Fatigue is the most common debilitating symptom that is experienced in long COVID. It is often described as an overwhelming sense of tiredness which can be physical and mental.
Fatigue stops people from returning to work, cooking/ planning a meal, holding and understanding a conversation and playing with their children.
Some people find that when they are fatigued their body feels overwhelmingly heavy and that moving at all takes an enormous amount of energy.
It may be that specific muscles such as those in your hands and legs fatigue very easily and this can depend on the activity that you are doing e.g. writing, walking.
Mental and cognitive fatigue
Many people find that when they are fatigued it becomes difficult to think, concentrate or take in new information and that memory and learning is affected. Some people find even basic word finding and thinking difficult.
The fatigue people are experiencing with long COVID leaves them exhausted after completing the most basic of tasks, and some people wake up feeling as tired as they did when they went to sleep.
Fatigue affects people in different ways, and it may change from week to week, day to day or hour to hour. It may also mean people have little motivation to do anything because
they are so tired and/or know that undertaking the smallest task will leave them exhausted. This can make it difficult to explain to family/friends/colleagues.
Helping others to understand your fatigue and how it impacts on you can make a big difference to how you cope with and manage your fatigue.
A lack of sleep or poor sleep quality can make fatigue worse. Sleep can be adversely affected by a number of things:
- Needing the toilet
- Spending more time than usual inside
- Too much caffeine
- Temperature (too warm or too cold)
- Mood (anxiety/depression)
- PTSD and flashbacks.
When thinking about your sleep and the effect it is likely to be having on fatigue it is important to consider each of these issues and make any necessary changes to minimise the impact.
Pacing and recovery: The 3 Ps = Pace, Prioritise, and Plan
When recovering from any serious illness most people will experience ups and downs with their symptoms for a variety of reasons.
People tend to use these symptoms to decide how much they do. So on ‘good days’ they may try to do more, often trying to ‘catch up’ and very often overdoing it. This can result in experiencing a bad day and some people describe this as a ‘relapse’ when they might experience more symptoms and feel low and then are able to do very little.
It is important to remember that all activity takes energy, whether it is physical, mental or emotional.
You might have noticed that when you ‘overdo’ things, your symptoms are worse and you need to rest more. Resting decreases the symptom and you are tempted to be active again. This is called the ‘boom and bust pattern’ and is detrimental to your recovery.
Pacing is a strategy that helps you to get out of this boom and bust cycle and helps you to manage your activities without aggravating your symptoms.
You should develop an activity plan which allows you to stay within your current capabilities and therefore avoid ‘overdoing things’. Your levels of activity can then be increased in a controlled way over time as your stamina increases.
By pacing your activities you are ensuring that:
- You are controlling the demands you place on yourself.
- These demands are in line with your current capabilities.
- You are exposing your body and mind to these demands in a regular controlled way.
By deciding that you will not ‘overdo’ activity on good days, it is possible to avoid the severity of symptoms on bad days, therefore making it easier to predict the level of activity you will be able to achieve on any given day.
The first step is to think about how much activity you are able to carry out at the moment, even on a ‘not so good’ day. It is important not to compare yourself to others or to how much you could do before.
From this, you will be able to set a baseline of activity. This is the amount of activity you will carry out every day.
When energy supplies are limited, you may need to make sure that the energy you use is spent on activities that are the most important to you. It may also be useful to identify what activities in your day are necessary, i.e. which tasks ‘need’ to be done and which do you ‘want’ to do, what activities could be carried out at a different time or day, and which activities could somebody else assist with.
Prioritising activities is very individual and what may be a priority for some may not be for others. For example, it may be important for someone to use their energy to have a shower each morning and for someone else, they may limit this to three times a week to ensure they save their energy to carry out a leisure task that is important to them.
Tip: It may be useful to write down the activities that you both want and need to do throughout the day. You could then score these activities to help you to prioritise them. This will also help you in planning your day.
When planning your day or week, spread your activities out rather than trying to fit them all in one day. Think about when your energy levels may be at their best and therefore completing high energy tasks at this time.
Can an activity be graded so that it doesn’t have to be completed all at once? E.g. cleaning one room as opposed to the whole of the house.
Before starting an activity, it is useful to think about what you may require to complete that particular activity. It is helpful to have an organised working space and ensure that you have all items to hand to avoid you having to use more energy going back and forth.
Can you conserve energy by sitting down to complete some of the tasks? E.g. preparing vegetables for cooking.
As well as planning your activities, it is equally as important to plan your rest and relaxation times to allow you to ‘recharge.’
Creating an activity diary or a daily plan will help you to pace yourself and prioritise what you want and need to do.
It may take a few attempts to get right, but once you feel you have found your baseline it is important to ensure a period of consistency before this is increased again.
Create an activity diary
- Start at the beginning of each day.
- Write down each activity including rest period you have taken in each three hour interval.
- Using the scale below score how you felt at the end of this three hour period.
- Record any other factors you feel are relevant e.g. stressful events, skipping meals, over-exertion.
- Record your BORG score for each activity you undertake. Sometimes, activities that have a high BORG score do not have a high fatigue score.
When you are ready, you can gradually increase the amount of activity you are doing but be careful not to build up too quickly. As a general rule it is suggested an increase of no more than 20%.
Once you have made an increase, you will need to keep the levels stable for around a week before increasing again.