Tips for travelling with chronic illness (when you’re barely well enough to leave the house)

Don’t expect this to be one of those “plan ahead for your international long-haul flight, try not to see too many amazing attractions in one day” kind of posts. This post is for those spoonies who can barely make it 1 hour out of the house, let alone travelling to another town; for whom a few hundred km’s may as well be around the world. (Toni Bernhard has an excellent article about how minor holidays become massive trips with chronic illness on Psychology Today.)

These are my tips for surviving a short yet major (for me) trip to Geelong (2 hours away), which would have been a destination for a fun day out before I fell ill. If you’ve been reading my blog recently, you’d know I didn’t cope that well and am paying for it dearly now, but if I hadn’t planned ahead and made accomodations, I wouldn’t have made it through the week at all.

Geelong Waterfront.
“Geelong, Geelong it’s a hell of a town: the schoolyard’s up and the shopping mall’s down.”
Plan ahead

Well, duh. But like I said, chronic illness complicates things, and a short stay which would have been the subject of a night’s quick preparation in the past became something which required several weeks’ (months?) planning with ME/CFS.

Planning ahead helps you to consider the conditions: what will the weather be like? Do I have medical appointments that week (month)? And it also gives you plenty of prep time to pack and gather the supplies you may need (such as extra scripts, booking mobility devices etc).

Choose your accomodation

This is vital for staying away as a spoonie. It’s no good going away only to discover your hotel has a flight of stairs to your room that you can’t climb! Luckily, if you go online you can take a good look at photos of potential accomodation, read descriptions and reviews, and contact owners with any questions. (How did people book accomodation before the internet?)

Aspects to consider: how accessible is the accomodation (both getting to it, and around it)? Where is it located (if you have noise sensitivities, the heart of the city might not be a great choice)? Does it have heating and cooling facilities? What is the bathroom like (because there’s no fucking way I could climb into a shower bath)?

An image of a luxury bathroom with a shower bath.
Shower bath: fuck no.
Pack over time

It occurred to me shortly after booking that there was no way I could pack the night, or even few days before, and still have the energy to get in the car to leave. So I decided to choose a suitcase and leave it on my bedroom floor for at least a month beforehand, adding to it as I went (then ticking it off my checklist). This conserved vital energy for the holiday itself.

Acquire “travel duplicates”

I’m aware this is not feasible for everyone, financially or practically, but it’s a strategy that made a big difference in my ability to go away. If I was to pack over time as I mentioned above, I needed to have doubles of items that I use every day, so I could pack some and keep using others.

A suitcase.
Not even joking, this suitcase stayed in my bedroom for at least a month while I packed. (It was only 2.4kg and I scored it on special in store.)

To that end, I bought extras of cheap items just for travel that could stay in my suitcase indefinitely (underwear, extra pair of PJs, wipes and other toiletries) and prepared minis/decants of other items I wished to bring (shampoo, conditioner, moisturiser etc in squeeze bottles, single sheets of medication in spare empty packets). That way, I didn’t have to rely on unpacking when I came home to use what I needed.

Consider your strength (and accomodate for it)

If you’re a spoonie, you’re probably already well aware of what you are physically capable of.* It’s something you need to consider even more carefully when travelling. For example, how heavy is your suitcase, and can you carry/drag it when fully packed? Do you have the dexterity to operate travel containers of toiletries? (Turns out I can’t, and bought cute lil silicone squeeze bottles to hold my shampoo etc.)

Squeeze travel bottles.
So. Damn. Cute. (Available from Amazon.com.au.)

The same goes for mobility. If you’re not sure you can navigate your travel destination, plan ahead to ensure you have the mobility device(s) you need to enjoy your holiday as best you can. Many shopping centres and other venues, such as beaches and zoos, have mobility scooters for hire.

A man drives a mobility scooter down a lane, past paddocks.
Beep beep, motherfuckers.
Make your accomodation accessible

So you’ve found the perfect place, but it’s missing a shower rail. Or you can’t guarantee that any bed will suit your finicky body. What’s a spoonie to do? Bring your own, of course.

My body won’t accept hard mattresses – not cos I’m picky about comfort or will have a bad night’s sleep, but because “resting” on a hard surface isn’t rest at all, it’s physical exertion which will inevitably lead to an ME crash. So I brought along a cheap memory foam mattress topper from eBay (I’ve heard Amazon are a good source for the same in the US).

A mattress topper.
I don’t know what is going on here but it was the best picture I could find of my ridiculously large mattress topper. From Oz Auction on eBay.

