13 minute read
Freedom to Fly TRUE STORY
to fly!... Freedom
My name is Hayley Jordan, I have an autoimmune disorder (HLA-B27) and two different autoimmune diseases – Primary Sclerosing Cholangitis, (a liver disease), and Ankylosing Spondylitis, (arthritis of the spine and hips) – These affect my day-today wellbeing and ability to travel... Despite this, I’ve moved from my home country of New Zealand to live and work in Manchester in the UK, and solo travel around Europe as much as I possibly can... Here are some of my travelling experiences...
My arthritis is managed by visit and let them know that I need to use the staff fridge for the
injecting medication that requires refrigeration at all times: This has caused issues at airports and at some accommodations.
I have to use a special insulated travel bag that cost me more money than I’d like to admit – I had to buy a special one that would keep medication at a temperature medication (sometimes a bit of a struggle to explain with nonEnglish speaking countries). I can’t share a ‘community’ fridge as my medication costs six-hundred pounds per injection and I can’t risk someone taking it out or playing around with it. Going through
security is anxiety
inducing, especially between two-eight degrees Celsius for twenty-four hours. I have to prepare the American airports. ice-coolers two days in advance, and then I have to have evidence from my doctors that it’s my medication and I need to carry it on board.
When I moved to the UK I had a ‘stockpile’ of medication from New Zealand – Twelve injections in one cold bag, and because the travel time is around thirty hours I still needed to buy temperature monitors to keep everything in check and even ask for bags of ice from the flight attendants to keep my medication at the right temperature.
Going through security is anxiety-inducing, especially American airports. I never have a ‘normal’ security experience, I’m always pulled to the side and interrogated, usually for five minutes while they go through my travel bag and do extra x-rays or swabs. Strangely enough, it was in Iceland, where I was held back for fifteen minutes while the security person called over her supervisor and they both searched and swabbed everything, asking me question after question like I was up to something suspicious. In accommodations such as hostels I have to email ahead of my
Of course, these aren’t the worst things in the world, maybe time-consuming and frustrating at best... But it all reminds me that I’m not ‘normal’ and I have to live a different life than ablebodied people. I can still do most of the same things, I just have to meticulously plan ahead — nothing can be left to chance!
I easily get extremely fatigued. It’s sometimes difficult to travel with able-bodied people who don’t understand my full sleep schedules or my need for regular rests.
Often, I prefer to travel alone – this is a mixture of lonely and liberating at times. I’ve had to readjust my idea of a fun holiday – I would never sign myself up for an Ibiza style party destination with friends! Nor would I do a twentyto-thirties Euro-trip tour, because I would pretty quickly become the ‘wet blanket’ of the group when I’d have to leave early to sleep or rest.
I feel like I’m missing out sometimes, seeing people live it up at Glastonbury for five straight days or do a full moon party in Thailand; things I would never feel comfortable doing now for fear of becoming the burden.
My weekend in Budapest.
Kim-Maree
It does feel liberating to do short trips (two-three days) to cities in Europe, like Budapest, where I can come and go from my Airbnb as I please, check out a cool ruin bar for an hour and then head off when I want to, and go to sleep rather than do an all-nighter.
I get to do a holiday according to what’s best for me and what I enjoy doing. But similarly, I am a firm believer that happiness shared is happiness doubled, so I try and invite a friend that I trust on some holidays. It’s important to feel like someone ‘has my back’ when I need to rest, or we both understand that it’s okay for them to go out and party but I’m going to head back to the hotel. I need to have that level of support and trust with people I choose to travel with, so we can both truly relax and enjoy the holiday, otherwise, I feel like I’m trying to overcompensate and ‘keep up’, when I know I can’t.
Due to my liver disease, alcohol is out of the question. Being able to enjoy the nightlife and bar scene of any destination is not something I can do or particularly enjoy now that I can’t be involved.
I haven’t had a hangover in about six years now, so I love to get up and find a beautiful place for brunch or start walking the city while the heat is less intense and there are fewer tourists around! Walking around a new city with a coffee at nine on a Sunday morning is something I’ve really enjoyed doing. Many of my activities are much the same as anyone else’s – walking tours, sight-seeing, restaurants, galleries, shopping and so. I just avoid late-night bars (I’m in bed by midnight most of the time!) and high-energy activities – going on a six-hour hike through mountains would probably kill me now, but a three-hour walk around a nature reserve is much more achievable.
I recently used some Lime Scooters in Budapest and it was amazing! I could travel double the distance in a day and see everything on my to-do list while using half the energy. Little things like that make travelling more accessible to me... and more exciting!
Freedom to fly BLUSH | LEISURE & LIFESTYLE 50 BLUSH | SUMMER 2020 sevenstarmedia.co.uk
Most of the time I don’t bother with travel insurance anymore. I am immediately rejected for any pre-existing conditions cover, and companies are then wary about covering me for anything else healthrelated. I try to travel despite this and hope that my EHIC card will cover anything that suddenly comes up.
Find forums and support groups that chat about your illness or disability and see what others recommend regarding insurance. Different illnesses often have different quirks, and different insurance companies are more ‘educated’ than others. Some companies have a list of ‘absolute no-nos’ and they decline you immediately, others will have a set of questions about your illness and determine cover based upon your answers, for example, have you been hospitalised in the last twelve months? or have you had a transplant, and what medication are you taking?
