As I got older, and my health continued to decline, I kept myself locked away from not only an ‘outside’ social life, but from travelling.

I’d always loved going abroad, and while it was a struggle in my early twenties, I still managed to explore the US, Europe, and parts of Asia (with memorable, once in a lifetime opportunities in both Bhutan and India).

But, as my mum once said “you can’t even get to Baker Street, how the hell are you meant to get to India?!”, travelling soon took a back seat in my life. I mean, I struggled to get out of bed for the day in London, let alone jetting off to new and exciting (or even old and well-trodden) places.

But, as I’ve been trying to rebuild a ‘life’ with chronic illness, so too have I started to add travel back into it. It started with a successful weekend trip to Paris on the Eurostar (the previous year’s attempt had sent me back home 36 hours later after badly dislocating my knee at the Holocaust Museum #glam), my first flight in years to Germany, where I nearly passed out on the way (but survived!), and I have recently returned from a two-week stint to Israel, where the treatment by staff at the airport has made me never want to return.

ableism

I’m not going to lie. Travelling is hard. Especially when pain and fatigue are a constant companion. I’m writing this wrapped up in my bed, well into my second week of recovery from that holiday. But I did learn a few things along the way that I’d like to share with you today (and that have made me just the tiniest bit less scared about heading to Berlin for New Year).

 

1) Wheelchairs are your friend

Airports, museums, and anywhere else you can rent a wheelchair makes life infinitely easier. I wish I had my own chair, but due to the fluctuating nature of my conditions, it’s not feasible right now. I can’t even explain how much pain and energy I save even from half an hour sitting down and avoiding the crowds. It also enables me to do and experience more when I’m away.

It’s also fun to see the look of confusion when I walk up to a wheelchair desk and tell them it’s for me!

 

2) Most places make me long for the accessibility of London

That’s really saying something, because accessibility here is still pretty terrible. It’s good to be prepared for cobblestone streets, never-ending stairs, dirt tracks, terrible drivers, and people even less willing to offer help than you’re used to.

 

3) I may have to rethink my entire wardrobe.

For the first time in my life, I chose to wear the knee supports my mum first got for me when I was 11.

They’re chunky, they’re ugly, but oh my gosh did the make the times I did try and walk around that much easier. I wore long skirts and wide-legged trousers to prevent the inevitable under-jeans bunching, and I’m considering wearing them whenever I go out now.

 

4) Don’t be jealous or upset if there’s something you can’t do.

Staying in and resting is a non-negotiable for me, even on holiday. And there are some things that will literally be impossible for me to do on a trip.

Those things shouldn’t stop my travel companion from going on a 5am hike or running on the beach. There’s no point getting jealous and upset about it. I’ll see all the pictures and hear about it after!

 

5) Plan, Plan, and plan some more.

That being said, I wish I was the type of person that could be spontaneous. Who could run and play in the sea or go and get lost in a city, but it’s often not feasible or safe to do so.

So, whilst there are things that I wouldn’t want to do, or things that I know will be impossible, that doesn’t mean that I shouldn’t be able to enjoy my holiday and find ways so that I can participate in as much as I want/can.

I’ve found that coach tours that older people take often require a lot less walking than other stuff, I plan ‘wheelchair’ activities around more difficult ones, I figure out the easiest way to get anywhere I need to go (even if I do end up spending more money on taxi fares), I stay in an Air BnB so that we don’t have to constantly go out for food (although don’t do what I did and get places with stairs that left you trapped in bed half the time!), and I plan in a lot (A LOT) of rest days.

It’s important that whoever I travel with is understanding and ok with all of this, and will help me figure out a schedule that works for both of us. And will keep me companies on rest days with a good old Netflix and local pastry binge.

 

6) Enough with the embarrassment

I’m so over being embarrassed to ask for help. To explain why I need things a certain way. To have people look me up and down, see a ‘healthy-looking’ 28 year old, and yell and dismiss me even when I’ve booked assistance (here’s looking at you, Ben Gurion).

My beautiful apartment in Tel Aviv had loud construction works right outside from 7 in the morning that we weren’t told would be there. It was loud and interrupting my non-negotiable, nothing is more important, rest time. So I made a complaint.

As with most of the stuff I ‘complain’ about when I’m doing it for accessibility or health reasons, it’s not actually complaining. I’m just trying to make sure that I’m supported and living in a way that doesn’t make me sicker. Because not getting that rest time will impact my ability to do anything on the tip.

And I am so over feeling bad for that. My health comes first. Always.

Better not get in my way!

 

7) Be proud.

I’m honestly so proud of myself for surviving my holiday. Because that’s what it feels like.

It was hard, painful, and exhausting, but I really miss travelling. Even though my experience of it now is so different from how it used to be.

I was so sick of my health dictating everything. And while it dictates pretty much every move I make, I don’t want it to be what stops me from trying to see and do what I want. Even if today I was wrapped up in a sheet fort too exhausted to move.

Most people probably don’t recognise how difficult it can be to travel when sick, so taking yourself out of your comfort zone is a really brave thing. Be proud of everything you did…even if you spent most of the time at the hotel.

I can honestly say that the idea of travelling still terrifies me, but I’m working on it trip by trip.

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