The brighter side of the hill
Encouragement from some young people with arthritis (YPAs)
1. Understand your particular rheumatic disorder
2. Take an active part in your treatment
3. Overcome the information barrier
4. Get yourself organised!
5. Reduce other stresses in your life
6. Make the most of your can-dos
7. Give yourself goals, and a sense of purpose
8. Balance the 'giving' and the 'taking'
9. Be kind to yourself
10. Escape valves
11. Learning to live with the minding
12. Melt the ICE block
Endpiece
Though much is taken, much abides and tho'
We are not now that strength that in old days
Moved earth and heaven: that which we are, we are;
One equal temper of heroic hearts,
Made weak by time and fate, but strong in will
To strive, to seek, to find, and not to yield.
[from Alfred, Lord Tennyson's Ulysses]
Coping with arthritis is a balancing act; but there's a lot you can do to tip the balance in your favour. Don't worry if it takes ages. Learning any new skills takes time. "Make up your mind that there is one hell of an adapting job to be done, but that the end result is well worth adapting to" (Corbet Woodall, in A Disjointed Life, Heinemann). Be encouraged too by Dr Coleman:
"If you do what you can to control your own destiny and make a genuine effort to take a positive and aggressive part in your own treatment and future, you will benefit enormously. By remaining active and determined you will reduce the level of pain. And by remaining positive you will weaken your illness and strengthen yourself." (Natural Pain Control, Century Arrow)
Some of the best tips can be picked up from talking and listening to a sensible, thoughtful person who's been through similar experiences, for instance in a self-help group like Arthritis Care, or the National Rheumatoid Arthritis Society. Best if you share the same type of arthritis. Avoid the sort of person who has, say, rheumaticky twinges in one hand who assumes they can pronounce authoritatively on any rheumatic disorder! Concentrate on the non-medical aspects: bodies and symptoms differ so much. Specific medical advice is best left to the experts.
Books can give you ideas too, for instance those in chapter 29, and ARC and Arthritis Care publications. People's feelings about having arthritis are described in autobiographies (like those in chapter 29), but are usually mentioned only briefly in other books on arthritis. Personal experience of health and illness is the main focus of the DIPEx.org website. For the rheumatoid arthritis section, 38 people with RA (and 4 partners) were interviewed, and their experiences are grouped into categories: discovery (symptoms, diagnosis, etc), tests and treatments, and living with RA.
Learning to adapt to and to outwit the arthritis means rethinking your lifestyle where necessary. It means counterbalancing the uncertainty of RA and its cousins by introducing as much certainty and stability as possible in other areas of your life. It means reducing other stresses, controlling what you can control, leaving you with more physical and emotional strength to cope with the uncontrollable. It means accentuating the can-dos and keeping the can't dos in perspective. It means working on increasing your inner resources, restoring any lost self-confidence, and building up reserves of courage, motivation and wisdom, a resilient sense of humour, and various self-help skills.
Facing up to smaller problems can help you deal with larger ones if they come, in the same way as vaccinations prepare the body to defend itself against a major invasion by germs. Avoid 'crutches' like alcohol, smoking, or too many tranquillisers. They only postpone the day you need to face up to problems: worse, they may even add new ones.
Work on non-physical abilities and skills. Brain not brawn! When you were physically fit, there were masses of ways to let off steam at difficult times. Playing football or going for a long country walk are wonderful ways of working off angers and frustrations if you're fit. When arthritis is around there may still be some physical outlets open to you, such as swimming, or gentle exercise, or making love, or gentle dancing, but you'll need specially to build up your non-physical skills and interests.
Be patient with yourself. Give yourself plenty of praise and encouragement as you learn to live with the arthritis. Your self-confidence and self-esteem may need rebuilding. Above all, give yourself time. Don't give up, just keep working slowly in the right direction. Don't blame yourself or feel guilty if that's easier said than done. On a bad day, any achievement deserves a medal. Simply struggling out of bed to face another day can be the equivalent of a fit person scaling Mount Everest.
J's in her 20s, with JIA since her early years:
"Just because you have arthritis life doesn't have to be too bad. You just have to take things a bit easier and carry on, after all life is what you make it. I try to keep happy. I get on with a lot of people but like everyone I have my off days, but family and friends close to you understand and get used to your moods. The pain isn't always bad although it's always there."
Anne Ryman's had RA for several years:
"One thing that keeps me going on a bad day is that 'nothing lasts for ever, not even rheumatoid pain' which is true. My advice is never to give up, do as much as you can each day, according to how you feel, no one else, and instead of saying I can't do this, etc, start from the other end and catalogue all the things you can do. You will be surprised how they all add up.
Even if one is unable to do anything, on a bad day when the pain is just flowing over you, you are still able to listen to other people. Often a sympathetic ear is much appreciated by someone caught up in the hurly burly of life with no one who has the time to listen."
