Long Covid and How to Manage Post Viral Fatigue Safely

Post Viral Fatigue Symptoms

One of the things I wish I knew from the start was how to manage post viral fatigue. This isn’t like most illnesses where you can push through it. This doesn’t allow you to do this, instead it makes the post viral fatigue symptoms worse and leads to crashes, where all your energy is depleted. This isn’t like normal exhaustion or fatigue. No one will know just how debilitating it is until they experience it, this included me.

I have never felt fatigue like this before. This completely knocks you out, and it has left me confined to the bed on many occasions. I am currently finding it’s taking longer to recover from the crashes. I’ve been mainly confined to the bed for two months now. I have difficulty doing daily tasks and rely on my husband to do most of them. Due to the worry and distress of not being able to get back to a normal functioning state, I am also suffering from anxiety and depression in addition to the PTSD caused by my experience with the virus, and the unresolved PTSD from my childhood.

I would never have known what ME/chronic fatigue sufferers endure and how debilitating it is. It is a disability. You can’t get back to how your life was before. You can only function at a fraction of your normal capacity, and you can only take one day at a time because you have good days and you have bad days. You can’t plan anything because you can’t guarantee you’ll be well enough. It’s incredibly frustrating and distressing. It is not surprising people are developing mental health issues such as anxiety and depression with this.

Everything takes up so much energy, both physical and mental. I’m so surprised just how much energy writing, reading, talking, listening and concentrating takes.

I’ve had a handful of days where I have felt normal, but these are short lived. The cycle of feeling okay, doing things and then crashing continues. It’s only about six weeks ago that I realised this boom and bust cycle is dangerous, and can lead to me developing ME/chronic fatigue.

I am experiencing ME/chronic fatigue symptoms, and according to the ME Association I would now be classed as having ME/chronic fatigue due to length of time I have been experiencing these symptoms.

When I get extremely exhausted and crash, the fatigue is accompanied by flu like symptoms, my body and head feels achy, my glands are swollen. I have a huge problem with my concentration and have difficulty writing and constructing sentences. I find my short term memory is affected as well.

Jade Gray Christie’s Story

Many people are suffering, and here is Jade Gray Christie’s story – BBC: Long Covid: ‘My fatigue was like nothing I’ve experienced before’. I feel her story expresses clearly just how debilitating the fatigue is.

I was also surprised by the fact during the infection, she wasn’t taken to the hospital by the paramedics because they felt she was young and would survive. For me this brought up a lot of questions. If she had received some medical treatment, would it have helped her recovery and perhaps prevented her from having Long Covid?

I know I needed to be in hospital because my oxygen levels were so low and I couldn’t stay awake for weeks. My organs had slowed down. There was a moment when it was like a switch had been turned on and my body was working again. This was at the end of April 2020. My doctor told me this was the point the coronavirus had gone. If I went to the hospital they would have administered antibiotics, and this would have prevented me from getting the secondary chest infection.

They are saying that majority of the people suffering from Long Covid are the ones who have recovered at home. If the treatments administered at hospital help alleviate the symptoms of the infection, then this would surly have helped with recovery and perhaps prevented Long Covid.

The article also made me question the statistics. Since hospital admissions are seemingly being reserved for those who are regarded as the most vulnerable in society, then this is not really a true picture of what really is happening. It feels as if people who are not deemed vulnerable are not being given the treatment they need to recover fully. This is going to cause unnecessary suffering, long term damage, disabilities and preventable deaths.

Information about Post Viral Fatigue from the ME Association, North Bristol NHS and Your COVID Recovery NHS Website

The symptoms I’m experiencing are normal with post viral fatigue. The flu like symptoms are caused by the immune system not returning to its normal state after the acute infection. This information can be found in this pdf document by the ME Association:

ME Association: Information on Post-viral Fatigue (PVF) and Post-viral fatigue Syndrome (PVFS) Following Coronavirus Infection

One of the things I found extremely difficult to find was practical advice about how to manage the post viral fatigue safely. After a lot of searching, I found this very helpful and informative guide on managing the fatigue by the North Bristol NHS Trust.

