Travelling with myalgic encephalomyelitis

How nice would it be to unpack myalgic encephalomyelitis and leave it behind while you go on holidays. I’m just imagining it as a parcel I could take out my suitcase, leaving me more room to pack a snorkel set or a tennis racquet.

I love the little boy at the front with the case, cap, coat, bow tie and sunglasses! Schipol Airport, Amsterdam. Nationaal Archief.

I love the little boy at the front with the case, cap, coat, bow tie and sunglasses!
Schipol Airport, Amsterdam. Nationaal Archief.

Before I took my first holiday with myalgic encephalomyelitis, I searched the web for the advice and asked my world-weary real life friends. My first trip went really well and I’m so glad I went. I’m now planning a trip where I’m travelling on my own for the first time, although staying with friend.

Here is my advice:

Go! Have a holiday, a change of scenery is lovely and it is worth the hassle.

Plan to rest before you go. I don’t make any plans for the week before a holiday and make sure I get lots of rest the last three days before a trip.

Start packing early. I open a suitcase in the spare room a week or two before and put things in as I think of them. Write a packing list. I finish packing at least the day before, except for the medications and supplements.

Stay in one place. If you have any choice, stay in the one place rather than moving locations during your holiday. It’s kind of my new pace! Although I’m not in a rush to get on a cruise, I can see why some people do it.

Book a room with a bath. I walk around more on holidays and my muscles get sore so having a bath is a luxury I’m prepared to pay for. I’m going to put some Epsom salts in my suitcase now.

Carefully pack a carry-on bag. Water bottle, pain and other medication, noise-cancelling headphones, fully charged phone, wallet, paper with flight details on it, almonds and sultanas, a book, a tiny spray bottle of facial mist, sunglasses, notebook and a pen. Nothing too heavy. I pack a cross-body bag to evenly distribute the weight across my body and give me free hands. Consider earplugs, an eye mask and an inflatable neck pillow to try and rest during the journey or you have noise or light sensitivities like I do.

Rest when you can. While I’m waiting, I prop my feet up on my little suitcase and shut my eyes to try and rest. Even if I’m not getting any restorative rest, I feel like I’m not using up energy if I put my feet up, shut my eyes and breath deeply.

Ask for help if you need it. It is easy to request a wheelchair at the airport when you book your flight.

Airline lounges. I gave up my Qantas Club membership  but it is nice to travel with someone who can sign me in. Ask around to see if anyone has a guest pass you can use. They are lovely and quiet with comfortable chairs and I munch on fruit and nuts and drink as much water as I can before the flight.

Eat and drink. I feel so much better when I’m hydrated, I get so thirsty these days. I also need to eat regularly so I factor that into my plans rather than waiting till I’m desperately hungry and then having to search for a place that sells something I can eat.

Relax and take things at your own pace. My travelling companion knows what to expect and that I need breakfast before anything and that I need a rest in the afternoon. I can’t overrule myalgic encephalomyelitis but I know by now that rushing, worrying and pushing myself are a waste of valuable holiday energy!

Take it easy when you get back. I take another week off when I get back. If you feel good, that is a bonus. After my last holiday, my doctor’s advice was “book another holiday”!

Are you going on holidays soon or thinking about it?


About someonesideaofluxury

writing from home with my feet up
This entry was posted in Advice, Life with myalgic encephalomyelitis and tagged , , , , , , . Bookmark the permalink.

5 Responses to Travelling with myalgic encephalomyelitis

  1. Megan S says:

    I’m going on holiday with my mum and sister in December. I’ve booked a wheelchair for the airports and everyone knows what to expect from me energy wise.

  2. Enjoy! I love traveling alone- you get to go at your own pace without feeling guilty if you want to spend the day in the hostel or hotel!

  3. Pingback: Staying with friends, more travel advice | someone's idea of luxury

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