Recovering from Covid 19: post-viral fatigue pointers from someone with CFS

 

As with viral infections in general, Covid 19 infections can lead to long lasting or even chronic fatigue. In a conversation with a friend of mine who is in this situation, I realized that things that for me – having lived with post-viral fatigue for a while now – are second nature, are not for those more new to living with fatigue. So I thought I would share some of what has helped me, and perhaps it can help someone recovering from C19.

The general situation

Living with Chronic Fatigue Syndroms (CFS) is unpredictable, and it seems that’s the same for many recovering from C19. Our energy levels change over time and cannot easily be predicted. One day, I may be able to do a few things, other days I need to rest the whole time. I may have some energy in the morning and need to rest the rest of the day, or more in the evening and less earlier in the day. And I sometimes have more physical energy and less mental energy, or the reverse.

I am unable to live as I did, and it can be baffling, puzzling, and scary to see that both body and mind function differently from before. Even something as simple as watching a movie from beginning to end or doing mindfulness practice may be difficult if not impossible.

We react to this in different ways and it changes over time. We may experience fear for the future. Grief over the loss. Frustration over not being able to do the same as before. Anger that this happened to us. Sadness. Vulnerability. People around us may but understand and we may go through a range of reactions for that reason.

Over time, we learn to adapt to the new situation. We find practical strategies that makes our daily life easier and more enjoyable. We may even find genuine meaning in our new life.

Pratical pointers

Here are some practical pointers I have found helpful for myself. They are not in any particular order. You may want to pick just one that resonates with you and apply it to your day. And then perhaps another on another day. Over time, these may become new habits and feel easy and natural.

Most importantly, follow the advice of your doctor and specialists. If you feel your doctor is not taking your condition seriously enough, find someone else. Seek out the best medical support you can for your rehabilitation.

The essence

You may not be able to do what you did before, whether it’s physical or mental activities. And that’s OK. Your body needs rest to stabilize and recover.

Your main job is to rest. Anything else is just a bonus.

Do half of what you feel you can do. Save energy so you don’t crash and your body can heal.

Social life

It’s completely OK to say “no” to invitations. Tell them you would love to go, but are unable to because of your health. Perhaps connect in written form or on the phone or virtually instead.

In a conversation, it’s completely OK to say “I notice I am getting tired and need to rest”. When you notice you have limited energy at the start of a conversation, you can let them know and that the conversation may need to be short.

If you schedule something with someone, consider letting them know in advance that you may have to cancel and why. Canceling is completely OK. Your main priority is rest and your health.

Sometimes it’s worth spending energy on something even if you may need to rest extra later. Avoid crashes since it takes longer for your system to recover from this.

Communication

Educate those around you about your situation. Share sources with them. Or, if you are unable to, ask them to find good information and educate themselves.

Communicate. Ask for what you need. People are not mind-readers. Most people have limited personal experience with this type of fatigue. They may not know or understand what you need unless you let them know.

Tasks

Make a “hidden” to-do list with everything you need or want to do. Out of this, pick one or two and put them on your to-do list for the next day. If you do these and find you have energy to do more, you can always go back to the longer list and pick something. If you can’t do the one or two things, that’s OK too. Your main job is to rest and support your body in recovering.

See if you can find an easier way to do what you need to do. Maybe you can do tasks more slowly and with time for rest. Break a project into smaller parts and do one at a time with rest in between.

Ask for help with practical activities. If you can, pay someone to do housework or practical projects. Ask friends and family. Tell them your situation and let them know how much it would mean to you. (And also that “no” is a perfectly good answer.)

Activity window

In periods where we have more energy, it can be tempting to speed up to do as much as possible. See how it is to slow down instead and give yourself time for rest.

See if you can stay within the activity “window” where you are not doing so much that you feel worse after, and where you don’t do so little that you become more inactive than you need.

Rest

Your main job is to rest and allow your body to recover.

Rest before, during, and after activities. And rest extra to give your body a better opportunity to recover.

Find what’s quality rest for you. Set aside time for this.

Learning to receive help & changing identities

It can be challenging to learn to receive help, especially if we are used to be more self-reliant. An honest conversation around this can help. You can tell those around you that this is difficult for you and hear how it is for them.

Also, trust that people say an honest “yes” when they are helping you. And remember that helping you can give others an opportunity to feel useful and it can give them a sense of meaning.

Learning to live with fatigue and other health challenges involves a change in identities and roles. We are often identified with the roles we have, especially when these roles are seen as desirable by society, so it can be challenging to lose these identities and roles. Remember that who you are doesn’t change and you are 100% valuable independent of your roles and identities.

Social support

Find others in your situation. Find support groups on social media and elsewhere. Connect with people who understand.

Change your doctor if you are not satisfied with him or her, and if you don’t feel understood and supported.