North Bristol NHS: Chronic Fatigue Syndrome ME Service/Post Viral Fatigue- A Guide Management

The NHS: Your COVID Recovery website has a lot of useful advice but they give the wrong advice in the fatigue section. They say not to nap during the day, but I found this made my fatigue worse. The nap during the day gives me a bit more energy. I think we need to listen to our own bodies and do what it needs.

The NHS are absolutely right by advising to rest in between activities, but they are wrong when they say it’s okay if you feel tired after doing activities. I am finding when I push, even by a tiny amount, it will build up over time and lead me to have a crash. This is what many people are experiencing too. Running on adrenaline is the worst thing we can do, and this leads to severe crashes, which can take a very long to recover from.

The advice they give regarding getting active is probably appropriate for most recoveries. For example, I had a knee injury and needed surgery a couple of years ago. I was on crutches for almost six months. During this time my muscles and stamina went. Once I was mobile again, with the help of a physiotherapist, I gradually built it up with graded exercise. My mobility, muscles and stamina returned.

I found this approach didn’t work for me with the post viral fatigue, and it makes the symptoms much worse. I find the bike, which is what the Your COVID Recovery website is suggesting as an alternative to walking, too exhausting and makes me feel worse. Walking is much better and manageable. For me, walking has helped me with my breathing as well, but I have read this is not the case with many sufferers of Long Covid, many struggle walking and have huge problems breathing.

This article, The Guardian: Long Covid Overlap Emerges with ME Including Debate Over Treatment, also highlights the fact that some of the advice given on NHS: Your Covid Recovery website regarding the fatigue is wrong.

Due to the pandemic NICE (The National Institute for Health and Care Excellence) cautions against using graded exercise therapy for patients recovering from long Covid. This is a breakthrough and directly contradicts the NHS’ Your COVID Recovery advice given.

Everyone seems to be experiencing different symptoms with COVID-19 both during the infection stage and with Long Covid. I feel the most important thing is to listen to your body and give it what it needs.

Information about Post Viral Fatigue and Long Covid from the BMJ and Physios for ME

I found it extremely difficult to get comprehensive information about long Covid until I found this very informative BMJ (British Medical Journal) webinar. It covers all aspects of Long Covid and gives vital information.

The BMJ Webinar: Long Covid: Diagnosis, Management, Prognosis

The fatigue symptoms experienced by many of us with Long Covid is being likened to ME/chronic fatigue. The video below, Post Viral Fatigue (PVF), Post Viral Fatigue Syndrome (PVFS), and Myalgic Encephalomyelitis (ME) by Physios for ME, really brought home to me how ME/chronic fatigue could be avoided if the condition was managed properly from the start.

Phyisos for ME: Post Viral Fatigue (PVF), Post Viral Fatigue Syndrome (PVFS) and Myalgic Encephalomyelitis (ME)

I had no idea that pushing ourselves and the boom and bust cycles can cause us to develop long term ME/chronic fatigue. It was heart breaking to hear that so many ME/chronic fatigue cases could have been prevented if they hadn’t been given the graded exercise treatment by the medical profession. So many lives have been ruined by this.

With me experiencing these symptoms, it makes me angry to think that the medical profession feel that exercising and cognitive therapy would help us recover. It feels as if we aren’t believed. There are many ME/chronic fatigue sufferers who have and are experiencing this at the moment. We want to get back to our normal lives, no one wants to be like this. The depression and anxiety caused by the condition is absolutely natural. It is not the depression causing the fatigue symptoms, it’s the debilitating symptoms of the condition that causes the depression and anxiety.

The positive thing to come out of this pandemic, is that by having so many people suffering from post viral fatigue, ME/chronic fatigue at the same time, it has forced the medical profession to look at the symptoms and the advice given to ME/chronic fatigue sufferers again. It has led to the realisation that the advice they were giving in the past regarding graded exercise was not appropriate and caused more harm to the sufferers.

