A practical Young Epilepsy guide for the festive season
The Christmas and New Year period brings excitement, but it can also mean changes to your usual routine - school holidays, different sleep patterns, and lots of social activities. For young people living with epilepsy and their families, these disruptions can be challenging, especially when it comes to staying on top of medication and self-care.
This guide shares practical strategies and tips directly from young people with epilepsy, helping you feel prepared, supported, and well over the festive season.
Support children newly diagnosed with epilepsy this Christmas
Why routine changes matter at Christmas
When school is out and day-to-day life looks different, it’s normal to feel a bit unsettled. One young person explained:
Are there things you worry about more when you’re away from school or your usual routine? There’s not many things that I worry about… it’s just a bit weird at first because I’m kind of weird with change, but if it’s just the school holidays… it gives me time to catch up on the sleep that I was struggling to get.
Changes in sleep, meal times, and social events can all affect epilepsy management. It’s common to feel anxious or to struggle with remembering medication when your routine is up in the air. Acknowledging these feelings is the first step to coping well.
Managing medication during the holidays
Keeping up with medication can be harder when days are less structured. One young person shared:
People with epilepsy have to be more aware, more cautious if they’re going to parties… they have to be more aware of their surroundings and what’s going on around them than other people do really.
Another added:
When I’m not in my usual routine… I’m always worried that I may trigger because my seizures are uncontrolled, and most of the time I don’t bring a bottle of water or any liquid to drink with me, and that makes me panic even more.
- Set daily reminders: Use your phone or watch to set alarms for medication, especially if mealtimes or bedtimes change.
- Keep medication visible: Store your medicine somewhere you’ll see it, like by your toothbrush or on your bedside table.
- Plan for late nights: If you’re out or staying up later than usual, take your medication and water with you so you don’t miss a dose.
- Pack an essentials kit: Bring your medication, a bottle of water, and emergency contact details when going out or staying away from home.
Staying prepared: Planning ahead for peace of mind
The best way to reduce stress is to be prepared. Planning ahead means you’re less likely to forget important things and can enjoy the festive fun with confidence.
- Write a checklist: Before leaving the house, check you have your medication, water, and any emergency information.
- Tell someone you trust: Let a friend or family member know about your epilepsy, especially when going to parties or staying somewhere new, so they can support you if you need it.
- Speak up if you need help: As one young person put it:
I went up to the nearest member and said, ‘I don’t mean to alarm you, but I think I might have a seizure.’” It’s always okay to ask for help.
Building and accessing your support network
Being away from your usual support, like school counsellors, can make it harder to talk about worries. One young person explained:
If I ever had a problem and I wanted to speak to a professional about it, like the counsellors, I couldn’t speak to them about it until I went back, and then by the time we did go back, I forgot what I wanted to say.
- Stay in touch with friends and family: Even a quick text or call can make a difference if you’re feeling anxious or alone.
- Join online communities: The Young Epilepsy community is always here to listen and share tips - you’re not on your own.
- Keep a notebook or app: Jot down how you’re feeling or questions you have, so you can remember to talk about them with someone you trust.
Looking after your wellbeing: Rest, self-care, and reaching out
Taking care of yourself is just as important as managing your medication. If you’re feeling tired or anxious, it’s okay to step back or do things differently. One young person explained:
The after school clubs that we had… noticed that I was very exhausted and drained… they just came over to me and offered if I wanted to talk to them, do some colouring, do some singing for people… they were really understanding.
- Make time for rest: Don’t feel pressured to join every activity - listen to your body and rest when you need to.
- Try gentle activities: Drawing, listening to music, or a quiet walk can help you relax and enjoy the season at your own pace.
- Reach out for support: There’s always someone ready to help, whether it’s a friend, family member, or community group.
You’re Never Alone: Connect with Young Epilepsy
Remember, epilepsy doesn’t take a break for Christmas. Whether you’ve recently been diagnosed or have lived with epilepsy for years, there’s a community ready to support you.
Let’s get ready for Christmas together - connect with the Young Epilepsy community for information, understanding, and encouragement throughout the festive season and beyond.
