With June in full swing, many of us may be planning our festival summer. But we know for people with epilepsy social activities can sometimes feel out of reach.
With the launch of our new campaign, If I told you…, many of you took to our social media channels to tell us your experiences. People worried about having seizures and ‘ruining’ events like parties or baby showers, others worried about what friends would do or say if they saw them have a seizure – and everything that comes with it. Some worried friends would abandon them if they knew about their epilepsy or think they’re unreliable if they cancel plans.
Worries like that can lead people to miss out on things they want to do and experience and become more isolated.
But social events don’t have to be out of reach for people with epilepsy. If you’ve had your eye on that festival and wondered how to make it work, we share some tips to keep yourself safe and keep seizures at bay as much as possible.
Plan ahead
Between packing tents and organising train tickets, it’s important to think through what you’ll need. Make sure to take enough of your epilepsy medication for the time you’re away. Some people take extra in case they’re delayed getting back.
Think about how to store your medication while you’re away – they need to be in a cool, dry place. Set alarms to make sure you remember to take your medicines as prescribed by your doctor
Pack anything else you might need, like snacks, if missing meals is a trigger for you. You can speak to your doctor or epilepsy specialist nurse for more specific advice for you.
Think about triggers
Some people have seizure triggers, which make it more likely that a seizure could happen. For some people it’s stress, missing meals or not getting enough sleep. For others, it could be flashing lights or images (photosensitive epilepsy) or drinking too much alcohol.
If you have seizure triggers, think about how to avoid those. For example, bring an air mattress or something comfortable to sleep on so you can get plenty of rest if tiredness is a trigger for you.
If you drink alcohol, find out more about the risks and drink safely, as this can be a seizure trigger for some people with epilepsy.
Check the weather and if it’s going to be a hot one, check out our tips for staying cool and safe in the hot weather. Don’t forget – slather on the sun cream, stay in the shade, drink lots of water.
Seizure safety
Have someone with you, and, where possible, be with someone who knows about your epilepsy and how to help if you have a seizure.
You can download our new image and save it as your lockscreen. It’s a subtle but key reminder for others on how to help you if you have a seizure.
You can also update the medical ID on your phone – you can watch our nifty how-to videos for iPhone and android to help you with that. It can provide vital medical information about your epilepsy in case of an emergency.
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Supporting others with epilepsy
If you’re going with someone who has epilepsy, you can do a lot to make them feel safe and supported. Find out more about seizure first aid and ask them more about their specific epilepsy and how best to help them. There’s more information on epilepsy, seizures and supporting someone at a festival on our website.
Whichever festival you go to this year, we hope you have a brilliant time. If you are an avid festival goer with epilepsy, let us know your top tips for staying safe!
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