Living with Fatigue

I decided to share my experience of living with chronic fatigue from Long Covid because, unless you have experienced it yourself, it is difficult to comprehend what it is really like. I hope that it will be useful for those unfortunate enough to be going through something similar to share with others; and for those of you who have people in their lives who are dealing with Long Covid or ME/Chronic Fatigue to better understand their experience and how to support them.

Chronic fatigue (and post-exertional malaise) are invisible conditions: the person may look outwardly fine but still be suffering. It is frustrating to be constantly told that ‘you look fine’ or ‘you look great’ because it doesn’t acknowledge that, underneath, you are not well and that each day is a struggle (some more than others).

Fatigue is not the same as being tired: it is a bone deep lack of energy that is not restored by a good night’s sleep (if you are lucky enough to even get one of those). There is a ‘heaviness’ that sits over you making it difficult to think or focus or do anything. You can’t just push through and if you try to, you will make things much worse. When you say you are fatigued and people respond with ‘I know how you feel, I had a bad night’s sleep last night too’ or ‘everyone seems to be tired these days’, it belittles what can be a crippling and life-changing condition.

The fatigue is chronic: it is a long-term condition that you have to manage and learn to live with every day. It doesn’t just go away after a week or so, and you have ups and downs. So while it is always there for you, some assume that you must have recovered by now or forget that you have it (it is invisible). Recovery can be very slow and it definitely doesn’t follow a straight line. It doesn’t help for people to say ‘oh, you were doing so well last time I saw you’. It is nice when people ask how you are doing because it acknowledges your situation and shows that they care about you. I think that the best thing to say is ‘how are you feeling today’.

In Long Covid, the fatigue comes because the mitochondria (organelles in the cells that produce energy) have been impaired by the virus and cannot produce enough energy for the body’s needs. The body has to portion the energy out to key functions and some things just don’t get enough energy to do their job properly – causing other issues. Think of it as your body’s battery – it is a much smaller battery than you used to have, the charger is faulty and if you get down into the ‘red’ then it can cause further damage to the charging system and put your recovery back considerably with reappearance of brain fog and flu-like symptoms for example. For some people, and particularly when the fatigue is severe, the battery size is very small.

Everything that you do requires energy. This includes all the small things that you don’t normally think about like brushing your teeth, reading a book, having a conversation. When you have to start managing your energy budget, it is easy to think about reducing your physical exercise and forget that your brain uses more energy than other organs. Social energy or mental energy are an important part of the equation. Doing things that you enjoy (and that are good for your mental wellbeing), such as catching up with friends at a cafe (especially a noisy one), can drain large amounts of precious energy. Stressful situations can drain your energy rapidly too.

Some people only have the energy for the very basics of life and trying to do the dishes and the laundry on the same day can cause a ‘crash’. I am very grateful that I don’t have dependents to worry about because sometimes it’s the best I can do to look after myself let alone having to think about looking after others. Cleaning the house is certainly seen in a very different light these days; focusing on self-care and preparing nutritious meals becomes the number one priority (and having meals in the freezer for when even that is not possible).

I consider myself to be very fortunate to have recovered to a reasonably high level so that I am able to do many things now. I have managed to ‘increase the size of the battery’ available to me but now face the frustration of post-exertional malaise. This nasty complication means that you don’t get immediate feedback as to whether you have done too much but rather you can crash up to 3 days later. It is cumulative as well and makes it really difficult to manage your available energy. I might go for a walk or do gardening one day and feel really good, go to Pilates the next day and feel amazing, meet a friend for a coffee the next day and then crash the day after.

On the days that you are feeling really good it is hard not to do too much but if you don’t, you know that you will pay for it later. You have to pace yourself. It is hard to know how big your ‘energy envelope’ is – it is bigger than before but you don’t know how quickly it will increase or by how much you have expanded it. I was doing really well but have overdone it on a couple of occasions and am now facing quite a setback in recovery with reappearance of other symptoms as well.

I am extremely grateful that I was in a position to be able to retire (albeit rather earlier than planned). For many there is the loss of income that comes with reduced working hours or not being able to work at all. This adds another layer of stress that certainly doesn’t help your recovery.

Regardless of the financial situation, for many the fatigue brings about a loss of self identity: you may have to give up a career that you have developed over many years and/or stop playing sports or other interests that have previously been a big part of your life. Along with those activities are the people that you used to interact with on a regular basis and now don’t have the energy to contact. Many of those people are wonderfully supportive initially but as time goes on (drags on and on and on) they tend to forget that you are still struggling and the contact drops away.

Interaction with people is really important to avoid feeling isolated. Even if someone is not feeling up to meeting people, a text or an email can still maintain that connection. If they are up to it, it could be a phone call, a visit to their place or even a get together in a quiet place like a park. Always arrange these in advance so that they can prepare and be accepting if they need to cancel – they need to manage their energy budget carefully.

Much as someone may want to take part in family or social activities, it may simply be too much for them. Loud environments or lots of people can be very draining. Turning down invites or pulling out at the last minute is an essential part of managing their health. I have been very grateful after missing a large family event when a smaller group came round the next day bringing left overs so that I didn’t feel I had missed out too much.

I am forever grateful that I have my home and garden as my sanctuary and place of healing. I’m happy being a home-body for a lot of the time and happy in my own company with lots of interests and things that keep me amused and stimulated depending on my level of energy. But I am really struggling with giving myself permission to not do anything, to just lie on the couch and read my book. I keep reminding myself that it is my job now to recover and heal – and that is okay.