Chapter one
WHY THIS BOOK'S FOR YOU
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Chapter oneWHY THIS BOOK'S FOR YOU |
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Hello! We'd like you to know that you're not alone. There are quite a few of us out here, all with different tales to tell and ideas to share. Some of us are feeling pretty lousy at the moment; others feel surprisingly good. I'm sitting here with my ankle in plaster, after an operation which I hope will put paid to the pain in it. The rest of me feels fine (touch wood) so once the plaster's off I'll get back to the office.
I'll share with you here some of my own and other people's experiences in dealing with whichever type of inflamatory arthritis we've got. There are 'ups' as well as 'downs', and there's a lot you can do to encourage the 'ups'. It isn't always easy to cope, but it is possible. You may be lucky and have such a mild form of arthritis that a small dose of drugs or other medical treatment (or maybe nothing) is all that's needed to keep you leading a normal life. Or maybe you're not so lucky, and find that drugs and medical treatment alone won't solve all your problems. You might find it's affecting you socially, financially and emotionally as well, bringing problems you either need to solve, or find ways of adjusting to, if they can't be solved or changed. If so:
"you need to find a new lifestyle, which takes account of your difficulties and how to deal with them. It's a whole new way of thinking…You have to accentuate the positive and take control of your life. It's a mistake to grit your teeth and carry on through pain and damage. Equally, it's a mistake to give up. It's your body. It's your arthritis. You can use your mind to outwit it!" Heather Unsworth, senior occupational therapist at Odstock Hospital, Wiltshire, in Practical Health, 1987
You'll need help from other people of course, professionals and non-professionals. You and your doctor come first. Then people such as a rheumatology consultant, occupational therapist, rheumatology nurse specialist (if you're lucky), podiatrist, social workers, and voluntary organisations, like the 'National Rheumatoid Arthritis Society' or 'Arthritis Care', both run by and for people with arthritis. Above all, of course, worth their weight in gold if you have them, are an understanding partner, family, and understanding friends.
Please don't underestimate your own capacity to help yourself, too. It may mean a struggle, and take time. But fight. It's worth it, as we 'old-handers' and experts like rheumatologist Dr Frank Dudley Hart would agree, "It is a disease that you must fight mentally as well as (with the brakes on) physically." (In his book Overcoming Arthritis, Macdonald Optima).
I hope this book will help you put together your own personal DIY kit, your personal plan of campaign to outwit the arthritis. It's a book for dipping into, as and when needed. You'll find different bits relevant at different times, depending on what the arthritis has cooked up for you and what's going on around you. We're all different. So too will be each 'Outwit Arthritis Kit' (OAK — great OAKs from little acorns grow!).
If the going's difficult, please don't despair. Sometimes the arthritis may make things particularly miserable for you. If so, don't blame yourself for not coping. Just hang on in there until the arthritis is a bit quieter again. Please don't be put off by the seemingly amazing things some people have got up to, despite the arthritis, and don't think that everyone except you must be an uncomplaining ever-smiling saint who always copes magnificently. We've each had our share of getting downhearted, or feeling thoroughly depressed:
"I don't know about you, but I often feel, when reading of other young people with arthritis…that they are wonderfully brave, courageous people — not a bit like me, in fact. Am I, I wonder, the only one in the world who, far from shouldering my burden lightly, occasionally, when the pain is bad, takes it out on the kids, and has been known to argue with the Almighty as to where exactly I fit into this divine plan of His? We all get discouraged from time to time. Personally I find it reassuring and encouraging to learn of others who have experienced such setbacks and overcome them." Mary*, aged 30, married, with RA and two young sons.
In chapter 12, you'll find two more excerpts from Mary's diary which you might like to read. One written when she was feeling very low; the other when she was feeling totally different, bubbly and happy. Hard to believe they're both by the same person, but they are. Look too at the comments she made fourteen years later, in chapter 11.