Follow the body

Learn the signals from your body. What are the early signals of having done too much? What are the early signals of crashing. Take these serious and rest when you notice them. These signals vary but for CFS can include nausea, headache, and a “wired” feeling in the body.

Learn to be flexible and adapt to what your body asks of you. You may have planned something and it’s completely fine to cancel, postpone, or just do one part if you notice you need rest.

If you have a yes/no decision to make, for instance about an invitation, you can do a quick test. Say to yourself “I can do [the activity] if I want to, and I want to” and notice how your body responds. Does it tense? Does it relax? Then say to yourself “I can do [the activity] if I want, and I don’t want to” and notice how your body responds. Tension is a “no” and relaxation and a sense of relief is a “yes”.

Self-worth & emotions

You are 100% valuable even if you can’t do all you want to do. (Any ideas of worth tied up with our activities come from culture and are especially not useful when we find ourselves in a situation where we are required to rest and reduce our activity level.)

Whatever you feel is completely OK. It’s not wrong.

Support your body

Do simple things to support your body.

Gentle movements. Nature. Drink plenty of water. Eat mostly unprocessed foods and fresh fruits and vegetables. Eat regularly.

Be mindful of, reduce, or avoid stimulants. These can give “false energy” and make you feel you can do more than you actually can.

Get massage, acupuncture or whatever else helps your system.

Adjust recreational activities

Any activity takes energy, even just talking or watching a movie. It’s OK to take a rest from even apparently simple activities.

Allow yourself to read, watch, or listen to something simple and enjoyable. You may not have the energy for something long or very meaningful or deep, and that’s completely OK.

Find easier way of doing what you like to do. For instance, instead of reading you can listen to audio books. Instead of going for long walks, you can go for shorter walks or just sit outside.

Identify energy thieves

Identify what drains your energy and find ways to eliminate or reduce it in your life. For instance, it’s completely fine to avoid news if it increases your stress level. Your main job is to rest and recover.

Energy thieves are found both in our daily life situations and in our thinking. It’s helpful to prioritize and chose away what’s not essential if it’s draining. If we need to do something, find ways to spend less energy doing it. And if we have stressful thoughts, it’s good to identify and question them.

Mental stress

If you struggle with your situation, it can be helpful to talk to a therapist.

It can also be helpful to learn simple and practical tools from cognitive therapy.

It’s not helpful to compare yourself to others or how you were before. Your standards are now different. Your priority is to rest and recover.

Enjoyment & Nature

Find simple things that give you enjoyment in daily life.

Nature is healing. If you can, sit outside. Enjoy the wind and the sun. Even a few minutes can be refreshing and rejuvenating.

And remember…

Your main job is to rest. Anything else is just a bonus.

Your life is not over. It’s just different. And it can still be meaningful.

Finding meaning

When we are unable to do as much as before, we can experience a loss of meaning. We may have invested meaning in activities in our previous life, so when these are gone so is that particular meaning. The good news is that we can find meaning somewhere else.

The invitation is to find meaning in our life as it is, however it is.

It can be just in watching the sky out the window and listening to the birds. Or having a cup of coffee or tea. Talking with friends and family. Engaging in a simple spiritual practice. Or perhaps offering some of our gifts to others in whatever way we are able to. It doesn’t have to be big. It’s possible to find meaning even in the small and ordinary things.

The upside

There are some upsides to the limits life puts on us, even if they can be difficult to notice at first.

What these are is unique to us.

We may have more time for something enjoyable or meaningful – perhaps time with family, friends, reading, or something else.

We may find our value independent of our activities. Discover the value and beauty in slowing down. Find genuine enjoyment in the simple things in life.

We may find that we don’t need to live up to the images we previously tried to live up to, and this is a huge relief. We may be more genuine and vulnerable with those around us and connect at a deeper level.

Spiritual practices

This won’t apply for everyone but I’ll mention it as an example of how we can adapt to a life with less energy and/or brain fog.

Spiritual practice has been important for me most of my adult life. And this period of fatigue has been a kind of retreat. I haven’t been able to continue doing some of my previous practices the way I did them, but I have found other practices and different ways of doing some of my previous practices. Mainly, I have learned to do spiritual practices in a more relaxed way and with more ease, and to weave them more seamlessly into daily life.

In that way, this period of fatigue has been a blessing.

Contact

If you have questions or comments about any of this, feel free to leave a comment or contact me.

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4 thoughts to “Recovering from Covid 19: post-viral fatigue pointers from someone with CFS”

  1. These are good suggestions for anyone with a health condition, are an accurate description of how my beloved now lives with Parkinson’s disease.

  2. Yes, that’s true. It’s something that has become “invisible” to me so I forgot to include it, but it was very challenging for me in the beginning. I’ll include something about it in the article.

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