epilepsy and you...epilepsy and you is an online self-management programme for people with epilepsy....

Epilepsy and you Self-management programme

Epilepsy and you: pilot self-management programme for people with epilepsy Programme workbook

© Epilepsy Action 2015. Permission granted to reproduce for personal use only. Commercial copying, duplicating or reproduction is prohibited.

Welcome to Epilepsy and you!

Epilepsy and you is an online self-management programme for people

with epilepsy.

The programme covers:

Active self-management

Epileptic seizures

Managing your seizures

Safety, travel and your independence

Your feelings

Memory, stress and sleep

Work and daily activities

Relationships

As you work through this programme, there are activities designed to

help you think about different aspects of your life. You can use this

workbook to make a note of your thoughts.

Each week, you will also make an action plan. You can use the templates

at the back of this workbook to help you do this.

Your workbook is your private property, where you can write down all

your ideas, thoughts and feelings. You may wish to share them with

other people, or keep them to yourself. It’s up to you!



1 Active self-management

1.1 How does living with epilepsy affect you at the moment?

How does it affect you physically? How does it affect you mentally? How does it make you feel?

Does it stop you from doing anything?

Write down as many ideas as you can below.

How epilepsy

affects me



1.2 Your epilepsy journey

Think about your journey with epilepsy.

When did it start? What happened along the way? Where are you now?

Write or draw an overview of your journey below.



1.3 What do I want from this programme?

Think about what motivated you to do this programme.

What would you like to get out of it? What would you like to achieve by the end of the

programme? Write down at least three things below.

1.4 What are your goals?

Can you think of any goals you might like to set?

You might want to look at what you said you wanted to achieve by the end of the course. Or, you

can think of something completely different.

Write down a few ideas below.



2 Epileptic seizures

2.1 About your seizures

What type of seizures do you have?

What happens before, during and after your seizures?

How long do your seizures normally last?

2.2 First aid for your seizures

What should someone do if you have a seizure?

What to do if your seizures last longer than _____________

Who will I give this information to, and what resources can I use?



3 Managing your seizures

3.1 Your anti-epileptic drugs (AEDs)

Name of AED Dose (in mg or g) How many times a day?

3.2 Remembering to take your AEDs

I remember to make my AEDs by:

OR

If it is:

and I am:

and I have:

then I will take my AED dose.

If I miss a dose of my AED, I should:

3.3 Possible side-effects of your AEDs

Discuss the following with a healthcare professional:



3.4 Preparing for your next appointment

The main points or questions I would like to discuss at my next appointment:

I will take along:

3.5 My seizure triggers



4 Safety, travel and your independence

4.1 Safety issues

What are some risky situations for you? Is there anything that you avoid doing?

4.2 Risk assessment

What is the activity?

What is it about your seizures that may put you at risk?

What can you do to make this activity safer for you?



4.3 Safety around the home

Things I could do at home to keep myself safe:

4.4 Getting around

How the driving regulations affect me:

4.5 Adapting to life without driving

Things I can do to help me manage without driving:

4.6 My feelings about not being able to drive

Things I can do to help me manage without driving:



5 Your feelings

5.1 Your feelings about having epilepsy

5.2 Your experiences of stigma

5.3 How to challenge stigma in the future



5.4 Steps to improving your mental wellbeing

5.5 Unhelpful thinking styles

Unhelpful thinking style Example How could you think about the

situation differently?



6 Memory, sleep and stress

6.1 Your memory

6.2 Impact of memory problems

6.3 Strategies for coping with memory problems



6.4 Feeling tired

6.5 Getting a good night’s sleep

6.6 Recognising stress

6.7 Relaxation



7 Work and daily activities

7.1 Wellbeing and activity

Connect

Get active

Take notice

Learn

Give to others

7.2 Risks at work



7.3 Your skills



8 Relationships

8.1 Your relationships

8.2 Effect of epilepsy on your relationships

8.3 Effect of epilepsy on people around you



Week 1 action plan

Action plan Date:

My goal:

This week I will:

(what will you do, when, how often, how much, who can help you)

My reward is:

How confident are you that you can complete this plan?

(0 = not at all confident, 10 = totally confident)

Day Did you do it? Comments

How well do you think your plan went?



Week 2 action plan

Action plan Date:

My goal:

This week I will:


My reward is:







Week 3 action plan

Action plan Date:

My goal:

This week I will:


My reward is:







Week 4 action plan

Action plan Date:

My goal:

This week I will:


My reward is:







Week 5 action plan

Action plan Date:

My goal:

This week I will:


My reward is:







Week 6 action plan

Action plan Date:

My goal:

This week I will:


My reward is:







Week 7 action plan

Action plan Date:

My goal:

This week I will:


My reward is:







Week 8 action plan

Action plan Date:

My goal:

This week I will:


My reward is:







Notes

As you learn more about your epilepsy and how to be an active self-manager, you will come up

with lots of ideas about changes you would like to make in your life.

Use this space to write your ideas down – this keeps them all in one place.



Need help?

If you want to talk to someone about epilepsy, contact the Epilepsy Helpline:

freephone 0808 800 5050 text 0753 741 0044

email [email protected]

If you have questions about this programme or technical difficulties, contact:

[email protected]

Epilepsy Action

New Anstey House, Gate Way Drive, Yeadon, Leeds LS19 7XY

tel. 0113 210 8800

Epilepsy Action is a working name of British Epilepsy Association.

A company limited by guarantee (registered in England No. 797997)

Registered charity in England (No. 234343)

epilepsy and you...epilepsy and you is an online self-management programme for people with epilepsy....

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