Adjusting to change
Having joint pain may affect a person’s ability to get out and about, carry out tasks at work and in the home, and pursue hobbies and interests. This understandably can lead to feelings of frustration and depression.
“I knew I was depressed, but I went with the understanding that the depressive stage I was in was because of the lack of mobility and the pain in my feet when I walk or anything. I think what has happened like is my mobility has got me down really, I think I’m frustrated that I can’t do the things that I want.”
Feeling low, can in turn, make it seem an even bigger effort to get out, meet people and do things.
Some people have talked about the mental adjustment they had to make in order to come to terms with having a long term condition like OA, and accept some of the limitations that it can cause.
“I’m a bit philosophical, really. I mean, you can’t expect to do the things that you did when you were younger and you have to learn to grow old gracefully – more or less. It’s a bit frustrating on occasions because inside I don’t feel any different than I did when I was 20. It’s only the (outside) frame- work that’s changed. ‘The spirit’s there, but the flesh is weak,’ I suppose.”
It is common for people, as they grow older, to say that they feel younger on the inside than they appear on the outside. Because having painful joints is commonly associated in people’s minds with old age, some people, particularly those in employment, are often reluctant to tell others that they suffer from painful joints. The downside of this is that they miss out on the opportunity to see if there is a way that their work can be reorganised to make it easier for them.
When researchers asked people how they managed to be positive, these are some of the things they said:
“Just carry on with life and try. Some people are worse off than me aren’t they?”
“The more exercise you do – it’s painful – but you feel better for it. You feel ‘Wow, I’ve achieved something I never thought I’d be able to do!”
“Get involved with doing things for other people because it does take your mind off your own problems. Okay, it’s painful when you’re doing things, but you get so much enjoyment.”
Socialising and having interests
OA symptoms may coincide with life changes such as retirement, and that in itself can mean that people are less active, and that social contact is reduced, as people do not then meet with work colleagues on a daily basis. As a result joint problems may feel worse both because people are sitting more and because there is less to distract the mind.
“I think to myself, ‘As long as I can keep working, it’s making me more mobile, I can keep going.’ Whereas, I think if I stayed at home I would perhaps be sitting too much, and I think you get more problems if you sit about a lot.”
A vicious circle of pain and low mood – feeling down – may result. One way out of this circle is to do something that usually brings enjoyment.
The importance of feeling valued, of having a purpose in life, and friendships help prevent people from feeling low and leave them better able to cope with health problems. This is well recognised. One GP in South London has developed a novel way of working with patients who he feels would benefit more from involvement with other people than from medication. (See the box below.)
TIME BANK AT RUSHEY GREEN HEALTH CENTRE IN LONDON
A time bank is like a blood bank or babysitting club: “Help a neighbour and then, when you need it, a neighbour – most likely a different one – will help you. The system is based on equality: one hour of help means one time dollar, whether the task is grocery shopping or making out a tax return”
Dr Byng, a GP at Rushey Green Health Centre in London, was convinced that many of his patients who presented with symptoms of depression and isolation could be helped by increasing their contact with other people and finding a framework in which they could feel useful to society and needed by others – the Time Bank provides this structure.
People often find it difficult to ask for help, even from family because they feel that they are being a burden. The Time Bank approach makes it easier to ask for help.
Unfortunately, there are not Time Banks running in every area of the country.
However, there are other opportunities to mix with people and feel valued, through giving as well as receiving help. For example, the Beth Johnson Foundation, which is based in Stoke-on-Trent, runs a programme called ‘Active in Age’. People who are over the age of fifty can learn how to put on gentle movement and exercise sessions, do falls prevention or reminiscence work with older people in their community. Your local Age UK office may be able to point you in the right direction to find out what is available in your area.
The Time Bank allows patients to provide support and help for each other. Ultimately, where it makes sense, the GPs are able to prescribe a friendly face or a lift to the shops once a week, instead of medication. The Time Bank there was launched in March 2000 and now has more than 60 active participants, regularly doing visiting, dog-walking, baby-sitting, shopping or anything from writing poetry to accompanying blind people shopping.
“When I transferred to Rushey Green Group Practice I was invited to join Time Bank, which has proved to be magnificent. Soon after joining, I had a successful total hip replacement. Besides exercises, I was told to begin walking again – that’s easy indoors, first with a zimmer, then two crutches, and now one crutch. But, I longed to go out after being indoors for over two years. Time Bank came to my rescue; they were quick off the mark! The Time Bank Broker arranged for a lovely caring lady to “collect me” and take me for short walks, once or twice a week. Ah, lovely fresh air and sunshine and such kindness. I am walking much better now. Thank you Time Bank.” Mrs Treen, Time Bank Member
(Taken from London Time Bank Newsletter 2007)
Finding ways round problems
Leisure activities and hobbies are another important source of well-being. Pain or stiffness from OA can interfere with a pastime such as needlework or gardening, for example. However, this does not mean the end of doing such activities.
By observing people who have joint problems doing everyday activities, occupational therapists (OTs) can work out which step or steps prove difficult. They devise alternative ways of carrying out that particular step, in order to get round the difficulty.
For example, when sewing, if it is the fine movements needed to use pins or thread needles that is the stumbling block, then long pins with large heads and a threading device may make a difference. Accepting that symptoms of pain and stiffness mean everyday tasks have to be done in different ways is not giving in to the condition, but working with it.
“You find different ways of doing a job. I’ve been and bought myself an electric sander for one of the jobs that I do when making models, because it makes my hand ache too much to scrape the bits all off by hand.”
Occupational Therapists (OTs) work in the NHS, although you will need to be referred to see one. Independent Living Centres may have OT expertise available. However, people with joint pain, or their family and friends, can often identify and sort out the problem themselves. By slightly altering a technique, using an assistive device, accepting that progress is slower or taking part in a different way, people who have OA do manage to continue their hobbies and leisure interests. A man with OA in both knees, who had been a keen rugby player, missed not being able to go out running with his rugby friends. He explained how he maintained his link with a rugby club for which he had played in the past.
“I know I’m on the periphery… a man that used to play—but it gives me so much pleasure seeing these young men play, and mixing with the company, and getting in the field.. Like I’ve been marking the pitches out, cutting the grass and doing that kind of thing this morning.”
Things to remember
- Feeling down and frustrated is a natural and understandable reaction if pain and stiffness make it hard to get out and about, socialise and do usual things.
- Those in employment can get advice from OTs on how to reorganise and adapt their work/workplace to meet their needs.
- Continuing to join in social activities and do valued pastimes is important for giving structure and purpose to daily life. This in turn helps lift mood and makes it easier to cope with symptoms of OA.
- People are resourceful and find ways round the restrictions that joint pain may cause in everyday living.
For most people who have OA, their joint problem will not get worse. The most important thing that they can do is to continue to be socially and physically active, which is vital both for a sense of wellbeing and physical health. It may not be necessary to see a health professional very often about joint pain. This does not mean though, that people should feel that they are not entitled to seek medical help and advice if they have worries and uncertainties about their joint problem.
There follows a list of suggestions that have appeared in this guidebook that could help you manage your joint problem. You may like to keep a record of things that you have tried, both for your personal benefit and to show a health professional if you need to consult one.