This is an article to assist patients with the long-haul symptoms following COVID-19* My article is likely most relevant to Long Covid sufferers in their 'post-viral' stage - i.e those who find themselves still battling the symptoms after 4 months. But the sooner the advice can be understood the better. We will be discussing an operational practice used largely within the ME/CFS community known as ‘pacing.’ The importance of rest (and pacing ) during the period in which you are convalescing from the viral infection is critical. This sounds like common sense and you may have heard it before - perhaps from your local GP or an Infectious Diseases doctor. However, there is more to the advice than meets the eye.
Pacing and rest must be consistent, steady, strategic and long-standing. It will feel ‘unnatural’ to plan periods of lying down throughout your day at regular intervals. And for some it may be circumstantially impractical, but I cannot stress enough how essential this is to your recovery.
Some people like to wear a watch or a heart rate monitor to monitor their heart rate and keep their heart rate under their own personal threshold to avoid crashing. There are also apps available on your phone to aid this. Your heart may be an indicator that you are outside of your threshold.
A portion of post-viral patients may need to remain in bed for most - or even all – of their day. And if something called orthostatic intolerance creeps in off the back of viral infection, then even sitting up could prove extremely difficult. However, pacing (though tricky) proves to be beneficial.
The idea behind ‘pacing’ and rest is that you discover an ‘envelope’ of energy specific to you. The methodology is to figure out what your body needs before you exert any physical or mental energy – this may go as far as considering any thing beyond the parameters of simply existing.
For one patient an attempt to take a ‘phone-call’ might cause pain and/or even relapse. For another a walk around their living-space is enough to ‘test the waters’ when it comes to discovering how to pace effectively. Figuring out ‘pacing’ and how to rest sufficiently requires a long learning curve but it is worth it. As you fail and succeed you will come to understand how much ‘rest’ is needed for you to complete a task, or part of a task
If you are unwell and you are reading this, then take a break when necessary. Lay down and rest your eyes for half an hour then come back it.
This is an example of ‘pacing.’
Do not judge, analyse or put a ‘time limit’ on your body healing.
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For some patients just the effort required to sit up is enough ‘one day’ when putting ‘pacing’ into practise - even though a few days prior the exact same patient may have successfully walked a short distance outside. Wow. That is confusing, right? As bewildering as it will be, you will come to understand your own body during this trying time.
The physical symptoms associated to your post-viral illness will vary and improvement will rise and fall with seemingly little rhyme or reason - pacing and rest must complement this chicanery. Pacing can offer ‘command’ over a situation that seemed previously out of your control.
The concept of ‘pacing’ works to avoid the serious repercussions which can follow 12-24 hours after any kind of exertion for some people. For others the worsening of symptoms (as a result of physical or mental exertion) can take up to 72 hours or more. In the post-viral ME/CFS community we call this PEM – post exertional malaise. I will save the ‘science’ behind this (for now) and focus solely on advising you how to ‘pace’ and the advantages of doing so.
Again, depending on where you are at within your post-viral debilitation, please take a break and come back to reading this in your own time.
I promise my article will not disappear!
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It is imperative to remember you are working with a ‘different’ body (post-viral) so explore your ‘daily activity,’ energy levels and physical and mental capability with careful consideration. The words ‘fatigue’ and post-exertional malaise (PEM) are lacking when it comes to describing post-viral illness.
The body of a patient striving to get back after viral infection, may react as though it is ‘shutting down’ to conserve the energy requisite to subsist. This ‘power failure’ process can affect the patient cognitively as well as physically and can cause notorious flu-like and viral symptoms to persist with a vengeance – this is why ME/CFS might be referred to as a neuroimmune/inflammatory disease. Viruses and bacteria are much darker and more poisonous than they’re given credit when it comes to incapacitating their host - a spooky statement given that we’re in a pandemic driven by viral infection.
So how the hell do you physically ‘manage’ a neuroimmune disease? And what if you vacillate between mild to moderate to severe (all torturous in their own right) and this ‘pacing’ concept is just not possible?
Pacing is designed to stabilize (not to cure) the fluctuation and severity of post-viral symptoms.
For now, take a break from reading if you need to. And if you're reading this to educate yourself on behalf of a loved one or friend (or just in general) then I speak directly to you - this is likely to be a long journey with many ups and downs while the science desperately attempts to catch up; your empathy, understanding and consideration is essential.
