Leslie Channon details her experience with ‘long COVID’ and why it has left her with an even greater appreciation of community and good housing
It all started on Friday 13 March 2020. I began writing this on another Friday 13, eight months later. It’s taken that long for me to be even near the right headspace to write about me and coronavirus.
First of all, a word or two about who I am. I am a single mother of two amazing boys, I am a passionate about all things housing, I’m a housing campaigner, a freelance consultant, a writer, and I love to sing. I am now also a #COVIDSurvivor.
Apart from mild asthma, prior to COVID-19, I had no other underlying health conditions.
I should also say up front that I did not have access to a coronavirus test in March. That’s the same as for many of my fellow #LongCovid survivors, who also caught the virus in March. The government guidelines at that time stated there was not to be testing in the community. My doctors are in no doubt that I have had COVID-19 and nor am I.
One of the things that really irritated me throughout all of this is when people have dismissively said: “Well you can’t be sure you’ve had it… because without a positive test, how can you know?” My answer is simple: I don’t know of anything else that includes the myriad of COVID and #LongCovid symptoms I have had, during a global pandemic of a virus known for those very symptoms.
With that said, and going back to that Friday 13 March, I had been watching the news and was hyperaware of everything being said about the spread of the virus. My cousins were over here in London, visiting from Atlanta, Georgia, and I desperately wanted to see them as I hadn’t seen them since a family wedding in Hawaii in 2008.
I remember being in two minds about actually venturing into London to meet them, so they drove out the day before to my home in the Cotswolds. We didn’t hug and kiss but did social-distanced jazz-hand waves – it was new and different for the boys as well as me. I have desperately missed hugs and cuddles. Those that know me, know that I am a big hugger.
Everyone was super vigilant about washing their hands and my boys kept their distance. The next morning, Friday 13, my cousins were getting ready to leave and I made the last-minute decision I would drive them back to London via Stonehenge and Avebury. We were armed with plenty of antibacterial gel, and cousin Kelly and I had face-coverings in the form of scarves. We were very vigilant.
The following week, on 17 March, I decided to withdraw the boys from school, as I could see the government was gearing up to close the schools. The boys and I spent the 17th and 18th planning how we were going to structure home-school and how we were going to design our days. However, we never got to live out that experience of lockdown. Unfortunately, things all turned out very different from what we had planned.
On 19 March, I experienced my first temperature. I woke up feeling warm and generally run down. I took my temperature using the digital thermometer I use for the boys and it was 38.5°C. Little did I know that I wouldn’t go below that temperature for the next six weeks. By the 23rd I knew that I was in trouble – I felt like I had been hit by a bus.
“As I was also starkly aware that if it was my time, there would be no family around my bedside to hold my hand and kiss me goodbye. That harsh reality haunted me”
I called my GP surgery and I cried tears of relief when I heard my own doctor’s voice on the phone. I told her, between sobs, I so desperately wanted to try to stay out of hospital for as long as I could – even though I was starkly aware that the hospitals were starting to fill up with COVID cases.
I wanted to be home with my children for as long as possible. As a single mother, this is where it got scary. The boys’ father is a keyworker so we couldn’t risk exposing him. So I was facing COVID-19 alone with my eight-year-old and 10-year-old sons, as it turned out for the next six weeks.
The boys knew I wasn’t feeling well and we made the family decision to forget home-school and instead they could watch movies and play games as long as they could help mummy by not fighting with each other and by taking care of themselves as much as they could.
By 26 March I developed a secondary chest infection and was prescribed antibiotics. My GP sent the prescription to the pharmacy and my neighbour kindly collected and dropped them outside my door with food supplies. I remember discussing with my doctor what I needed to look out for, specifically with my chest. I have asthma and have had pneumonia several times, as well as pleurisy. We discussed the ‘rattle’ and we came to an agreement that if I heard the ‘rattle’, that would be the time I needed call an ambulance.
My biggest fear was having to go to hospital, leaving in an ambulance and never coming home. Not being able to say goodbye to my children. I was so scared that my boys’ last memory of their mother would be seeing the back of an ambulance drive away into the darkness. The news we were getting at the time, were that people were dying in their hundreds alone in intensive care units (ICU) without family by their side.
I have lost both of my parents and cannot even begin to imagine them dying on their own. I remember having an all-night vigil on last night of my mother’s life. The hospital had called and told us it was time. I remember being in the hospital room with my sister and father. My father’s head bend low over her unresponsive body, silent tears falling from his eyes, him tenderly holding my mother’s right hand in both his hands, begging her not to leave him.
My sister and I helped our father that night to give our mother, his wife of over 41 years, permission to go if she had to. We promised her we would look after him and that he would be OK. There was a really basic-human heart-wrenching beauty in that experience I will never forget.
I also remember caring for my father when his cancer was terminal and advocating for him to stay out of the hospital and supporting him to be able to die at home in his bed. I knew many families were being robbed of this experience, that my sister and I were able to have.
As I was also starkly aware that if it was my time, there would be no family around my bedside to hold my hand and kiss me goodbye. That harsh reality haunted me.
