New referrals rising
A Scottish charity is experiencing a rising demand for people needing support to cope with living with Long Covid.
Thistle, which supports people with long-term health conditions, says that long covid has accounted for 15% of their referrals since December 2020.
As Covid cases are rising in Scotland and restrictions are being further relaxed, latest ONS figures show that over 1 million people in the UK have reported experiencing long covid symptoms, including fatigue, muscle pain, and difficulty concentrating. A study has also been launched into the long-term effects of Long Covid on people of Scotland.
Ross Grieve, Thistle’s health and wellbeing manager, said: “We have had an increasing number of referrals of people struggling with persistent, debilitating fatigue after having COVID in recent months.
“Even people who experienced mild symptoms of COVID, and those who expected to bounce back quickly due to their age and fitness, are finding themselves stuck with ongoing symptoms of fatigue, weakness, disturbed sleep and pain. Some are left behind in their own personal lockdown just as everyone else is benefitting from being out and about more.”
Thistle, which has supported people with post-viral fatigue and ME/Chronic Fatigue Syndrome (CFS) for over 15 years, offers bespoke support to help people develop strategies to cope with their situation and find their own path to recovery, alongside the opportunity to join their health and wellbeing and mindfulness programmes.
Grieve added: “No one has to struggle with this alone. With early support and advice and by making some short-term adjustments, most people are able to recover well and avoid this health crisis becoming a life crisis.
“For people affected by Long Covid, it’s really important not to attempt to ‘power through’ as this can make symptoms worse and increase feelings of frustration and loss of control. Sticking to a manageable level of activity, resting both your mind and body, and pacing your activity is key to allowing your body to recover.
“This strategy can be really challenging, particularly if we see ourselves as someone who ‘likes to get things done’. This is where coaching can be really helpful – getting support to make the decisions that are right for you and help to manage the frustration that often accompanies a slow approach to recovery.”
Those already supported by Thistle to cope with living with Long Covid include Callum O’Dwyer, Calum Kennedy, and Elspeth McKenzie.
Anyone in Scotland who is experiencing symptoms of longer-term post-viral fatigue, whether Long Covid or after another viral infection, can self-refer to Thistle through their website or ask their GP or other healthcare professional to refer them.
Juggling work as an engineer with a passion for poetry, politics and socialising with family and friends, Callum O'Dwyer was used to a busy life but that all changed when the 29-year-old from Aberdeen fell ill on the first day of the UK lockdown, 23 March 2020.
“I woke up feeling terrible. I was exhausted, and within hours I had a fever and a persistent cough. Then came the shortness of breath, I was gasping for air - it was terrifying. My family and friends dropped off essentials, and after ten days, to my relief, I started to feel much better. I was planning to go back to work, and suddenly the breathlessness returned."
A month later, Callum was still experiencing a wide range of symptoms including breathlessness, fatigue, brain fog, tachycardia, palpitations, tremors, acid reflux and dreadful stomach pains. "I felt as though I was wasting away, I had no energy to cook and my whole body hurt as if I’d been hit by a bus. Finally, after five weeks of living alone, I moved back in with my parents. On the first day I could hardly climb the stairs, but not having to worry about cooking and washing-up was a real help. My GPs were sympathetic, but no one seemed to know what to do or how long my symptoms would last.”
Callum started sharing his experiences online and Thistle reached out to him to offer support after hearing his story.
“It meant a great deal that someone wanted to help me. It looked like the right support too, as their practitioners have many years of experience supporting people with challenging long term health conditions.
"Like a lot of people with Long Covid, I felt alone and terrified of being left high and dry without any treatment. Being able to speak to Ross who had seen multiple recoveries across a whole spectrum of conditions – including high performance athletes - gave me a sense of perspective. The great thing about Thistle approach is that it is not prescriptive –it’s not about being able to touching your toes, for example.
A year on, Callum is still getting support from Thistle and is currently doing their 10 week Lifestyle Management Course, gaining further tools to manage his recovery.
“I am able to do more in my life but also trying to stay within my limits. I’ve just been up to the Highlands with my family and was able to do some walking. I am still living with my parents but hope to be able to live independently within the next year. Having faith in my recovery and being able to talk about the future– not in a scary way but in a productive way – has made me feel much less alone."
Calum Kennedy, 22, has spent over a year managing the symptoms of long covid and the resulting feelings of isolation, anxiety and depression, latterly with the support of Thistle.
In his final year at St Andrews University, Calum became ill just before the first UK lockdown in March 2020.
A fit and active cyclist and athlete, he didn’t have any classic covid symptoms and no-one even mentioned he might have the condition until six weeks into his illness. “I had fatigue, shortness of breath, tachycardia, insomnia and muscle aches from May 2020 onwards.”
