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 osteoarthritis, 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
suggest 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,”
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.”
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
He met Diane and Bill, along 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 was 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
“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 will see each other over Christmas –
in a lull when Joy and Tony’s house is not thronging
with family, including with their two now-adult
children, a pug and a French bulldog.
Non-coincidentally both Aaron and Ashleigh have
careers in the caring industry having witnessed
first-hand the inevitable struggles, humour and
courage of their parents who live with permanent
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
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”