It’s brilliant that NICE have cautioned against using graded exercise therapy, but sad that they haven’t gone a step further and advised against using that treatment. Hopefully there will now be more research done into the condition, and ME/chronic fatigue sufferers will get the help and support they desperately need. They no longer will be fobbed off and they will finally be taken seriously.

How to Pace

I knew that I needed to pace but didn’t fully know how to implement it. This video by Physios for ME – Present Case Study of Post Viral Fatigue, / Long Covid / Chronic Covid 19 has been a tremendous help to me. I wish I knew this information at the start. I would have managed the fatigue a lot better and would have avoided the big crashes.

Physios for ME – Present Case Study of Post Viral Fatigue, / Long Covid / Chronic Covid 19

I thought I was resting by being in bed with my lap top on, whether it was watching, reading, listening or writing; this is not resting. Resting is lying down with no sound or distractions. I am doing this for about half an hour intervals throughout the day. I do an activity and then rest before doing the next activity. I have noticed a huge difference and feel I am managing the fatigue better.

This is an excellent and comprehensive guide on to how to pace and conserve your energy by the Royal College of Occupational Therapists:

Royal College of Occupational Therapists: Conserving Energy

It does take time and planning for pacing to become a part of our daily routine. I can’t do things spontaneously because I just don’t have the energy to do this, and everything take twice as long or longer to do.

I have three hours a day to do something, and I have to take half hour breaks or a bit longer in between these times to conserve my energy, so that I am not totally exhausted.

Two of my hours are for mental work. One is for my own work, which includes writing this blog, and the other for emails and other things. Everything takes so much longer to do. This blog has taken me eight days to write, whereas I could have ordinarily written it in two to three days. I find my energy is completely drained after about one hour of concentration.

The third hour is allocated for a 45 minute walk. The walk is necessary for my mental health and well-being. It’s also helping me to rebuild my leg muscles which were lost during the illness, and the fact that I have been mainly confined to the bed for eight months.

I know the PTSD and therapy, where I am working on the trauma caused by my experience with the virus as well as unresolved trauma from my childhood, will be draining a lot of my energy too.

My husband is doing all the household chores, including the cooking, and this gives me the time and energy to have those three hours. If I was on my own then I would really struggle looking after myself, and all the time and energy would be taken up by just doing the essentials. It would be impossible to have a social life and keep in contact with loved ones.

I know how lucky I am to have Thomas and for all his help, but there are going to be many people who do not have this help and support, and I don’t know how they are going to manage. This is where the government needs to step in and provide that help and support.

I still have good and bad days, and I can only still do a fraction of what I could do before I had COVID-19, about twenty percent, but I am not crashing like before and my brain fog is improving greatly. I have a very long way to go and it is very worrying and upsetting not being certain that I am going to fully recover from this. I can only do what I need to do and hope for the best.

Post Viral Fatigue and Long Covid

Since COVID-19 and the bacterial chest infection cleared by the end of May 2020, I am still experiencing debilitating symptoms caused by the infections. I’ve been diagnosed with post viral fatigue, which is being seen as one of the group of symptoms experienced by Long Covid sufferers.

Symptoms of Post Viral Fatigue

I have severe fatigue which is debilitating and affecting my day to day life. I have flu like symptoms and still continue to have chills when I am exhausted and at the point of crashing. I suffer from brain fog and have difficulty concentrating, have problems with words and constructing sentences. Something that would take an hour to do takes three times as long.

I cannot do the basic every day things like cooking and cleaning at the moment. I have to rely on my husband to do these things. The help he gives me enables me to have the energy to go for a walk in the park. This has been my sanctuary and it is necessary for my mental well-being.

I have good days and bad, but it feels like I’m having more bad days at the moment. There are times when I feel I am recovering and then I crash. I had a severe crash where all my energy went at the end of September, and almost two months since it happened, I still haven’t recovered from it. The anxiety and distress this is causing is severe. Not knowing when or if this is going to end is a nightmare. No one really knows at the moment. No one knows anything.

