Lyme disease destroyed my life - it all started with a tick
In 2016, aged 31, I went on a solo trip travelling the world. I started in South America, followed by New Zealand, ending up in Asia and India.
It was an amazing experience, but I had no idea that I would contract Lyme disease and have my life changed beyond recognition.
It is because of my experience that I can empathise so whole-heartedly with Justin Timberlake, who has revealed his diagnosis.
I can't exactly remember when I was bitten by a tick but, that May when I was in Thailand, I had a circular rash over the back of my legs – it wasn't painful or itchy so I put it down to an allergic reaction and carried on.
But in India six months later, I fell ill with digestive issues and excruciating pains in my legs.
I couldn't stand, let alone walk, and I flew back to the UK. I didn't know what was happening to me – and being alone in a foreign country I was terrified.
Although I was due to start a new job back home, I felt too poorly to work and I spent several weeks in bed with flu-like symptoms.
I deteriorated, and spent the next few months in and out of hospital. I was kept in isolation for a while as medics initially thought I had contracted a tropical disease – after that it was a long road to being diagnosed with Lyme disease.
In March of 2017, I was initially diagnosed with Stage IV endometriosis, and I had several surgeries, including a hysterectomy. I thought my problems would be sorted.
That was a year of treatment, and by the following spring my pain had hugely improved, but I was still battling a host of debilitating symptoms, including seizures, shortness of breath, migraines, and insomnia.
Bites aren't always painful, so it's important to check your skin for ticks and bites after you've been outdoors
The distinctive red rash associated with Lyme disease is circular and forms a pattern not unlike a bullseye
Find out more
I couldn't leave my flat, and I struggled to walk between rooms – my mum stayed with me throughout this time to look after me. I began to suffer from anxiety, OCD, panic attacks and depression.
Between 2018 and 2020, I went back-and-forth to doctors, with none able to figure out what was wrong.
My experiences were put down to the fact I was recovering from the surgeries I had and mental health issues – with one GP even telling me my symptoms were from loneliness because I lived on my own.
But I knew something was seriously wrong.
I could see the stark contrast in me between pre- and post-travels and – when I kept fighting for a diagnosis, it was my nutritionist Laila, who had helped me through my endometriosis, that raised the possibility of Lyme disease.
She encouraged me to push for a different kind of diagnostic test; it eventually came back highly positive for Borrelia, the bacteria that causes Lyme disease, an infection caught from the bite of an infected tick.
That was in March 2020, shortly before the world shut down due to Covid.
I was shocked but it was also a relief to know I wasn't crazy and there was a cause to my symptoms. I had been right all along. I felt validated.
I can't even begin to express how powerful it was for someone to say they believed me.
Had I been diagnosed straight away or known about the risk of Lyme Disease it would have been treatable with a few weeks of antibiotics.
Instead, I've been housebound, largely bedbound, for nine years and use a wheelchair for appointments.
Lyme Disease when undiagnosed, or diagnosed as late as mine was, is notoriously difficult to treat, and can develop into Chronic Lyme Disease – also known as late stage Lyme Disease.
Nine years on from that bite, I've still not reached remission.
I have tried various treatments including oral antibiotics, five weeks of IV antibiotics, and have even tried alternative and herbal medicines.
Lyme Disease has caused so much loss for me. I lost my career when I stopped working in January 2017, mine and my mum's savings were spent on private treatments, and my independence.
I've lost most of my friends after being unable to see them, my social life, my self worth and confidence and my life as I knew it.
But something that has really helped me, as well as my family support and counsellor, is finding a focus, which is something I stumbled on accidentally – writing poetry.
I started writing one night when I was wide awake with insomnia and it was cathartic to see my thoughts just come out in a poem.
I was encouraged by my mum and my counsellor to enter a UK competition – winning first place!
Since then I have written countless poems – it's therapeutic to get thoughts out that I have difficulty expressing verbally.
But I want to stop anyone else suffering like I have.
I hope that more people become aware of what to do if they get bitten and know how to protect themselves from Lyme. More Trending
There are several things you need to know like what a tick looks like, the type of rash you may get, and how to remove a tick. The best place to go for advice on all of this is the Lyme Disease UK website.
Personally, while I have a long way to go, I hope one day I can reach remission like others that have been in my position and start to slowly rebuild the life that Lyme Disease has torn apart.
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This article was fist published on July 13, 2023.
Do you have a story you'd like to share? Get in touch by emailing jess.austin@metro.co.uk.
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