(September 2019)

As I write, I reflect on the fact that I have just had an amazing week professionally. As a campaigner passionate about inspiring the creation of workplaces where people can be open about mental health and prioritise wellbeing, I have enjoyed some wins. If you will indulge me a small piece of own-trumpet blowing, I have conducted 5 speaking engagements or events on the mental health and inclusion agendas with clients across 3 different continents; launched my new website and started marketing the FormScore App.

It has been a pretty momentous week. Prior to lockdown, any one of these events would have made for a successful 5 days with such a positive impact on my mental health mission. My FormScore has remained a consistent 8/10 during the week.

Behind the curtains

As I look around my house I see signs that all is not as it should be. There is mess everywhere. Not just the mess that all parents with young children experience during lockdown but proper accumulated, filthy chaos.

I then reflect on how my children are doing and am ashamed to say that they have been in front of a screen for way more time than not during waking hours. The social connection I evangelise about so often is missing with the most important people in my life.

Why is this?

The answers lie in the long tail of covid-19. My #wife and I are both suffering from the long tail and would be known as “long-haulers” in the US. More on this later but for the last 2 weeks she has been laid up in bed. The #kids and the dishwasher have been both been fed at broadly the right times and I am pleased to report that the bins have been taken out. I have also been experiencing a shortness of breath and a level fatigue that I have had to largely ignore. My stress levels have been pretty high. For example, whilst driving some slides for a CEO at an event I was hosting for circa 200 people in Asia, I also needed to navigate my 6 years old boy screaming at me as I refused to switch on an iPad at 8:30am. Tough times.

Experiences of Covid-19

Early on in lockdown my wife showed the symptoms of the virus. She was fatigued and had breathing difficulties. 2 weeks later, my symptoms started to show. I experienced a debilitating level of fatigue that required me to lie down between Zoom meetings; a shortness of breath that prevented me from exercising and constant headaches. However, I felt a sense of gratitude that the symptoms were relatively mild. After a few weeks my energy returned and a could breathe easier. I assumed, I was through it. I was soon to be proven wrong.

My wife was less fortunate, her symptoms have remained fairly constant and 4 months later she has significantly deteriorated.

Testing Times

When we first experienced the symptoms, tests were not available. The uncertainty was difficult at the time but we definitely had the virus. A subsequent test showed the whole family to be negative.

2 weeks later my symptoms returned, this time with a loss of balance and nausea. I have previously had the pleasure of an inner ear infection called labyrinthitis and it felt like the virus was attacking this system on this occasion. More time was required in bed. More juggling with my #wife as to who felt the least rubbish and who could look after the children.

For me, the next few months passed in a rhythm with periods of feeling ‘normal’ and others times feeling simply rotten. Symptoms have returned for me about 7 or 8 times. None of this made any sense after the negative test and brought a sense of utter frustration. The normal rules of recovering from an illness did not seem to apply. Four months later, I am still experiencing this yin and yang. I have no idea when I will be through these challenges. My mental health as measured using the FormScore took a big drop from an average of 8/10 duding the start of lockdown to a consistent 5 and 6/10 (low and average form).

The Mental Health Challenges that come with Long Covid

To understand how being a Covid Long-Hauler has impacted my mental health, it is important to understand a little more about the drivers of our form, or mental wellbeing.

This is not an exhaustive list but, for me, these are the pillars of my wellbeing. As we will see, they are connected and interlinked and a number of them have all been impacted by the long tail of Covid. Taking some of these in turn:

Exercise for mental health

As someone who experiences the mental illness of bipolar, exercise is my number one priority in managing my mood. Over the years, I have seen the effect of exercise on my mental FormScore. When I don’t exercise regularly, my form drops. The scientific benefits of exercise on our mental health are well documented. Personally, I get a sense of achievement and self worth from exercise; it gets me out into nature on my bike; exercise has a positive effect on sleep; it helps balance stress; it creates periods of mindfulness and time away from technology and other distractions.

