As we enter Spring, having marked the second anniversary of the UK’s first Covid lockdown, Covid survivors may be reflecting on the impact the virus has had on our lives. A very common symptom of Long Covid is chronic fatigue, something many people may be experiencing for the first time. Some Covid-19 survivors may have had to switch to working part-time, or even have had to stop work altogether. Adjusting to a new schedule, a new body, reduced energy, and often constant pain, takes courage and determination. There is limited support and thus far, no clear treatment for Long Covid, so what can we do ourselves to help manage this debilitating condition?
Provision for Long Covid treatment across the country is often difficult to access, inconsistent, patchy – and is non-existent in some areas. A few patients have been offered specific training in symptom management, where practitioners teach pain management, relaxation techniques, Mindfulness and Cognitive Behavioural Therapy (CBT). Pacing can be an effective tool however, though few medical professionals offer training in this valuable skill.
Rhianne, a stay-at-home mum of three who caught Covid in the first lockdown, was taught pacing by an Occupational Therapist at a Long Covid clinic. “Before Covid, I used to rush around every Saturday, cleaning, doing laundry, taking the kids to and from football,” she said. “After Covid, I continued to push myself to keep up that routine but, by Saturday evening, I would be exhausted and unable to get out of bed. My husband would look after the boys while I slept through the rest of the weekend. I'd spend the next few days feeling not only tired, but also guilty about how little time I'd had with my family.”
This sort of 'activity cycling' is common: it was only when Rhianne explained her hectic schedule to an Occupational Therapist that she realised how irrational it was. “It suddenly dawned on me that I was rushing around trying to make a wonderful home for my family, but was then too exhausted to enjoy either it or them!”
The therapist showed Rhianne how to create a weekly routine which helped her spread the household chores throughout the week, scheduling in rest time as a priority rather than an afterthought. Now she has adjusted to having regular rest periods, Rhianne finds she has more energy: as a result, she enjoys more quality time with her children.
“I do a better job now of keeping on top of the housework because I do a little bit each day,” she explains. “Looking objectively at my routine, I could see that I was wasting time on jobs that weren't really necessary – or could be done by someone else! The kids now make their own beds, and my husband cooks the weekend meals – saving me a couple of hours a week!”
In order to maintain her routine, Rhianne spends 20 minutes every Sunday evening looking at her calendar. She looks not just at the week ahead, but also the coming month. She marks in rest periods, activity periods and jobs that she must do that week. If she has a busy day coming up, she plans a longer rest period for the day before and the day after.
Mahmoud, aged 40, is unable to work due to Long Covid but uses pacing techniques to manage his symptoms: “It's easy to get stuck in a rut when you're at home 24-7. It took me a while to realise that staying in bed all day was actually making me feel more ill, not less. The more light activity I can fit into my day, the less pain I am in and the more I feel I have achieved. My sister helps with my cleaning, but I still do a little bit each day. That way, if I can't get out of the house, I've still had some exercise. But, unlike previously, I don’t rush to get all my tasks done at once. I will do a little activity, then do a sit-down chore, then do another quick stand-up activity, followed by a rest”. It took Mahmoud a while to get that structure right, and to integrate what he’d learnt into his daily routine, but he now finds it comes naturally to plan and pace his chores. “I achieve far more each week now that I schedule rest periods in, and spread big chores across the week.”
A key component of pacing is ensuring that rest periods become a regular part of the schedule, thus preventing any pain from escalating, and avoiding complete exhaustion. Establishing a pattern of alternating activities is also important as it decreases the likelihood of pain caused by repetitive movement.
More intensive pacing techniques involve timing how long a person can do an activity before causing an increase in symptoms. Denise, aged 56, had to retire from her job as a support worker, after spending three months in hospital with Covid. During a session with her Long Covid clinical team, she was asked to complete a chart for a week, noting down each activity and her pain levels before, during and afterwards. She was then set limits on how much time she should give each activity, before switching to a different one. These limits were set by calculating the average amount of time Denise was able to spend on a particular activity before a marked increase in pain and/or fatigue: the final figure was given as 80% of that average time. As a result of this analysis, Denise’s pacing times were set as 10 minutes standing, 8 minutes walking, and 15 minutes sitting.
By encouraging patients to gradually increase these times, the emphasis is placed on increasing activity overall, thus giving the patient much greater control of their own life and a real sense of achievement. This focus on achievement is especially important as many people with long-term chronic health conditions are also susceptible to depression. With mental health as a focus, patients are encouraged to strike a balance between activities done out of necessity and those done for pleasure. Denise was advised that her standing time could be spent doing an activity that she enjoyed such as cooking, then she could do a sit down activity for 15 minutes followed by a short break before returning to her standing activity. The aim was to create a routine which allowed Denise to keep pain to a minimum whilst maintaining as much activity as possible. Not only did this create a balanced framework to Denise’s day, it also allowed her to ration out her energy more evenly, thus increasing what she could manage to do each day.
Pacing Takes Practise
It is important to recognize that pacing does require effort and practice: it is not a skill that comes naturally. Sami, who works with autistic adults, attended a pain management course online for those with Long Covid. Over twelve sessions, the course covered subjects such as the impact of positive thinking, posture and pacing. Despite her training Sami often finds the urge to 'do' over-rides the knowledge that she must not 'overdo': “As soon as I feel ok, I rush around doing all my jobs just in case I'm ill again the next day!” This will be a familiar story to many people with Long Covid. However, if we remain determined and focussed, the rewards of pacing can be substantial. By making a conscious effort to use these techniques, we can still manage to complete tasks: in fact, those who practise pacing effectively often actually achieve more.
Introduce a Pacing Pattern into your Routine
As we move forward through the year, how can we use pacing skills to their greatest effect?
Take time to plan ahead. Integrate pacing into your schedule – plan the days, weeks and months ahead carefully, striking a balance between activities, exercise and rest. Consider doing this via a planner app or writing in a notebook.
Delegate tasks to other family members ─ even young children can do their share. Little ones get a great sense of achievement from helping their parents with basic tasks such as sorting laundry and dusting. Older siblings can learn to prepare a simple meal or assist with household duties.
Explain your situation. If family and friends don’t understand your need to protect yourself from over-activity, consider sending out a short note or sitting down with them to explain that you need to manage your condition better. Tell them that you would prefer to have quality time with loved ones rather than spending it recovering in bed.
Begin to say ‘no’ (and don’t feel guilty about it!) This is a key component to striking a healthy balance, especially at a busy time. It is also crucial that we learn to say ‘no’ to ourselves. Try to monitor your own thoughts and recognize the urge to do ‘just one more job’.
Most importantly, prioritise your own health needs rather than leaving them as an afterthought. The pandemic has had a huge mental impact on most of us, but coupling that with the physical impact of Long Covid brings unique challenges. Remember that you are not alone: many thousands of people across the UK, and millions across the world, are battling Long Covid. There are support groups, such as the covid:aid Support Community, which offers advice, tips, and opportunities to ask others for support.