Carol J's married and in her 40s:
"I contracted RA severely at the age of 21 and it undoubtedly changed my life but despite all the traumas of those early years I believe I have emerged as a much stronger person, more compassionate towards other people's problems, more patient, more tolerant and above all more positive.
My maxim being accept what you can't do and enjoy to the full that which you can do! Each one of us has something to offer, some interest we can pursue, no matter what disabilities we may have. Don't dwell on the disabilities. They are not what's important, it's the person that counts, the individual, and each of us has something to give."
Marilyn S is married, in her 30s, and has had psoriatic arthritis for a few years:
"I feel more in control now — of my feelings, my actions, my whole life really. Do I sound weird? I suppose I'm just more relaxed — just taking each day at a time and doing what I can with it. If the weather is nice, I can sit in the garden, or even go for a short stroll. If not, I can get a book from the library, or try a bit of cookery or whatever."
Better the devil you know, and try to understand, than the devil you don't. Reduce fears and anxieties by finding out facts; why waste energy worrying about fiction? You need that valuable energy to make life easier, not more troublesome. I do believe the more you understand what's going on in your body, the more in control you'll feel, and the less you'll worry unnecessarily.
Ask your doctor and other members of your healthcare team to explain your illness to you. Each viewpoint may differ slightly, but each will add to your understanding. Don't expect to be told or to understand everything at once — the rheumatic disorders are mighty complicated, and even the experts are still learning. So be prepared for some irritating answers that begin 'it's possible that', 'it's difficult to say whether', 'you might or might not find that…'. Most frustrating of all, there's unlikely to be any clear answer to the most important question of all — what's going to happen to you?
Jacqueline S's questions met with a very helpful response:
"After the operation to replace my left hip joint I badgered the consultant for more information so that I could help myself more. He and his staff produced a booklet they'd been working on, full of hints and written in a light-hearted manner which has proved very popular and useful to anyone with difficulties of everyday living."
Read up about your disorder too, preferably in publications recommended by your doctor and those in chapter 3. Make sure what you're reading is by someone reputable, medically qualified and up-to-date. Medical knowledge changes so rapidly. Beware of the dangers of half-knowledge. If you don't understand, or are worried by what you read, ask for an explanation. Get worries off your chest by talking to a member of your team. As you do your reading you'll pick up some medical lingo too, helpful in understanding doctors!
Don't fall into the trap of believing everything you read will necessarily happen to you. Remember no two of us share precisely the same body and symptoms, so even an illness with the same name will behave differently from person to person. There are similarities, as there are in makes of car, but the variations on a theme are vast.
Don't depress yourself by reading too many books and listening to too many people who go on about the don't dos and the can't dos. Go for the dos and the can-dos!
The doctor's spent years learning his/her skills, so too has the rest of your healthcare team. But don't expect them to do all the work! Learn how to make the most of their skills to help you help yourself.
The doctor may prescribe pills for you, but that's only step number one. The next steps are your responsibility — for instance taking the tablets in the right dose at the right time, noting their effects, and watching out for side-effects, not fearfully, but realistically. Similarly with other treatments: the doctor may recommend physiotherapy and the physio may show you exercises — but then it's up to you to do the exercises, to give the prescribed treatment a fair and honest trial. If it doesn't work, at least you'll have tried. What you try next could be the winner.
Use the team's expertise to help you work out ways of coping physically, ways of avoiding or at least controlling pain. Learn about joint care, pacing and energy conservation, helpful exercises, medication, ways of balancing exercise and rest, and how to recognise and respond to your body signals. Don't be disappointed if the team don't lay down hard and fast rules ('do this and such-and-such will happen'): although they know masses about their speciality they're only newcomers to your particular body. So for starters they'll be making 'informed suggestions'. You and they will then have to see how your body responds.
Build up other 'patient/health consumer skills' to help you negotiate your way through the NHS maze. Find out who does what, and how, when and where. Make sure you, at least, are efficient! — in remembering appointments, for instance, and making the most of limited time available — the sort of thing chapter 4 deals with. Don't assume everything will be done for you — for instance if you're told you'll need to go into hospital, you're the only person who knows what problems that'll create, so start planning right away — and seek help early, if necessary.
Leave no stone unturned in your quest for information! You'll solve problems and feel more in control. Sharpen your detective skills. So many opportunities are overlooked simply through not knowing what exists to help or challenge us. Arthritis may impose limits, true, but the information barrier is one we can certainly overcome.
One of the keys to successful coping is knowledge, and one of the main aims of this book is to share it. However immobile, you can do plenty of detection from your own armchair through reading, writing, telephoning, talking to people, and using the media. Ferret out information on medical, practical, financial, personal and emotional matters.
You need to know where to ask for help, and when, and what sort of questions to ask. I hope chapter 15 will help get you started. Seeking help in one area may help you in another. For instance finding out about special gadgets may also help you cope emotionally, by cutting down on frustrations which take their toll on you and yours. So — happy hunting.
