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Flying with Chronic Illness: My top ten tips

Updated: Apr 7, 2020

I have just landed back from 2 months in Australia which is my 2nd time doing a long haul flight and I think 3rd or 4th time flying in general since joining the chronic illness life! From security shouting across the security hall 'these are her laxatives' to being bustled off in Dubai to a private room in my wheelchair trying to explain what a catheter are my tips and airport adventures!

1. Be organised. Then be even more organised. Then still expect to have a last minute panic.

No matter how much advanced warning I gave my various medical teams to prepare letters, fit appointments in around travelling and sort out all my meds and medical still ended up being a last minute rush. When dealing with multiple specialists, medical suppliers and the random-ness of chronic illness life you have to expect delays, mistakes and confusion. I find by accepting there is going to be a last minute rush, always helps.

This year I thought after my 100th trip to Boots (pharmacy) I was done, until a last minute phone call decided to change up some of my meds. Then my catheter company couldn't get all of my catheter valves and we ended up having to do a Christmas eve trip to a random pharmacy. I just remember standing in an aisle in Boots and wanted to burst into tears..but I pulled myself together, decided the post-cry head pain wouldn't help things. Instead I thought it's not my fault and it will all be sorted in the end. Which is was, right at the very end!

2. Think through every step of the journey whilst packing your bags.

You need to travel with all your medical supplies in your hand luggage. This is incase one of your checked in bags get lost so you don't end up without your meds. This often means you have ALOT of stuff with you. In terms of baggage allowance, this is okay you are allowed to go over your weight allowance due to medical supplies (although speak to them first). However I hate it as you have more things to lose and carry around with you everywhere you go.

My trick is to plan what will go in each bag, and then within your bag seperate it into mini bags. I have various pouches, clear bags and luggage organisers so everything is as organised as it can be. I think what can go up in the overhead lockers and what I want in a smaller bag actually with me to use throughout the plane journey. You'll always see someone walk on with no hand luggage whilst I dislocate my shoulder (literally did this year) with all my stuff! It also helps to think through what you'll need to grab at security so you don't have that sweaty panic whilst people are queuing up behind you whilst you try to remember everything you need to put in the tray!

3. Stay calm through security

Usually I am in a sweaty panic as I go through security - especially if I am in a country where English isn't the first language or they have different rules on controlled drugs etc. But I have found the calmer I am, the easier it is to handle. I now go into security expecting there to be a fiasco, and it take a long time - then if by some miracle it's fine, I am pleasantly surprised!

As point 1 & 2 say, organisation is key. Make sure you know exactly what you have with you and medical letters to prove it. This year I didn't fully check my doctors letter and one of my medications wasn't on the list..a liquid laxative. At Heathrow airport, this involved me having to describe to 4 different men what the drug was for: Man 1: "What is this?" Me: *whispers* "a laxative" Man 1: "A what, a *shouts* LAXATIVE" Man 1: Calls over man 2 "This is a LAXATIVE" Man 2: "It's a laxative? Oh..* Calls over man 3 "SHE HAS A LAXATIVE" Man 3: 'Oh a laxative, okay and what are these?" Me: Catheters. *3 blank faces looking at me*..for my bladder Man 1: "Gosh you have lots wrong with you yet you are very positive about it all, if I were you I would cry all the time" Me: Oh thanks..I think..

Cue the same confusion in Seoul but with them speaking amongst themselves in Korean except hearing the odd mention of 'laxative'. Thankfully they let me keep it! I have also been wheeled off in Dubai when I was in my wheelchair and had to explain what my catheter was as they felt it when patting me down. Images of being locked away or taken for a strip search flashed before my eyes but soon it was all sorted and they let me go! Staying calm, listening to what they want you to do and smiling all seem to help the process.

4. Ask for help

Travelling in general can make you feel quite vulnerable. I know it always reminds me just how 'delicate' I am..stripped away from my routine, home comforts and the quiet calm life I lead replaced with noise, people and potential germs! It's okay to ask for help from staff in both the airport and the crew on board.

Travelling when everything goes 'right' is hard enough but the minute something is delayed or something else goes wrong, sometimes you need assistance. If you are with someone else they can be your legs to get help or your voice to advocate for you, but on your own its hard. It's definitely easier when you 'look sick', when travelling in my wheelchair I immediately had assistance and was guided through security and check in queues aa well as getting priority boarding. But looking ‘so well‘ means its not obvious you need help and it’s can be awkward and uncomfortable to ask. This year I travelled with a sunflower lanyard I got from Heathrow, its a scheme that I know a lot of big organisations are rolling out to help those with hidden disabilities. More information about it here. I didn't need assistance as thankfully I was travelling business class - however it gave me the peace of mind to know if I did not assistance or suddenly became unwell they would be more ready to help me.

5. Pre-plan medication times for flight

An obvious one, especially if you doing overnight flights or flying through several time zones. I usually do this but got a little bit over-confident this time and didn't plan this in advance. Travelling fatigue + jet lag + usual brain fog means my thoughts aren't up to much on the plane so doing maths and calculating time zones is generally best done beforehand for me. I then usually set alarms to keep an eye on when I am due the next dose. I would say I can be intelligent at times, but time zones is a real weak point of mine!

