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Long Covid. A personal account.


It is a year today since I became very ill with Covid. This current photograph of me reflects how I feel. Happy to still be alive, enjoying a short break from working and a cup of tea. However, I feel as if I have aged massively, inside and out, a faded, worn out image of what I once was.


This time last year, paramedics arrived at my house telling me that I had Covid, and that the protocol was that I would not be admitted into hospital. I would need to be going blue and unconscious to be admitted regardless of whether I couldn't breathe. So I was provided with paracetamol by my lovely neighbour and friends who kept leaving them on the doorstep for me as I had not been able to get any due to other people stock piling them. I lied in bed,feeling as if I had a very large rock pushing down on my chest, just hoping and believing that I would recover. At the lowest point I felt as if I was in and out of consciousness and had lost the fight to breathe. To even take a breath was just too much effort. I said goodbye, and decided I would rather die in my own bed. But something took over...An innate need to live? To keep going? A part of me - an inner me, a higher self, something somewhere else (it really isn't important to identify it), gave me a talking to. An inner voice, reassuring me that it wasn't my time, that I would get better, but it would take a long time. This inner voice also told me that I still had a lot of work to do and that some of it would be related to this experience. I've had many profound experiences in my life like this, often in connection with loss, death, health, or other people's health, loss or death experience which has informed the direction of my career. Like many psychotherapists work, life imitates art. We are often wounded healers. We have often been through a lot.


Throughout last year I have been in and out of hospital having one test after another. I was admitted into hospital, last June because I was suspected to have blood clots in my lungs. On arrival, I was told by a nurse that I wasn't clean and needed to be moved to a covid ward. (I had washed! - she meant that having had Covid 8 weeks earlier meant that I was dirty.) These uncomfortable words stayed with me for a while, along with the horrendous noises from other patients that I heard on the ward, and the ward itself which seemed like something from a dystopian film. I couldn't wait to get out when they told me that my lungs were clear of blood clots. The whole experience made me feel like a leper and not knowing anyone else who had Covid at the time was very alienating.


The frustrations of Long Covid are something that only people with chronic illness can identify with. Even then, research exists around many diseases whereas Long Covid is new. Doctors may be able to tell you what you might be able to expect with other conditions, may be able to prescribe medication to alleviate symptoms and there may be support generally available. Most Doctors don't really know what to say or do with Long Covid, and the support being made available in this area is generally about symptom management rather than medical intervention. Notwithstanding the fact that Long Covid throws up many new unwelcome surprises down the road often when you think that you may be on an upward trajectory. Other organ systems go haywire and it does not seem to matter how symptomatic the person was when they first contracted the virus initially.


I'm the kind of person that searches for answers. I deep dive and I dig deep, I need to understand, I need to unravel things and get to the core which is one of the reasons that I became a psychotherapist.


When I contracted Covid, I had been working for a couple of years as a student doctor in a hospital out patient setting, ironically providing psycho therapeutic support for patients who had post viral fatigue, ME/CFS, Fibromyalgia and other chronic neurological and somatic conditions. These conditions are very real to me as I have experienced some of them myself. My first experience happened when I was 17. I had just started at Art College, contracted Glandular Fever and then struggled with post viral fatigue, ME/CFS for a year where I could not get out of bed. I recovered and carried on with life. Many years later it happened again in my 30's when got sepsis after an operation. This time it took around 3 years for me to get better and to get a diagnosis of Fibromyalgia. I wasn't bedridden but I experienced pain in different parts of my body, coming with no explanation. Sometimes I couldn't walk very well, and sometimes I couldn't use the kettle to make a drink as I couldn't grip the handle and it was too heavy to lift. I had loads of tests but there was no causal factor. I was lucky to be referred to a Physical Health Psychology department were I learnt about what might be happening in the body (there are two main hypothesise), how viruses affect certain autonomic and neurological systems in the body, but more importantly how I could help myself from a mind/body link perspective. It was no accident that I went back to same department to help people cope with the psychological effects of these types of conditions years later.


The National Institute for Health Research (NIHR) has pulled data from over 300 separate studies suggesting that Long Covid consists of four possible syndromes and that "Long Covid appears to be more frequent in women and in young people (including children) than might have been expected." Lung, and heart problems, blood clots, inflammation and multi system organ damage affects people in different ways. There is no clear pattern as yet and Doctors do not know how to support people who may be ill for months or even years with this condition. Current estimates are that up to a million people may have Long Covid and 80% of this population now cannot work. The NIHR also states that this health burden is "unlikely to be met by existing NHS services."


Reflecting on my personal and professional experience of ME/CFS, Fibromyalgia, Functional Neurological conditions spectrum, I can say that there are similarities with presentation of one of the syndromes of Long Covid, (fatigue, unexplained pain, somatic seizures, autonomic issues such as POTS, temperature control, histamine intolerance and sensitivities.) There are also obvious similarities with the frustrations of being dismissed or not being believed by either the medical profession (particularly for those of us who became ill before testing was available), or by friends or family who are either in denial or choose to ignore the data that is being presented for some unknown reason.


I am still having medical interventions and I have days where I don't feel great, but I try to take each day at a time and see what that experience brings. Difficult experiences bring wounds but also growth and knowledge about the self and others. Mindfulness and meditation help me enormously. I feel amazingly lucky that I have been able to work apart from early on and carry on doing the thing that I love doing. I have the most incredible clients that have hung on and waited for me when I had to have time off last year, and the support of my supervisors on my doctorate course. I also have a Covid Buddy - @longcovidandme who knows and understands what it is like for me as she has had a similar shared experience.


To others who are going through it, I'd recommend that you talk someone, anyone who gets it. The mental health strain of Long Covid can be huge. Anxiety, depression and PTSD are all co-morbid conditions that sadly go hand in hand with the physical symptoms for some people. There are quite a few support groups on slack and facebook and one that I would personally recommend is Covid-19 UK and Ireland Sufferer and Survivor Support set up by the wonderful Karen Rawden, another therapist who has a done a fantastic job of making the group a very nurturing and positive place for people to share their experience and get great support and free resources.


For those of you wanting to talk to someone in private, about YOUR OWN experience of any of the above, I'm here, to listen, and provide a safe space for you to feel validated and heard. I can also provide psycho educational information on:


The activity cycle/post exertion fatigue/exercise intolerance

Pacing/grading

Setting goals

Sleep hygiene

Diet/intolerance and sensitivities/histamine/mast cell activation

Understanding and managing stress

Brainfog/Memory/Concentration

Coping with pain

Relaxation

Mindfulness

Mindset/thinking styles

Emotions

Coping with Depression/Anxiety/PTSD

Relapse/Setback Management


Remember - You do not need to feel alienated or isolated.











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