On 21 and 22 of August I will be trying to cycle 480km from Newcastle to London in 24 hours to raise money for the Ehlers-Danlos Support UK.

Ehlers-Danlos Syndrome (EDS) can lead to complete physical disability and some rarer types can be life limiting but for the majority of sufferers it manifests itself in many ways from “stretchy skin” to constant and chronic joint pain, auto-dislocation, fainting fits, digestive problems, chronic fatigue, insomnia and combinations of these symptoms.

My daughter Kelly is a 21 year old second year University student and she was diagnosed with EDS in 2011 after many years of missed diagnosis. Read more about her in my first blog post

Today, I would like to give an update about how fundraising and training are going.

n_Simon and Kelly Hughes

There are now about six weeks to go until I will cycle the 480km from Newcastle to London and since the start of training for the event nine weeks ago I have ridden 3700 km and climbed 16000 meters in elevation including my longest ride yet, a 265km effort that took 12 hours. A few kilograms in weight have been lost as well which is no bad thing. In the last month, my daughter Kelly has had physiotherapy, a consultation with an occupational therapist as well as consultations with orthopaedic and gastroenterology specialists so my part has been easy in comparison!

Training for a single ride of 480km is a unique experience for me as I have not attempted this distance before. I am working on the principle that to develop “riding legs” I need to do high mileage on successive days over the weekend with a few short recovery rides in the week. So a long ride of 180 to 230km on Saturday is followed by a usually quite painful 80 to 160km on Sunday. Rides during the week tend to be shorter at 40 to 50km but at a slightly faster pace.

One weekend soon I shall include a night ride into the regime just so that I can familiarise myself with riding in the dark.

In the next two weeks, Kelly with have an abdominal MRI scan, an endoscopy and further physiotherapy so she will also be kept busy.

Fundraising has also gone extremely well with 95% of my target reached which only spurs me on to raise much more than I originally thought possible. Anyone wishing to sponsor me on the charity fundraising ride can do so via the Just Giving site.