Holidays with ME

 Last week we went away for a few days on a mini-holiday at a very nice spa hotel in the south coast.  Given the unusually beautiful and sunny weather we’ve been having, it was absolutely lovely and I was suprised how well I could cope with the trip. That’s another sign showing that I am gradually getting better.

But as my previous holidays have not been as easy as this one, I wanted to write a few words about what holidays mean for people with ME/CFS.

While a holiday is a time to recharge batteries for someone healthy, for people with ME going away is never a trivial exercise and it often takes more energy than they gain from it.  If you are severely affected, like I have been, it can knock you back for a few months afterwards. This is something that I have found most “normal & healthy” people find it difficult to appreciate (which is understandable as I probably wouldn’t really understand it myself if I hadn’t experienced it personally).Cow Parsley

People can normally appreciate that the travelling process itself can make you more tired, but they normally assume that once you get to your holiday destination, you can rest and after a few days you’ll be ok. Unfortunately it is not as easy as that. Firstly, recovering from the holiday preparations and the travel itself probably takes longer than the actual holiday. And being away from home and the associated logistics such as meals take a lot of energy.

For the last three years I have been able to cope with going away once a year. Foreign holidays have not been possible, as flights and airports would be too energy draining, even in a wheelchair. I have found that staying in self-catering accommodation is the easiest choice, as it gives you more flexibility with meals and you don’t need to leave a room whenever someone wants to clean it. Hotels are often large buildings with long corridors and if they are in an old building they are not necessarily that wheelchair friendly.

Eating out is suprisingly energy consuming. In restaurants, you need to be able to sit up for at least an hour or so, and the background noice makes the process very tiring. If you are unlucky enough to suffer from a slow service, the meal can take longer than you can comfortably cope with. When I was very ill, I just couldn’t manage meals out every day, let alone several times a day.

So if it is so difficult, why bother going on holiday at all? Well, if you are very ill, you probably can’t. But most people who can possibly cope with one, probably will want to go on holiday somewhere different every now and then. Even if on balance a holiday takes more energy than it gives you, sometimes you just need a change of scenery. Particularly if you are housebound, occasionally you just need a different set of walls to look at.

And often, while on holiday, people with ME feel they are coping pretty well – it’s the adrenaline from having a nice change, a bit of fun and excitement that keeps you going. The tiredness often hits you afterwards, once you get home. If you are able to find a holiday location that makes the logistics manageable and the process as easy as possible, then the psychological benefit from a holiday can outweigh the physical cost involved. At least for me, the set back afterwards, even if it lasts 8-10 weeks, is just a price worth paying.