Those in your support groups will have tried and tested so many companies that you are sure to find one pretty quickly that they recommend. Also, I generally try to avoid high-risk activities... No bungee jumps off bridges, or mopeds through tiny European streets without helmets for me!
While I’m covered in case of an emergency such as a car accident, anything related to my spine or liver is just a no-go zone of preexisting arguments. If I hurt my spine due to an accident, would they be happy to cover all resulting treatments? What if my arthritis made the healing process take longer and they could argue out of paying for any of it? I don’t want to find out! Travelling means I take any level of risk with me, but I try, and I minimise what I am able to control.
The world doesn’t want me travelling. Living with disabilities and illnesses essentially rules you out as a ‘useful’ person to the economy.
I work full time in a good job, I haven’t been hospitalised since I’ve been diagnosed (five years now), but getting visas that cover healthcare or travel insurance that isn’t irresponsibly expensive means that I have limited options to live my life. I have dreams and aspirations like any twenty-something-year-old, but at twenty-two I had to say ‘goodbye’ to a lot of opportunities – that just closed-up in an instant. It’s been difficult, but I’m making it work...
I’m extremely lucky and grateful that I’m currently achieving one of my dreams – moving to England and starting a new life here. It wasn’t easy and continues to be difficult at times, but I have wanted to do this since I was young. Being away from my support networks in New Zealand has been the biggest challenge – having a chronic illness means you need help sometimes from the people who love and care for you, and I had to build that support network all over again once I moved here.
My other dreams are to continue travelling around Europe and to see as much of the world as I can while I’m still mostly healthy and as mobile as possible. I don’t want to miss out on learning about new places, meeting new people, and experiencing beautiful things that make me feel alive. I want to do well in my career, keep creative and achieve work that I’m proud of. I also want to settle down and have a family sometime soon – that comes with its own set of challenges, but I’m hopeful that I’ll get to experience that too.
IN A CHANGING WORLD, YOU CAN FAST-FORWARD YOUR SUSTAINABILITY TRANSITION.
MATCHING INVESTORS WITH CORPORATES TO ACCELERATE SUSTAINABLE GROWTH. www.cib.bnpparibas
The bank for a changing world
1Take an ultimate travel action selfie of you flying in the desert – simply jump and get a friend to snap you in action.
3Switch your desert vehicle for a camel and go for a more relaxed adventure with your friends, perhaps try a guided tour at twilight when the temperature drops a bit.
2When in the ‘desert city’ it would be rude not to raise that adrenaline with quad-biking across the dunes. If you prefer, you can hire a four4 There are nightclubs in Dubai – but even if you venture out for an afterwheel drive and a driver, meal evening stroll – you will be and sit back and enjoy delighted by the lit-up buildings the ride – but hold on amongst the dark sky. The 2,717 tight! feet tall Burj Khalifa – the tallest tower in the world – looks stunning at night. Dubai 7 Things to Try
5Board an Abra (a boat) and be ferried across with culture and in style to the Dubai creek.
6Enjoy the views from your accommodation; either observe the hustle and bustle of the street from a height, or stretch out in a roof top pool and soak up the vast sky and skyline.
7Be inspired by the opulent furniture and accessories that line the hotels, establishments and outlets in Dubai. As well as by the iconic architecture of the buildings – both modern and some more traditional. The Atlantis Hotel, The Palm’s pink building is reported to be the world’s most Instagramed hotel, and includes The Lost Chambers Aquarium.
Find out more about a visit to this city in the United Arab Emirates visitdubai.com
New you! New York
One of the most iconic cities in the world will make you look at life from a whole new perspective… through the lens of the movies
here is a list as long as the T Statue of Liberty is tall of how many movies have been filmed or set in New York City. A visit there will have you experiencing what Kevin McCallister felt like when he saw the magnificence of the Plaza Hotel, and the sheer size of Central Park – with the horses, pigeons, squirrels, and that iconic bridge where he caught the bad guys in Home Alone 2. And if you visit at Christmas or New Year you’ll get to see the enormity of the Rockefeller Centre Christmas Tree.
Visit the National History Museum near Central Park where The Night of the Museum 2 was filmed and get a photo next to some of the movie star artifacts.
The true NYC star (starring in Ghostbusters 2 amongst many) has to be the Statue of Liberty with her strong message of freedom signified through her broken shackles, her Independence Day book, the crown that represents seven rays of sunbursts spreading reason and enlightenment throughout the world and her torch of truth and justice. If you are planning to climb to the top of the crown, book ahead of time to avoid disappointment, and be mindful as it is a confined space and requires a decent level of fitness to cope with all those stairs.
No stairs needed though at the Empire State building – what a relief! Because you can travel right to the top via elevators, including to the recently extended floor with panoramic windows. The nighttime visit is a treat not to be missed – and there are less queues too! Sleepless in the City, and King Kong are amongst the few hundred films that have featured this building.
If you stay in or near Times Square there is plenty to see and most things are walking distance including Broadway for top entertainment. Even some restaurants have singing during mealtimes – everything is an opportunity for a show! The Twin Towers Memorial is a taxi ride away and there are plenty of those yellow vehicles around. The fire trucks, and NYPD cars are also reminiscent of the film and TV industry, as are the street food trucks and the pot holes with steam that rises from the ground into the street – no doubt The Ninja Turtles are hanging out eating New York style thick crust very cheesy pizza.
If you want to dress like a star head to Macy’s or any of the 5th Avenue stores and you’ll be sure to find some new clothes for the new you in New York too!
Photographer: Rex Martin
