Navigating ME / CFS and Fibromyalgia: On Holiday with ME

Off on Holiday or a Short Break? Handy Hints to Maintain Your Wellbeing Whilst You Are Away.

I used to really look forward to my holidays, but when I became ill with ME, the thought of going away… honestly – it became a bit of an ordeal for me.

This can happen when you are struggling with ME / CFS or Fibromyalgia because often, the routines and structures that we have put in place in our daily lives can help to keep us balanced and in a state of homeostasis. You learn pretty quickly that doing something you wouldn’t normally do or pushing your energy quota further than you usually would can result in the punishment that is a relapse.

And holidays are one of the biggest times when these routines and structures fall away. It’s harder to measure how much energy you are expending, relative to what you would normally do, and easier to stumble into the realms of doing too much.

I also found that I would approach a holiday with fear and anxiety, chewing over the ‘what ifs’:

  • What if the flight knackers me?

  • What if the motorways are jammed?

  • What if I overdo it?

  • What if I have to stand up to queue at the airport?

  • What if I need to rest?

  • What if people have expectations of me that I just can’t fulfil (this was a huge one for me)

  • What if they don’t understand why I can’t do some activities?

And this alone – the worry about how I would handle it all - was enough to drain my energy and leave me a tired and wired wreck, before I had even packed my flipflops!

So what can you do to make your holiday a thing to look forward to?

1.      Control the controllables

A pair of hands holding a small bottle of essential oil - how to look after your needs on holiday with chronic illness

What are the things at home that keep you on an even keel? How could you replicate them whilst you are away? This might include things like:

  • Foods and supplements – what keeps you feeling good, and what depletes you?

  • Time can lose meaning on holiday; what reminders do you need in order to to remember to take vits or other health-sustaining things?

  • Environment – need it cold, dark and peaceful in order to get a good night’s sleep? How does your choice of hotel support this? (i.e. a hotel with no air con in the party capital of Tenerife was NOT a good choice for me at my worst!).

  • What else would help make you really comfortable? Eye masks? Handheld fan? Cooling face spray? Favourite fluffy blanket? Some lovely calming essential oils? (Neal’s Yard Women’s Balance is something I always travel with).

  • Sensitive to EMFs and WiFi? (a lot of us are!). Could you take a grounding sheet or energy dots to help fend off the ubiquitous hotel WiFi so you can get a good, uninterrupted night’s sleep?


2.      Ask for what you need

sun loungers and palm leaf umbrella next to a crystal blue swimming pool - ask for what you need when on holiday with a chronic illness

You might be travelling with family, friends or partners – what can you ask them for that will make your holiday experience smoother? Here are some examples of things that helped me: (you can probably tell that these are mostly directed towards my husband!):

  • If we’re getting a 7am flight, maybe booking into an airport hotel the night before might be sensible – just saying!

  • Let’s not make massive plans for the first couple of days away – lying by the pool might help us both recharge and orientate ourselves in our new holiday location.

  • There will be times when I will need to just lie down and take it easy – doing this will help me be more available to you later in the holiday, so we can do some fun stuff then.

  • There’s a chance I may ask for assistance at the airport if the queues are very long. I may well need you to help me do that – is that cool?

  • There may be days when I don’t feel up to getting down to the breakfast buffet before it finishes at 10am – I may well be asking you to stuff some sausages and bacon in your pockets to bring back upstairs to me when this happens!

  • And sometimes, honestly, it can be yourself that you need to ask permission from – to not push yourself beyond where you feel good, and to allow yourself to retreat to a shady spot, lie down and relax – and to enjoy that!


3.      Don’t worry (be happy)

a woman writing in a red journal - Journalling may help to process anxious thought patterns relating to going on holiday with chronic illness

This is definitely easier said than done, but if you are able to reduce down any anxiety about going away, this will really help take your body out of ‘fight or flight’ and into your lovely healing ‘rest and digest’ state. What would help you replace the worry demons with positive anticipation instead?

  • Just noticing any anxious thought patterns ahead of your break will help you to identify what is worrying you.

  • Is there something practical you need to do to get it out of your system?

  • Journaling may help to really pinpoint what the issue is, and help you understand what you can do about it. It might fall into one of these categories:

  1. A controllable that you can control (see point 1)

  2. Something you need to ask for (see point 2)

  3. Something that you can neither control nor mitigate with a request. If this is the case, what impact does this have on you? Is it manageable? Can you go on this holiday whilst still honouring your wellbeing above all else? If not, what do you want to do about that?

The thing to remember is that this is our holiday – our ‘time off for good behaviour’ -  and we absolutely deserve to have the time away that lets us look after our health and wellbeing, and that allows us to return home feeling like we’ve really had a nourishing break.

Wishing you all happy, healthful holidays

Anne x