Travelling with invisible illnesses can be a challenge. I want to continue to make travel possible for myself as I absolutely love it. Recently I have been having a lot of anxiety surrounding the idea of travel. I had a bad experience in Marrakech (despite the fact it was a lovely holiday with my mum & sister) my tourettes were HORENDOUS!!!!
Travelling with tourettes: Ticcing on airplanes. Going through security whispering about having a bomb, loving ISIS… trying to explain to security I have TS not fun!!! Travelling isn’t always particularly safe so drawing more attention to yourself with tics when you are already standing out as a blonde woman with curly hair really does make for more stares, inappropriate comments & even being filmed.
My tics seem to go multicultural and become all sorts of global associated words- I tic in french, I tic ‘I’m Spanish’ ‘Spain’ ‘Germans’ anything similar and it’ll usually be the week leading up to the holiday aswell as a few weeks after. It’s a pain in the bum and frankly exhausting BUT it is what it is hey!! I’m getting quite good at suppressing my tics. However it is painful & tiring which can contribute a fibro flare up.
My top tips for travelling:
If the sleeping arrangements at your hotel aren’t up to scratch, say something. The quality of your trip depends solely on whether you get a good rest each night. LATE NIGHTS AND EARLY MORNINGS!
Invest in rest
Allow time for rest. I have ME. This means I need naps. This also means I don’t wake up from naps. I don’t want to miss out when travelling as well as not wanting others to miss out. Whilst your family, friend or travel companion do an activity you are unable to do, go back to the hotel, Airbnb, villa, house etc and rest. You would normally. Trying to stick to your routine is very important.
An example would be – when in Nepal everyone decided to go Paragliding. It was supposed to be the best place to go paragliding in the world with such beautiful views. (Pokhara) I knew later that day we had a lot planned so I decided to skip this activity- the risk of injury & travel sickness no Thankyou!! I stayed at the house and had a nap- I assured them to wake me up when they returned as I wouldn’t naturally wake myself & so I could hear all about it & we could do another activity. It worked great & we had a lovely afternoon.
Similarly in Marrakech, we were going for a late dinner and I was particularly fatigued- from this my tics (Patricia) became very obvious- difficult abroad & my mobility was consequently poor. Whilst my mum & sister played a game & went to explore I had a few hours nap, this meant not only did they not miss out- I also had a good rest before starting again!
2- MOBILITY AIDS
THIS MAKES ME SO EMOTIONAL TO TALK ABOUT!!!
When I’m Amsterdam I rented two mobility aids disguised in the best way as bikes. I went with two friends & underestimated my inability to walk around the city. I knew I struggled with mobility but on the first day, the pain and fatigue I was experiencing was concerning. I really was gutted knowing I wouldn’t be able to take part in the ‘cycling around Amsterdam’ experience.
STAR BIKES RENTAL
The Owner of this shop made my experience- he was amazing. An Australian guy who lived in Twickenham for a while who now owns a bike shop in Amsterdam- the reason his bikes were so great is that not only could my friend hire a normal pushbike- we were able to hire for the longevity of our trip 3 forms of mobility aids. We hired a bike which had a normal bike on the back (my lovely lovely friend took the honours of riding) with a wheelchair attached to the front- meaning not only was I open to the experience of cycling ‘normally’ – I was less exhausted due to the problems with my legs being supported by the wheelchair. My poor friend definitely drew the short straw as she has to cycle my fat ass everywhere!!!
My cute little scooter
The wheelchair bike!
Another day I hired a powerchair (omg fun!!!!) – PROMO if any lovely disability company would like to sponsor me one of these bad boys I’d kindly accept! – My friends did 42,000 steps on the day I hired my mobility scooter. I struggle to do 3000 on a good day. We got to do so so much. It was amazing. Usually we stop- we wait for me. We stop- she need a break. We stop Lauren’s walking so slow. We stop Lauren’s fallen over. I have a Blue badge for my poor mobility – I am such a slow walker I’m often overtaken by elderly women with sticks. Although I’m often pretty smug if I manage to go faster than them hehehe.
I’ve always been a doordler but I think since breaking my coccyx in 2017 the fear of falling is high, while being chronically ill I am slow.
When abroad explaining my invisible disability and Blue badge is very difficult! Hence why finding good disabled access on public transport is important.
3- USING PUBLIC TRANSPORT
When it says disabled access, know this doesn’t always mean there is good disabled access.
Disabled access for me has multiple meanings not just extra wide doors so a wheelchair can fit through. It’s priority seating. It’s lifts as well as stairs, toilets, comfy seating etcetc..
-PLAN PLAN PLAN
When you travel- pre planning is crucial for anyone – however with a chronic illness or disability it can be even more important.
