An Erewash health support group hope their fundraising efforts will click into gear this summer, and further expand their life-changing services.
Fibro Active Long Eaton and Ilkeston has been chosen as the official charity of the Wilne 10K road race on Sunday, September 3.
The organisation supports more than 200 people across the borough who are living with fibromyalgia and chronic fatigue syndrome.
The group’s founder, Julie Barker, 46, said: “It’s a big job, and could do with a paid member of staff. We’re hoping Wilne will give us a kick start to cover basic running costs so we can focus on finding more substantial support.
“We’ll be doing a tombola, raffle and cake bake, if anyone wants to get inovlved that would be brilliant.”
She added: “We’ve done our own fundraising events in the past, but the team all live with these conditions, and the work can make us more sick.”
Chronic fatigue syndrome, also known as ME, and fibromyalgia are long-term illnesses, which often overlap.
Neither condition is well understood by medical professions, and there is no commonly identifiable cure or cause - though they often follow trauma, long periods of stress, or a major virus.
Symptoms can include muscle or joint pain, extreme tiredness, migraines and cognitive dysfunction.
Julie said: “I’ve had it since I was about 14, when my concentration went and my school grades dropped dramatically - but it was only diagnosed properly in 2013.”
In between, she led a stop-start career punctuated by long periods of being unable to work, although Julie did manage to gain a degree and qualify as a sports coach.
The led her into a volunteering role with the Wilne 10K, which she says has helped to keep her on track.
It was the death of Julie’s father which led into her most debilitating period of illness, and the eventual diagnosis.
She said: “An estimated one in 20 people may have it, but when I started the group I didn’t know anyone else who did - so I’m a bit surprised by how big it’s grown and how quickly.”
Julie’s dad was the one person she had known to experience it previously.
She said: “I saw him go through 30 years of hell being unable to move and taking lots of ineffective medication.
“Now I’m trying to help anyone avoid going through a similar experience if I can.”
She added: “I was in a very dark place, but starting the group has given me purpose. I want members to see what is possible, and not to give up.”
From everything that Julie has been through, she says the best response is for people to learn and accept their limitations, and manage their lives within that framework.
The activity programme includes tai chi, park walks, arts and crafts, and workshops delivered by partner organisations on topics such as living with long term illness, self-care, nutrition and mental wellbeing.
Fibro Active takes a holistic approach which helps people to remain positive, live healthy lifestyles, get gentle exercise and meet others who can relate to their experience.
Julie said: “One of the most common things I hear is that it is good to talk to like-minded, local people without having to explain everything.
“It can be a very isolating situation as you can’t keep up with peers, lose friends and slowly become housebound - but we’ve developed a wonderful camaraderie.”
The initiative is supported by Erewash Borough Council, Derbyshire County Council and Wellbeing Erewash, with group sessions running at Erewash CVS in Long Eaton and Weleda in Ilkeston every Tuesday from 11am to 1pm.
For those who cannot attend sessions, support is offered via a Facebook group.
To contact Julie or make a donation to the group, see http://bit.ly/2tX6TVK.