My partner Toby Wylde is cycling Ride London 100 mile challenge on 29th May 2022 for Tourettes Action. The 100 mile distance is the longest challenge ride in the RideLondon programme. Participants set off from Victoria Embankment in central London and into Essex via the historic Epping Forest, finishing at Tower Bridge in London.

Tourettes Action is a support and research charity working to improve the lives of people living with Tourette Syndrome. Their services include online live-chat and email support, a befriender network, information, webinars, events and resources. Tourette's Action are also currently campaigning for everyone to be able to receive a timely diagnosis and support where ever they live in the UK. 

Toby and I have been together for 9 years and he has been with me throughout my Tourette's journey and diagnosis. Tourette Syndrome is a neurological condition, the key features of which are tics, involuntary and uncontrollable sounds and movements. Tourette's is a complex condition and covers a wide spectrum of symptoms. My Tourette's has had many different presentations and I experience multiple and ever changing vocal and motor tics. Some vocal tics stay around for a while, such as my current "don't tell him" and "can't believe it's not butter" tics, and other tics are one-offs! The vocal tics are a part of Tourette's that, on the large part, I can embrace. However, I also experience tic attacks, which are bouts of severe, continuous and disabling tics.  These tic attacks can feel relentless at times and have a negative impact on my mental health.  

I have had to learn to live and work with Tourette's throughout it's ever changing presentations. I work for the council as a Care Manager, a job that at times can be stressful and demanding. My tics and tic attacks can be exasperated by stress so it can be a total balancing act and hard to manage at times but I am very fortunate to have a very supportive manager and colleagues. An increase in painful motor tics and tic attacks has resulted in me having to have periods off work.

It can be a surprise to people when I tell them I have Tourette's. My Tourette's presentation, like the majority of people with Tourette's, isn't like the Tourette's portrayed in the media, where someone is constantly swearing, for instance. Only 10% of people with Tourette's have coprolalia, and although I am one of them, swearing/ offensive tics are only a small part of my Tourette's presentation. My tics wax and wane and I am also able to suppress my tics for short periods of time, for instance when I'm in external work meetings or on home visits. Suppressing can be exhausting and distracting and will often result in an explosion in tics later in the day. My tics also tend to get louder once I feel comfortable and free to tic around someone - so Toby is very often the witness of these tic explosions! 

One perk of lockdown was Tourettes Action support groups moving online. After having never attended a physical Tourettes Action support group and a lot of the Facebook groups I was on mainly being parents of children with Tourette's,  it was amazing to be able to access an Adults Support Group from the comfort of my sofa. Being able to talk to be people with Tourette's over zoom every week and be able to share our experiences living with Tourette Syndrome was incredibly refreshing. A lovely community and very valued friendships developed and I no longer feel alone with my diagnosis. 

Tourettes Action organised a residential weekend for adults with Tourette's, at Moor Hall in Cookham. This was an opportunity for a lot of the people on the online support groups to meet in-person for the first time, cement friendships and make new ones. It was refreshing and liberating to be in an environment where you could freely tic and be surrounded by people who just get it! 

Toby has seen how positive and important the support of Tourettes Action and their online groups and residential trips have been for me. From these groups I have developed strong friendships and no longer feel alone with my diagnosis.  Having seen first hand the support that Tourettes Action have provided me Toby has decided to cycle 100 miles for this amazing charity! Toby is training hard, cycling miles and miles and miles in the gym and Peak District, in preparation to cycle Ride London 100 mile challenge on May 29th 2022. Any donations would be very much appreciated!! 

Thanks for taking the time to visit my JustGiving page. Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.