How to Travel Alone When You Have Seizures

The illustration used for this post is by Debbie Powell for Uppercase Magazine

Travelling long distances on your own is always going to be stressful – hauling along a ridiculously heavy suitcase that has one of those pingy wheels that carries the ever-present threat of causing your  suitcase to veer off in a wholly unprecedented direction which is completely the opposite of where you want it to go, feeling the need to check the departures board against your ticket thousands of times (and then asking someone anyway, just to be safe) and making sure that you leave the house with approximately three hours of wiggle room * just in case *.

 

I knew I’d be facing the typical ‘Brit on a journey’ (distance wise, not emotionally or anything) challenges, but I was also was feeling really anxious about anything happening  medically while I was travelling. And it’s a pretty vicious circle – I get anxious about having a seizure which makes me have a seizure, which makes me anxious… and on and on until the end of time. My seizures, while we’re not really 100% sure what does cause them, aren’t epileptic in that they (generally) last around a minute at most, I can hear what’s going on while I’m seizing, and I’m pretty much lucid and therefore very embarrassed as soon as I regain consciousness.

 

Travelling alone with any sort of illness that might cause you to black out or seize is quite worrying – but no one really knows why. Is it because it’s embarrassing? I don’t know. Logically, I shouldn’t get embarrassed about having a little floor boogie; I can’t help it happening, I just get absolutely mortified at the thought of being the centre of attention or being the cause of a panic. I keep trying to tell myself that if I saw someone else have a seizure, I would categorically not be judging them at all, and would only want to help, but somehow that embarrassment seems to be pretty deeply engrained in me!

 

You probably can expect what happened next (I mean, I probably wouldn’t be writing this post if I hadn’t). On my train from where we live up to London on my way to Kings Cross Station (Harry Potter!!) I had a wobble. It was quite a hefty one and left me with quite a lot of dislocations, so the train made an emergency stop and I had lots of people checking on me to make sure that everything was alright.

 

I felt like a real noodle and apologised quite excessively for disturbing everyone and making the train stop, but the more I thought about it and the more embarrassed I got, the more seizures I had. In the end, I missed my train from Kings Cross to York (only by a couple of minutes, but I missed it nonetheless) because of my wobbles. I had a real panic – I had cancellation protection, but hadn’t seen any option for a flexible ticket, so mine determinedly said ‘NO SERVICE OTHER THAN THE ONE BOOKED CAN BE BOARDED’ or something equally scary like that.

 

I rang mum and dad and they told me to go to the information desk and explain what had happened to see what could be done about getting me there. After a small meltdown in the toilets, I took my really very heavy case and rucksack with me and stumbled my way very inarticulately through the seizure-train fiasco. Once I’d calmed down and explained it a little bit better, the lady at the desk was really helpful and called over the train person for Virgin East Trains (train person? Train attendant? Who knows), and he very kindly said that I would be allowed to get on the next train without having to pay anything extra. A note was written on the back of my ticket and, with some residual anxiety, I headed off to platform 4.

 

As I sat on the train, I started thinking that I’m surely not the only one that’s had this sort of a disaster. So, I’ve decided to write a list for my fellow wobble-prone travellers with some ideas on how to make sure that you get safely from A to B as smoothly as possible. The tips included in this post are just ones that I’ve thought of – keep in mind that my seizures are non-epileptic and that I’m not a doctor, so these might not apply to some seizure-prone peeps but I’ve linked some articles below on travelling with medication (which applies to all medication really, not just for seizures) and whatnot – if you’re not sure about any of these or have any particular problems or worries about going somewhere on your own, talk to a medical professional my friends.

 

Here are some ideas I had:

  • Wear a medical ID bracelet that says that you have seizures – if you can fit the name of your condition on the tag as well then you might as well in case paramedics are called, but I think that explicitly saying that you suffer from seizures is more likely to help people that aren’t in the medical profession, as they may not know what your posh scientific description means. If people are able to find out that seizures are normal for you, they’re going to be at least a little bit less worried. There are loads of places that do medical jewellery – it doesn’t have to look like a medical tag!

 

  • If you fancy, you could also carry a card with you with instructions of what to do when you have a seizure, and when someone could call an ambulance. I sometimes have one in my bag (usually just by chance) which I got from the charity that represents my condition – it gives a brief overview of what I have and says what’s normal for me – that’s the important bit! Know what’s normal for you and what isn’t, so that you know when you might need a helping hand. These cards are a really good idea and I’ve used them more to give out to friends rather than strangers; I feel like it would be a bit of a weird conversation opener to give the person you’re sitting next to on the plane, train or bus, and might just make them feel more worried than prepared.

 

  • If you’re going on a longer journey, it could be handy to alert crew members to the fact that you have seizures and what to do if you have one. If you don’t have a chance to mention it to anyone before you throw yourself about then don’t you fret my friends – they’re highly likely to be trained in first aid or SOMEONE will know what to do, or at least have a pretty solid guess at how to go about it. Again, if you feel that you have a nice rapport going with whoever’s sitting next to you, you could give them a heads-up, but I’ve found that alerting crew members does the trick just fine.

 

Travelling With Medication

I could go on and on about this, but this post is already long enough! When you’re travelling, especially if you’re going abroad, it’s SO important to know how to deal with your medication, no matter what it’s for. Always check the airline guidelines, as well as what’s allowed in the country that you’re going to and keep your tablets in whatever they’re dispensed in – blister packs would be the best, as it’s easier to show that they haven’t been tampered with, with the dispensing label attached and alongside your prescription form. Have a little read of this article which is really helpful, but it would probably be helpful to do some further research too!

Epilepsy Action – Travel Advice for People with Epilepsy

That one’s really good, and applies to seizures other than epileptic ones

NHS – Can I Take My Medication Abroad?

Another super handy site, although this is only for the UK – if you live in a different country, find out more about travelling with medication!