Two years ago, I was a fit, healthy and independent 30-year-old.
Now, I rely on my mum to help me shower – among other things – which is a dramatic lifestyle shift.
It has felt like a huge step back in my life and there’s been a massive shift in our relationship. My mum has become my carer and it’s been hard to accept that I have to ask for help from those around me.
At first, I felt very low but I have worked hard mentally to remind myself that becoming chronically ill wasn’t my fault.
My Covid symptoms first struck in March 2020, but never did I expect that I’d still be living with the long-term consequences of the virus.
I initially thought I just had a cold that was flaring up my asthma. As it was the early days of the pandemic, I wasn’t able to find out otherwise – but an antibodies test later showed that I’d definitely had Covid.
Before I knew it, I came down with a whole host of symptoms, from a hacking cough and shallow breathing to all-over body aches.
I could barely drag myself out of bed for almost seven weeks – by then, antibiotics bisoprolol we were fairly sure it was the virus. It was extremely worrying and at one point, when my breath became shallow, 111 advised my mum to take me to hospital.
However, we decided against it – a relative of ours had recently died in hospital and wasn’t allowed to have any loved ones around them. At this time, there was a sense that people went into hospital alone and never came out again, and that was terrifying.
After seven weeks, my breathing was less shallow but I was still incredibly fatigued after any exertion, which made getting back to everyday life quite hard. Then, more health setbacks kept rolling in.
In May 2020, I was rushed to A&E for surgery after my appendix began to rupture. I felt frustrated that I had managed to stay out of the hospital with Covid, only to be admitted for something else.
Then, a week after I was discharged, the surgery wound burst due to infection.
I had daily morning visits to the hospital to have the wound cleaned and a dressing change, then a trip every other day after six weeks.
The wound took 11 long weeks to heal and close. It was both mentally and physically exhausting, as it was such a slow healing process. I couldn’t work and I felt like I was really running out of steam.
By summer, life started to feel more normal again and I began a slow return to work as a self-employed BSL interpreter, after a long period away due to illness. I had hoped I was out of the woods, but something was niggling at me that just didn’t feel quite right.
Before the pandemic, I was travelling around London every day for work. Now, the commuting was really taking it out of me. I felt constantly short of breath and I was struggling to keep the mental focus needed to do my job properly.
After so much time off sick, I was brimming with anxiety about picking up another virus and the London crowds that I was once used to now felt overstimulating and scary.
The term ‘long Covid’ wasn’t really in circulation at this time, and I hoped this was a bit of a hangover from the Covid and the wound infection and that I’d perk up.
But I never did. Things really started to go downhill for me in October 2020, when I was struck down by a hacking cough and began to feel constantly breathless and achy.
I’d sleep for 10 hours yet wake up feeling like I hadn’t slept in days.
I went to see my asthma nurse, who ordered some respiratory tests. She also brought up long Covid to me in late November, just as the term was starting to circulate more widely.
I started searching online to see if other people were still struggling after Covid. To my surprise lots of people were, but they didn’t have any support.
It wasn’t until a doctor from my surgery returned to work after suffering from the virus herself that long Covid was then discussed as a diagnosis.
In the new year, I was finally referred to a long Covid clinic. Around this same time, I was hit with shingles, a condition associated with a weakened immune system.
As I sat down one morning struggling to put my socks on, I felt totally overwhelmed and knew at this point, I couldn’t muddle on with my normal routine anymore. I had to make a change.
One of the hardest decisions was to move back home with my mum. I’d lived in North West London with my friend for two years, but because of my sick leave and reduced work hours, I was struggling to pay the rent.
A combination of the total exhaustion and shortness of breath made it harder for me to move around unaided, and given my flat was up three flights of stairs, it just didn’t feel like an appropriate or safe space for me anymore.
My mobility is still so affected that I lean on furniture to get me around the house. After an occupational therapy visit, I was given my own walking stick in May 2021 after months of using my nannie’s, and more recently, I use an electric wheelchair when outside.
In some ways, moving home at 32 years old felt like I was admitting defeat, but my mum’s been my rock. She helps me wash and dry my hair and cooks for me, as standing over a hot hob breaks me out into a sweat and makes me dizzy.
I appreciate the time we spend together more now than ever as it’s much more difficult for me to leave the house and go out with friends and family.
I have managed a few social events – brunches and walks, things like that – but I’m still a long way away from the busy Londoner who ran my own business and went solo-travelling in Asia that I once was. I feel like I’m grieving my old self.
There are definitely days I feel really down and anxious. My focus now is on staying upbeat and getting the help that I need to get my life back on track.
I just wish there were better treatment options for people in my situation and pathways that were easier to navigate and understand. I know it’s really tough for the NHS at the moment, but I haven’t felt well supported – for months my symptoms were blamed on my asthma.
In early 2021, I had to chase down my referral into an assessment centre, also called a long Covid clinic, which is no mean feat when you’re feeling so unwell.
After what felt like an eternity on a waiting list, I got into a clinic months later in July and was told there that I have tachycardia – a fast heartbeat – a common symptom that people were experiencing after Covid, amongst other things.
It was explained to me that my body feels like it’s running all the time, which take its toll and wears me out. Obviously, it’s upsetting being told you have a problem with your heart, but equally, it felt validating to finally have some understanding of why I’ve been feeling so poorly.
I’d hoped after the diagnosis and more tests that I’d be treated and be on the road to recovery, but that hasn’t been the case. I’ve been really disheartened by the lack of treatments available and I feel like I’m having to navigate this new and unpredictable condition largely by myself.
I know I’m not alone in feeling this way.
Research from the British Lung Foundation shows that many people experience barriers when trying to access care, especially for those who managed their Covid-19 at home and not in hospital, like me.
Although services, such as long Covid clinics, have been developed in some places, wait times are getting worse and there’s not enough research being done into how best to treat this new condition.
There’s a long road ahead of me and one of the best things I did during all this was starting my Instagram account, which has helped me build a personal support network and share tips and knowledge with other people in the same boat.
A friend, Harriet Fay, reached out to explain her symptoms and how she was coping, it just felt so validating to hear someone else was going through the same journey that I was, to speak to someone that really understood.
It’s not been easy, but there’s nothing worse than suffering in silence.
Over a million people in the UK are living with long Covid. I’d urge anyone who thinks they might have it to reach out to their peers and make use of the advice on the British Lung Foundation website, which includes information and support about symptoms of long Covid, particularly around breathlessness.
I hope now that I have a diagnosis I will have a treatment plan whereby I will learn to live with the conditions and hopefully fully recover.
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