Travelling can be stressful at the best of times, let alone when you’re also disabled and in chronic pain. Whilst it’s possible to get things like assisted travel, these things only go so far towards actually helping.
So what are the essential things to remember when travelling?
1) Assisted travel. It sucks and the service leaves much to be desired but we need it.
Someone essentially helps you onto the train. That’s pretty much where assisted travel begins and ends. It’s not very accommodating and they do the bare minimum and often not very well at that.
For anxious travellers it can be difficult. Some people might struggle (I’m one of them) with the direct communication and, in my experience, the quality of service can very much depend on who you get and where you are. They tend to be quite accommodating in London stations (I tend to always land in Paddington), but in smaller stations (such as Cheltenham) the service can be lacking. Which is frustrating since it’s so essential: without assistance it’s pretty impossible to get a wheelchair on a train (the ramps are staff-access only) and even if it was possible, there’s the other passengers and the limited time available to consider. And all of this squeezed into the tiny infinitesimal minutes between the platform being announced, getting there, and then the train pulling out. It’s a mess, even with assistance.
So assisted travel isn’t something we can change and we need it but hey, the rest of the journey doesn’t have to be a nightmare.
2) Food and water!
Do yourself a favour and don’t rely on train station food. Not only is it expensive but it might not fit in with any dietary requirements you may have. I know lots of spoonies have dietary needs (me!) and you will not find them met in most restaurants or food places, let alone a train station café or shop. It might be annoying to prep the food, but you will thank Past You. Make sure to plan meals (or at least snacks) for each meal slot you’ll be traveling for. Having enough water is important, too, since there’s nothing worse than being dehydrated whilst traveling.
Traveling can trigger and exaggerate a lot of pain and discomfort and whilst pain meds might not entirely fix that (you’re not likely to start really feeling better until you’re done with the infernal traveling), it’s a start and it’s essential. If you have regular times when you take your medication, it might be a good plan to adjust those times around when you’re travelling, so you can medicate accordingly.
4) Travel aids/therapy aids
Anything from neck support pillows to lumbar pillows – if you think it might help, take it with you. You might feel a little self-conscious on the train (because oh but people do love to stare) but weigh up how useful they’ll be for you and decide if it’s worth carrying the extra bulk. I personally can’t travel without some kind of pillow to lean on, otherwise my shoulders and arms hurt even more.
Don’t underestimate now much you need to keep yourself distracted as you’re travelling. Not only is there the pain to contend with, but there’s the stress and anxiety of traveling. I always have music when I travel and I always read. You might like to watch something on a tablet or laptop (especially if you have WiFi) or maybe arrange to chat with friends online whilst you’re traveling. Or you could always hope that there’s something interesting to live tweet if that will keep you more entertained!
Make sure you know what you’re doing, where you’re going and when. Each train or plane or taxi, è every connection or change. You need to know what you’re doing. It’s hard enough to travel, without then needing the presence of mind to look at train tickets and check times and figure all kinds of other stuff out. Ideally you need to know what every step of your journey entails, from the train seat you’ve got to the times of arrival and the prospective prices of taxis. All these things can be found easily online and, instead of forcing yourself to remember them, you should write them somewhere on your phone or tablet, or even in a planner that you keep with you. This will mean that you’re always in control, even if you don’t feel it whilst travelling!