Good planning and organisation can reduce unnecessary stresses and strains and help you feel more in control in at least some areas of your life. Someone who makes a list before going shopping can ensure they buy everything in one go, with less problems to sort out than someone who doesn't make a list but buys on impulse. A motorist who keeps the car serviced and the petrol tank fIlled has fewer unexpected breakdowns than a disorganised motorist.
OK, so the unpredictability of arthritis doesn't exactly make planning easy, but use your brain to keep one step ahead. Plan your life and pace yourself so as to make the most of what energy and abilities you have.
Keep notebooks and lists of what needs to be done. Then when you have a good/better day look at your lists and instantly get cracking! They'll also help you avoid forgetting things, and avoid taking two journeys to do what might be achieved in one. Make notes too on what you need to ask other people to help with, so you're ready instantly to take advantage of any kind offers.
Halve lists and halve them again to eliminate inessentials. You don't need to serve 'cordon bleu' meals to your family, don't need to wash the bedlinen quite so often, don't need to put yourself out for guests. Cut out most of your ironing, and bedmaking, and save energy too by doing some shopping by post. Eliminate or delegate or facilitate each task, ie cut it out, get someone else to do it (paid or unpaid), or find an easier way of doing it yourself. Break down heavy tasks into smaller, easier tasks, if possible (eg clean only one room or half a room at a time). Here are some general guidelines. Look too at the replanning exercise in chapter 22.
Here's how Sue Gunn organises her life:
"Organisation All my days have to be organised well in advance if I am to maintain my independence. For instance, when I do my washing my husband has to get out the linen basket, washing powder, clothes horse, etc. If there are any heavy items he has to load and unload the machine for me. I have to decide well in advance what we're having for dinner so he can get anything out of the freezer or cupboard that I need. If we are having visitors for a weekend, for example, I have to know a good couple of weeks in advance so that I can plan the shopping and cooking etc, so that I have very little to do when they are actually here. Only then can I ensure I have enough energy for entertaining…
"Spontaneity I think one of the major effects of being disabled is that you cannot be spontaneous. I would love to be able to get up at weekends and suddenly decide to go out for the day… I know that if I have a busy day, I am going to be extremely stiff and tired the following day. This doesn't stop me going out but I do have to plan my timetable very carefully. If I am going out, I make sure I can rest the next day. Hence if I feel like going out on the spur of the moment, I have to check my commitments for the following few days. This also puts a restraint on my husband especially as he is very active and has got plenty of energy. Often he will go ahead and play golf or squash while I rest at home. There are, of course, occasions when I ignore sense and go ahead and suffer the consequences later!" (In Contact)
What other unwanted stresses are there in your life besides the arthritis? Try not to blame the arthritis for everything, though it's a great temptation. Can you cut down on any other stresses, eg at home, at work, in your leisure activities, personal relationships, finance?
Try to avoid inviting too many 'controllable stresses' into your life at once. For instance, moving house, getting married, giving up smoking, starting a new job, having a baby, are each individually stressful experiences — if you have the choice, avoid taking on more than one at a time! Try to stabilise what Dr Vernon Coleman calls the 'four cornerstones of life' — family, work, leisure, friends.
Some further reading might help, either from one of the support groups in chapter 3, or from the following sources, though none deals specifically with arthritis or chronic disorders:
OK, so maybe your bones, joints, muscles, etc are pretty dodgy. But what about your brain, your voice, the richness of all your senses? Your brain hasn't got arthritis. Make the most of it! Researches show we use only a fraction of the brain's abilities. You don't need paper qualifications; just keep your brain active. Look at how apathetic so many 'fit' people can be — we can outshine so many of them simply by being mentally active.
Learn new skills, for pleasure or for a purpose: for instance lots of young people with arthritis (YPAs) drive cars or wrestle with computers and word processors. Shut pain-awareness out as much as possible. Look on a problem as a challenge. Remember what fun a child has faced with a problem. Relish the sense of achievement when you solve a problem (however small) and reward yourself with a gold star and big pat-on-the-back.
If you can't do something such as getting a bowl off a low shelf in the fridge, get the brain working! My solution was to use a clean long-handled dustpan and easyreach gadget. My brain told me that if I couldn't get a dish of food out by lifting it, I should try the opposite, and lower it — on to the dustpan. Raising it up was then a simple matter. ('Thinking of opposites' is a useful problem-solving trick.)
In the office, if you've got six different things to do, eg photocopying, collecting mail, consulting someone about figures, going to the loo, looking in a reference book, don't make six separate journeys — instead get the brain to plan one journey to achieve all six aims. Similarly if you've got to go upstairs, or into the garden. Try a book like Edward De Bono's The Uses of Lateral Thinking to stimulate the old brain cells.