The ME Association: Covid-19 and Post Viral Fatigue Syndrome by Dr Charles Shepherd

The Effects on Society

Many people are suffering from Long Covid at the moment, and there will be many who develop long term conditions that are debilitating. The government were warned that the virus would cause disabilities, but they wouldn’t have been able to predict the extent of it.

Many people will have the threat of losing their jobs because they can’t return to work. There will be some who have the threat of losing their homes, which would be terrifying. They need help and support to manage their symptoms as well as economic support. The Statutory Sick Pay needs to be increased from £95.85 to an amount where people can survive. These things would help reduce the levels of stress in their lives so that they have a chance to recover.

Sadly as with the majority of things, this will have the greatest impact on the poorest in society. They will have no choice but to go back to work, but they will risk developing long term symptoms which will be debilitating. There are other things that will affect recovery too, such as getting proper rest and nutrition. So many people are struggling to get enough food to feed themselves and their families, and the pandemic has made it so much worse. This is the time where proper help, care and support is needed from the government. We need a strong state.

When I think how difficult it was for me to access the information I needed, to help me deal with and manage the after effects of the virus, it’s going to be impossible for those who don’t have access to a computer, or have the education and know how to navigate the internet.

Again, sadly it will be the poorest, the vulnerable and the most disadvantaged in society who will be greatly affected by this and suffer the most. Many will not have the information needed to be able to help themselves, and they will suffer unnecessarily. The government and the NHS should be providing all the information needed in an easy to find and accessible space.

Even though they say it’s a minority of people suffering from Long Covid, there are so many people who, like me, are off the radar. I feel the numbers are going to be much higher and they will increase greatly over the coming years, until they are able to suppress the spread of the virus with a vaccine.

My Fears of Not Recovering

The thing that distresses me the most is that I am not able to get back to my normal life, how it was before I had the virus. I returned to university to complete my degree in fine art in September, but when I had the big crash two weeks after starting the course, I had to take interruption of study because my health wouldn’t allow me to do it. My heart really wanted to stay so it was both heartbreaking and frustrating. My health deteriorated since I started the course and I was hindering my chances of making a full recovery.

There is a chance that I could develop chronic fatigue and the thought of this terrifies me because I know how debilitating this is. I wouldn’t be able to do all the things I want to do. For example, I need to finish my degree. I know I could probably do it part time, but that option is not available. There are going to be many like me who are not going to be able to get back to their normal lives, which is devastating.

There are many Long Covid sufferers, and like most, I feel I have been left to deal with this on my own. My doctor has been wonderful and sent me for blood tests and a chest X-ray, and thankfully everything came back clear and normal. There is nothing anyone can really do at the moment because this is new. They are learning.

Even though I am not classed as being vulnerable, I do have have an underactive thyroid, which is an autoimmune disease, and I also have many allergies and suffer from eczema. I also realise, due to suffering from ME/chronic fatigue symptoms, that I  always had a very mild form of it with my thyroid condition. It feels as if the virus has exacerbated it.

The medical profession will only know for certain through research and gathering as much information from people who are suffering from Long Covid, whether other pre-existing medical conditions determine whether someone will suffer from the virus severely. They will only know this with time.

Until recently, it has only been the infection rates and the death rates that have been mentioned. If people knew the severity of the disease and the potential long term damage it could cause, it could perhaps encourage them to adhere to the social distancing rules more stringently. The problem is you don’t know how you’re going to react to the virus until you have it.

Articles

BBC: ‘Long Covid’: Why are some people not recovering?

BBC: Coronavirus: ‘Long Covid’ patients need treatment programme, doctors say

How I Developed PTSD With COVID-19

I had a serious case of the COVID-19 during spring 2020. Although I was never tested, both my doctors were convinced I had the virus when I described my experiences with it.

I contracted it at the beginning of March 2020. The coronavirus went at the end of April 2020 and I was left with a secondary chest infection, which I feel was pneumonia due to the swelling in my lungs. This cleared with three courses of antibiotics at the end of May 2020. I am now suffering from post viral fatigue and experiencing long tail COVID.

My Experiences with COVID-19

I initially had difficulty breathing and the flu symptoms were mild. I thought I’d recovered after just over a week, but I was very wrong.

About two weeks after I thought I’d recovered, it hit my like a ton of bricks. I couldn’t breathe, my oxygen levels were low, I had fatigue that completely knocked me out and chills like I’ve never experienced before. I was in bed with a thick jumper, a thick scarf and under my thick duvet, and I was still cold.

I was confined to my bed unable to breathe and stay awake. I now know that this would have been classed as an emergency that would have required hospital treatment. I am pretty certain, now knowing the state I was in, they would have put me on a ventilator, my organs had slowed down and I couldn’t breathe. The survival rate at that time was very low with the ventilator, it was about 50%. There was a good chance I wouldn’t have made it back.

The first five days were the worst, and then I could breathe a tiny bit more, but I was still confined to my bed, unable to stay awake and unable to breathe. My oxygen levels still felt low. The times I needed to get out of the bed were extremely difficult and took up so much energy.

At the time, because of the government’s messaging, I didn’t think I had the coronavirus. I didn’t have a fever or a continuous cough. The other symptoms were never mentioned at the time, and in many respects, apart from the loss of sense of taste and smell, the list of symptoms to look out for in this country hasn’t been updated.

This does infuriate me because it is so dangerous and can put peoples’ lives at risk. Other countries such as Germany and the US list all the symptoms that can be experienced. This is a more comprehensive list of symptoms listed in the US:

Centres for Disease Control and Prevention: Symptoms of Coronavirus

Even though I didn’t think it was the coronavirus, I knew this wasn’t a normal illness. I’ve never had anything like this before, but I didn’t really think about it. I guess I tried to convince myself that this was okay and whatever I had would pass. The flu symptoms were mild so I didn’t think it was that bad. I just needed to rest. I couldn’t do anything else because I was pretty much out of it.

Everything slowed down, my organs slowed down. There was a point when it felt like a switch had been switched on, and I could feel my body was working again. This was at the end of April. I later found out from my doctor, that this was the point where the virus had gone and I was left with the secondary chest infection. The secondary chest infection, which I feel was pneumonia due to the inflammation I felt in my lungs, cleared after three courses of antibiotics.

My Emotional State During the Illness

I was calm for most of the illness, even when my oxygen levels were low. I was struggling to stay awake, and when I was awake, I didn’t really think about it. I treated it as a normal illness that just needed rest. I didn’t worry. During some of the time I was awake, I could write messages to friends and family.

There is a phenomena called ‘happy hypoxia’ that is being seen with some Covid-19 patients with low oxygen levels. The patients are calm, not showing any distress, and talking. When I read this article, The Guardian: Happy hypoxia: unusual coronavirus effect baffles doctors, it struck a chord and I feel this is how I was during the illness.

I think I only started to worry and feel distressed when I became more conscious, had a little more energy, and I didn’t seem to be getting better. I was in bed resting but there was not much improvement. Even after the chest infection cleared at the end of May, I was pretty much confined to the bed and suffering from fatigue, brain fog and some flu like symptoms. This is when I started to look for articles to help me make sense of what was going on.

These are the articles I found that helped me understand what was going on in my body. It also made me aware that others were going through this as well, so I didn’t feel alone.

Financial Times: From Blood Clots to Covid Toe: ‘The Medical Mysteries of Coronavirus’

The Guardian: Lingering and Painful Long and Unclear Road to Coronavirus Recovery – Long Lasting Symptoms

expert comment on treatment and recovery post-COVID infection

In some ways it was a relief to know what I was experiencing was normal amongst a small percentage of people recovering from the virus, but there was a part of me that was scared to see what the virus was capable of doing during its time in my body.