BUSES – work out routes which are best for you even if it takes a little longer.
TRAINS- are they going to be like the London Underground- absolutely rammed, would it be more beneficial to get a taxi.
TRAMS- do they have a slope to get a mobility aid on easily? If you are by yourself always work out these things so you don’t have to risk injuring yourself more.
WALKING- do you walk this much at home? No? How do you usually get about? What works for you there? Walking through little side streets is amazing for exploring a country- take your time as there is often uneven footing. You’re bound to get lost in little lanes so prepare extra time for a rest afterwards.
PLANES- unavoidable unless you fancy travelling to Asia or Australia by boat. Book assistance at airports. A MUST. They will not accept you on the day for assistance you need to pre book it. Ask about the procedures for assistance if your flight is cancelled or delayed. Wear comfy clothes & have all your paperwork to hand. A chauffeur with the little golf carts around the airport would be an amazing idea if your mobility is limited or you experience intense anxiety.
BOOK SUPPORT AS FAR IN ADVANCE AS YOU CAN! (Your travel companions will also love you because you can all skip queues)
I have IBS- it can be quite severe- imagine what you like but I’ve most definitely had awkward encounters in public places without toilets. I have a few handy tips or safety behaviours that could help!!
Research where the loos are. Always wait ten minutes and then go to the loo after you’ve eaten. Don’t leave that cafe straight away. Carrying this urgent toilet card has also proved helpful. (From bladder and bowel UK) With this sort of thing it’s only really useful in the UK or English speaking countries.
Carry tissues. ALWAYS. EVERYWHERE.
Every ‘posh’ toilet I went to I take tonnes and tonnes and tonnes of toilet roll. (The only time I’d condone stealing) I carry a bum bag & fill it up. Toilets abroad are questionable. You really don’t know when the next time you’ll have loo roll or a flush could be.
If you see a half decent toilet, even if you don’t need it – use it. You’ll thank yourself later.
HAND SANITISER. I carry this around a lot- not only to prevent bacteria & avoid spreading illnesses but it is also great to wash your hands if you’ve got to go in the middle of nowhere!!!
Wear appropriate shoes (just because sandals and flip flops look nice trust me do not wear them! Get yourself some Sketchers D’lites)
Don’t push yourself beyond your capabilities but also don’t restrict yourself so you find yourself regretting experiences afterwards. I wish I had done xyz. Take your time walking up & when you make it to the top stop- have a drink and appreciate the view. Treat the fact that you’ve made it to the top a huge achievement. Having fatigue and mobility problems really makes walking hard – let alone up 1000’s of steps or uneven paths.
6- HISTORICAL OR RELIGIOUS PLACES
My IBS likes to kick off in the most awkward places at very unwanted times. Planning ahead for moments like this is crucial. I assure you standing in the middle of one of the most respected buildings in the world with 20 seconds until you destroy the floor is not the one.
These places are often very busy!! Tourists everywhere can not only be very overwhelming but also super annoying! Look into disabled access before hand. Do you need a lift? Can you manage the walk from the car or bus to the place? Plan yourself enough time before and after to rest. You don’t want to arrive at these places already feeling stressed. Before you arrive download an online map to spot where benches are for resting & toilets for toileting!! You can often call these places in advance to find what accessible services they offer- they may suggest quieter times to avoid the peak of sunlight in the summer or avoid big bookings of groups.
Just because it says it’s wheelchair accessible does not mean it’s wheelchair accessible! In London myself & my friend had many humorous occasions of me almost flying out wheelchairs on uneven grounds.
Lots of these places are very old & their accessibility isn’t always perfect:(!!!
7- FOOD & DRINK
I faint a lot. Water is essential. Check with the locals whether or not their tap water is safe to drink.
Everyone gets hangry! If you’re hungry it can make you miserable & fatigued – regularly eating and drinking (energy sources) are really important particularly if you will be walking more than normal or exposed to sunlight etc… (also carrying snacks with you means you can give them to your able bodied friends to avoid them getting hangry and becoming frustrated with how slow you are- winner!)
A lot of medication needs to be taken with foods- corner shops aren’t always available abroad so I’d recommend taking small snacks such as protein bars to have in your bag at all times.
HAVE SPARES AND SPARES AND MORE SPARES!
– Delayed flights (pack an extra weeks worth)
– Lost baggage (put them in more than one bag)
– Stolen Handbags
– Brain fog & forgetfulness
TAKE SPARE MEDS!!!!
Learn the words ‘disabled toilet’ ‘please’ ‘help’ in the language of the country you are visiting!! Trying to explain to someone in a different language that you have Tourettes Syndrome and you are not laughing at them is not always easy!!! Any words which could potentially be useful for you to learn do.