Use all your senses, really use them — eyes, ears, nose, sense of taste, and touch. Incredible how many people don't. Incredible for instance how many people walk straight into things: they may claim it's because they're concentrating on something else, but it's just lazy eyes. If bumping into things causes pain, you soon train your eyes to notice obstacles and avoid them, while still concentrating on what's for dinner or the end-of-the- month financial returns. Occasionally some types of chronic arthritis affect the eyes — if so, concentrate on sharpening the other senses.
Make your ears work for you. Learn for instance to tell from your armchair how the cooking's going using your ears and nose, long before the burning stage. A pre-boiling pan of water sounds quite different from a boiling pan.
Use your senses for pleasure, too. Really revel in a beautiful sunset, sharpen your ears to hear birdsong, train your nose to tell you what's going on around you, make a meal a taste-experience not a frantic gobble to quieten hunger-pangs. And marvel at the infinite variety of touch experiences. Train yourself by making a long, slow, total sense experience out of eating a strawberry. I worked so hard on my 'senses' I was a semi-finalist in a Great Gourmet competition, identifying gloriously mysterious foods by taste, smell and sight, and I was very nearly a finalist!
Your voice is an incredible tool, for work and. pleasure. Make the most of it. Use it to influence other people's reactions to you. Does a harsh, grating voice, or a whining voice, make you want to listen to someone. or help them? No? What sort of voice does? Learn to sing, or debate. Use your voice to find things out, to 'educate' people to help not hinder you (and the rest of us YPAs too), and to persuade and cajole people. Use it effectively in your job and on the telephone. Use it to help other people, to praise them, to make them feel good, to tell jokes, to spread a little happiness and help the world go round.
That's only for starters. I haven't even touched on a sense of humour yet — and that's worth a good million or two.
A dodgy body can achieve the unimaginable, given ingenuity, motivation, and luck. Artistic genius Renoir painted masterpieces from his wheelchair though the paintbrushes had to be tied into his gnarled hands. He had rheumatoid arthritis. Modern technology helps us too. — With phones, TVs, computers and modems the world comes to us increasingly. Stuck here convalescing for three months my word processor, cordless phone, remote control TV, radio and vacuum flask kept me still reasonably sane and in touch with the outside world.
It's all too easy to sink into a sea of self-pity and lethargy. Why bother trying to do anything? Understandable, especially in the early days, but if you let that continue, things will just get worse. Instead, start picking yourself up. Motivate yourself, little by little, and you'll start to have good feelings again, less time to feel pain and misery, and to feel worthless and uninteresting. Choose realistic goals, so you don't risk the disappointment of failing to achieve them.
Give yourself things to look forward to, even if it's only the next episode of a radio or TV series, or follow the progress of a football or cricket team regularly, week by week, for example. Don't just sit mesmerized by the TV screen regardless of what's on. Instead get the Radio Times or other radio/TV listings magazines, and have a forward planning session, circling in red anything of special interest. Switch on only for those. Use programmes as inspiration for further reading, studying, and developing hobbies. Keep your eyes open for anything of interest to friends: they'll appreciate being told about something they might not have noticed themselves.
Continue with your interests and hobbies, or develop new ones. See later chapters for plenty of ideas. They'll not only give you a sense of purpose, but also something to chat about, a welcome change of topic from arthritis. Don't waste energy moaning if physical activities like gardening or sport are out. — Why not become an expert armchair gardener, traveller, or sportsperson, accumulating a wealth of ideas and information that many physically active people don't have time to accumulate?
Going in for quizzes and competitions can be a fun hobby that's stimulating and definitely keeps you looking forward. Who knows, you could even win prizes. I've notched up quite a few paper-and-pencil competition wins (nothing really big — well not yet), also third prize for apples in the Flower Show and first prize (more than once!) for best fruit flan. Other YPAs have triumphed in singing contests, bridge competitions, art shows, etc.
Many people find a fulfilling sense of purpose in working for a cause of some sort, for instance doing voluntary work for Arthritis Care (arthritis welfare) — perhaps helping in a local branch; or working to raise money for arthritis medical research (ARC), or other support group, or by working for a local voluntary organisation like Sue G. RA stopped Sue practising as an OT, but she used her knowledge working for the local DIAL Group. Another YPA rides with, and works for, the Riding for the Disabled charity. Or you might want to get involved in some other local action group or with the local church. (See chapter 33 on voluntary work.)
If your arthritis is too unpredictable you might prefer to avoid committing yourself to any specific task, but there's still lots you can do. If nothing else, do make 'educating' other people about arthritis your cause! Goodness knows they do need educating! Sitting here with my ankle in plaster I've managed to have a go or two at that — taking part in a radio phone-in, writing letters to newspapers, etc.
A good job's another way of achieving a sense of purpose. Read chapters 31 and 32 on employment to see what you can do to find a job, or change jobs, or to keep your existing job. People with children have another good 'reason to keep going', even though children can be such hard work, arthritis or no arthritis.
