Several people had had the disease from childhood and said that living with rheumatoid arthritis can sometimes present challenges with regard to going to school, studying, taking exams and so forth. One experience that they often referred to was that at times they could not play with other children and had spent weeks in hospital. One woman, diagnosed when she was nine, said that even though she had had a home tutor, her studies had been seriously affected. Another womans illness as a teenager had affected her psychologically as well as physically. A 25 years old woman said that seeing a psychology in her teens helped her understand her situation and work through her problems.
The RA got worse when she was a teenager. It affected her psychologically as well as physically…
She felt depressed for much of secondary school but has now learnt to focus on a series of goals…
People also described how the effects of RA on their adult lives and how they coped with it. Cooking was often difficult because kettles and pans were too heavy, taps hard to turn, shelves too high or too low, and jars impossible to open.
People adapted their kitchens in many ways to make life easier. For example, a woman of 52 said that she had bought lightweight china, a microwave and special gadgets such as jar and bottle openers. Another said that it helped to lower the work surface. She had placed ordinary stools around the place so that she could perch while cooking.
She adapted her kitchen to make life easier.
Some people had bought special utensils with padded handles, such as Good Grips. Others stored their food and equipment in cupboards at a suitable level so that they didnt have to bend too low or stretch up high. One woman raised her washing machine off the ground to make it easier to use.
Many found housework such as vacuuming difficult, and had to ask for help from family members or social services (see Sources of support).
Ironing was also difficult. One woman did it in short bursts, while another wore splints to support her wrists while she ironed, vacuumed and used the telephone. (See Occupational therapy.)
People adapted their houses in other ways. Some put up extra stair rails, or added ramps to doorways, or altered baths, showers and lavatory seats to make them safer and easier to use. One man had a stair lift installed. He also got help from the council to build a shower and a downstairs lavatory. The need to make adaptations is gradual and one partner said this made it easier to cope with the required changes.
Adapting the base of the shower and having taps that were easy to turn helped.
The council and social services installed a stair lift and downstairs toilet.
House adaptations have been made gradually so his wife is able to cope.
Some people moved from a house into a bungalow so that they didnt have to cope with stairs, making life much easier.
Many bought higher beds so that they could get in and out of them more easily. One woman recommended a pocket sprung mattress and a sheep skin for better sleeping.
For some people we interviewed dressing and personal care can be a problem. One woman had had to change her entire wardrobe. Many people recommended light, loose clothes that fastened at the front, perhaps with Velcro, and elastic waistbands. One woman said her dressing stick with a wire hook on the end was invaluable. Others used gadgets such as long-handled hair brushes.
When her arthritis was bad she wore clothes that were easy to get on and off.
People said that they needed fairly flat, easily fastened, comfortable shoes. Some used long-handled shoe horns.
Shopping more frequently for smaller quantities of food was easier for some people. They took care not to make the bags too heavy, to get help from others and to use home delivery services. Some people used the Internet to do their shopping.
Gardening was also a common problem. Heavy work such as digging was usually impossible, but some people could do light work, especially if beds were raised.
One woman recommended using childrens tools. She had a light plastic watering can and worked on window boxes that were at a suitable height. She got in touch with the Gardening for Disabled Trust, which was most helpful it offers advice, financial and practical help.
The Gardening for Disabled Trust and staff from a local company helped with her garden.
People also found it hard to do their own house repairs. One woman said that she liked to do her own decorating but that it had to be done slowly. Others said that they no longer tackled big jobs and had to pay someone to do the work.
Many people felt better in a hot, dry climate, though heat made one mans condition worse. For some people holidays were not easy to organise because they worried about a sudden flare up, being too far from their doctors, and staying in places where there might be steps or unsuitable bathrooms. Young people when traveling or planning to live abroad tend to focus in finding information about healthcare provisions in the country of destination. Air travel was often straightforward as help if needed, was available at the airport (see Mobility, driving and transport).
She worried about going on holiday for more than a week because she wanted to stay close to her…
Many people said that they enjoyed holidays as long as they didnt walk too far, used wheel chairs and asked for help when necessary. One young woman said that she is more independent and has done more traveling than her healthy friends.