It's for and about a different age group Most publications about arthritis concentrate on the over 6Os. But nearly a million younger people have arthritis too, or what doctors prefer to call 'rheumatic disorders'. That million includes around 15,000 children. Older people with arthritis certainly have their problems. How I wish they didn't, but we younger people have many different, as well as similar, problems, and this book's 'younger' approach will, I hope, be helpful. I'm not including information specific to youngsters under 16 - for that please refer to charities such as the Children's Chronic Arthritis Association, to Choices for Families of Children with Arthritis (www.kidswitharthritis.org), and to the younger sections of Arthritis Care and the National Rheumatoid Arthritis Society (NRAS).
It focuses on the 'younger' types of arthritis Most older people with arthritis have the form called osteoarthritis, and in most (not all) it's limited to one, or only a few joints. In our age group, however, the chances are you've been diagnosed as having a form of chronic inflammatory arthritis, such as rheumatoid arthritis (RA), or ankylosing spondylitis (AS), or lupus (SLE) or perhaps, if the arthritis started before you were 16, juvenile idiopathic arthritis (JIA, sometimes called Still's disease or juvenile chronic arthritis). In its possible impact on body and on li festyle, chronic inflammatory arthritis can be very different from osteoarthritis. Much of what follows is about RA and other types of chronic inflammatory arthritis like JIA or AS, but some of the general non-medical points may be helpful even if your particular disorder is one of the many other 200 or so rheumatic disorders.
A friendly book I hope you'll find this a friendlier handbook than the usual helpful but often impersonal patient handbooks around. It's not always easy to get to meet people in the same boat, yet sharing tips and friendly advice can be so helpful. That's why I've included lots of quotations from other people like you, who have direct experience of living with arthritis.
Non-medical aspects Though we may not feel 'disabled', and modern medicine can lessen the damage the arthritis can cause, there may still be physical, emotional, financial, and social difficulties: problems with jobs, personal relationships, marriage, children, leisure activities, over and above already well-documented practical problems of mobility, personal care, household adaptations, etc, as well as, of course, the physical illness itself. Your main source of medical advice and information should, of course, be your doctor. This book concentrates mainly on the non-medical aspects of living with arthritis.
A different soft of disability Lots of useful information can be found in 'publications for disabled people'. But many of us, younger people with arthritis (YPAs for short), don't readily see ourselves as 'disabled'. We don't readily identify with publications that concentrate on people with severe and very visible disabilities often very different from our own. Sometimes the arthritis is visible; sometimes not. Some of us know only too well the problems that can, surprisingly, come from an invisible illness. If you're not in a wheelchair people may not believe you're ill or disabled, especially if you're young and look healthy.
What to call us? I'll mainly use the term 'younger person with arthritis' (YPA for short). Not perfect, but I hope you'll accept it. Sometimes I'll call us 'disabled people', or 'person with a disability', though not 'the disabled' — a term which encourages other people to forget we're all individuals first and foremost, and all very different at that. There are other words some of us use too, especially when lightening the tone talking to other people, for instance 'hopalong people' or 'young dodderers' or 'young hippies' (if we've had a hip replacement), or 'spondies' (if we have AS). Some people see and talk about the arthritis as a nasty character called Arthur Itis. Blaming this scheming, unpredictable intruder in our lives can be a helpful device to remind ourselves and other people that the arthritis is no fault of ours and the way my or your body behaves is quite different from the way I or you want it to behave. Arthur Itis can take the blame if we drop something on the floor or are too tired to go to the cinema, or whatever.
Some assumptions Though some of us use wheelchairs from time to time, most of us aren't full-time wheelchair users. I'm writing with that in mind, but I'm assuming too that you may nevertheless have problems getting around, so will include plenty of information to help you get things by post, phone or via the internet. I hope that much will also be relevant if you are a full-time wheelchair user, but please bear in mind that you'll need to look elsewhere too for practical information specific to your needs.