I didn’t feel scared as such, but I as I write this I am now realising that I might have been blocking those feelings unconsciously. It felt like my rational mind took over. It was trying to make sense of what was going on, and I was relieved when I found the answers. I was in survival mode.

When I Realised I Had Developed PTSD

About a week before I was due to start the BA (hons) Fine Art course in September, I had an overwhelming feeling of terror and anxiety. I felt I couldn’t cope and that it was too much. It was only when I made the connection with the illness that those feelings subsided. This is when I knew those feelings weren’t due to me starting the course, those feelings belonged to my experience with the virus, when I was severely ill.

I developed PTSD without me even being aware that I was being traumatised by my experience. I was shocked that I was completely unaware of such intense emotions during the illness. I was completely calm for most of the period. These intense feelings completely bypassed my conscious thoughts and went straight into my subconscious. They were contained in an area of the brain where they lay dormant, until it was triggered by an experience that inadvertently produces the same emotional response.

When I realised what had happened, everything started to make sense. Looking back to the months prior to this realisation, I noticed that I seemed to get very upset and emotional when I heard other people’s stories about their experiences with the virus, but I felt numb when it came to my own experiences with it.

My emotions had become disconnected from my experiences with the virus. The emotions are there, which is why I am triggered by other people’s experiences and I can feel their pain. Blocking these emotions was automatic, I had no control over it, I wasn’t even aware of them. I know the brain did this in order for me to survive the illness. I wouldn’t have been able to recover if I felt these intense emotions. I needed to be calm and not frightened so that my body had the energy to heal.

I know I was close to death. It took me a very long time to say the word death, the nearest thing I could say was, “I was close to that door”. This wasn’t a normal experience, as much as I was trying to convince myself it was.

It’s strange because even knowing others are going through this, and I am part of that group of people, I feel very disconnected from everything. Again, I imagine that might be another way of my brain trying to protect myself, by stopping me realising how serious this actually is. I don’t want to feel this numbness. It’s like a wall that comes up. I have started therapy again to help with this, and to help my brain start processing the trauma.

There are going to be many people who are going to be traumatised and develop PTSD and other mental health problems, caused directly or indirectly from this virus. They will need the help and support with this, but getting that help is extremely difficult through the NHS. It’s awful to know people will be waiting months or even years to see a therapist and get the help they desperately need.

I know how extremely lucky I am to be able to afford to have therapy privately. I could not have waited months or even years for help. I was feeling desperate and my anxiety levels were extremely high. I couldn’t cope and I felt the despair of not being able to function properly, and the PTSD and depression added to this anxiety. My mental health would have deteriorated and the likelihood of developing suicidal thoughts was high.

After a decade of austerity, everything is stripped to the bone, including mental health services. Once again, it will be the poorest, the vulnerable and the disadvantaged who will suffer the most. This is shouldn’t be the case, help needs to be available for everyone. I feel this is the government’s responsibility to ensure these services are available for everyone.

 

Brain Fog

Brain Fog


I took this photograph while waiting for the bus under the bus shelter. It reminds me of my current state of mind. I am experiencing brain fog much of the time since having the coronavirus.

When I am exhausted and at the point of crashing, I have severe difficulty thinking and concentrating. I have problems with words and constructing sentences. I have also noticed a small problem with my short term memory, but this is minor compared to everything else. I get very emotional when I am exhausted too.

Both my physical and mental energy gets drained very quickly and things take much longer to do, sometimes up to three times longer. It is very frustrating but extremely difficult too. It is causing me a lot of anxiety and distress. There are things I desperately want to do, but just can’t.

My life is not the same since having the coronavirus, and the thought of not fully recovering and having a chronic condition terrifies me.

They are discovering my symptoms are very common amongst Long Covid sufferers. Scientists are making the connection with neurological damage caused by the coronavirus to the symptoms. They don’t know how long it will last for, but they are seeing people who are getting better, so it’s hopeful. Here is a link to an article where people give an account of some their experiences with brain fog:

The Guardian: ‘Brain Fog’: The People Struggling to Think Clearly Months After Covid