For some people in their 30s, dreams are ambitious. They can be filled with thoughts of big houses, luxury holidays, better schools for their kids and reaching that next rung on the career ladder.
But 38-year-old Julia Kelly’s ultimate wish is poignantly simple. Sitting with me at her home in Great Doddington, she admitted: “I would love to have just one day where I could wake up not being in pain and not having to take painkillers. For the average person, to have an hour without pain would be taken for granted. Now I really want to reach people, those people who are most in need.”
Together with her father, David Kelly, Julia is the co-founder of the charity, A Way With Pain, which aims to help the huge number of people dealing with chronic pain conditions on a day-to-day basis.
Reading this, most people will no doubt have some idea what pain is like. But, according to Julia, chronic pain is classified as the type of physical agony which is ongoing for more than three months. And for some people there is no end in sight.
For Julia, dealing with severe pain has been a part of her life since she was involved in a car crash in 2005. She recalled: “Straight away my back started hurting. By 2010 there was no stopping the pain and it went down my right leg. Now it has been 10 years of living with pain on a day-to-day basis.
“It is tiring. Before this I would drive all over the country. I would pack a bag on a Friday night and go. Now I can just about manage to go to Northampton. I haven’t been out of the county since 2010. It stops you in your tracks, in working and relationships.
“In my situation, it was a very complex case which resulted in me having to leave work. All the time I was going through this everyone was great, but I wasn’t in touch with anyone similar.
“Every time I went to hospital, I thought ‘they will make me better’. I saw the pain consultant and that was the end of the road. You know you are going to be left as you are and you are in pain. You have had that medical support, then there is a hole and your life is turned upside down and you have no one to talk to. I thought ‘we have got to put something out there’. I don’t want anyone to go through what I have gone through. It is just about knowing you are not on your own and the feelings you have are normal.”
Julia’s own turning point was in taking a course which helped her deal with the psychological impact. She said: “There is still a stigma to do with anything mental health related. But to be able to sit down with someone completely independent, it is breaking down those barriers. It is fine to have these feelings, it is normal. For me, it was a real turning point. I had been in the depths of despair and thought ‘I can’t live my life with this’.
“You actually go through the bereavement process; not losing a person but you have lost the old you. Your morals and everything are the same, but that girl who used to jump in her car or who was the wildest on the dance floor, that has all changed. You have to get your head around that and be realistic about your expectations.
“In my head I was going to get better, then when it didn’t happen, it was like ‘oh God, now what happens?’ Some people don’t get to that mind-set, through no fault of their own, so many people fall through the net. We are there to be that safety net.”
David added: “Chronic pain exists and it affects one in seven of the population, but there is a lack of understanding as it can’t be seen. It has financial implications; implications on you being able to go out and socialise. We want people to know there is a lifeline, there is something there.”
A major problem with chronic pain, according to the Kellys, is that it cannot be seen from the outside. Although Julia still undergoes surgery and copes daily with medication, from the outside, her ordeal would not be apparent.
She ruefully recounts an encounter she had with a cashier in a supermarket, in which the person behind the desk joked about how he wouldn’t be helping her pack her shopping as she was young and fit.
Improving understanding is a key goal of A Way With Pain. The charity runs a website (www.awaywithpain.co.uk) which gives chronic pain sufferers a chance to share their stories. The aim is also to provide more education for GPs and medical professionals as well as the wider general public on exactly how widespread and serious it can be dealing with pain on a daily basis.
Julia’s work has included holding an awareness day for doctors on how to help patients dealing with chronic pain last year.
David said: “We are trying to make the invisible visible. What we are trying to do is not to knock the systems, but to engage and make people aware of the help.”
Julia said: “We would love to work alongside the NHS. What happens is you go to your GP, but after that the person has nowhere to go. We want to back the NHS, we want to back them up so we can provide something for that hole in which people fall. Not everyone with chronic pain will be referred to a specialist.
“Our first line of support would be through our website. It is an important place where people can go to share stories. People would say ‘I have got that, that is me’. What I would really like to see are support groups in the county.”
A Way With Pain, which achieved charity status one year ago, is also part-funding mindfulness courses to help people manage chronic pain and it is aiming to set up a hardship fund too, to help those affected by chronic pain.
Julia said: “Often these people [with chronic pain] are so low. I got so low I wanted to end it all.
“In my previous job I was a young carer worker so I had a clear understanding into illnesses and charity work.
“One person said, ‘until it happens to you, you have no idea about what is involved’. It stops your life in its tracks and that is it. Pain management is probably the most under-funded area of the NHS and yet this is something that doesn’t go away. People do get suicidal.”
llA Way With Pain will be holding a horse racing evening at The Malt Shovel Tavern, in Bridge Street, Northampton on March 27 from 7pm. The evening, aimed at raising funds, will include a raffle with prizes, including a signed, framed Bruce Reihana Saints shirt.
llThere will also be a charity golf day held at Overstone Park on July 15. For more information, ring David or Julia on 07984 595117.
llA Way With Pain’s ambassador is Saints and England rugby star, Tom Wood.