Learn new skills, by doing an OU or other correspondence/distance learning course if you can't get out and about (see chapter 30). If you can get about then the possibilities are vast — evening classes, residential weekends, etc. Who knows what your new-found skills may lead to. — Marie Joseph taught herself to type, and became a successful novelist; Ann McFarlane enjoyed cooking as a hobby, and then published a cookery book. So get cracking!
"One cannot write a prescription which says that so-and-so, being much injured, will need much loving and much opportunity to love." (In Private World of Pain)
So wrote Grace Stuart, with feeling, after many years of living with RA. 'Wounded', physically and emotionally, we do need much loving. Living with a chronic disorder does seem to mean doing a lot of 'taking' from people, taking their time, help, and love. But grateful though we may be, we do also need the 'opportunity to love', and opportunity to 'give' too. Being on the receiving end is lovely for a while, but if it goes on too long it reinforces feelings of uselessness and being a helpless invalid. Instead, 'giving' instead of constantly 'taking' can be a real morale-booster.
If only more of those who so kindly offer help would realise how much they could help by simply allowing us to do some 'giving' too. Friends, for instance, who so kindly help you to get to the pub, but then refuse to let you buy a round — something you definitely could do! However good their intentions, they're adding to your mobility disabilities by disabling your self-esteem and pride.
Surprisingly, sometimes our accepting help gracefully is actually a form of 'giving'. Many people do have a great need to feel needed — and so though you may seem to be on the receiving end, you're actually doing them a favour (but keep it quiet or you'll spoil the effect). So much the better if their need and yours coincide, for instance if a friend offers to look after your children for an hour or two, just when you could do with a really welcome breather, or a friend who loves window-shopping can be commissioned to report back on what's available in the shops, or friends going sightseeing can be commissioned to report back on access for you.
You can 'give', in lots of ways, however bad your arthritis. You can still keep up or make friendships, by giving people time, by listening to them (a rare treat nowadays), even giving them a shoulder to lean on (metaphorically at any rate). Some YPAs have become Samaritans. You can be that rare friend who always remembers birthdays and special occasions with a card. Keep in touch by phone, cassette, email or letter if physical outings are difficult. And you can still share love, and a sense of humour, corny jokes, funny stories, even a zest for life, with people, however bad the arthritis. After experiences of pain and physical frustrations, simpler things in life take on new values; this enrichment can in turn enrich relationships with other people.
Maybe you can't take the children off for a walk, or play football, but you can read or sing to them, and give them time and emotional support. You can always 'be there' for them. Too many children lose out on these precious gifts.
A good way to enjoy 'giving' instead of constantly 'taking' is to have a pet, especially if you live alone. A pet can make you feel needed, and loved, and offers you ample opportunity to love in return. If you have a pet yourself, do be sure you can cope with it physically of course. No sense getting a dog which needs lots of exercise. Try a bird, or a gerbil or a guinea pig, or a cat which looks after itself. Or take an interest in a neighbour's pet, or 'adopt' an animal at the local zoo. — Choose carefully: a lion could be a problem!
There's a lot of medical support for the belief that stroking an animal is soothing and can actually reduce blood pressure and stressed feelings. A US study of coronary sufferers discovered that survival during the first 12 months after a heart attack was strongly related to the patient being a pet owner. Even if you don't own a pet yourself, there's a nationwide charity, the Pets as Therapy (PAT) Scheme, where friendly and well-adjusted dogs and cats are taken by their owners, registered volunteers, to visit someone in hospital or at home — a real morale-booster for someone feeling unloved or low. You might like to offer to be a volunteer yourself if you own a gentle and friendly dog.
Another charity, Dogs for the Disabled, email info@dogsforthedisabled.org, tel: 08700 776600, trains dogs to be useful companions, like Elton, the labrador, whose many skills include bringing in post and newspapers, even the milk (in a special padded carrying case). A dog can be trained too to open and close doors, help a person undress, and even to take the laundry out of the washing machine — all sorts of things! Support Dogs, tel: 0870 609 3476, is another charity which trains disability assistance dogs to do these and other tasks.
Chronic arthritis can undermine self-confidence. Try hard not to add to the problem with guilt, self-criticism, or self-pity. Instead, work on morale-boosters.
Try to be comfortable with the arthritic changes in your body that can't be altered. Try not to waste time and energy asking 'why me?' That can lead to self-pity and bitterness, unhelpful to you, and unattractive to other people. It's not a punishment for something, it's just the way things happen to have turned out for you. Other people have other crosses to bear.
A poor self-image is understandable; it's not always easy to come to terms with twisted hands or knees, or a clumsy body you'd happily step out of if you could, especially in a world which worships perfect youth and beauty. But try. Attractiveness really does lie in your personality and in how comfortable you can learn to feel with yourself and your body. Other people may withdraw from someone, not because of the way they look, but because that person's discomfort makes them uncomfortable, or because that person tries too hard to overcompensate for a poor self-image, and in a craving for reassurance makes too many emotional demands on others.
