Epilepsy

EPILEPSY

Learning we have epilepsy can come as a huge shock. It can affect both the way we feel about ourselves and the way others see us. It's a sad fact that epilepsy still carries a stigma and is, in some people's minds (quite wrongly), linked with mental illness or handicap. As a result they may try to avoid us or stop us doing what we want. It's vital not to let such mistaken ideas stop us from going out or leading our lives the way we wish.

Faced with such misunderstanding it's easy to see why some people choose to hide the fact that they have epilepsy. The trouble is, in the long run such concealment can work against us. Each of us has to decide for ourselves who to tell and what to tell them, but by being open about epilepsy and making sure those around us have the true facts, we can help banish wrong ideas.

It can take time to accept a diagnosis of epilepsy. And almost all of us feel very upset when we first find out.  Remember - most of us with epilepsy can - and do - lead perfectly normal lives. True, epilepsy can be debilitating and may prevent us doing some things we want. However, with a few changes to our lifestyle, any problems can usually be overcome.

Everyday life

As we go through different stages of our lives, having epilepsy may affect us in different ways. However, whatever our age, a bit of forward planning can help us enjoy whatever we do, without too many problems.

Try not to let epilepsy undermine your self-esteem or use it as an excuse to avoid new people or situations. Approaching experiences in a positive, confident way helps us get the most out of them - and also allays other people's anxieties about our epilepsy. 

In general -

• Avoid the things that trigger your seizures if you can; but don't become obsessed by this.

• Keep stress to a minimum; but bear in mind you can 't avoid it altogether. Try to learn ways to cope with stress if it is a problem.

• Plan your days to allow enough time for work, rest and play.

• Learn to pace yourself.

• Eat regular meals and a healthy diet.

• Take regular exercise and participate in the sports you like.

• Stick to a regular bedtime (most of the time) and try to avoid getting overtired.

• Make sure you have a sufficient supply of your drugs if you are going to be away from home.

• Have a plan for dealing with seizures (if you live alone it may help to arrange a call system with a friend or neighbour if you get a warning).

• Keep a sense of perspective - no one's life can ever be entirely risk-free. Be sensible about what you do but don't let epilepsy rule your existence.

Safety matters

Most accidents take place in the home - whether or not you have epilepsy. The following tips will help make your surroundings as safe as possible to avoid needless injury:

In the kitchen -

• Think about getting a microwave (it's safer than an ordinary cooker if you have a seizure while cooking).

• With a conventional hob use a cooker guard; use the back burners; turn saucepan handles towards the back of the cooker.

• Carry plates to the hot pans - avoid carrying hot pans.

In the living room -

• Avoid open fires; if you have one use a secured fireguard.

• Avoid trailing wires and flexes.

• Lay a soft, easy-to-clean carpet.

• Fit safety glass in windows and doors.

In the bedroom -

• Choose a wide, low-level bed.

• Have a soft carpet on the floor.

In the bathroom -

• Unless you live on your own, tell a family member or housemate before you have a bath or shower.

• Showers are generally safer but make sure the temperature control is working efficiently.

• Don't have the water too hot.

• When taking a bath turn off the taps before you get in; keep the water shallow.

• Fit a door that opens outwards so it will not be blocked if you fall behind it.

In the garden -

• Use a power-breaker with electric tools or gadgets.

• Plan your garden with care - grass is better than paving.

Out & about -

• Carry only as many drugs as you are going to need while you are away.

• Don't let fear of having a seizure keep you at home.

Practical issues

There are many areas in our lives which may be affected by having epilepsy. Our approach to these issues can make a difference to our daily lives and our health.

Sport & leisure

Sports and leisure activities are good for everyone's health as well as being a great way to make friends. With a bit of forward planning those of us with epilepsy can continue to play many sports.

Alcohol

Many of us enjoy a glass of beer or wine in a pub or inn, a wine bar or over dinner. Luckily, most people with epilepsy can enjoy the odd alcoholic drink. Of course, alcohol is a drug and the drugs we take for our epilepsy can affect and be affected by it. In small amounts this isn't usually a problem.

Regular heavy drinking can actually cause epilepsy. Another point to bear in mind is that the risk of seizures may be increased if you miss out on sleep or tablets after heavy drinking.

Get to know your own limits - and don't let anyone persuade you to overstep them. Most people can drink up to two units of alcohol a day. (One unit equals a glass of wine, half a pint of beer or cider, or a pub measure of spirits or sherry.)

Driving

Most countries have laws regarding epilepsy and driving. You should ask your doctor or your local epilepsy organization how to obtain further information.

These regulations are made because, unless your seizures are fully controlled by medication, you may have a seizure while driving which could be fatal, for you or your passengers as well as other drivers on the road. It can be very hard to accept this change if you are used to driving but ultimately it could save lives.

Employment

Most of us with epilepsy manage to work successfully in a whole range of jobs, however, especially in these times of high unemployment, we may have to persevere. Only a handful of jobs are actually barred by law to people whose epilepsy is controlled. However, it has to be admitted that we do sometimes face discrimination in the job market. The invisible hurdles we may encounter are often harder to overcome than any obvious barriers.

Insurance

It can sometimes be hard to find an insurance company willing to insure us, because it's often thought that we are too risky a prospect. In fact this is a myth. However, it pays to check the small print whenever you take out any insurance so you don't have to pay too large a premium, or find you aren't insured because of an exclusion clause for people with epilepsy.

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