Donna

Long Covid and Me By Donna Shaw

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 recognized 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, diarrhea, 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.

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 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.

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 completed my Diploma and was

awarded with a Distinction. I have since started my own business, New Vision Coaching,

where I offer mentoring for anyone suffering from long covid symptoms and I also offer

coaching for anxiety, stress and confidence. I have also set up a free facebook group for

support and advice in recovery from long covid.

https://https://www.facebook.com/groups/883366922955957//

Three 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, and then

setting up my own successful coaching and mentoring business. I am extremely 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.

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