of things that can be done to help us. The community wants Long Covid clinics set up because we still don’t feel we are getting enough help and support.

England has trialled these with mixed results, but there’s a fantastic opportunity for Scotland to look at what has worked and what has not to get clinics off the ground here. Essentially these would be a one-stop shop with a multidisciplinary team that means patients would not be to-ing and fro-ing to hospital because fatigue is such an issue.

We have to ensure there’s no postcode lottery either. We need these clinics. They have to be patient-centred and the NHS has to consult more with us to drive that forward.

I’m now working part-time as the Community Involvement Co-ordinator with Chest Heart & Stroke Scotland, putting my experience as both a Long Covid sufferer and a participant in online forums to work in facilitating a new peer support group.

Long Covid is real. It’s formally recognised as a medical condition, yet countless people are being denied benefits because the DWP doesn’t accept the condition.

On the plus side, we are seeing greater awareness and Chest Heart & Stroke Scotland is doing a lot of the hard work there. Many people are not getting any help and support from family and friends because many of the symptoms of Long Covid are not visible. More research will improve diagnosis and treatment and help raise more awareness of this chronic illness.