Prior to 2016 I was fit, healthy, very active and worked long hours in a career I loved. I did charity events including running the London Marathon and cycling from London to Paris.
In 2016, I had an amazing year away travelling – I climbed Machu Picchu, swam in the MeKong Delta, rode a motorbike the length of Laos and slept in the Cambodian jungle. I fell ill in India and got myself checked out at a clinic in Delhi. I was given some medication and returned home.
I was in an extremely exciting phase of my life – I had a new job, a new flat and was looking forward to a fresh start, after going through a divorce the year before. I started to feel more and more unwell and got infection after infection – toe, ear, throat, and came down with what I thought was bad flu.
I was bedridden for 2 weeks in December 2016. Little did I know this would be the start of my life completely changing – my body crashed, and I began to get issues with every part of my body. It felt like a game, or whack-a-mole, with new symptoms continuously popping up for me to juggle. I spent a few years in and out of hospital having every test under the sun and lost count of the number of doctors I saw. My friends even joked they would rename one of the tests a ‘Vix-oscopy’ due to the number of oscopy tests I’d had.
During this time I was dismissed, belittled and patronised by doctors and specialists who thought they knew my body better than I did. I mean, I’ve lived in it for 38 years so you’d think they would listen to me and the symptoms I was experiencing.
Because I was also diagnosed with stage 4 endometriosis, adenomyosis and a growth on my pituitary gland, my Lyme symptoms were thought to be related to these conditions. Also due to the cyclical nature of my symptoms and the gynaecological issues, I had often been told it was my hormones.
My symptoms were also put down to anxiety, loneliness, acclimatisation (!!!) and laziness.
It’s hard to put into words what it felt like to be feeling so incredibly unwell, with most people disbelieving you, and not getting any help. I felt very alone and misunderstood, and also let down by the medical system. I was someone who rarely took a sick day; now I was unable to get out of bed to go work, or to function.
Symptom-wise, I experienced a huge range of things, too many to list. But Lyme has severely affected my nervous system, my brain, my digestive system, my circulation, my endocrine system. It felt like my body was shutting down bit by bit and that my brain had been hijacked by something.
I finally got my Lyme disease diagnosis in March 2020, the week before the world shut down for Covid, 4 years after I became unwell. I also remembered having a rash on the back of my legs in May 2016, but assumed it was ringworm and thought nothing of it.
One thing that I’ve struggled to get my head around is that once you have a diagnosis of chronic Lyme, it’s not just a case of a few months of pills to get better. It’s almost another journey in itself.
To date I have tried many different treatments and I am in the process of trying to decide what’s next for me. I have taken a 7-month break from treatment, as my endometriosis returned, and I started ending up in hospital again. It is a difficult decision financially and logistically.
I am working with my counsellor who is an amazing support to try and keep hold of the hope and motivation, which over the past 6 months I have lost.
I may not have any treatments to share that have worked for me, but I wanted to share something that has helped me, which is finding a focus.
I think when living with Lyme it is important to find something to focus on, and for me that needed to be something I could do from bed. The things I used to do to keep my mind busy I could no longer do so I needed to find a replacement.
I have learnt to knit and done my fair share of adult colouring books, but I have also discovered writing.
Writing has become a real outlet for me, especially poetry. It is something I accidentally stumbled upon and that I enjoy doing. It helps keep my mind busy when it goes to a dark place and helps pass the time on the long, drawn-out days.
It is my 40th birthday next June (2024), so I am using that as an aim to be in remission for. We all know how unpredictable Lyme can be, but I figured that might be a realistic goal for me.
Ending with a mini poem as I think many of us with chronic illnesses tend to compare our lives to others……
My timeline is not the same as yours and that is okay,
It doesn’t mean it won’t happen for me……
Just not today.
