By Jack Croxall

Even before I was ill I found traveling exhausting. The planning, stress and uncertainty of it all is inherently draining even if you’re sitting in a passenger seat for most of a given journey. It was even worse when I first developed CFS, travel was literally a complete no-go. But, since then, and with a moderate increase in my health and mobility, I am now able to go out at least occasionally. It’s still difficult, but what follows are my tips for traveling with ME/CFS.

Pick Your Battles

Firstly, before you agree to go to any family event, to see your friends or to go out and do anything of significance, you should research the destination and think about what you’ll be doing once you get there. You need to decide whether or not you have the energy for it. It’s hard because you might look well, and therefore people might expect you to join in with all the usual get-togethers, but if you have CFS, often you just can’t. And you shouldn’t be afraid to say no. I always make travel decisions based on three things: the last time I saw the person/people in question, the distance, and the activity. It can feel ruthless deciding on these parameters alone, but if I’ve already seen a particular person recently, the destination is too far away or the activity is too draining, I say no. My health is more important.

The Journey Is Part of the Trip

Strangely, it took me a long time to realise this. I used to just jump in a car, chat with whoever else was in there, often finding myself shattered by the time of arrival. I wasn’t factoring in the energy the journey would take out of me. Once I realised my mistake, I set about thinking of ways to rectify it. I’ve found that the key is sitting position, or more specifically, reclining position. I (and I think many other CFS sufferers can relate) am in a constant battle when I’m vertical. Standing or sitting brings on aches, pains, concentration issues, and the only relief from these symptoms is to get horizontal. So that’s what I do. The front passenger seat can recline pretty far back in most modern cars (you must still wear your seat belt!), and, if necessary, the curvature of the seat can be straightened with some strategic pillow placement to increase comfort.

You Don’t Have to Act Well

Now for the activity, the reason you’re putting yourself through all of this. When you go to events or get-togethers, listen to your body. You will know when you need to take a time out and you need to make sure that you do so. You don’t have to act well for the benefit of any other people present, even though we sometimes feel pressure to do just that. If you need a rest, don’t be afraid to take one. I’ve written previously that I will lie down wherever I am if I need to, and I really mean it! Any sofa, patch of grass or spare bedroom can be a Godsend. Don’t be afraid to take an opportunity to rest when you need one. If anyone objects, leave them to it and put yourself and your health first.

Cancel if Necessary

This one is simple. If you wake up on the morning of a journey and you’re not up to it, cancel. I know this is much easier said than done, and people might even be relying on your presence. But if you need to cancel, and can cancel, please do yourself a favour and do it. Bringing on a crash for the sake of saving face is not worth it. Maybe you can rearrange or get people to come to you. You might be surprised at how understanding (most) people can be.

So that’s my advice for traveling with ME/CFS. Obviously this is not a comprehensive list and I would LOVE to hear your tips so I can try them out too. As always, let me know in the comments section or on Twitter!

Jack Croxall is an author/blogger living in Nottinghamshire, UK. He posts for Allies Everywhere monthly.

Twitter: https://twitter.com/JackCroxall

Site/blog: http://jackcroxall.co.uk

Books: https://www.amazon.com/Jack-Croxall/e/B00BBX48NK

Photos by: Mahir UysalJESHOOTS.COMMesut KayaLiam SimpsonMantas Hesthaven