It’s day 279 of my Covid journey.
I have found reading other Long Covid stories comforting, so I wanted to write my own in the hope someone finds it on a day when they really need to feel like they aren’t going through this alone.
I am ‘young, fit and healthy with no pre-existing health condition’, but now I have Long Covid. I was training to run the London Marathon, and went from doing 13 mile runs to bedridden. I go in and out of bad waves every few weeks. Sometimes I get lots of symptoms, other times it’s just a few — fatigue is a staple. My symptoms include: fatigue, body ache, viral arthritis, tinnitus, brain fog, heart palpitations, chest pains, breathlessness, anxiety and depression, vertigo, body chills, loss/altered sense of taste/smell, hypersensitivity to sound/light, aura migraines and urticaria. In bad waves, I can’t walk more than 1000 steps a week.
I know that my story is a lucky one. I wasn’t hospitalised, I have no dependants and I have a flexible work-set-up with super supportive business partners/friends and an amazing boyfriend who has looked after me.
I caught Coronavirus on Friday 13th March 👻. My boyfriend, Luke, and I flew to Mexico via LA, not anticipating that the world would shut down in a few days time. I was burnt out from work and had been counting down the seconds to get on that plane and switch off on a beach for a couple of weeks.
On our first day in Sayulita, lying around the pool in 30 degree heat, I felt weirdly cold and I was covered in goosebumps — the exact same way my body reacted to Zika virus in Mexico in 2017. Luke started to feel unwell too. By the end of the day we were so weak we struggled to walk.
We didn’t think it was Covid as we didn’t have the two NHS listed symptoms (persistent cough and temperature), but I was still racked with guilt that I might be spreading it. Borders were closing everywhere and our ESTA’s for our flights home via LA had been cancelled. We spent a week in bed isolating in our hotel room, barely able to move, trying and failing to get a flight, before finally paying £4000 to fly back. Cue a 2 hour flight to Mexico City, an 8 hour wait in the abandoned airport and an 11 hour flight home to the ghost-town of London, all on Luke’s 32nd birthday 🎉 .
Our symptoms got worse when we got back. I was breathless; it felt like someone was sitting on my chest; the fatigue was so bad I could barely get out of bed (I stopped drinking enough water because getting up and down the stairs to the toilet was too much); I had a crippling non-stop headache; and I lost all sense of taste and smell. And it began to feel like we might have Covid.
I don’t remember much of April and May, it was just a sea of sickness. June was better, but I’d have a few good days and think it was over, and it would reappear worse. This cocktail of symptoms has continued in a never-ending cycle, and has had a debilitating impact on both my physical and mental health.
The terms ‘Long Covid’ and ‘Post Covid’ started appearing in headlines, and it was nice to put a name to what I have. I learnt about Post Exertion Malaise which is brought on by physical, cognitive and emotional exertion. If I do too much, 24–48hrs later I am bedridden for days. I am now learning how to pace myself to avoid this (the one upside of lockdown!).
Long Covid has strong links to ME/CFS so I researched those and one of the most useful things I have read about is the Spoon theory, used by people with autoimmune and chronic illnesses. Aside from the symptoms, one of the worst things about having an invisible illness is that people don’t understand how sick you are, and this theory helps to explain it to others.
Spoon theory = healthy people have an unlimited amount of spoonfuls of energy. People with fatigue have a small, set amount of spoons they can use per day, and once they’re gone they’re gone. And if you slept badly or didn’t eat enough the day before, you start your day with even less spoons. The key is to pace yourself.
Here are some of the things I have tried that have helped (acutely aware of the privilege I have to be able to afford some of these):
Dismissive and condescending but I did get an official diagnosis of Long Covid. I wasn’t told ‘it’s all in your head’ or ‘you’ve got depression’ like many others were. I was referred to the Long Covid clinic at St Barts hospital 12weeks ago, just found out my referral was cancelled because I didn’t send back a questionnaire I didn’t ever receive 🤦♀ .
Got a kitten
Makes everything better.
Advised not to exercise, so I started doing Qi-gong with Mark Shayler. He isn’t a teacher, he is just a bloke doing it in his garden on Instagram Live at 8am most days. The ‘Qi-gang’ is a great community. Days when I do this are much better than the days when I don’t. It’s magic.
The body aches are unbearable at times, massages bring some relief.
The brain fog was so bad that I couldn’t think / work / function, I found social situations / phone calls uncomfortable because I couldn’t keep up with the conversation. I’d lost my mind, and my confidence. I have had 4 acupuncture sessions with the wonderful Maudie, and the brain fog has lifted and I feel lighter than I have in months.
I read a book called Do Breathe a couple of years ago and still do daily breathing exercises from it. It’s easy to let fear take over with this unknown illness, and breath work brings you back to the present.
It’s not for everyone: Illumination, power retrieval and soul retrieval. Get in touch if you want to hear more. Since the healing my worst waves of symptoms are less intense than before.
I had a consultation with the wonderful Lola Ross, and some tests. On a 3 month plan of supplements (focus on boosting immune system and energy levels: include antioxidant boost, Symprove, B-Complex, magnesium flakes, vitamin C and D) and a tailored food plan. I don’t drink as much alcohol, and I always carry some nuts around with me to make sure my blood sugar levels don’t drop.
Really recommend Kelly who does distance Reiki (from South Africa!), so you can lie in your own bed. So calming.
YogiTea Breathe Easy Tea (for those days when you feel you can’t quite get enough air in your lungs), Bristol CBD oil, Your Super immunity shot drinks, Biocol Labs Immunity shots, Bachs Rescue Remedy (for anxiety), Floradix (for energy).
Some days I feel fine and happy, other days I can’t get up the stairs without being breathless. I’ve gone through periods where it feels like I am grieving for the life and energy I used to have (also a symptom of the pandemic), and others where I am filled with fear at what is happening to my body. It’s a rollercoaster of emotions on a daily basis.
I am learning how to pace myself. I nap a lot. If I store up some energy, or some spoons, I can see a friend or be able to work. I’ve started doing new hobbies so I don’t lose my mind lying in bed everyday like drawing, pickling and propagating house plants.
People measure the severity of Covid-19 with deaths, and I so wish they would look at the wider impact. The current prediction is that 500,000 people in the UK have Long Covid. They are from the first wave, so surely the numbers are going to be closer to 2 million people after the second and third waves.
I understand the reasons for some people not being able to wear a mask, but if you can, please do. Trust me, you do not want this.