‘It cost me my job and had a big impact on my life’: Living with a debilitating disease and how a support group can help
- Credit: Archant
A support group which saw just three people at its inaugural meeting is celebrating two years of success and reaching out to new people.
Rheumatoid arthritis is an auto-immune disease which affects just 5pc of the population, mostly women, and is often misunderstood or confused with other conditions.
The Great Yarmouth and Waveney Rheumatoid Arthritis NRAS Group seeks to support sufferers and offer a sense of belonging and friendship that comes with being part of a group.
On a good day sufferers can lead normal lives, appearing to the outside world as if nothing is wrong.
But it's the tiredness that gets all of them.
And its not normal tiredness, it's a tiredness with knobs on explains Liz Chalk.
Not since being pregnant has she felt so achingly fatigued - and its something all members can relate to and talk about together.
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The group has been running successfully for two years, meeting monthly and providing a network of friends to call on for advice and fellowship.
Members describe it as a lifeline and are keen to reach out to more people who could benefit.
Lesley Webb, 62, from Lowestoft, was super fit enjoying a range of sports when she was struck down with RA aged 50.
But modern advances in medicine mean she can carry on with some of the activities she loves.
Between them, she said, they know a fair bit about RA; the pain, the tiredness, the drugs, flare ups and much more.
But one of the biggest frustrations is the confusion between osteo-arthritis and rheumatoid.
Although many people had both, the latter is an auto-immune disease where the body attacks the fluid in the joints.
Mrs Chalk said: 'Thirty years ago without exception we would have all been in a wheelchair. If people are more aware of the symptoms they can catch it early.'
The grandmother from Winterton was diagnosed in 2005 but had probably had the disease for longer having put off seeking treatment while her husband was battling cancer.
She suspects in her case the condition was caused by stress and shock.
Members meet on the second Tuesday of every month from 5.30pm to 7.30pm at the Louise Hamilton Centre in Gorleston and enjoy talks and days out.
A core of eight people regularly attend with numbers peaking at around 25 when a speaker is booked.
To find out more call Mrs Chalk on 07570 096894.
Four years ago Steven Moore was on the frontline of efforts to keep coastal communities safe.
Working along the erosion-scarred shores of Norfolk as part of the Environment Agency's field team it was physical work repairing defences and maintaining structures.
It meant sometimes being despatched to disaster zones across the country helping to prevent flooding or dealing with the aftermath.
But the 50-year-old started to experience a stiff finger and the sensation spread to his legs and hands robbing him of any strength.
Having rarely been ill and certainly never been in hospital Mr Moore said the diagnosis knocked him for six and initially he was off work for five months.
'I am only 50 and it cost me my job and had a big impact on my life,' he said.
'I worked from when I was 16 to last year so it's a big culture shock to lose your job and be told you cannot work again.'
Having retired at the end of June last year he spends most days at home alone while his partner Lynn Goreham is at work, but remains upbeat, and is considering volunteer work.
As the only male in the group he said he benefited from being a member, swapping experiences, sharing knowledge and enjoying the social side.
Symptoms of rheumatoid arthritis
The charity Arthritis Care says one of the most unpredictable things about rheumatoid arthritis is that symptoms can come and go.
Most people have times, known as flare-ups, when the inflammation suddenly becomes more active, and pain, swelling and stiffness get worse.
You may find it very hard to move, especially when you wake up. And you may also feel generally unwell and very fatigued. Flare-ups can be over in a couple of days, or stretch for a month or so.
At other times there is little inflammation.
These periods are known as remissions and can last for months or even years. There are ways of coping during a flare-up.
Increasing your painkillers or anti-inflammatory drugs may help.
Heat or cold can soothe a painful joint, and resting the joint in a neutral position – perhaps with a splint – will help minimise any damage.