Early in 2020, COVID-19 was widely believed to be a respiratory condition that had serious implications for the elderly or people with underlying health conditions, and that young and healthy people would experience it as a mild form of flu. Fast forward to October 2020, with recent data suggesting that 24% of all new COVID-19 cases are likely to result in months of sickness, the phenomena of ‘Long COVID’ is now well documented.
But for early pioneers of the illness like me who are still battling the illness, what is it like to actually experience Long COVID? How do we cope not knowing if or when we will make a full recovery? What methods are we using to help soothe our symptoms?
In this blog I tell my own story and hear from three other Long Haul COVID fighters to find out more.
Suzy Bolt, 48, Yoga teacher, coach and business owner, Brighton
I began my COVID journey on March 26th. My symptoms began as icy chills, food poisoning-like symptoms, fever, headaches, nausea and insomnia. I had tachycardia, irregular heart beats and painful lungs. I developed a stammer, noise sensitivity and a full body tremor. My hair started to fall out and my skin was so dry I felt like I aged around 10 years in 3 months. It was a real roller coaster.
I took care of my skin right from the start using supplements like collagen and intense moisture creams for my face and body. I’ve coped by making sure I had a purpose. I had already reinvented my business during Lockdown to offer yoga, HIT workouts, pilates and mindfulness online. I set up a Facebook group for long COVID sufferers and posted free yoga and strength rebuilding classes to aid recovery. I wanted to offer something positive to long haul COVID fighters from someone who understood. The classes have been viewed over 4,000 times. Practicing and teaching very gentle yoga, meditation and breathwork on the days when I could is the main thing that has helped my body heal from the trauma of the damage done by the virus.
I am nearly 7 months now and starting to feel like my recovery is around 80%. Throughout this ordeal I never lost sight of myself, in fact I feel changed for the better by the whole thing.
Matt Bromley, 40, teacher, Manchester
Until March 30th 2020 I led a very active life, cycling my children to nursery, swimming regularly, sailing competitively and living an outdoor lifestyle. During Easter weekend my illness peaked, but I wasn’t admitted to hospital. I was so short of breath that I couldn’t keep up with my 4 year old daughter. By the end of that day I was collapsed in a chair unable to function.
My recovery has been nonlinear and, seven months on, I remain housebound. Every aspect of life has changed beyond recognition. I have chest pains and heart palpitations, shortage of breath, crushing headaches, brain fog and dizziness brought on by tiny levels of physical or cognitive exertion. After strolling 100 metres, I need to rest. I've been sent to A&E three times for medical checks. Each time they've come back normal but I’ve been told residual inflammation in the lungs and heart could be causing the issues.
I have to advocate for myself, which is exhausting and a full time job in itself. Online support groups have been a lifeline and the best way to share tips and stay positive. I've kept a blog to make sense of what's happened. I’m following a low histamine diet and taking vitamin D and C supplements. Meditation and very gentle yoga are playing a key part in my recovery. It’s essentially an old fashioned convalescence.
Mentally and physically, Long COVID is by far the hardest thing I've had to face, but it has been an opportunity to re-evaluate what's important in life.
Sophie Wilson, PR & Marketing Agency Owner, Liverpool
I felt worn out and exhausted before Lockdown and had a distinctive headache. I didn’t have a cough, or a fever, but on Easter Monday I realised that I had lost my sense of taste and smell. At first it was like any normal case of flu, then things got frightening. I had to ring 999 when I woke up in the night unable to breathe. At that point I thought I was going to die alone, but like many long haulers, I wasn’t taken to hospital because I didn’t require immediate ventilation. The paramedics left me alone, with a friend calling me every hour to check I was still breathing.
When I hadn’t recovered after two months I had to take the decision to leave my home in Brighton to be cared for by my family up north. The physical act of moving made me hit the ground and I didn’t really get up again for three months. Since April I have been struggling with symptoms, including hair loss, muscle aches, chest pains, memory loss, gastrointestinal and neurological symptoms. I have had several admissions to A&E for a suspected heart attack. I now have sinus tachycardia and ectopic beats, two heart conditions I didn’t have prior to contracting COVID.
Despite all of this, I am able to look at the experience philosophically. I've got a new found appreciation of my body and developed compassion for those with chronic illnesses. I’ve slowed down, been reunited with friends and family and even met a wonderful new partner who sees me and not my illness. I’ve dug deep into my spirituality and used tools like meditation to get me through. I have a whole new ‘family’ of other Long COVID sufferers and, together, we have shared information and supported one another through the many low points. I’ve used my voice in the media to campaign for awareness and support.
On the low days I wonder when or if I will ever make a full recovery. I miss the life I had before but I get through every day with the support of others and gratitude that I’m still here. I’m still alive.
Ian Anscombe, Occupational therapist, Glasgow
I developed fatigue, a temperature and a cough in March, eventually recognising this as Covid. Since then, the condition has been rather like Forrest Gump’s ‘box of chocolates’ – I never know what is coming next. Some examples are chest pain and restricted breathing, muscular inflammation and pain; heart arrhythmia, drowsiness and dizziness. The impact of all this on my immune system has also affected my skin, resulting in dermatitis and a blotchy face.
Staying positive can be challenging: consulting a herbalist, and trying to reduce inflammation ‘triggers’ in my diet seems to be having an impact. Getting outside over summer and a couple of visits to the beach helped. I’d like to try swimming again. I hope getting back in the water will ease physical symptoms.
My friends have got me through this, online and in real life, and I try to hold the belief that an active life after Long Covid is possible.
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Thanks to the tireless campaigning of sufferers who have told their stories and advocated for themselves while fighting this condition, Long COVID is finally being taken seriously. The government has recently released this video warning of the dangers of Long COVID and the NHS has announced that it will be investing £10m into running designated Long COVID clinics in every area across England.
If you, or someone you know is suffering, there are various support groups online including the Long COVID Support Group and the Positive Path of Wellness.
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Sophie is a storyteller, writer, broadcaster and media expert who founded PR and Marketing agency Tuesday Media. Sophie is a Long Haul COVID sufferer and has been documenting her journey whilst campaigning for recognition and support for other sufferers