Pretty much every time I have tried to exercise with any level of intensity since contracting the virus it has been the catalyst for the return of the symptoms. Quite simply, my ability to exercise has been taken away. 2 years ago I rode the Tour de France on a static trainer as part fo a mental health awareness campaign called the MindCycle riding for 8 hours per day for 3 weeks. Now, I can barely ride for 30 minutes and when I do, I know I will get ill again a few days later. For the purposes of this article, I did a 30 minute ride on my indoor trainer whilst connected to a Firstbeat heart rate variability monitor yesterday to look at the effects on physiological stress in the section below. I was completely wiped out in the afternoon. This is utterly soul destroying.

Sleep and mental health

Sleep is one of the most important drivers of our mental wellbeing. It is when our minds recover from the stresses of the day. It is an area that we compromise when we get busy but one where we can make immediate gains if we choose to prioritise it.

The lack of exercise has resulted in lower quality sleep for me. The constant mild breathing challenges when I am experiencing the symptoms of the long tail have also not helped. At a time when I need to be building reserve, one of the man mechanisms of doing so has been compromised.

Social connections and mental health

Social connections are such an important driver of our our mental wellbeing. As humans, we need these connections to thrive. Lockdown has deprived everyone of social connections in some way and it is no surprise that levels of depression have doubled during this time. I believe that my connections are a core part of how I stay well

The long tail has taken its toll here too. Not only do we have to be physically distant from people we care about but the constant energy required to fight the virus and do our jobs leaves little room for much else. The levels of connection both and and out of our families has suffered. My #wife is much more of a social animal than I and she has really suffered here.

Financial wellbeing

I consider myself fortunate here as I have the ability to adapt what I do to earn a living in a changing world. I have the skills and relationships to be able to do this but appreciate that many may not. At the time of writing #Wife is unable to work. Her employer is very understanding. Many also do not have this support.

I feel that the biggest challenge in respect of work and long-tail Cold is that it is not widely understood. People and employers generally carry a belief that Coronavirus is generally mild for most; can kill some but the majority recover. There is not widespread appreciation of the Long Covid effects and the fact that they keep returning. The ability to earn a living and the feeling of financial security can be severely impacted by the long tail effects.

Sense of purpose and wellbeing

A strong sense of purpose is an important driver of our form. Many of us derive purpose from meaningful work or the pursuit of our passions. I am grateful that I can still work and help people and organisations in prioritising mental health and wellbeing. Whilst I can’t get out my bike, I have other pursuits such as DJing that also gives me purpose.

However, many covid long-haulers will also experience an assault on their sense of purpose if they are unable to work or continue with their hobbies.

Other drivers of form

Long Covid can affect other aspects of our form. For me, my diet has not been as nutritious as it could have been at times as the low feeling affected my sense of discipline with food. Others may have been less able to enjoy the positive effects of helping other people as they have needed to prioritise themselves. However, at the heart of the research coming out about long-tail covid is the impact it has on our autonomic nervous system which is where we experience, manage and recover from stress.

Long Covid and stress management

We all know about the flight or flight response right? We experience physiological stress when we perceive a threat. The autonomic nervous system prepares the body to face this threat. Heart rate is elevated; blood pressure rises; blood is diverted from non essential systems (eg digestion} to the muscles; glucose is released from the liver; pupils dilate and our focus narrows. The stress hormones of Adrenaline and Cortisol are secreted. The sympathetic nervous system is activated.

We can then deal with the threat by fighting or running away or, in modern life, hitting the deadline, nailing the pitch or dealing with the boss. After the threat has been avoided our parasympathetic nervous system is activated allowing us to “rest and digest”. We can recover. This is all normal and part of being human. Problems occur in life when we do not allow our bodies to properly recover from stress. If left unchecked then it can lead to burnout which we take a look at in much more detail in this article.

What does this have to do with Long Covid?

We are starting to understand that Long Covid is causing “autonomic nervous system disfunction” in sufferers. What does this mean in English?

Our bodies are in a constant state flight or flight meaning that small levels of stress can cause massive fatigue.