Don't get obsessed about your appearance, but don't neglect it, either. Emphasise the good points, and say to hell with the bad points. An ugly person who's at ease with himself is more attractive than a handsome or beautiful person who's obsessively narcissistic or self-critical.
Encourage yourself to keep going. Remind yourself of your good points, and work on them. Do what you do do well. Don't feel guilty about what can't be changed. If you're a man with arthritis, maybe you and your wife have to swap roles, with her going out to work as the wage-earner and you staying at home. Well, instead of telling yourself you're a failure, try making a good job of it (hopefully with encouragement). No need to be a perfectionist, but reapply work skills to managing a household. If you can't do practical things, then do paperwork and brainwork and things which require less physical effort.
Be patient with yourself. Live one day at a time, and make the most of the good times. Too few of us learn to enjoy the moment and really appreciate the happy times. Like any other skill, you can develop that of savouring each and every good moment, so that in the bad times you look back not with regret, but with the tonic of remembered pleasure.
Make the most of the absence of pain. Relish a better day, don't waste it worrying about the next day. On a bad day pain can dominate your existence — well, on a good day, really let the absence of pain dominate instead!
Why shun praise and encouragement from other people? Accept it, quietly. You deserve it, for it's a real achievement to 'keep going'. And as Pamela says: "When you know that other people admire your 'pluck' you begin to develop some self-respect."
Have faith in yourself, and the courage to be different, if necessary. Be considerate of others, but don't worry too much about 'what people think'. It's not always easy to be self-confident when you're already laid low emotionally and physically, and long to be that weird and wonderful thing 'normal'. But you're the expert about what's right for you. For instance, living together may be a better option for some people than marrying, choosing not to have a baby better than choosing to have one, even though marrying or having a baby might make you seem 'more normal'. (Vice versa too, people may think you shouldn't get married or have a baby 'because you're disabled'.) It's not 'what other people think' that's important — the choice and the responsibility for making that choice is yours alone. Don't let other people organise your life for you.
In its Challenging Arthritis and other courses, Arthritis Care includes help with developing self-esteem skills, and raising self-confidence:
"Taking a deep breath, crossing your fingers and hoping that a potential employer won't ask awkward questions about your arthritis at a job interview is all very well but the ability to deflect such questions or answer them to your own advantage is a skill which can be learned. Having the confidence to remain seated at a wedding when everyone stands up to toast the couple is a skill which can be learned. Having the confidence to close conversations about arthritis or open them up when it suits you is a skill which can be learned." (Young Arthritis News)
Finally, keep things in perspective. Count your blessings — a cliche, but good advice. Make the most of your sense of humour. Dig it out now if you've buried it somewhere. No excuses! Don't be too serious and sensible about it all. Give yourself occasional treats. As Sandy Burnfield advises, from his own experiences of living with a chronic illness: "Moderation is the key to leading a full and happy life, but occasionally, extremes give spice." True!
Fit or unfit, we all need some form of escape from stress, and some way of recharging our batteries. Something like a good holiday, for instance, (though also potentially stress-causing if the wrong sort!). Or simply a day off, enjoying the countryside or watching a sport or whatever.
Be wary though of 'bogus' escape valves that may appear helpful in the short term, but could create additional problems in the long run. Alcohol, tobacco, illegal mood-altering drugs won't solve problems. Prescribed tranquillisers or sleeping pills won't solve them either, though may help you cope briefly at a time of crisis.
Be wary too of quack remedies and therapies which promise to solve all your problems at great expense. Try not to seek comfort and solutions in over-eating. Putting on weight only increases stress on weak joints. Watch your consumption of tea, coffee and cola drinks. They all contain caffeine which produces tension symptoms of headaches, nervousness and anxiety (and makes you go to the loo very frequently!).
We YPAs need better ways of 'escaping' from our stresses. A permanent transplant into a new, perfect, body, or at the very least, a rest from time to time outside my body is totally unrealistic, at the moment, anyway, alas!
So let's be realistic. What 'escape valves' might suit you? What helps you let off steam, recharging the batteries so you return to the fight with renewed vigour? Use a diary, a good friend, the Arthritis Care helpline (0808 800 4050, email Helplines@Arthritiscare.org.uk, or the helpline for younger people, 0808 800 2000, email TheSource@Arthritiscare.org.uk), or other support group as an uncritical ear for your moans and groans, and see 'Talking therapy' in chapter 14. Or pour out frustrations on paper and later, when you feel better, tear it up and forget it: preferable to a snappy remark that lingers in other people's memories. Some people pour their feelings into stories about a quirky companion called Arthur Itis. Use the anti-stress techniques in chapter 14, like relaxation, meditation. Above all, use 'laughter therapy'! Make the most of your sense of humour. Laugh and the world laughs with you. Wonderful medicine.