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Pacing begins from zero – literally - and patients must use 0.1 fractions in order to creep towards whole numbers such as 1 and 2 and 3 out of 10! Monitoring the energy and exertion following viral infection can be as nit-picking and plodding as this. Colour code your mornings, afternoons, and evenings, depending on how you feel physically and figure out which activity (if any) you may be able to do within the colours you choose.
There must be strategy and an element of understanding and acceptance from yourself and those around you. This is serious. Pacing is an effective way (within your jurisdiction) to get through a period time in your life which hopefully you can one day look back on, rather than endure for many years to come.
One must recognize and ‘accept’ that the body’s ‘battery’ is not going to recharge (at least for now) like it once did. Some post-viral patients may very well bounce back to ‘normality’ in much less time than others but do not compare yourself because the science behind post-viral illness is extraordinarily complex and diverse.
The limited evidence we have concerning ‘medicating’ post-viral illness is crippling and unjust. But rather than focus on what we ‘do not have’ let’s shine on a light on what we know works. You will need to be committed to resting and pacing appropriately for the long-haul. No pun intended.
To those who were regular with their exercise routine prior to infection - you must not put any pressure on yourself to get back to it. Movement can only be encouraged within your energy envelope and strict custom-made pacing - that may be as simple as getting up to go to the toilet and getting back into your bed.
Slow and steady wins the race.
Whilst I encourage ‘strict’ pacing it is vital that there is room for flexibility. Remain rigorous with your effort to pace but allow elasticity as to how you sustain it.
Alongside the plotted resting and pacing, you must keep your mind ‘sane.’ Easier said than done given the circumstances, right? Mental health is important for everyone but markedly a person who is experiencing the gravity of post-viral debilitation and/or any long-term chronic illness must keep a watchful on eye on the health of their mind.
Reading an article like this should give you a sense of belonging and pacing effectively should bring you some much needed physical relief too. The ME/CFS literature (and the relatively small group of scientists pioneering in this field) is invaluable right now. The ME/CFS community (in general) are convivial and caring so reach out if you are experiencing on-going symptoms following viral infection.
As this article is ‘purely pacing’ I will not veer too much off the topic, but I must encourage you to be aware and explore your options to keep your mental health as robust as possible.
Once again, I encourage you to take time out to rest.
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Wrapping up this article with pacing at the heart of it - imagine you've a marathon and you are expected to participate without training or pre-warning. Then imagine that you have had a drinking session the night before, no sleep and perhaps throw in a bladder infection and/or piercing migraine, raised temperature and heart palpitations - just to spice things up a bit. To survive the distance ahead, as any runner would advise, pacing yourself is an integral part of the challenge.
The effort at which the body has strived to boost your immune system (to fight the virus in question) has come at a physiological cost elsewhere. You are going to have to learn to manage the new state you find yourself in. There are no written rules and some days (and miles) will be better than others!
Frustratingly a post-viral patient is also vulnerable to other pathogens and/or bacteria which means symptoms can snow-ball out of control. Hopefully (if you can comprehend the new physical state which your body is facing) you can at least adapt this concept of pacing fittingly. It may feel like two steps forward, three steps backwards most of the time but persistence is key.
Be gentle with yourself.
Your body has been under attack and by no means should you disdain or neglect the amount of bed rest that may be required before you move forward; it may be weeks, months or possibly years before a person experiencing post-viral fatigue can function any where close to what they did prior to infection.
There are millions of people missing from their lives (world wide) after a viral infection and/or trauma putting pacing into practise in order to function daily. Depending on the severity of your post-viral symptoms you will need to decide the best way for you to approach this.
I hope this somewhat lengthy introduction to a technique which could bring you relief has been informative. And may I end it with grave gratitude to the Open Medicine Foundation; to whom I proudly associate myself with.
OMF work exceptionally hard to raise the funds behind further research in post-viral illness and I do not know where post-viral patients would be without them.
Please consider making a small donation to the Open Medical Foundation by visiting www.bake4mecfs.com
We are encouraging those who are well enough, to bake some thing for us after you have donated - only if you are in good health and feel like getting creative in the kitchen! If you do not wish to bake but you happen to have some spare change, then please donate anyway as every little helps! However if you're happy to whisk some thing up for ME then I'll be delighted to virtually taste it! Just snap a photo and tag us on social media or email in. The website explains it all nicely.
Moving forward fiercely, awareness and funding is key. And I thank you personally for any level of support you may offer towards resolve and relief.
*The above is based on conversations with medical experts, and a personal review and interpretation of dozens of websites that address the concept of pacing and rest for people suffering from chronic complex diseases such as ME/CFS and post-COVID.
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