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The Wellbeing Rooms

My story of living with and recovering from Long Covid- Guest Blog by Dr Kate Edgar, Clinical Psychologist

Updated: Aug 18




For many, the days of Covid lockdowns, home schooling, mask wearing and social distancing are a thing of the past - a surreal part of our nation’s history that we look back and marvel that we lived through. However, a significant proportion of the population (current UK estimates are 1.5 million) have been left debilitated by Covid-19 and are suffering from Long Covid (LC), otherwise known as Post Covid Syndrome. Scientists are only just starting to understand this illness and offer new treatments. However many of these treatments are not available from the NHS and specialist LC clinics are variable in provision.


I am a clinical psychologist working with adults and I caught Covid in October 2020. I went on to develop LC, which I can honestly say has been the most challenging experience of my life. I spent the first 12-18 months hardly leaving the house and mostly laying on my bed or sitting on a chair. I went from being a very active person – a mother to two children with a busy private practice – to not being able to do anything at all. I had to use a mobility scooter and a disabled parking badge. HOWEVER, 3.5 years later, I am almost fully recovered. I wanted to write this blog to explain about the condition but also to offer hope to those currently suffering.


The common perception of the public is that LC is about 'feeling tired all the time'. For some, it is – fatigue can be a significant feature of LC, but for others it isn’t. LC presents itself in a range of different ways with numerous symptoms, often affecting various systems of the body. For me, for example, I felt like I had a bad flu that just never went away. My muscles twitched, my joints ached and my shoulders, back and thighs felt like they were permanently sunburnt. I had shooting pains in my forearms. I had a range of gastric and digestive symptoms. I couldn’t tolerate temperature changes or regulate my temperature. I had heart problems - palpitations, irregular beats and sudden thuds. LC really affected my brain too – it literally wouldn’t work. I remember trying to calculate how much change I would get from a £10 note if I bought something for £5 – and I couldn’t. Driving was too cognitively demanding and I couldn’t look at screens, or read a book for many months. I felt ill all the time and couldn’t work.


One of the most difficult and frustrating  part of Long Covid is Post Exertion Symptom Exacerbation (PESE), also known as Post Exertional Malaise (PEM). PESE or PEM is the result of a person ‘doing too much’, causing their symptoms to flare up and leading to setbacks in their recovery. ‘Too much’ is very much an individual measure and depends on what each person’s body can do. As recovery progresses, the amount one can do increases, but it’s an ongoing balancing act to not ‘do too much’. This makes it hard to know how much to extend oneself and can lead to self-criticism if one misjudges this and has a flare up of illness.



 

Psychologically speaking, LC is very challenging. Thankfully my professional training equipped me with some theories and techniques, which helped me get through. I should note these are only my opinions based on my experience – not evidence-based – as LC research is still in its infancy.


Here are some key ideas:


❤️ Acceptance

The first thing my GP said to me when she diagnosed LC was ‘it’s really important that you accept where you’re at and save your energy for recovering’. This maybe sounds a bit cliched, but actually turned out to be excellent advice. As humans we are very prone to struggling mentally with things – wondering ‘why me….what did I do wrong?’, arguing with ourselves and being critical of our limitations. This can extend to behaviours like constant Googling of symptoms and pushing ourselves to do the things we used to, even though our bodies aren’t ready. In order to recover from LC I think it is crucial to let go of this struggle. That doesn’t mean ‘giving up’ and resigning oneself to being chronically ill. It means acknowledging this is how things are for now and, instead of using energy ruminating or researching symptoms, to engage in things that are positive for your wellbeing and will support your body to recover.


👭Connection

Find others going through the same experience, including those further along in their recovery than you to give you hope. You may have a local LC or ME/CFS service that can put you in touch with others. Online connections can be invaluable – I found joining a Facebook group called ‘Yoga and Meditation for Long Covid Recovery’ so important for my mental health. Avoid forums that are full of negative voices – you need to be around recovery stories and people with a positive outlook. And remember that in these groups, many people who have recovered have already left so the population, and the narratives, may be skewed. Also remember that if you are recovering at a different pace from others that isn’t your fault, or because you are ‘doing something wrong’. People have different symptoms, different demands on their lives and different genetic make ups, along with numerous not yet understood factors that explain different responses to the Covid virus.


🛏 Pacing and resting

Pacing and resting are, in my opinion, fundamental to LC recovery. In my professional life I have helped people with ME/CFS pace and yet I don’t think I appreciated quite how important this was, or the level of detail and analysis needed. Pacing initially involves keeping a diary of your activities, rating the demand they place on you and noticing the impact on your LC symptoms. By ‘activities’ I don’t necessarily mean cardio activities such as walking and climbing stairs – but anything you do other than lie in the dark in complete silence. Brushing your teeth, having a shower, making a cup of tea, even watching Netflix, uses up precious energy. Getting a good understanding of this and then structuring and prioritising one’s day with activities and rest periods in mind is important – and something constructive you can do to help yourself. I found the book Classic Pacing really helpful https://amzn.eu/d/65HVYWq. You need to learn your body’s limits and when and how you can start testing them. In tandem with pacing, rest is so important. As humans in this modern age I think we are generally very poor at resting – I know I was. It’s so easy to think we are resting if we are sitting on the sofa, watching TV and scrolling on our phones – but that is not resting! Understanding the true meaning of rest and practicing relaxation and breathing exercises can help your body recover. Claudia Hammond’s book on Resting was a good read: https://amzn.eu/d/dfVoPJx.


