Speaking Out ~ Living With HD

Tools to Help You Cope

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'Tools to Help You Cope'
Chapter 4
Huntington's Disease [HD & Me] and Me, A Guide for Young People

We've talked about some of the situations and feelings young people in families with HD have to cope with. Now we talk about some ways to take care of yourself, to help you cope with your own feelings, with your parent or other people in your family who have HD, with your friends and the rest of the outside world.

Learning to cope is a bit like being a fish swimming up a river full of rapids and boulders, floating logs and other obstacles. To get to a calm place takes strength, determination, courage, hope and optimism. And a fair bit of skill.

You need to be able to recognize the obstacles and find a way through them, round them or over them. If you're going to make it, you'll have to be fit, so the first person to look after is yourself.

Looking after yourself

Here's an ABC of how to look after yourself. If you think about it, you'll notice that some of the suggestions are about looking after your body, some are to feed your mind and some are to nurture your spirit.

You need to look after all three parts of you. Keeping fit and being physically active will help your mind and spirit as well as your body. It's a good idea to look after them directly if you can. Add your own strategies to the list - the more strategies you have the better.

AFFIRM YOURSELF - It doesn't matter whether you're in a mess sometimes, or feel angry, quarrelsome, unhappy and confused, you're still you, the same lovable person you've always been.

BE YOURSELF - Acknowledge your feelings and thoughts. Allow yourself to feel happy when you're happy and sad when you're sad. It's Okay. You don't have to feel guilty or self-conscious or pretend to be someone you're not.

CRY WHEN YOU NEED TO - Cry yourself a river if you need to. Crying is a great way to release your feelings and ease the pressure. Crying reaches beyond words right into your soul. Let the tears fall and keep going till the crying ends. Because it will end.

DREAM - Dream about the past, the present and the future. Remember how life used to be, identify all the good things in your life right now and think of all the wonderful opportunities that lie ahead. Because you do have a future.

EXPRESS YOUR FEELINGS - Almost every thought, feeling and behaviour is normal, as long as it is not illegal or destructive. You might feel like crying or laughing, talking, drawing, singing or dancing. You might feel like hitting a ball against a wall or yelling into the wind. That's Okay.

Don't bottle up your feelings out of embarrassment, fear of rejection or fear of hurting someone else. If other people can't cope, that's their problem, not yours. Put on your own lifebelt first.

FIND A FRIEND - Friends are the best people to have. You can hang out together, mooch about, play sport, skateboard, go for walks, eat. You don't have to explain your situation but if you want to talk you can. Friends are worth their weight in gold.

GET FIT - Or stay fit. Dealing with stress is hard work and you need to be fit to cope so remember to look after your body as well as your spirit. Even when you're feeling tired, take time for a walk in the fresh air, or a run, a swim, a cycle, a quick blast on the skateboard - whatever turns you on. Hard as it may seem if your tastes run to chippies and soft drinks, it really does help to eat healthy food, drink plenty of water and get a good night's sleep. Do you best!

HELP - Ask for help when you need it and help others when you can. It feels good to both get and give help. When you ask for help, someone else has the chance to feel better as well as you.

INFORMATION - find out as much as you can about Huntington's disease. Remember knowledge is power. Your local HD Association [or support group] will be able to give you information. There are some addresses at the back of the book. You can also look for information in the library or on the internet.

JOIN A SUPPORT GROUP - Many places have support groups for young people. In New Zealand we have an annual camp where young people can come and learn more about the disease, share their feelings, get and give support and have a lot of fun at the same time.

Other places may have something similar - ask your school counsellor if she or he knows of a group or contact your local HD Association.

KEEP A DIARY - Writing down your feelings can be both liberating and illuminating. The great thing about a diary is that it is private. You can say what you like, however you like, which makes it a safe place to keep painful, sad, and angry thoughts as well as happy or hopeful ones.

If writing's not your thing, turn your diary into a scrapbook or a home for your cartoons. No matter how skimpy or erratically the entries in your diary are, they will still be a treasure in the future.

LAUGH - Funny things still happen in your life. Enjoy them. Celebrate the good times. Laugh at absurdities and jokes, share good times with your friends. Yes, yes, the old saying is true - laughter is the best medicine.

MAKE MUSIC - Music is also a great comfort and companion. Play your favourite music, sing at the top of your voice or, better still, make music with your friends.

NOTE YOUR PAST SUCCESSES - Remember all the things you've achieved recently. You might have passed a course, won a competition, done well in sport, finished a good book, coped with a difficult situation without 'losing' it. You have many skills and talents. Don't ever forget that.

OPTIMISM - Much is happening in the world of HD research and you have plenty of time to develop a rich, fulfilling life. Look around you, think of your talents and of all the good things in your life. You'll soon see there is a lot to look forward to.

POSITIVE THOUGHTS ARE GREAT - Remind yourself of all the things you do well. Like listening, cooking, making music, playing sport, being a friend. Remember, you've survived so far and you will continue to survive. You have much to offer yourself and the world.

QUESTION - Continue to be curious. The questions you want to ask about HD will change over time as you grow older and move into different stages of your life. You'll need new or different information to help you plan your future and cope with changing circumstances. Keep asking.

RELAX YOUR BODY AND MIND - Relax, take a deep breath, be calm. Take time to soothe your body and soul and reflect on the beauty of the universe and your place in it. You can do this when you watch the sunset or the sunrise, take a long bath, walk the dog, stroll on the beach or in the bush, fly a kite or fish.

SHARE YOUR PROBLEMS - A problem shared is a problem halved, or so the saying goes. Talk to your mother or father - tell them how you're feeling and ask if they have time to talk. They are going through much the same thing as you and probably feel much the same way.

If you have other adults who understand, talk to them. There might be a counsellor at school or a social worker you can ring. Pets make good listeners too - they don't get bored or tell you to pull yourself together. Soft toys were invented for just this purpose - teddy bears make excellent companions.

TREAT YOURSELF - Pamper yourself. Having plenty of rest, eating good food and keeping fit will care for your mind and body but your spirit deserves some pampering as well. Indulge in some junk food occasionally, blob out in front of TV - for a change! Have a hot bath, get a massage, go shopping, buy a magazine, surf the net, whatever makes you feel good.

UNIVERSE - Remember that you're part of a much bigger system. You belong to a family, a school or workplace, a community, a country, a world, the universe.

You're part of the natural rhythm of change. Seasons come and go, people are born, grow older and die. Some creatures live for only a few weeks, other live for hundreds of years. Earthquakes, floods, avalanches and droughts are part of the natural order. On a big scale, such changes are normal, on a personal level they can be devastating - but they are still part of the natural order.

VALUE YOURSELF - Coping with HD is hard but it is also rewarding. As you cope, you grow in wisdom, acceptance, compassion and maturity. You have the chance to think about what is really important in life. You can be a model for others, so value that.

WRITE - Write, draw, sing, dance, play music, play. Be part of life.

X - What can we say? This is the mystery spot for you to fill in with your private coping strategies.

YOU - Yes, we've said it before but we can't say it too often. You're lovable, valuable, precious to yourself and others. Don't forget it.

ZZZZs - At the end of all this, you'll be tired. Treat yourself, put you feet up, sleep in, catch up on those zzzzs.