I started following people on Twitter to check in with anyone going through the same thing – some were in hospital and watching their recoveries gave me hope. I also began chronicling my COVID-19 story on Twitter, many checked in with me daily, private messaging me words of encouragement. It was so encouraging and emotionally overwhelming that so many people cared.
I learned that my next-door neighbour’s mother, who had worked in a care home, was rushed to hospital and was quickly moved into the ICU and was put on a ventilator – she was on the ventilator for 56 days. That same week I heard that a good friend had died from coronavirus. Then in quick succession several friends’ parents or in-laws also died from the virus.
During this time both boys came down with fevers and had gastrointestinal complaints for about 10 days. They were very quiet and lethargic and their cheeks looked like angry beetroots. They crawled into bed with me, snuggled up and we watched a lot of movies.
I prayed. Hard. We rode it out. Somehow. Fortunately, they seemed to bounce back quite quickly.
The only way I knew that the boys were worried about me is that throughout this whole thing is that they did not once fight or squabble. They worked together to take care of each other and me. One morning, they researched pancake recipes on the internet and my youngest made me pancakes for breakfast. Their proud faces beaming with pride and love when they brought my breakfast tray up to me. I felt so loved.
My fever started to rise and I was at 39.9°C continually for five days straight. There were moments I was no longer lucid and I was floating in and out of being here and maintaining cognitive thought. I had a dear friend from Los Angeles, a doctor who called me every single day to check in.
I remember him reminding me I could still breathe and that even in my delirium I was still here – where there is breath there is life! We came to an agreement that I would call for an ambulance when my temperature tipped over 40°C. I forget how many times I was checking my temperature, praying it didn’t reach 40. I started saying my goodbyes to friends and making sure my will was in order.
At this time I was keeping a close eye on hospital admissions and my rising anxiety over the growing death rate. My main trepidation about waiting was if I waited too long there might not be a bed for me in the ICU if I needed it.
At times my windpipe felt like it was being constricted from the outside and it felt really narrow and I fought for every breath of air. I also had lots of red angry welts on my body, mainly on my legs. They were hot to touch and quite itchy. I was constantly aware of my laboured breathing. The back of my hands came out in itchy blisters that scabbed over and were painful. My hands looked like the hands of a 90 year old.
“As I closed my front door, a cascade of emotional tears began falling from my eyes. I openly wept with so much gratitude. In that moment, I felt cloaked in the love of my community”
My little chihuahua, Gizmo, never left my side. He would always curl up and snuggle in next to me, and stroking him would calm my soul. There were some nights when stroking him helped to keep me awake – I was too afraid to fall asleep, in case I didn’t wake up.
I was scared my children would come into my room in the morning and find my body. I didn’t want to put them through a trauma like that. I was too petrified to go to hospital and at the same time terrified to stay. Tears are rolling down my cheeks as I type this. That fear was so real. I was so afraid. The most afraid I have ever been in my life.
I was also very fortunate that my community stepped in to help. No one at that time could get online food deliveries, so a friend went shopping for us. The church also organised cooked meal drop-offs for weeks on end. I remember Easter being close and I had been so delirious with my fever I had forgotten about Easter eggs for the boys. One friend had thoughtfully included in our care package some Cadbury Creme Egg-sized chocolate eggs for an Easter egg hunt.
As I closed my front door, a cascade of emotional tears began falling from my eyes. I openly wept with so much gratitude. In that moment, I felt cloaked in the love of my community. Most of my life I have prided myself on being able to take care of myself and in this moment, I really wasn’t able to – coronavirus had brought me to my knees.
It was a profound life-changing moment. My emotional self was completely stripped bare and I felt so emotionally naked, and the love and support the boys and I received was incredible and overwhelming.
After weeks of COVID symptoms, the fever finally broke. But on 15 April, I became really dizzy. The room was spinning and I was spinning and I began violently vomiting. I couldn’t stop. The boys happened to be on the phone with their dad and I told them I needed him to come over right away. I was afraid of losing consciousness with the boys in the house without another adult.
By the time he arrived I was unresponsive and he called an ambulance. The paramedics had trouble reviving me, but they pinched my ear hard and I woke up. They took me to hospital and I was treated for severe dehydration, given a saline drip and sent home. Apart from my high blood pressure, all observations were normal.
The boys’ dad had to move in for two weeks to enable me to rest fully while he looked after the boys and me. This was also great for the boys to be reunited with their dad, who they are extremely close to. They hadn’t seen him for over a month. On 6 May, the boys, their father and I all had COVID-19 tests and they came back negative.
“It does stress me out when I have to battle through 50 non-mask-wearing, non-social-distancing tourists every day on the school run”
However, that last piece of good news was a false dawn. I woke up the morning of 14 May with the worst migraine headache on one side of my head, face and neck and stroke-high blood pressure at 180/100 (pre-Covid, my blood pressure was 110/60), I called the GP who sent us all to A&E to be checked out. All the tests came back normal apart from my post-viral high blood pressure.