🎢 Blips

Blips are almost an inevitable part of recovery from LC. Note I don’t use the words ‘relapse’ or ‘setback’ – for me perceiving them as ‘blips’ on my recovery path was more helpful than viewing myself as regressing.  I had numerous blips, and initially they were very hard to bear, and very hard to believe I would come out of them. But I always did. When you have a blip, try to accept that this is where you are. Be really compassionate towards yourself. See what you can learn from it (but there may not be anything) and then focus on looking after yourself. Know that you will improve again.


🤞 Keep hopeful

Read recovery stories - millions across the world have now recovered from LC. Of course, there are stories of people who haven’t but most people do, and there’s no reason to think you won’t be one of them. Notice any negative thoughts that crop up and try not to give them any weight. I used to remind myself ‘Just because you think it, it doesn’t make it true’. Focus on the small improvements you notice – in my experience recovery moved at a glacial speed, but it is there - if you judge improvement over months, rather than days. Seeking support from a psychologist or therapist with an understanding of chronic illness could be really helpful.


🧘‍♂️ Be mindful

Focus on now. Sometimes the only way through a difficult day is to focus on the absolute moment that you are in. There are lots of free mindfulness resources online and some great practical ways to be mindful in your day. Some also suggest that polyvagal exercises can help LC – this book, written by another clinical psychologist with LC contains some ideas for this: https://amzn.eu/d/hT1U6Zs


🌿 Engage with nature

Get outside. If you don’t have a garden, take yourself to a natural space, or even just open the front door and smell the fresh air. This was all I could do for months, but just that change of environment gave me a tiny lift each day.


😊 Live according to your values

This seems impossible when life is so limited and you feel so ill. However,  there is a therapy called Acceptance and Commitment Therapy which can help - and one of its components is identifying what your values are – what matters most to you. For example, being a good mother is important to me, as is being kind to others and being community spirited. Having identified my most important values I could work out how I could still engage with them, despite my significant limitations. For example I would cuddle my son and have him read to me so that I was still being a present mum, even if we weren’t doing muddy hikes or bike rides. I was kind to others online, even though I couldn’t meet people in person. I helped run a local community Facebook group during the pandemic – something I could do from my bed. Living my values like this made each day feel just a bit more meaningful even though I was ill.


📚 Read

When you are well enough to read, read! Or listen to Audible if reading is too cognitively challenging. There were several books I really appreciated during my recovery:


🫶 Boundaries

Find people who understand you and put boundaries down to protect your energy reserves. Delegate tasks where possible. Put yourself first as much as you can. I lost a good friend during my illness due to their lack of empathy, but I learnt who my friends really were and gained some lovely new ones too.


🥺 No self-gaslighting. This IS a physical illness. Your body needs to recover, physically, from a viral assault. It is NOT a psychological condition. It is NOT ‘in your mind’.  As with any illness, though, it is psychologically demanding and you may benefit from psychological support to manage it.


👎🏻 No to Graded Exercise Therapy (GET)

Graded Exercise Therapy (GET) was, unfortunately, the recommended treatment of choice for ME/CFS for many years. It has only recently been recognised that GET makes people more unwell. Some medics still recommend GET and it was suggested as a treatment for LC in the early days. DO NOT accept this as a treatment plan from anyone!! There will come a time when your body IS ready to start moving again, you will recognise it and you can do so gently and at your own pace. Exercise makes LC worse.


💊☘️ Mainstream and complementary medicines

Whilst I mostly attribute my recovery to the passing of time (my body’s natural recovery), pacing and resting, I also tried a wide range of mainstream and complementary medicines. There are a range of things that can be tried – if not via your NHS GP then via a specialist independent GP who can prescribe a range of medicines not available on the NHS. Some of the things I tried included Low Dose Naltrexone, statins, HRT, acupuncture, a wide range of supplements, minerals and vitamins, antivirals, blood thinners, hyperbaric oxygen therapy, deep tissue massage, yoga nidra, antihistamines, HRT and genetic analysis. I can’t be sure which of those things helped but I think a lot of them were helpful pieces in the puzzle.

So, now I am much better! I still can’t do what I call exercise i.e. go for a jog and I can’t do anything too strenuous with my arms. But I firmly believe I will fully recover and I am almost there. I hope this gives other LC sufferers hope that they can too!

 

Dr Kate Edgar is a Clinical Psychologist working in Private Practice in Gloucestershire, UK and online. www.edgarpsych.co.uk


Thanks for reading and many thanks to Kate for writing such an open, honest and personal account of her experience of Long Covid. We hope that her story and advice will be helpful for many.

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