Calum managed to complete his Economics degree, put plans to do a Masters in Cambridge on hold and moved back home with his parents in Edinburgh.
“The independence-limiting effects of my symptoms were extremely challenging to cope with and I noticed a strong link between my mental state and my perceptions of my physical health. With being unwell for so long, I often felt that I was not making progress in my recovery, or that I would never recover at all.
“It was made harder by not being able to see my friends through lockdown – and when I did speak to them, I didn’t want to dump how bad I was feeling on them. It was hard to access help, as no-one seemed to know what to do with me.”
In July Calum’s dad suggested he contact Thistle after hearing another young man with long covid who was supported by the charity being interviewed on the radio.
“I made contact with Thistle and started having regular telephone conversations with Angela, my Wellbeing Practitioner. It was extremely reassuring to be able to talk to someone about my fears with regards to my condition, alongside becoming aware of techniques and strategoes to manage symptoms and improve my mental health.
“On Angela’s advice, I enrolled on an eight-week Thistle mindfulness course. Although I had had some experience with mindfulness, the in-depth approach and regular practice offered by the course was extremely rewarding as well as meeting other people who understood what I was going through.”
“With Thistle’s support, I’ve found that I’m better able to manage the negative emotions and uncertainty surrounding my health, to accept my situation, and put an end to the cycle of self-blame.
“Thankfully, over the past few months I have noticed several positive changes in my mental and physical condition, which have allowed me to gradually increase my activity levels. I was able to spend some time with my girlfriend in Fife, I have started running again and hope to start my Masters later this year. Thanks to the incredible support I have received from Thistle, I now have confidence that at some point in the future I will be able to make a full recovery”.
Gold medal-winning rower and keen walker Elspeth McKenzie, from Leith, Edinburgh, contacted Thistle after struggling with Long Covid since May 2020.
“It felt like flu for a couple of weeks. Then I started to feel better and I went back to cycling and swimming, and I thought that was it – it had passed. But a few weeks later, I started to have difficulty breathing and was in so much pain, my whole body felt inflamed. I was fatigued like I had never been before. I experienced brain fog, stomach pain, headaches and insomnia.
“It was very frightening - I thought I was going mad. I’d had Covid and it was gone! Why had all these weird things started happening? Was it all in my imagination? I kept looking at social media and the news, trying to see if anyone else was experiencing this. No-one was talking about long covid back then.
“I eventually went to A&E in June as I was really worried about my breathing. They did tests and found my heart rate was fast and my blood pressure was high, but they didn’t know what to do and said my GP would look after me. I tried NHS Lothian's Post Coronavirus Rehab Advice Line who didn't really understand what I was going through. They gave me advice on breathing and exercising and going back to work in 6 weeks".
“It was very isolating. I couldn’t walk more than ten minutes without getting breathless and felt totally out of it all the time. Eventually, a woman from my rowing group told me about Thistle. She had also been struggling after having Covid and said Thistle had been really helpful. I was so fed up – I just wanted to be better, I wanted to go back to work and my rowing. I was desperate to find someone who could tell me how to get on with living.”
Before her first appointment, Elspeth’s heath and wellbeing practitioner Claire rang to ask what her hopes were for the session. “It was nice to feel proactive; being asked those questions in advance was a great starting point for the conversation. I’d been on a rollercoaster of trying things and being set back, and I wanted to be able to look to the future again – to going back to work and rowing.
“Claire was a godsend. Finally someone was listening to me. It was so helpful to speak to someone who understood what I was trying to deal with. I realised I was always thinking I ‘should’ or ‘must’ do certain things and I had to reset my expectations – it was almost like being given permission to convalesce at the rate I needed.
“Feeling you ‘should’ be well again can make you feel like a failure for not getting better, it gets you down a bit. Claire taught me to pace myself, to take small steps and set tiny goals at first - and to be kinder to myself and not beat myself up. I started to realise that on days I felt I’d done nothing, I’d actually done a few things.
“With support from Thistle, I've found ways to manage my recovery. If there are three things I want to do in a day, I schedule rest time in between them. My breathlessness has disappeared, and that made a big difference. I know I can keep building myself up if I carefully pace.”
Nine months on from coming to Thistle, Elspeth is looking ahead to the future.
“I am back walking, doing yoga and rowing with Newhaven Coastal and Eastern Amateur Rowing Clubs. I went back to work on a phased return last November – at first I had terrible brain fog and couldn’t even remember how to switch the computer on! My employer, Sight Scotland, was brilliant and got occupational health involved and I am now back full-time in my role as a document transcriber. I also became a grandmother for the first time to my gorgeous granddaughter. It’s made such a difference speaking to someone who is understanding and can give you advice that is helpful.”