It's a BOOK FOR DIPPING INTO, so don't feel you have to plough laboriously through it page by page! After you've read this chapter, go on to pick out what's of special interest to you. Do you know for instance about the freephone helpline, 0800 298 7650, at NRAS (National Rheumatoid Arthritis Society)? And the NRAS Volunteer Network of friendly, trained volunteers (all of whom have RA) ready with telephone support when you need it. Or you can email on enquiries@rheumatoid.org.uk There's the Arthritis Care free helpline, too, on 0808 800 4050 (10am-4pm weekdays), email Helplines@Arthritiscare.org.uk or write to Helplines team, Arthritis Care, 18 Stephenson Way, London NW1 2HD.
The book concentrates on non-medical, rather than medical information, but gives you signposts to guide you in finding out more about aspects which interest you. The fact that something's included in the book does not imply recommendation: please use your own judgement, and seek advice where appropriate. As we go along I'll mention books, websites and other information which you might find useful. I've tried to keep to low-cost items, easy to get by post or through the internet. You can also keep costs down by using your local public library. Chapter 15 goes into more detail about buying and borrowing books, and about making the best use of the internet.
This book's written not just to help you, but so that you can, I hope, help the rest of us out here. We all need to do what we can to change public attitudes, which at 'best' mean we encounter strange looks in the street or hurtful remarks about 'being lazy' or 'putting it on'. At worst though such attitudes and ignorance can actually stop us getting the right medical treatment. It's horrific to think that even nowadays a teenage girl with continuing joint pains could be brushed off by her GP saying she's just got 'cold in her joints' or 'growing pains' when in fact she's got RA. Horrific too that your postcode, and not your medical needs, may dictate what treatment you receive.
Current problems and suggested ways forward are highlighted in Standards of Care for People with Inflammatory Arthritis, first produced by the Arthritis and Musculoskeletal Alliance (ARMA) in 2004. ARMA comments:
"There is strong evidence that early intervention improves the long-term outlook for people with inflammatory arthritis. Yet there is enormous variation in people’s experiences and in the quality of the care they receive. Many people wait too long for referral to a specialist; indeed, access to specialist care varies greatly according to where people live. Research shows that existing guidelines, including National Institute for Clinical Excellence (NICE) guidance on prescribing biologic therapies for rheumatoid arthritis, have been unevenly implemented; and there is insufficient priority given to training for health professionals involved in the care and support of people with inflammatory arthritis. This has very severe consequences for the individual and for society more widely."
We younger people with arthritis can each play our part in making society and policy-makers and providers aware that we exist, make them aware of the real impact of inflammatory arthritis on us and on our lives; we can, especially, make them recognise that these Standards exist and that we want them enforced!
"We hope the Standards will act as a tool for all stakeholders — service users, providers, commissioners and policy-makers — to work together to review and improve their local musculoskeletal services." (ARMA's 2004 Standards, again)
We can, too, each feed in our support and experiences to groups such as the National Rheumatoid Arthritis Society, Arthritis Care, Arthritis Research Campaign, the British Society of Rheumatology, and to the many other ARMA member organisations campaigning on our behalf for better services and better treatment. Also to our local LINk (Local Involvement Network) and service user forums.
The ARMA Standards are well worth reading, and downloadable from ARMA's website. Other ARMA Standards of Care cover Back Pain, Connective Tissue Diseases, Osteoarthritis, Metabolic Bone Disease, and Regional Musculoskeletal Pain.
If you have RA, you may also be interested in Perceptions of patients and professionals on rheumatoid arthritis care, the report produced by the Rheumatology Futures Group and King's Fund in January 2009.
Let's educate people into taking arthritis/rheumatic disorders seriously. Rheumatic disorders aren't 'just a part of growing old'. Attitudes need changing and far more resources should be devoted to these medical conditions which can strike at any age, and which can, if untreated, cause considerable pain, misery and other problems. Much can already be done in the way of treatment — far more could and should be done.
Grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference.