From InterAction 114, published Autumn 2023
Finding ways to see the world
The M.E. community shares practical tips for enjoying holidays adapted to your needs – as well as ideas for exploring from home.
M.E. can shrink the world; it certainly feels like it. What others find easy, you find difficult or impossible. What you can manage is dependent on the severity of your symptoms at any one time.
We asked people in our M.E. Friends Online forum and on social media for thoughts and advice on travelling. One response was simply: “I wish.” For many with M.E., travel is a luxury their energy cannot begin to afford. It’s hard enough getting to medical appointments.
For those who can manage some kind of travel, some common themes have emerged to help:
Pacing and routine
Keep as much of your normal routine as possible. Where you are more active, balance this with regular rests and be aware of your baseline.
Ellie has a strict routine on holiday:
“I always read in bed to start the day, then do yoga to soothe my aching muscles, go out for a few hours, come back and meditate then nap and go out for a few more hours.”
No one can anticipate everything, but by recognising what you find hardest, you can prepare as much as you can. Give yourself time to plan. Research what you can – or ask a friend or family member to help you with this.
“I pack slowly over a couple of months so I can rest the two weeks leading up to my trip,” says Cupcake (on our forum). “This includes a separate bag for all medications and supplements. Bring prescriptions [and] medications in boxes with prescription labels.”
If you find yourself getting anxious about the holiday, allow yourself time to switch off, breathe and do the things that calm you.
“I got a foot hammock which clips over lap tray hinges and a gel cushion, as I can’t sit upright without more pain, and my worsened travel experiences were a thing of the past.” – Karla
Be gentle with yourself
If you’re intending to travel with others, it’s worth checking they understand your needs and knowing that you can relax in their company.
“Go with someone who isn’t tiring and demanding,” Lara says. “Wear things that are comfortable but also make you feel nice. Remember you’re on holiday so do what makes you feel good and feels restorative.”
We all find different things relaxing! How does this interact with your health needs? Ask yourself: what length of journey can I manage? What transport do I find easiest and at what time of day? Factor in rest before and after any journey so that you have some ‘spoons’ of energy in the bank and time to replenish.
When does your body most need rest? Factor this into daily plans.
“I tend to book places in the centre of a city so I can always get back quickly [to bed],” says Ellie, “or be prepared to spend money on taxis.”
Many of you recommend using dark glasses (for both daylight and also glare from night-time road travel), eye masks, ear plugs or ear defenders, suitable snacks, cushions or pillows, items for pain relief and a bottle of water to keep hydrated – “whatever is personal and needed by you”, says Naomi.
Tell people what you need
Don’t be embarrassed to ask for help. Book wheelchairs as needed and where possible. Many of you mentioned wearing a sunflower lanyard (visit hdsunflower.com).
“I can’t strongly enough recommend getting one of these,” says Claire, who recently had a trip to Florida. “I wore a lanyard and a wrist band… The moment I set foot in the airport the staff walked directly up to me and placed me in the assistance queue, meaning next to no wait and the lady that checked us in was so helpful.”
“Splurge on the all-inclusive,” suggests Paula. A package holiday booked via a reputable travel company means there will usually be a company rep if needed, plus any transfers will be sorted for you.
Ask questions of the holiday provider when booking. If you can, get in touch with the accommodation owner to get a sense of whether it is suitable.
“Agencies might be able to tell you if there’s a wheelchair ramp, but if you are sensitive to noise or chemicals, only owners will be able to tell you if they use furniture polish or if their neighbours are in the middle of building an extension!” says Juliet. “Ask specific questions (eg. is the cottage near a school playground) rather than just saying ‘is it noisy?’ as noisy means different things to different people.”
“I’ve learned to speak up. I’m young and ‘don’t look ill’ so if I need a seat on a bus or train, I will say so.” – Megan
Look for a view
Consider places with balconies, rooms with a view or gardens with shade so you can enjoy peace and sanctuary from your chair or bed.
“I picked a cabin that was quiet, with views on all sides,” says Cupcake. “There were views of rolling hills in all directions, forests in the distance, huge skies, and sheep with lambs outside.”
“Beach holidays can be good… once I’ve made it onto the beach, as long as I have a comfy beach chair, I can stay there for hours without it being too tiring, as long as it’s not very windy,” adds Katherine. “You can get a sun parasol if you’re sensitive to the sun. Similarly, when going abroad, getting a villa with its own pool is expensive, but means you just have to go outside to feel like you’re on holiday and it doesn’t matter if you’re not well enough to go on outings.”
Heather suggests finding schemes where you can hire a beach wheelchair: tinyurl.com/ beachwheelchairs
Give yourself a ‘back-out’ plan
Ask insurance companies if they cover M.E. and see if others with M.E. have recommendations (Eilidh, for example, uses Staysure).
Look for places that allow last-minute cancellation.
“This reduces the number of places you can go and can be more expensive,” says Katherine, “but I think it’s worth the peace of mind knowing that, if I’m not well enough nearer the time, I can cancel.”
Adjusting back to home-based routines takes time after being away. Let yourself have your recharge time; don’t judge yourself for needing it. People in your life might want to contact you or ask you questions – don’t be afraid to say “can we check in next week when I have more energy?” Take the time you need.
“If you’re worried about relapsing, start off by travelling somewhere closer to home and build up to further destinations. Going away for slightly longer, rather than just a weekend, gives you a chance to build in rest days.” – Katherine
When you can’t travel
When you are trapped by severe symptoms of this devastating illness, it’s hard to feel part of the outside world in any capacity. Eva describes travel as “torture” and a waste of time and money. “If you do something, you pay for it so dearly later,” she says, “so [it’s] rarely ever worth it.”
Some members of our M.E. Friends Online forum community use their imaginations to think about where they would love to go:
“It is a frustration for many of us,” says Eskdale23, one regular forum user. “In my first couple of years with M.E. I was sad I couldn’t visit friends, who mostly live some distance away. I’m so grateful for the friends I’ve made on the forum who I can ’meet’ from bed and even go on virtual trips with to fancy hotels, yachts, scenic places... “We pick a location and share links to accommodation and things to do are shared – then anyone who wants to can write down what they and other people are doing. We let our imagination run wild and do all sorts of things, like dancing for hours, going on long walks and eating and drinking things we can’t tolerate in real life.” “I find the app Duolingo a good place to start with learning other languages in small snippets,” adds Bambi, who likes learning about the world and other cultures. “Watching short YouTube vlogs from different countries is a way to ‘visit’ different locations. Googling famous landmarks is a way to dip into things in other countries too. I once did an online course via Futurelearn where we explored Ancient Rome, which included short videos filmed in modern day Rome – a bit of sightseeing and also a way to learn about the history and culture of Rome.”
If your symptoms allow, there are ways to enjoy the world from home. The Virtual Vacation website is a hub to explore the world – via foot, train or car. You can even see the world through a plane window: https://virtualvacation.us For arts and culture, many museums and art galleries now have tours and exhibitions online. If there are ones that interest you, it’s worth looking online to see if they have this facility (for example, the Louvre: tinyurl.com/virtualouvre).
You can explore the Vatican (tinyurl.com/tourvatican). Zoos and aquariums often have resources online, and don’t forget live ‘wildlife cams’ if you like to watch wildlife beyond your own window. If you want to go that bit further, you can leave the earth! Try this peaceful tour of the moon, from NASA: tinyurl.com/visitmoon
Remember still to pace yourself while watching – know your limits and set a time for switching off. Thankfully on a virtual walk you never need to worry about having energy for the return journey.
If screens are difficult, try looking at pictures and letting them inspire your imagination, listening to quiet music from a certain country or culture, holding a holiday souvenir from a friend, reading or listening to books about other places which interest you – these are all ways of learning about and appreciating our varied, vibrant earth.
We recognise that, for some, these ideas might feel like small consolation. Don’t forget you can call our support team on 0117 927 9551 – you don’t have to feel alone. They will get back to you as soon as they can.