How Long Covid changed our lives forever

More than 75,000 people in Scotland are living with Long Covid, their lives impacted by the debilitating long-term effects of Covid-19.

We spoke to three women who have been affected by this complex and life-changing condition.

For me the fatigue was relentless

Dr Amy Small is a locum GP in East Lothian. She is living with Long Covid after contracting Covid-19 in April 2020 and has been a fierce advocate for greater care for those with the condition.

She had to leave her GP practice because she was unable to work full-time and became involved in a campaign to improve care and knowledge about Long Covid.

Dr Small, 37, has joined Chest Heart & Stroke Scotland as our first clinical advisor and will be bringing her knowledge and experience to our Hospital to Home service and further development of our work and support for those living with our conditions.

She talks to us about what Long Covid means personally for her and her family and what an integrated care pathway between the NHS, GPs and Chest Heart & Stroke Scotland can do for patients.

“I got sick in April 2020. A couple of days later, my husband Matthieu started to feel unwell and then my two boys became ill one after the other. And I just didn’t get better. Matthieu had different symptoms from me, but he too just didn’t get better. “For me, the fatigue was relentless. It was tiring simply to do anything. I tried to go back to
work part-time. I did half a day of paperwork on the Monday and a normal surgery on the Tuesday morning. That put me in bed for 10 days.

Dr Amy Small believes an integrated care pathway between the NHS, GPs and Chest Heart & Stroke Scotland is vital for people with Long Covid.

“It was like the battery being empty on your phone. You look and you’ve got 1 percent and it just can’t do anything. I could hardly lift my arm to drink at times.

“I got involved with Chest Heart & Stroke Scotland because I’d written a letter to the then-Health Secretary Jeane Freeman with other medical colleagues who had Long Covid. We wanted to show that this is a real issue and patients have to be listened to.

“I recognise I’m in a unique position – I’m both patient and doctor. So that made mine a strong voice to add to the work Chest Heart & Scotland were already doing on Long Covid.

“We can make life better for people. But we need to get the information about Long Covid out to the GPs, and we need to make the referral system clearer and simpler. That means bringing the NHS and GPs together with Chest
Heart & Stroke Scotland.

“Our Advice Line is already very good. The nurses there have time to talk and listen to a caller, more time than a GP has. They have expertise in the field and can talk patients through their symptoms and help patients to get the most out of of a GP consultation.

“This is where Chest Heart & Stroke Scotland is very strong. They know how to listen to patients, to empathise with them and reassure them they are not alone.

“The support groups are also excellent ways to give that help, too. We are looking at things like a befriending service for those with Long Covid who feel very isolated, perhaps because they can no longer work or they don’t have a support network around them.

“There’s so much that needs to be done, but we are making great strides already and I am very happy to be part of the team that’s making a difference to people’s lives.”

One month after our tests we were both still floored by it

Mairead Johnson, 58, lives in Greenock with her husband Henry, 62. The couple contracted Covid-19 in late December 2020 and both are now suffering the effects of Long Covid.

“A month after our positive tests, we were both still floored by it. I’ve had flu before, but this wasn’t flu. We just lay for hours on end, me on the couch and him on the bed. The only thing that got us up was having to let our dog Betty out on to the balcony.

“Henry began to notice that after he’d been awake for a while, his head would feel as if it was swollen, his throat became constricted, and he got brain fog. In fact, he said he was hallucinating sometimes. He’s a little better now,
but he still gets very breathless, and his heart has started racing. He has pain in his hips, too.

“I have joint pain in my foot, as if one toe is permanently broken. My hands and feet regularly get very red and the veins get prominent. I also have breathlessness and my heart is constantly racing.

“One day I was on the couch for hours and my heart was racing. According to my Fitbit, I’d done five hours and 23 minutes of cardio exercise – but I never moved at all!

“Weird things are happening to our bodies – Henry and I don’t have a yawn reflex any longer – but we don’t feel we can constantly go to the GP and report on every new odd symptom. Those of us with Long Covid need a single place to go to for information and for help.”

I’ve had to adjust to big changes physically and mentally

Tracey Binnie, 40, of Tranent, East Lothian, is learning to live with the effects of Long Covid. Just over a year ago, Tracey, who is married with a 14 year old son, was a busy working mum with an active family life enjoying long walks with her two dogs. Long Covid has turned Tracey’s life upside down and left her with a series of health conditions that mean she needs a half-hour rest after even the lightest of activity.

Her working life has also changed beyond all recognition and she has had to give up her full time job as a contractor as well as running her own pet sitting business.

Commenting on the impact on her life, Tracey said: “Since falling ill with Covid-19 in March 2020, my life has completely changed. I used to be very active and outdoorsy person. Now I am pretty much housebound, and I rely on my family to do all the things I used to be able to do.

“I’ve had to adjust to big changes physically and mentally. But I’m fortunate that my GP has been very supportive. But lots of 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. I appreciate 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.”

For Tracey, Long Covid means constant fatigue, what she describes as brain fog and muscle ache. She also has a lung condition for which she has to use an inhaler and is 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.

Tracey has now returned to work and is focused on helping others like her to get the help they need to recover as much as possible from Long Covid. She has now joined Chest Heart & Stroke Scotland to work part-time as Community Involvement Co-ordinator for Long Covid. She says her role with the charity is allowing her to put the advocacy skills she has developed since her own illness into helping other people who have only recently contracted Long Covid and may not know who or where to turn.

For more information on our Long Covid services and how to access them visit chss.org.uk/longcovid