In 1999 I was bitten by ‘something’ while on holiday at Center Parcs near Thetford, Norfolk. Despite being a senior paediatric nurse I had no knowledge of Lyme disease.
Over the next few months I became progressively unwell resulting in me being unable to get out of bed, sleep, swallow or even talk at times. I saw so many Consultants I gave up counting. Nobody could help. A colleague mentioned that Thetford was a hot spot for ticks and Lyme disease – had I been bitten by anything while I was there she asked? I said I had. My GP did a test and it came back negative.
If only I had the knowledge then that I have now about testing.
I was eventually diagnosed with ME despite me not fitting the clinical criteria for ME and I spent the next seven years either bed or housebound. Fast forward to 2016… I read an article by John Caudwell about Lyme disease and it all fell into place. I was eventually diagnosed in 2017 while I was living in Abu Dhabi. The Doctors there were amazing and I was prescribed IV Ceftriaxone. It helped in some ways but after so many years, the infection is very deep rooted.
I joined the LDUK online community for support and shortly after saw that the admin team were looking for someone to take over the press and media aspect of LDUK and I thought to myself… I wouldn’t mind doing that!
Since then I’ve been instrumental with getting many LDUK member stories in local and national papers and magazines.
I’ve also worked hard with TV outlets to get Lyme disease featured on national TV and my proudest moments have been when these features have come to fruition. These include a very long feature on BBC Rip Off Britain and also very recently, a great feature on BBC Countryfile. Both features happened because some amazing members of the group volunteered to be filmed and interviewed and I applaud their courage.
When I became ill I was so incapacitated I thought I would never be useful again as the illness took everything from me: my career, the ability to be a wife and mother, my marriage and then my home.
Happily, I’ve now rebuilt my life despite the odds and I am very proud to be one of the team at LDUK. Everything I do is in the hope that by raising awareness in this way, I might save other people from experiencing the hell that Lyme disease can be if not diagnosed and treated promptly.