Long Covid and Me

I first noticed a scratchy throat on 3rd April 2020, just after we had started our first lock down in the UK. I was on a dog walk with my family and I breathed in to talk and experienced a strange sensation in my throat which produced a dry cough. After an afternoon of incessant dry coughing, I recognised this as one of the main symptoms of Covid-19, the new virus circulating the world and dominating the news.

To be perfectly honest, I wasn’t really that worried about catching Covid-19 as we were hearing on the news that fit and healthy people under 50 were only suffering a mild illness and were usually recovered within 10 days. At age 47, I considered myself extremely fit and enjoyed running and attending the gym regularly, so assumed I didn’t fall into the ‘at risk’ category.

However, 3 days later I was lying in bed feeling extremely unwell with a myriad of symptoms including fever, abdominal cramping, diarrhoea, as well as struggling to breathe. After calling 111, I was advised to go to hospital to be checked for pneumonia. After a tearful car journey, my husband dropped me off at the hospital entrance and I was ushered inside to a RED zone for Covid patients. Family members were banned from joining you inside the hospital to limit infection rate so I was unwell, scared, unable to breathe and wondering if I would see my family again. Despite, feeling so poorly, a chest x-ray showed no signs of pneumonia and blood tests came back clear, so I was advised to go home and hopefully I would start to feel better after a few days.

A few days came and went and my symptoms were showing no signs of abating, if anything they were intensifying. I was still struggling to breathe and by this time I had neurological symptoms such as severe dizziness and nausea, as well as the gastrointestinal symptoms, relentless fever and constant pins and needles in my extremities. I was so exhausted, I remember lying in bed and struggling to even lift my arm to raise a glass of water to my lips to ease the extreme thirst I was also experiencing. I couldn’t move my head at all as the dizziness and nausea was so severe. A new symptom had also reared its ugly head – a sensation of being strangled, and I was terrified that my throat was going to close up!

A second hospital visit thankfully produced another clear x-ray and clear blood tests and I was given a shot of anti-sickness drugs for the nausea and dizziness and was sent home. I was confused to have clear tests but to be feeling so unwell. By this time, I was struggling to walk and only able to lay in bed on my front, with my head at a certain angle to enable my airways in my throat to be as open as possible for breathing. I also started to notice that my heart rate was all over the place and in the middle of the night I would wake up gasping for breath where I had just stopped breathing. I was terrified of dying in the night and had a pact with my husband that if he woke up and I wasn’t breathing, to just bundle me in the car and drop me off at the hospital as soon as possible. Each day, I hoped to wake feeling better, however, the symptoms persevered.

I was hearing awful stories on the news about Covid death rates and we were still in a full lockdown, unable to see family members and advised to stay at home at all times. It was an extremely distressing time and I felt so utterly hopeless and confused as to why I had been affected like this, when I was so healthy previously.

After a couple of weeks, some symptoms had eased off but I was still left with multiple symptoms including what became known as the ‘Covid Strangle’, severe fatigue, heart issues, breathing issues, dry cough and dizziness if I stood for more than a few minutes. I was also becoming breathless if I talked to anyone and had to often lie down mid conversation as I would get lightheaded using any oxygen or energy. I was forced to limit calls with friends and ration any speaking and all activity. The ‘Covid Strangle’ was unbearable and actually felt like someone was continually strangling me. The sensation of not being able to breathe in properly filled me with constant anxiety. My doctor had no idea what was going on and I was desperate for someone to look down my throat with a camera to see what was wrong.

Unfortunately, all Ear Nose and Throat (ENT) Consultants had ceased performing routine aerosol procedures due to the threat of spreading Covid virus particles and these procedures were understandably only being carried out in Intensive Care Units for extremely unwell patients. So, I was given antibiotics for ‘Strep throat’ as my doctor was justifiably confused about the symptom of feeling strangled and assumed it was a throat infection.

Eventually, in desperation, I managed to contact a private ENT consultant who had operated on my son a few years prior and she agreed to offer me a nasendoscopy. After the procedure, I was diagnosed with lymphoid hyperplasia (inflammation of the lymphoid tissue) down my upper respiratory tract and also an inflamed larynx and vocal chords. This finally explained the strangulation sensation and why I was finding it difficult to have conversations with people and struggling to use my voice. I was advised that the inflammation would heal with time and to limit certain foods to try to reduce any acid causing further inflammation. My breathing issues were put down to the inflammation and I was diagnosed with asthma and given inhalers. I was just so relieved to finally have a reason for my symptoms and with this information, returned home and worked on my recovery.

After 6 months, although still struggling with fatigue and brain fog, I felt well enough to attempt a return to work. At that particular time the advice was to push through and try to return to a normal routine. However, after each attempt I would suffer a return of symptoms and be bedridden for a couple of days. This was soon recognised as Post Exertional Malaise which is the worsening of symptoms following even minor physical or mental exertion. The symptoms typically worsen 12 to 48 hours after activity and can last for days or sometimes weeks. I had no idea what was happening to me and subsequently pushed through until eventually I suffered an almighty ‘crash’. I became bedridden with severe exhaustion and feeling extremely unwell with relentless nausea, painful muscle aches and gastrointestinal issues. I was then diagnosed as having Chronic Fatigue Syndrome.

