Finding Bristol chilly? spare a thought for those who have to wear gloves indoors

Anyone who didn't know Margaret Goff might assume she is about to go out when she opens the door of her modern detached home wearing a pair of gloves.

In fact, if she had been planning to go out in the current chilly weather, she would have been wearing another pair of gloves on top of those she wears in the house.

And she would also have put on two thermal layers, plus tights and thermal socks.

Margaret, 54, has Raynaud's disease, a condition in which exposure to the cold or any slight change in temperature can result in blood being prevented from reaching the extremities of the body, mainly the fingers and toes.

"These are special gloves with silver in them, which helps regulate the skin temperature and also helps manage bacterial infections," she says.

"When it was very cold and there was snow earlier this year, I couldn't go out much. When I did go out, I was heavily wrapped up in triple layers – but the cold still gets through, and then there's a danger that my hands will shut down."

When that happens, blood stops flowing to Margaret's fingers – and it is extremely painful when it starts to flow again.

"When my hands shut down, they go completely white and I can't do anything. Then when the circulation starts up again, they go purple," says Margaret, who has about 20 pairs of gloves for activities ranging from feeding birds in her garden to getting food out of supermarket freezers.

"The most painful bit is when the blood starts flowing back. It feels as if somebody has been standing on my fingers."

Even worse than the pain of Raynaud's, however, is the damage that is caused by a related condition called scleroderma, which Margaret also suffers from. "Not everyone with Raynaud's gets scleroderma, but if you have scleroderma you will almost certainly also have Raynaud's," explains Margaret, who lives in Chipping Sodbury, South Gloucestershire.

"It's quite a rare auto-immune disease of the connective tissue. The name comes from two Greek words meaning hard skin, but it affect many different parts of the body as well as the skin.

"I woke up one morning with ulcers on my eyes, and it turned out this had happened because my tear ducts had hardened and stopped functioning, so now I have to put drops in my eyes regularly.

"If you've only got Raynaud's and your circulation shuts down, then the biggest problem is the pain when it comes back.

"With scleroderma, a shut down can cause lasting damage because scar tissue is formed, so I have to try hard to avoid getting into a situation where my system shuts down."

Margaret takes off her gloves to show how her hands have been damaged over the years. They are swollen with hardened skin.

"I used to have nice, slim fingers," she says. "Now they're misshapen and I sometimes have three or four fingers in plasters where I've lost skin. It's a bit like having frostbite without going into the Arctic.

"I've had to have my wedding rings made several sizes larger, and I can't make a fist any more.

"It's hard for me to sew anything because of the difficulty in getting my fingers to hold a needle."

Margaret – who is married to John, a school business manager, and has two sons aged 25 and 22 – was diagnosed with Raynaud's when she was in her mid-thirties.

"Fortunately the boys were past the baby stage when I was diagnosed," she says.

"My husband is amazing about it. He's very supportive and understanding, and jokes with me about it in a nice way.

"I've probably had it since I was a child. I always had very cold hands and I used to get chilblains on my feet.

"I finally got diagnosed by a consultant at Frenchay, who told me about the Raynaud's and Scleroderma Association.

"I got in touch with them and they were fantastic. They sent me an information pack, which I read and thought, 'Right, this is what I've got, and other people have got it too', and I started to work out ways of dealing with it.

"It's not always easy, as like any long-term illness there's a lot of fatigue with it.

"But you basically have two choices when you've got a condition like this: you can either sit at home and moan about it, or you can try to go on living your life."

Margaret has done her best to get on with her life, and is involved with a number of local organisations, including Chipping Sodbury Baptist Church, where she is a volunteer at the church luncheon club.

Margaret also organises a support group for members of the Raynaud's and Scleroderma Association in the Bristol and Bath area.

"There are about 18 of us, and we meet up twice a year at the Mineral Hospital, although some members are too ill to travel," says Margaret, who receives treatment from the hospital, which is also known as the Bath Royal National Hospital for Rheumatic Diseases.

"I also have a lunch here at my house once a year for everyone."

The only time when Margaret does not have to wear gloves is on hot summer days, and even then she usually has gloves and a wrap with her just in case the temperature drops.

Does she ever feel like emigrating to a hot country?

"I wouldn't want to move away and leave family and friends, and I'm getting excellent treatment at the Mineral Hospital.

"The thing that works best for me is going to the gym to keep my circulation up – although at this time of year I'm wearing tights under my trousers and a roll-neck jumper, so I'm a bit different to all the young girls in strappy T-shirts."

● For further information, go to www.raynauds.org.uk or contact the Raynaud's and Scleroderma Association on freephone: 0800 917 2494 (UK inquiries only), or email: info@raynauds.org.uk.