The interesting thing about physiological stress is that it can be measured using something called heart rate variability. HRV looks at the gaps between our heart beats and how they vary. Amongst my many hats in wellbeing I am an accredited Firstbeat coach which, handily, enables me to monitor a person’s physiological stress response and recovery using their HRV monitor. I did a little test.

In the graph, the red elements show physiological stress (flight or fight) with the green showing recovery (rest and digest). To highlight the impact of Long Covid I did a very light 30 minute indoor bike ride at 8am. This was at 160 watts which in days gone by would have been known as a “recovery ride” for me - it it would just get the blood flowing but with no real effect on fitness. I then did a light yoga session. You can see from the graph that for the rest of the day, including a good proportion of the night when asleep, my body was in a stress activated state. I actually had to leave a garden party and spent 3 hours asleep on the couch on the afternoon.

For the next 3 days, the fatigue was crushing. This sort of response is generally associated with overtraining where one has pushed the system too hard and not recovered enough.

This is just one small example of how a small amount of physiological stress (in this case 30 mins of cycling) can cause a huge and negative response. Fortunately for me, work stress does not generally seem to trigger me in the same way. For many it does. My #wife has been off work for 4 weeks now.

The impact on mental health

My FormScore has been much more erratic in recent weeks due to these challenges of Long Covid. I would summarise the impact on mental health as follows:

1. I am unable to regulate and balance my mental wellbeing by exercising as I usually do.

2. The crushing fatigue caused by the effects of Long Covid negatively impact many other areas of life. For example; the joy of being a parent and connecting with my children is diminished as I have to spend weekend after weekend in bed.

3. The ability to pursue one’s passions (in my case cycling out in nature) is curtailed which has a detrimental effect on sense of purpose. I am grateful that I am able to work. Many cannot.

4. Social connections are also affected as Long Covid sufferers struggle to find the energy to socialise in whatever capacity that may mean at the moment.

5. Many Long Haulers either have an inability to work or have to force themselves through the fatigue barrier to do their jobs.

6. There is also a lack of empathy and understanding out there for the plight of Long Covid sufferers. We are starting to see more coverage of this but I fear it will all get lost here in the UK as the attention shifts back to tightening of restrictions.
   

Thoughts from Dr. Judith Grant, a fellow Covid long hauler

Judith is the Director of Health and Wellbeing at Mace Group and is a fellow mental health advocate. During the pandemic, I have watched in awe as Judith has shared her experiences and challenges with the Covid virus itself and subsequent Long Covid struggles. You can follow her here.

Judith’s words are very powerful and it is a privilege to share them with you here, unfiltered and unedited. It is also inspiring to hear her message of positivity and hope despite the adversity she is facing.

My experience of Long Covid has been undulating as Rob describes. I fell ill in early March prior to lockdown and before tests were widely available. The illness has taken me to A&E 4 times with varying symptoms but most often driven by breathing issues. I’ve had tachycardia, chilblains on my foot, shooting nerve pains in my legs, chest pains, migraines, and stomach problems. My main two symptoms throughout have been fatigue and issues with my throat. I had a case of tonsillitis (which I have never had before) that lasted months and couldn’t be cleared by antibiotics alone. Seven months on I have bad fatigue, occasional tachycardia on exertion and an inflamed larynx and tonsils with no obvious solutions. The various medical consultants I have seen for the different symptoms can offer no advice except pacing and time. The Post Covid clinic at my local hospital just gave me a leaflet on managing fatigue.

I was off work sick for 5 months and am working reduced hours on a return to work programme. I love work and being ill for so long highlighted how much my sense of self comes from the work that I do. Without work I felt lost at first although I know I was too ill to be there; now back at work and unable to focus for long or think as quickly as I used to I have felt frustrated and stressed. The covid lows that I experience are now accompanied by mental lows where I feel hopeless. These lift when the symptoms ease again. I live on my own and that worked so well for me pre-covid as I had an enjoyable social life and very busy work life, and I was always talking! Now I can’t talk for long without my voice giving out and becoming painful, and it has become challenging balancing work with social time with friends of family, as all make me fatigued. Not being able to exercise has been a huge loss as I did regular HIIT workouts before and have a home gym that I used regularly. Work have been supportive and I feel really thankful to have an employer who care as others are not so fortunate. I tried to force myself to increase my hours at work too quickly but have had to accept that if I do I will damage my health in the longer term. I feel fortunate that I have the freedom to make this decision.