I found myself completely housebound, unable to walk and suffering crippling anxiety and depression. The lowest point came when my husband pushed me in a wheelchair on a dog walk, just to get me outside in the fresh air. I was unable to carry out any activity and was barely able to dress myself. Showering was a huge accomplishment and I can recall that once after showering, I was too exhausted and weak to even lift a hairdryer to dry my hair and my husband had to take over for me and quickly learn the art of a blow dry.

I was desperately searching answers from specialists who were stumped and unable to help with the symptoms of such a novel virus. I consequently had to give up the job I loved after 18 months of sick leave and vowed to research into remedies, cures and alternative medicine.

By this time there were various groups popping up on Facebook, all filled with people suffering the same symptoms as me and not knowing what was wrong with them. We shared our stories and became each other’s support systems. This became a lifeline for me as I knew I wasn’t suffering alone. Together, we supported each other on our long and arduous journeys towards recovery.

The post viral symptoms, together with the chronic fatigue symptoms, became grouped together and known as Long Covid. Through excessive reading and my own obsession with recovery, I learned about MCAS (Mast Cell Activation Syndrome), pacing, nutrition, the autonomic nervous system and basically anything that would shed light on the symptoms I was suffering from. I became my own advocate for recovery and an expert in the field of Long Covid. It soon became clear that although Covid-19 was first thought to be a respiratory infection, it was actually a multi systemic disease, affecting lungs, heart, vascular system, brain and other organs. This made total sense to me and explained all the various symptoms I had suffered – 52 in total!

I refused to give in to chronic illness and was adamant that I would be cured and back to full health and would search every avenue until this happened. I attended various clinics for Long Covid and Chronic Fatigue, sought specialist help regarding nutrition and gut health and spoke to people who had recovered from chronic fatigue and suffered other post viral illnesses. I watched You Tube videos from other Chronic Fatigue and Long Covid sufferers and joined Yoga groups online which were especially set up for people suffering from Long Covid. After watching a video on You Tube by Raelan Agle, who has recovered from chronic fatigue herself, I created a vision board with everything on there that I could only dream of ever achieving again. Two of the items on that board were paddle boarding and renewing my vows with my husband for our 25th wedding anniversary. Although I couldn’t even stand for long periods at this time, these events gave me a focus and I was adamant that one day I would be well enough to accomplish these goals! I found a specialist Fatigue Coach called Pamela Rose, who had also recovered from chronic fatigue, and with her guidance and support I was able to come to terms with the fatigue and learn pacing strategies to manage my limited energy levels. I was so grateful to also have extremely supportive family and friends and I eventually starting to feel like I had turned a corner and was thankfully on the mend.

Paddleboarding, May 2022

Chronic Fatigue Syndrome, also known as ME/Myalgic Encephalomyelitis, is a chronic, disabling and life changing condition that has affected many people prior to Covid-19. Hopefully, Long Covid has raised awareness of how this illness can be complex and debilitating for sufferers and it has been highlighted that research must be carried out to understand the complexities surrounding the illness. Many people have suffered from this illness for numerous years and there are varying degrees of severity of the fatigue, and I am aware that some people suffering ME/Chronic Fatigue and Long Covid cannot simply get better by pacing and calming the autonomic nervous system. There can be multiple issues at play and each journey is completely personal to that individual. There are also other factors that could significantly impact on Long Covid recovery, for example Covid-19 reinfection or having underlying health conditions. However, for me, these techniques, as well as altering my mindset using neuroplasticity, and other changes to my diet and lifestyle, seemed to be the missing pieces of the puzzle.

Renewing vows with my husband in the Lake District for our 25th Wedding Anniversary, July 2022

With my newfound knowledge and deep interest of Long Covid and how it was affecting different people, I became passionate about helping others with these debilitating symptoms. I volunteered to become part of a ‘Buddy Scheme’ on Facebook, where I am matched to other Long Covid Sufferers and offer encouragement and friendship to support them in their recovery. I have met the most amazing, strong individuals, all struggling to make sense of their new way of living. After my symptoms started to improve, I enrolled onto a course to train as a Life Coach. Eventually, after a year of training, I have just completed my Diploma and been awarded with a Distinction. Two years ago, I would never have been able to hold a conversation, let alone partake in a 12 month course, conversing with the most inspirational and incredible people. I am grateful for the path that I am now on.

Covid-19 may have taken me away from the job I loved and robbed me of two precious years, but it has also gifted me a new lease of life with a whole new outlook and perspective on my health, my future and my purpose. I am more grateful for time spent with family and friends and feel that if I can help just one Long Covid sufferer to ease their symptoms and provide them with a supportive space where they are believed and heard, then it has all been worth it.

Please see below some details of people and organisations that have helped me in my recovery:

Pamela Rose - Fatigue Coach www.pamelarose.co.uk

Raelan Agle - ME/CFS Community Builder www.raelanagle.com

Soph AB - ME Warrior www.instagram.com/sophs_ab

Sarah Piscina - Nutritionist www.NuU-naturally.co.uk

Suzy Bolt - Health and Wellness www.360mindbodysoul.co.uk www.facebook.com/360mindbodysoul www.facebook.com/yogaandmeditationforgentlecovidrecoverywithsuzybolt

The Optimum Health Clinic, London www.theoptimumhealthclinic.com

Epsom and St Helier University Hospitals Chronic Fatigue Clinic, Surrey

Frimley Park Hospital Long Covid Clinic, Surrey