Joy doesn’t think of herself as a carer. It’s not really a label she recognises. She is a wife. And a mum, daughter, sister, friend. The family are very close but this Christmas she and her husband Tony have booked a Christmas lunch on their own at a hotel. No cooking, no washing up, no stress. As long as Tony is well enough to go. As long as the chronic pain he endures from osteo-arthritis, necessitating daily doses of morphine, is under some sort of control.
It was 22 years ago that Tony was sent home from work as foreman of a painter/decorator business with a condition the first doctor diagnosed as an over-active thyroid. It didn’t seem likely somehow. The pain was in his back. For 18 months he had been suffering from a steadily mounting discomfort. An MRI scan eventually suggested a problem with his spine. He was sent to different medical experts for a solution, including a physiotherapist who suggested a regular set of exercises.
“Everything was so painful to do I just used to come out in tears. They put me through the MRI again and the fracture was worse. Eventually they discovered I was full of osteoarthritis.”
Tony was never able to work again. He was 40. “I just deteriorated year by year.”
Joy had already given up her job as a chef to look after their children. Their son Aaron was three and their daughter Ashleigh just three weeks old when Tony was first diagnosed. It was a full-on, financially-stretched juggling act from then on. And there were the emotional minefields to navigate too. “Tony used to get frustrated and upset when the children were small,” said Joy. “Little things like he couldn’t stand and watch Aaron play football. You can’t take a wheelchair on grass.”
They has to sell their house – it had stairs – and it was hard finding a suitable alternative. They were in rental accommodation in 2006 when a near-catastrophic series of events pitched them into further trouble. “Tony got pneumonia in the June, fell and broke his wrist in September and two days before Christmas he had a heart attack. Then we had a gas leak. We were turfed out of the house with nowhere to go. It was snowing. Luckily a lady in the same street took us in for the night.”
They did what they always do. “We managed,” said Joy.
In fact, Joy had a history of managing. She was 16 when her father, along with her uncle and cousin, were killed in a freak sea accident at Camber Sands during a day out at the beach. The eldest of four siblings, Joy assumed a position of responsibility and the family, already close, became closer. “You don’t ever get over it. You get used to it. I still have bad days but it’s probably what made me strong.” She managed.
Part of that managing has lately taken the form of walking, as she and, eventually (after some “nagging”), Tony take regular part in “The Stepping Out” project, a mini-break for carers and those they care for to enjoy a sociable, scenic stroll in picturesque areas of Kent in the company of those who understand the day-to-day stresses of their life. At first Tony, given the toll his condition has taken on his desire to leave the house, was reluctant to join his wife on the walks. But as the August walk along the coast at Deal coincided with their Wedding Anniversary and transport for his wheelchair could be provided, he risked it.
He met Diane and Bill, along with many others. He and Bill, a Mensa member and former lecturer who has Parkinson’s Disease, discussed intricacies of wheelchairs. Tony was offered a quick test drive on Bill’s scooter. They lunched together. They and their wives now regularly socialise in Sittingbourne where, unbeknown to them for many years, they live just five minutes apart.
They have a deep understanding that binds them. Every day is different, dictated by a fluctuating condition. Tony has to take 18 tablets a day, including anti-depressants. Joy, too, has found a need to medicate against the daily stresses which now includes her own physical diagnosis.
“I thought I as as fit as a flea. But six or seven years ago I was feeling tired all the time with these dull aching fatigue plains. I’d gone to the doctor originally about my hearing problems and while they were checking me out they said, ‘You’ve got Multiple Sclerosis, but go away and forget about it for now’.
“It’s incurable, there’s nothing they can do about it, so I try to ignore it.” Almost her sole concession, apart from necessary medication, is to walk with a stick.
“We’re a team. We have to be,” said Tony. “We keep each other going. We look after each other.”
“I like him to do things with me,” Joy explained. “But he doesn’t always want to or feel up to it. At least on the walks we can do that. Get out somewhere different and just relax. The best thing ever this summer was meeting Diane and Bill. We’ve become really good friends.”
They are among those who very much hope that the Stepping Out project, to whom Kent Ramblers and the local Carer Support organisations give their invaluable support, continues in 2018. Sport England, who fund the project, is evaluating its performance this year and will announce its future soon.
After the Deal walk, Joy wrote a note:
“Thank you. We had such a lovely time. Tony really enjoyed it and was pleased that I made him come. We could not have wished for a better way of spending our anniversary. We were surrounded by friends. New ones many of them as Tony only knew Lesley, Maureen and Ron before coming that day. But he hasn’t stopped saying how lovely it was and how he enjoyed talking to others on the walk especially Bill and how lovely everyone was and the food was excellent .He is looking forward to coming again I just wish he had come before as he enjoyed it so much. Thank you again and look forward to seeing you soon xx”