Have your medical information written down not only in English but also translated into the language of the place you are visiting. Perhaps an emergency contact detail too. The hotel you are staying at. I often have this sort of stuff printed out on a small piece of card as well as on my phone.
I wear a medical ID necklace which is universally recognised & I would definitely recommend!!!! They can be a little pricey but they have some for all budgets!
I never take it off & it has a symbol recognised by medical professionals and emergency vehicles. I have a cute little elephant I got in Nepal attached to mine. And I bought it in the shape of a heart. It has a chip & a PIN number with access to an online database where I have inputted all my medical details. (If you have allergies I really recommend this!) Also just filling out your health section of your Iphone could really help save time in a crisis.
Priority seating cards! Make your own or see if your local authority provide them! Brighton have a scheme called ‘helping hands’ which is fab! I have a card saying I require a seat- it is brighton yellow and has lots of disabled symbols on it so it can be clear to all. I wear it round my neck on a lanyard if I am feeling uneasy that day. Other times I won’t use it and I will feel confident enough to request a seat!
In the UK having a disability qualifies you for a lot of support including free bus travel across the nation- know what you are entitled to to help get you out and about!
When abroad I personally think it’s worth me saving the extra money up to be able to afford a taxi as opposed to getting on multiple buses and trams- however having a mobility scooter can really help not only raise awareness to other people but also save fatigue. Just check that all buses and trams will let you on particularly in Europe because apparently having massive blue disabled signs on a bus means they actually won’t allow any disabled persons with mobility aids with wheels on public transport.
People can be obnoxious, unhelpful and rude do not take it personally! There will always be one good person- that person who will carry your mobility scooter for you or offer help in anyway they can! Enjoy yourself and laugh at the people who walk across you (beep your mobility horn at them) those who ignore your need for help aren’t helpful at all but are unfortunately always there!
9- TRAVEL INSURANCE
Having travel insurance is crucial. Honestly it sucks that if you have any kind of diagnosed mental health condition & or a physical health condition your travel insurance fee is immediately so much more £££, trust me it is worth it though.
Tips for travel insurance:
Check your excess – don’t just put the highest excess to save you money right now- I’ve tried to claim health insurance after being hospitalised abroad & come to see that for example the fees were £500 but my excess was £700 therefore it really did not seem right for me to claim. I incidentally lost out a lot of money.
Shop about! Look around on comparison sites to get the best deal & the right cover for you! Check what activities you’ll be doing as not all insurance companies cover everything! Make sure to call companies too as they may be able to help negotiate!
Compare the Market
The faff of organising travel insurance is a pain but is also very important for you & those travelling with you. It can protect you & your belongings in an emergency.
Enjoy yourself worry free (ish).
10 - PUSH YOURSELF BUT NOT TOO MUCH
For lots of people holidays are relaxing, as someone with a chronic illness or disability learning to relax abroad comes from accepting that not everything will go to plan. Take your holiday as a challenge- a new you- exploring things that you also may not be able to do in the future. Grab life while you can! Be grateful for the opportunity given and treat it as an adventure as opposed to a zen spa retreat. (Ooh fun fact- spa massage treatments really hurt- fibromyalgia. Saunas cause me to feel sick & faint as they are wayyy too hot- the only fun thing about the spa for me is swimmmmingggg!!!!!)
– Headphones are a good item to pack as they can help you avoid loud stressful situations or any sensory issues.
– Spare undies in every bag (sometimes you have to act like you are a toddler who still has accidents)
– Comfies! Whatever makes you feel calm- a jumper, teddy, fluffy socks. Don’t force yourself to wear jeans because they look nice but feel like you’re walking like a soldier all day.
– Nappy cream! Chafing! In the sun legs rubbing from skin on skin contact ouch!!!!!!
– Blister plasters (Compeed are the best)
– A four wheel case not a two wheel case- preferably hard shell. Easier for you to pull and your travel companions will dislike you a lot less if you’re able to carry your own bag!
– A lightweight heat pack (or use the bath if you can pack light.
– MEDICATION!!!!! CONTACT LENSES!!! GLASSES!!!
– Make sure you feel comfortable with the people you are with. You won’t be letting anyone down if you make them aware from the start of your situation. I hate to think others feel the need to look after me and not enjoy themselves! I’m honestly fine if anyone wants to run ahead. (As long as no ones safety is compromised)
– Plan and Prioritise. Can you manage? Will you burn out? What would you love to do? Like to do? Be nice to do? Don’t mind if you miss? Trying not to cram is the best way. Leaving space in a schedule for exploring & new things you didn’t see were there online. Plan rest
Be realistic with your expectations before you leave.
I’d love to write more on this but for now…
A link to an amazing disabled friendly travel blogger!