Focusing on what I can do has been my main coping strategy through this. I have mostly eaten healthily and changed my already healthy diet to an anti-inflammatory one to try and ease symptoms. I have been having regular acupuncture and this gives me a real lift after each session. I can’t walk for more than 15 minutes without tiring so I plan routes where I can sit down or just put some good music on and have a little dance in my flat! I can lift very light weights slowly so I have been doing this when I can. My flat now looks like a jungle as I keep buying plants and looking after them has given me a new sense of purpose. I have started counselling to try and help me cope with my feelings around work and the wider stresses that this illness has generated. Sharing my Long Covid story has also given me purpose and access to a community who know exactly what I am going through. This is a huge comfort. Who knows when we will recover from this illness but more awareness and research is needed to hep this growing group of people.

It is very emotive for me to hear how Long Covid has attacked Judith’s identity as it has for me yet it is heartwarming to see how she is adapting. It is also encouraging to witness how supportive Judith’s employer has been during this period. Many many people do not have this level of support.

Tips on caring for your mental health with Long Covid

This is not an exhaustive list and I would be lying if I said that I could do these things all of the time but each of these things I have found helpful at certain times and can see that Judith has also adopted some of this thinking.

1. Be kind to yourself. First and foremost. Self kindness is so important particularly with the need to rest and pace ourselves.

2. Practice acceptance. I find his really hard but it is helpful to accept that I cannot ride my bike right now; that I will get fatigued and require a nap.

3. Be grateful. This can feel difficult but is very helpful. I am grateful that I can do my job. I am sure Judith is grateful for the support of her employer.

4. Realign your goals. Our old goals may not be unrealistic and will just drag your form down if we do not achieve them. Take a positive step and reframe them.

5. Be in the moment. We spend a lot of time lamenting what we have lost and worrying about what the future might hold. The present moment is all that truly matters.

6. Connect with others. Our social connections are so important right now and we have to work hard to make sure that we take advantage of them.

7. Accept support. We can often resist this when we are struggling but the capacity for support from our fellow humans is awesome when we allow it to happen.

8. Help others. This might seem counterintuitive when we are experiencing such difficult challenges but the boost in our own form we get from helping others is magical.

9. Practice self reflection. Ask yourself the question “how are you today?” and notice how you are feeling. The FormScore is a great way of doing this but the important thing is to give ourselves the gift of the space to check in with ourselves.

10. Don’t forget to have fun. I absolutely love the image of Judith putting some good music on and dancing around her flat. This alone brings me joy. We must give ourselves permission to have fun.

Concluding Thoughts

Long Covid is real. It is affecting thousands of people and it has a significant and negative effect on our mental health. Long Covid is still unknown to many and I hope that this article and Judith’s story will help demystify it a little bit and shine a light on the mental health implications of the condition.

Personally, my mental health is adversely affected by the loss of exercise but I am an optimist and am grateful for what I can do. I plan to chart my journey of recovery back to fitness in some posts here. My #wife has been seeing a specialist osteopath who has been utilising the “Perrins Technique” to release toxins and get the lymphatic system moving again. This seems to be having a positive effect and something that I will be trying too.

If you are a long hauler, I see you, hear you and feel you. We will get through this.

Rob Stephenson is a mental health campaigner passionate about inspiring the creation of mentally healthy workplaces and societies. He is the Founder of the InsideOut LeaderBoard and CEO of FormScore which is both a movement and an app that helps people connect around their mental health and support each other. He will also be back on his bike as soon as Long Covid permits. Link in with him here.