I went in for further blood tests on 20 July and was also given a COVID-19 antibody test which showed I had zero anti-bodies. My GP said this doesn’t mean that I haven’t had coronavirus and it doesn’t mean I do not have some immunity to the virus. However, I seriously do not want to test the theory of the strength of my immunity.
I felt a rise in my anxiety since the negative antibody test and lockdown rules were relaxed over the summer. I live in a high-tourist area and over the summer I just avoided the high street. However, since September the boys returned to school. It does stress me out when I have to battle through 50 non-mask-wearing, non-social-distancing tourists every day on the school run. I have developed anxiety panic attacks and PTSD symptoms. This second lockdown enabled a bit of a breather for me and has been quite welcome on a selfish note.
The boys are happy to be back at school with their friends. It has done wonders for their mental health and well-being, especially after having to witness first-hand what their mother went through.
However, after the boys had been back to school for barely 10 dayes and three days after a rogue sneeze from one of my sons during bed-time stories, I came down with strep throat and scarlet fever. Since then I have been left with intermittent chest pain. All tests have ruled out cardiac issues and I have been prescribed a heavy-duty anti-inflammatory. The doctors conclude it is post-viral intercostal neuralgia, which I suspect is a nice way of saying that they don’t have a clue.
Six weeks post-COVID, I was barely able to walk to the end of my driveway. From what I was reading, I had to start rebuilding my lung capacity and reduce my post-COVID inflammation – I had also gained an unwelcomed stone of weight in six weeks.
It was a slow arduous journey to rebuild my lung function and physical capacity. The boys, Gizmo and I started to go for a daily walks. Walking helped me to focus on recovery. Our goal became for us to be able to walk to the ford in Shilton.
That was a seven-mile round-trip across fields and breathtakingly beautiful Cotswold countryside.
It seemed like an insurmountable task to ask of my body, but every day we prioritised walking. Some days we had to turn around earlier than expected; on those days, I became frustrated with the limitations of my long-COVID body. Other days my body surprised me, and we walked further than we’d planned. I refused to give up. I felt like Forrest Gump when he discovered running.
I remember the glorious feeling of accomplishment on the day we finally reached the ford. The sun was shining and the water was glistening in the sunlight. The boys had packed their swim shorts and towels and were excitedly getting changed as I triumphantly sat down to rest on the bench and take in the beautiful view.
That day was a monumental day in my recovery. It gave me hope. Monday 7 September was also a great day and a new milestone – I walked 21,885 steps, adding up to nearly 10 miles.
Long COVID is the term used to describe the long-term effects of coronavirus, which affect some intensely. My long-COVID symptoms included: shortness of breath, bizarre rashes, gastrointestinal symptoms, debilitating headaches, slowed cognitive function and extreme fatigue – the ‘not being able to get out of bed debilitating fatigue – as well as the new symptoms since my strep troat and scarlet fever.
Sometime in late October, my debilitating fatigue disappeared. It was as if a switch had been flipped overnight. I am still not out of the long-COVID woods yet, but It feels good to be finding my way back and the movement is in the right direction.
My #LongCovid Facebook support group has been a life saver and a place to vent all my worries with people who know exactly what I am going through. There is an affinity there that is akin to survivors of a great disaster – there is a shared struggle of experience, the trauma and PTSD.
“I think now of those less fortunate than myself. I think of those suffering on their own, lonely, maybe in unsuitable housing and unable to afford decent food and warmth”
However, today, as I finish writing this, I am thinking of my fellow long-COVID sufferers. There are many who now may have life-changing, maybe even irreparable damage. We all read the daily death numbers and the daily number of new infections. I wish my fellow sufferers well from the bottom of my heart and hope that these words may bring some hope to them.
We all need to understand that COVID-19 isn’t a matter of a coin toss between death or survival – there are hundreds of thousands of us worldwide who have struggled and continue to struggle with the after effects of coronavirus, and our lives may never be quite the same, at least not for some time.
I feel now, despite everything, that I am truly one of the lucky ones. I am finally on the mend, even if it is frustratingly slow. I had a wonderful community who stepped in. I had a safe, secure home. The boys and I had enough space. I also feel so grateful for our garden – the boys could go out and enjoy the sunshine and play. I remember venturing outside trembling in my dressing gown and laying down my COVID-weary body on a blanket, I breathed in the fresh Cotswold air and felt the delicious warm sunshine on my face. When I regained my strength, I loved being able to enjoy my beautiful flowers.
I think now of those less fortunate than myself. I think of those suffering on their own, lonely, maybe in unsuitable housing and unable to afford decent food and warmth. I think of those with worse symptoms than those I endured.
We know now that COVID-19 is in many ways a disease of poverty and poor housing that is disproportionately affecting – among others – people from ethnic minorities backgrounds living in the inner cities.
I can’t say that I was lucky as I have after all experienced first-hand the damage COVID-19 can do, but there are others unluckier by far. While we have all been weathering the same coronavirus storm, the boats we have been in, and the journeys we have taken, have been vastly different.
Leslie Channon, housing and tenant engagement specialist