The people we talked to described how they managed their illness and how they coped with pain, tiredness and limitations (see Ongoing Symptoms).
Some people altered the dose of their own prescribed medication to meet their needs. For example, one woman said that her specialist let her alter the dose of steroid that she was taking whenever necessary and another increased it to cope with a holiday (see Steroid tablets, injections and intravenous pulses). However, a few people felt that they didnt have much choice in medication and would have liked to have been more involved in these decisions.
Increased her steroids whilst on holiday to cope with the pain.
Several people mentioned that they altered their painkillers according to their level of pain and according to what they had to do that day. For example, a 42 year old man said that if he had something important to do at work he would take extra pain killers to help him get through the day (see Painkillers). He also said that he used splints when necessary to prevent further damage to his joints.
He wears various splints when necessary, depending on what he is doing.
A few said when they were in pain they had learnt to distract themselves by doing things with the children or by watching television or by talking to friends. One woman said that working for an Open University degree had kept her going. Another suggested that it was important to have something to look forward to, such as a trip to the theatre or a weekend away.
Really enjoys studying although her hands do affect her handwriting, but has found using a voice…
Staying positive and planning something nice to look forward to, such as a weekend away, helps…
Some people said that the disease made them feel very tired. One woman said, I have to stay at my own pace, and take each day as it comes. Another said that on some days she had to tell people to leave her alone and not to telephone because she had to rest. Others took longer afternoon naps, or went to bed early.
Many people stressed that it was important to slow down, to work fewer hours and to restrict social activities to some extent. However, one woman said that she liked to keep busy, even if she worked less hours, because activity stopped her dwelling on the situation. Others found gentle exercise such as swimming very helpful (see Exercise). People described how they had changed their lives in other ways to cope with disability. One man allowed more time to get up in the morning and then set himself tasks to do each day so that he didnt become a lifeless lump. Others said that they had learnt to sit down at parties and not to dance for too long. An elderly woman stood at the communion rail instead of kneeling.
Suggests that people must learn to change, perhaps work fewer hours or give up work if necessary…
He sets himself goals each day because he doesn’t want to become a ‘lifeless lump.
Many people spoke at length about ways in which they had adapted their homes to make life easier. They had altered kitchens and bathrooms in particular, and had bought special equipment to help with everyday living. They also talked about how they shopped and looked after the garden (see Personal life and changes to the home). People altered their lives in many other ways to cope with inflamed joints and flare ups. Many people asked family and friends to help with chores (see Sources of support).