Daydreaming can be a helpful escape valve. — Usually it just happens, but Dr Vernon Coleman, in Natural Pain Control and in Arthritis describes how you can also use it consciously, to help control pain. Ordinary dreams can help too — amazing what ambitions and what recreational and sexual fantasies you can fulfil in your dream body — enjoy them. Music, religion, a romantic novel or gripping detective mystery, even watching TV can be good escapes, too, provided you're not storing up long-term problems by totally ignoring family or partner!
Do something so absorbing that problems can't intrude, or train yourself to 'switch off' for a while at least. Or try the opposite, but in a controlled way: schedule for yourself a regular 'worry half-hour' or so, when you can worry as much as you like but allow yourself no worrying outside that time.
Silence, solitude, or sleep, can be blissful escapes. — Make time for them in your life, and get the family to understand and cooperate. They'll benefit too.
"We ought, of course, to stop minding, but we are only human, after all. And another picture rises before my mind's eye. A sunny tennis lawn where I watched 'the others' playing and a friend who said to me, a propos the arthritis,'Of course, you've got over minding this!' But I was young and I hadn't — though I smiled and said that I had. For to people who guess as badly as that one never tells the truth; any more than one tells it to those who guess well, for they have known it all the time! No, I hadn't stopped minding, and I have tried to learn, too, not to let it weigh too heavily on those friends who must leave me out or behind. And that, I think, is the best one can do, for not to mind at all might be nearer to masochism than to merit." (Grace Stuart, in Private World of Pain, Allen and Unwin).
Alas, 'minding' is hard. It can easily become jealousy, envy, bitterness, which gnaw at the soul, using up already depleted emotional energy reserves, and which may add to problems, by turning other people away. Minding doesn't go away, but it can be lived with. Audrey Shepherd found one way of living with the minding:
"I believe that an important part of being made whole involves learning to absorb suffering instead of passing it on in another form… Suffering comes to us in the forms of pain, frustration, ill-health or unhappiness, and we take our part in the vicious circle of never-ending suffering by passing it on to other people in the forms of irritability, resentment, bitterness or cynicism. But hope for mankind will only come when we cease to do this, when we absorb the suffering that comes our way and render it powerless by our refusal to pass it on to other people in some other guise. Seen in this light, suffering is robbed of its most unbearable feature, the sense that it is futile and meaningless. It is seen instead as a challenge, not in a pious but in quite a practical way. To say that suffering is no longer meaningless is not to say that it ceases to be inexplicable. It remains, or much of it remains, a mystery." (In Paul Hunt's Stigma, Geoffrey Chapman)
Where to start? Instead of envying someone doing what you wish you could still do — mountain climbing, travelling to exotic far-off lands, or just tramping around the sales, take an interest. Difficult but rewarding. That person will be attracted by your interest rather than repelled by envy. And instead of wasting the time they're away letting the envy gnaw away, do something interesting yourself, if only watching a film on TV or listening to a radio programme. Something you can talk to them about later, maybe. And train yourself to enjoy listening to what they've been up to — with practice it becomes a genuine pleasure. Even if it doesn't come automatically at first.
Minding about being dependent is hard, too, minding about having to swallow your pride and ask for help. As Sue Gunn says:
"I don't like other people being in control of my actions. Of course, I am dependent on my husband, family and friends for a lot of things. And, if there is no way I can be independent in something then I don't think it is worth worrying about it. The main thing is that I remain as independent as I possibly can. I prefer to take my time to do something I want to do than let someone else do it for me in half the time. At the same time, if it takes half an hour to put my stockings on then I prefer my husband to do it, so I can save my energy for something more important!" (In Contact)
True. And also, don't forget that with a gadget here, or a nifty bit of brain-work there, you can achieve unimagined independence.
Minding about other people's attitudes can be tackled in various ways (see chapter 25). 'Invisible' symptoms can lead to embarrassment, to misunderstandings, just as much as 'visible' disabilities. Don't be demoralised by people who would 'segregate' and 'discriminate' (however subconsciously) against someone with a chronic disorder/disability. Counter-attack instead by 'melting the ICE block'. Unjust though it may seem, learn to take the initiative yourself in getting over any unease or misunderstanding or prejudice. You are the expert, after all, and that way you'll show you're not a 'victim', but very much in control.
One of the most valuable things each of us can do, I believe, is to be an ambassador for the rest of us with arthritis or other disabilities. For instance, by graciously accepting even unneeded help from other people remember you're doing your bit to encourage them to help again when that help may actually be needed. And the able-bodied of today may be the disabled of tomorrow.
