John’s fibromyalgia story: “I’ve gone from champion jockey to championing carers’ rights”
The first time former North West area champion jockey John, now 57, heard about The Brain Charity was in 2010 when he was on a pain management course at the Walton Centre.
Dad-of-2 John was at this stage yet to be diagnosed with any neurological condition, but was suffering from aches and pains all over his body, brain fog, memory issues and fatigue.
At first, the Liverpudlian thought his symptoms were caused by years of sports injuries from a 17-year career as a jockey which had seen him break several bones, so he was stunned to be diagnosed with fibromyalgia in 2010 and osteoarthritis in 2013.
John said: “To be honest I didn’t really believe in fibromyalgia at first – I thought the doctor was just trying to fob me off.
“But my conditions have really affected my daily life.
“I would like to be doing a lot more sport with my kids, a lot more physical activities, particularly cycling, running with them in the park. The pain is too much to do any of that.”
John had decided to become a stay-at-home dad when his first daughter was born and was introduced to The Brain Charity when daughters Madison and Harper Lee, now 11 and 8, were old enough to go to school.
When he was looking to return to the workplace after 5 years off, The Brain Charity was expanding its Carers Advocacy service and he joined our staff workforce in 2015.
The Brain Charity is proud to say more than 50% of our staff and 60% of our volunteers have a neurological condition.
Due to John’s fibromyalgia, he struggles with his memory which can make making and keeping appointments challenging.
As part of the Access to Work scheme, John was able to get a personal assistant to help him organise his workload.
John now helps hundreds of carers each year get the support they need through applying for carers allowance and getting respite care.
He said: “It’s funny because in some ways the work I do now is similar to being a jockey.
“You talk to all sorts of people from quite different backgrounds – of course, working at The Brain Charity doesn’t involve many horses though.
“Now, I spend time helping people gain access to what will help them in their daily lives.
“It’s so rewarding – every day you go home knowing you’ve helped someone who really needed it.
“I get to take away that fear and anxiety a carer might have been feeling in that first meeting.
“It’s a pleasure to do that for people – having those successes all the time makes it worthwhile.
“And me having a personal assistant helping me, shows others that there is help out there and that there is no shame in asking for it.”
Published: 30 March 2021