We initially thought our chosen accomodation didn’t have a shower rail, so along came a suction-cup rail, also from eBay. (Thank goodness we didn’t have to use it, as I’m not convinced of the weight-baring capabilities of the suction.) And of course, I had to bring my trusty shower chair, which makes bathing myself actually possible. (This was rather bulky in the car, so if you’ve got a good source for foldable shower chairs, hit me up.)

A shower chair on a background of love hearts
I’ve shared this picture before, and I’ll share it again. Shower chair is love, shower chair is life.
Simplify your routine

Do I like wearing makeup? Fuck yeh. Would I have the energy to apply a full face, go out in a city, come home and remove it (with extra toiletries I would have had to pack)? Fuck no.

With all the energy required for being in a strange place, doing more for myself, and cramming more activity into one week than I’d usually achieve in a month, I wouldn’t even have the energy to wash my face properly, let alone deal with makeup. So I compromised and brought micellar wipes for everyday cleansing, my usual lightweight sunscreen, and a lippie or two if I wanted to feel more colourful.**

You could apply this strategy to near everything – bringing preprepared meals or ordering take out instead of cooking or dining out, packing clothes which require minimal effort to don and remove, relying on wipes if you may not have the spoons for bathing. As you’ll be expending so much energy already, any cutbacks in other areas will only help you get through the day more easily, with less payback.

Plan time for rest

This is probably already #1 on your list anyway, but it bears emphasising. As a spoonie, you might be able to achieve 1/2, 1/5, 1/10 or 1/100 of what a healthy person can, but you will always need to do less and rest more in between.

For instance, I knew the car trip there and back would be brutal, so I scheduled those 2 days just for travel and rest. Then I elected to loosely plan 1-2 activities for the other 3 days, with the possibility of cancelling and resting if need be. The remainder of the time: rest.

Myer store.
I think we all know one of those things was MYER.
Know that it’s ok to feel sick

Before I left, I was very worried that I would be so sick when I arrived in Geelong that all I’d be able to do was lie in bed (and possibly groan a lot). Mum reassured me that it was ok to be sick on holiday – it just means you are sick in another place.

Well, I could both do more and felt a lot worse than I envisaged, but being prepared for a total shitstorm helped me deal with what was to come (in at least some small way).

 

What are your tips for travel, fellow spoonies?

 

 

 

*In a broad sense, that is. Specifically? That shit will still fuck you up on any given day without warning.

**I really took up makeup again as a hobby for those days when I’m too ill to go out or sit up at the sewing machine, but still have enough strength to sit upright and do something. Applying and removing makeup = 1 day’s worth of energy.

Author: Siobhan S

20 something, living in country Australia. Spoonie profile: ME/CFS, dysautonomia, anxiety. All about sewing, knitting and food. Unapologetic feminist and disability advocate.

11 thoughts on “Tips for travelling with chronic illness (when you’re barely well enough to leave the house)”

  1. Oh yes!!! Did 2 nights away for a reunion in London recently – which is 40 mins away! – and it nearly killed me. Add the stress of driving in (I can’t manage a train and the tube in a wheelchair is a nightmare too even with hubby), finding parking and being exhausted by the journey…..such obvious tips Siobhan, but for us spoonies really valuable (and a great prompt on those bloody awful brain fog days!!)….from a fellow spoonie who is pleased to have found you!!

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  2. I sleep a lot before we leave. I cannot in any way be tired/weak and travel. I used to drive. Now its painful just to sit in the van 2 hours.We go to our property in Northern MN every summer. We stay 4 weeks or 2 weeks nothing less because I have to recover, and sleep a lot before we go home. I cannot go home and crash- that takes up to 6 months to recover from.Of course I have everything I need at our property. I cannot be anywhere without air conditioning- number 1 priority.
    And like your wise Mom says, it is being sick in another place.

    Liked by 1 person

    1. Agree on the air conditioning, it’s essential if you have a chronic illness. And it’s important to factor in time to recover from travel too, while you’re there – this was definitely a consideration for me.

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  3. Accepting that it’s okay to be sick while on a break or holiday is hard to do, but important as otherwise we end up either pushing ourselves and feeling worse, or berating ourselves and feeling annoyed to be missing out. Being prepared and having duplicates of various things have been important for me, too, with going anywhere, especially making sure I have extra stoma supplies, mattress topper, etc to take. Great tips, and although you’ve struggled with being ill when you got there and afterwards, you’ve still done incredibly well to do it, rather than to be put off going at all with everything involved.
    Caz xx

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  4. Pack snacks that will give you a little something so you don’t crash big time, immediately, like on the spot. I like dried banana chips. I also yelp areas to know where I can get a smoothie just in case. Seems silly but when you feeling like you’re going to fall flat where you are these little things can really help.

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