From time to time, if 'minding' does become overwhelming, don't feel guilty about giving in to it. As one YPA put it:
"The struggle goes on and I think we should feel free to allow ourselves some days of weakness, self-pity and self-indulgence in order to keep the battle going — we want to win the war not just every battle…"
Allowing yourself the right to half an hour's snivel is important. A good cry, alone, or on someone's shoulder is very therapeutic. Or you could follow PB's example:
"I consulted a good friend and arranged with her that I would phone her any time I felt the need to relieve my pent-up frustration and aggression by delivering to her a stream of abuse…"
ICE stands for the 'information, communication, education' block, between those who know about younger people with arthritis and what it means, and those who don't. We can all help melt the ICE block. You'll feel you're doing something constructive. It can even be fun and lead to all sorts of unexpected happenings, like being interviewed on local radio!
In chapter 15 one YPA describes how she, as a local Councillor, was able to educate the Chief Executive of her local council about arthritis. Peter Nightingale, another YPA, was a manager with his local council. He found that melting the ICE became an important part of his job. An OT put his name forward to take part in discussions on access for people with disabilities. Soon he was asked to join a local union group called Workers with Disabilities, became its Secretary, and member of a working party on equal opportunities policy:
"So there you are, get arthritis and see the world. I would not have had it by choice but it has given me experiences and led me to gain knowledge I would not otherwise have had. People notice that you have it. A few years ago the Council decided to introduce specially designed public toilets for disabled people. The Engineering Department got involved. I was asked, being 'disabled', if I would liaise with Social Services and with RADAR to promote the National Key Scheme in the borough. I did some of the publicity, a report to committee, and handed the whole thing over to Hammersmith and Fulham Action on Disabled…"
At home, at work, at play, every day and everywhere each of us can do something, however small. Let people know we exist, let them know our needs, our hopes and fears, but don't forget to ram home the message too that we're all individuals and have plenty of talents and abilities. Project a positive image so we get away from stereotyped views. It's good therapy, too, to feel you're actually doing something positive.
Use newspapers and magazines, radio and TV programmes and phone-ins, to speak up. Don't go just for' disabled' items. Try consumer programmes, too, and write in, email or telephone with comments on new developments in your area (what are the architects doing about access, disabled loos, etc?), parking regulations (have we been forgotten?), hospital and healthcare developments (have they remembered the 'young chronic sick', who don't have private medical insurance, can't walk miles to get prescriptions?). Write to manufacturers about packages you can't open, new ideas for gadgets in the kitchen, home, garage, garden, etc. Point out that what helps us YPAs often helps others too, eg young mums with prams and heavy shopping, old people, and other people with disabilities.
Amazing what you can do simply sitting in your armchair. Laid up after an op, I telephoned a radio show after the doctor on it had answered a question about lupus. He hadn't mentioned the lupus support group so I phoned to publicise it, and ten minutes later the nation (well, that show's audience, anyway) knew all about it.
Fund-raising, selling raffle tickets, charity Christmas cards, getting people to collect stamps for charity, are other ways of publicising your 'cause', and making other people feel they're doing something to help. I put a notice in the office bulletin asking people for coffee labels. These raised funds for the Raynaud's Association, helped publicise Raynaud's, and helped explain to colleagues about one of my 'problems'.
Look on things like a stick, or a wheelchair, or electric scoota or even an ARC or Arthritis Care badge as bridgebuilders in the way that a baby or pet is often a bridge-builder, something to melt the ICE between you and Joe Public. My yellow scoota gets admiring glances, especially from children, and comments. A smile from me lets people feel they can ask questions and find out a little about me and being a YPA.
Join groups of people who share your interests. Melt the ICE block through groups directly connected with arthritis or healthcare (Arthritis Care, ARC, the National Rheumatoid Arthritis Society, or a local access or disability group). Or through something totally unconnected, like Hadyn Martin, playing pétanque (in chapter 35). People who meet him see and learn not only that he has RA, but is 'normal' too, and talented!
Play your part in democracy. Get a postal vote if you can't get out to vote (see chapter 15). Keep your councillors and MP informed of your views on what needs doing or undoing to help YPAs.
Something I've often found helpful when I need a morale-boost is the thoughtful Desiderata, written by Max Ehrmann in the 1920s. For more about the debate over its origins, visit for instance www.fleurdelis.com/desiderata.htm.
Nurture strength of spirit to shield you in sudden misfortune.
But do not distress yourself with dark imaginings.
Many fears are born of fatigue and loneliness.
Beyond a wholesome discipline,
be gentle with yourself.
You are a child of the universe,
no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you,
no doubt the universe is unfolding as it should.
I'll end by letting Sandy Burnfield summarise how he aims for a positive philosophy in living with his own chronic illness:
"The German poet Goethe wrote the following: 'It is in self-limitation that a master first shows himself'… Once I can accept these limitations, then I can go on to find some sort of meaning and satisfaction in life in spite of them, and perhaps even because of them." (In Multiple Sclerosis: A Personal Exploration, Souvenir Press)