6. Take snacks!!

I mean this is a motto for life in general...snacks are important. I have quite a few medications that need to be taken with food, and meals onboard don't often fit in with when I need to eat/take my meds. Also, many of us have ridiculous amount of dietary requirements, however in the aviation world you are only allowed one. You can be gluten free OR vegan, you can't be both. So I usually go for gluten free and then send back every meal that comes with meat and fish etc. Once I just chose fruit, which thought that at least it will be refreshing. However there is only so much melon you can be excited over and after my fourth plate I was craving savoury carbs and some protein!

I usually take crisps, snack bars, chocolate, mints, decaf tea bags and sometimes will take things like porridge pots or buy protein shakes once through security to take with me. This time I thought I'd be clever and put a banana in my bag too until suddenly saw all these signs saying 'NO FRUIT' or I would be quarantined. I was in such a panic to throw them out in the special bin but I couldn't work out how to open it and ended up throwing it at the plastic lid which bounced off it and I had numerous funny looks.

7. Take spare everything with you in your hand luggage including spare socks for your travel buddy

1. I am really clumsy so spilling everything done myself is common. Last year I spilled a smoothie down my top in the airport before I even got on the flight! So taking complete change of clothes is helpful.

2. Catheter life - I always carry spare pants, leggings, socks, tops - basically everything. Just in case I have any leaks or pee all over myself due to being overtired and forgetting to close my valve! Last year I had a leg bag on and D was asleep next to me. I stood up and was half climbing over him to get to the aisle when the lady in front also stood up and leant back on her chair, knocking me over which then flicked up the latch on my bag. Urine flooded out, which of course, I didn't notice until D woke up to me straddling him and found his socks covered in pee (he still won't let this go). We were both covered in pee plus I managed to pee all over the middle aisle which the poor air steward had to clean up (she was really nice about it and said she had cleaned up much worse). Still now I will travel with spare socks for me AND for D.

8. Stay 'healthy'

Well as healthy as you can be. Being around lots of people means suddenly being exposed to lots of germs. It's important to do what you can to keep yourself safe and don't worry what people think. I usually wear my mask in public places, wipe down any surface with an anti-bac wipe and just increase my already obsessive hand-washing and using of hand sanitiser.

Top tip would be not to travel with the threat of coronavirus! For those with other illnesses or are immunosuppressed I don't imagine it is great for us. I managed to fly via South Korea the week it started to hit the headlines for having 'the worst outbreak' of Coronavirus outside of China. I spent a night in the city centre of Seoul which I actually felt quite safe in. Everyone was wearing masks which was nice that I didn't feel like the odd one out for once. Thankfully I wasn't in one of the worst affected cities and do not have to be in self-isolation.

Also do take whatever you can to make you as comfortable as you can be on the plane. Whether it's hot water bottles, wearing sunglasses to block the lights or extra pillows. I sat for most the flight frantically using my rose quartz roller trying to help keep my head pain manageable. Let go of what you look like and just do whats best for you and your body!

9. Keep moving

Would I even be Actively Autoimmune without talking about movement? Whilst in the airport try to walk and stand as much as you can tolerate or even find a quiet area with bit of floor space and do some stretches. Even when sitting and waiting try not to stay too static for long. Try and get up every hour whilst waiting or on the plane (unless you are lucky enough to sleep). You can also do some exercises in your seat or if you find some space at the back or front of the plane - or even stand in the toilet if you are feeling self-conscious. It doesn't matter too much what you actually do, but just try to get your body, especially your spine and lower limbs moving.

10. Plan 'recovery time' and then times that by 3 for how long it actually takes to recover from travelling

Travelling is extremely taxing on the body. You are both static for long periods of time, sitting down but then often moving around walking or transferring between transport options. Even when sitting down, although we are 'still' technically our body isn't. This constant stimulation can make it really hard to wind down afterwards. Our neurological system is overwhelmed from all the stimulus from both moving and from the lights, sounds and actions of other passengers. It puts our body on high alert, quite literally in fight or flight mode! This can take a long time to settle down, and we need calm, quiet place to rest. Which is frustrating if you've travelled to a new place or to visit someone and all you see for the first few days is a dark bedroom!

No matter how much I am aware I will need recovery time, it still takes me longer than I think it will. And thats even if it was a relatively smooth journey, and I didn't injure myself or my head didn't blow up into full migraine mode! Last year it took me 5 weeks to recover from my Australia trip as it triggered a bad bout of migraines plus I injured my hip and shoulder whilst sitting down. This year my head is much better but I still managed to sublux my shoulder!

Travelling isn't easy and sometimes I wonder if it's worth it - for me its a big yes as I have to travel to see D my partner. But we have to live our lives and there are lots of things we can do to help ease the impact. Hope this helped you know what I do to help or at least made feel okay about some of your own travel fails!

Lots of love, Zoe xx

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