Wheels Up! - tips for travelling with mobility issues

Note: the following is entirely based on personal experience and the experiences of others with whom I have discussed these issues. Please consider your own circumstances and needs carefully, and seek medical advice.

So, you're planning to set off on a trip. Perhaps you're facing a progressive illness and coming to terms with your declining mobility. Perhaps you're on the way back to health after a surgery or long-term illness. Perhaps you need a change of scene and you know your deserve a holiday. There's often a woeful lack of guidance for any travellers with disabilities, and I've found especially for those whose limitations fall in that awkward, broad category of "mobility issues": conditions that don't involve permanent confinement to a wheelchair but do involve some trial and error where fatigue and and pain come in.

Here are some suggestions if you're facing travel and not sure what to expect.

1. Set conservative limits on distance

I know; it's not a promising start. But step one involves some serious confrontation of your own abilities, limitations and comfort. Unless the trip is for business or a special occasion you probably have some control over your destination.

When picking a destination, ask:

How long is the journey time and is this realistic?

Does this destination require an overnight flight and can I cope with that?

Is any overnight flight at the beginning or end of the trip?

How stressed am I likely to be leading up to departure and how long will I have to recover afterwards?

If none of these is a dealbreaker, great! However, there's no harm in having a short trip close to home to try out your endurance with low risk.

2. Find yourself a good home base

Even if you don't plan to spend much time in a hotel room, think about this: even if you only sleep there, you are likely to spend a third of your time in the hotel, and if you suffer from physical pain this might be the most important third of your day for ensuring your stamina and comfort.

Make yourself a wishlist of requirements, decide what you can and can't live without, and stick to it:

• Do you need level access? Check for external or internal steps and lifts. 
• Do you need or want ensuite facilities? Consider how far away you could bear to be from a bathroom and take into account whether you need to have some control over your hygiene, especially if you are taking any immunosuppressants.
• Do you sometimes need a wheelchair? If so, make sure you request a room with enough space  to move around and store any equipment (and ask about doorway widths!)
• How far can you expect to go for basic requirements, inside and out? Think about the size of the hotel and find out where suitable rooms are. If you don't need all the facilities of a dedicated accessible room (which may be in a far corner of the hotel to maximise space) you might find that requesting a room close to a lift is more suitable. Also consider the minimum distance from each potential hotel to sources of food and transport.
• Do you have any medication that needs refrigeration? Don't take the presence of refrigerators for granted.
• Similarly, do you need extra, reliable power outlets for equipment? 

You can always ask the hotel for clarification, and this can be a great way of gauging the management's awareness and willingness to help with your needs. Do check out online reviews, with the usual healthy scepticism, if you're concerned about anything, such as bed height or mattress quality. Find out whether the hotel occupies the whole building - if it's only one or two floors (common in large and crowded cities) then remember that your hotel may not be in control of external disruptions to service and access.

Remember that even if you have great stamina at home, we can't underestimate the effects of culture shock and jetlag along with the exhaustion of sightseeing and a new climate. Prepare for extra rest time, and allow occasional rest days on a longer trip. If there are perks that you quite fancy it can be worth treating yourself - perhaps, if you know you're going to be spending a lot of time in or around a hotel, having a lively view and a balcony would make you feel part of the action.

3. Be realistic about your destination

You don't have to go looking for trouble, but always endeavour to get a clear picture of what to expect with regards to accessibility and challenges. Do think about how you'll feel after walking on uneven pavement all day if that's a local hazard, and consider your transport options. One of the hardest things I've had to deal with has been the apparently minor issue of reaching the end of my energy reserves and having to stand waiting for a delayed bus!

And you don't have to be a slave to the guidebook's "travellers with disabilities" section, either. You know your requirements and remember that some books only cover wheelchair access. Don't write off anywhere before looking into it yourself - in some countries, for example, travel can be a real headache on wheels but if you have the ability to negotiate steep pavements and uneven surfaces you can treat yourself to taxis and hotels with every luxury for a relative pittance.

Do check for yourself what restrictions may be in place with regard to bringing medication in. Sometimes the guidebook won't have the latest rules.

4. Be prepared for unfairness

I'm not saying we shouldn't challenge unfair policies, but do be prepared for some measure of frustration through the whole process. Some airlines restrict the number of passengers with disabilities and in most circumstances the prized exit row seats are off-limits. While most allow extra time, a minority make passengers with disabilities board late. Make sure you know the airline or airport policies and can deal with their restrictions without seething, and as always use the contact info online if you want to know more.

People can be a less predictable hassle. Yes, we're more at the whims of the airline employees whom we encounter than we might wish, and sometimes other passengers (even those with disabilities) will be ignorant of the reasons for having what they see as "special treatment" and might question the need for assistance. The vast majority of people will say nothing and have no problem, however, and remember that it's usually a result of their own frustrations and they won't remember the irritation later, even though it might feel like they are sending waves of disapproval your way. Ignore it and remember that, while occasional obnixious people get everywhere, most people are nice!

5. Find the most comfortable travel arrangement

Don't be shy about asking what help is available if there's a chance that you can save yourself a lot of hassle and pain. Some airlines will happily offer a free reservation of a bulkhead seat and (unless you will be more comfortable not moving during the flight) an aisle seat is usually easy to request and can make a huge difference to comfort. While no one really wants to be too close to the bathrooms on a long flight, situating yourself in the general area can be a good idea if you're stiff but likely to get up and down to go to the toilet. Ask at check-in if the flight is full, as if not a helpful airline employee might be happy to put you in a quiet spot.

Do ask for more time to board - which is not only great for getting settled and getting your hand luggage away, but means you're not as vulnerable to bumping or standing around for too long. Some airlines board people with mobility restrictions at the same time as young families, and you just have to imagine the combination of bouncing kids and a bunch of people with sticks and walkers to know that's a bad idea. In this case it is definitely worth asking to not board with this group, even if it means hanging back until the families have had a good head start.

On board, make the flight attendants aware if you have any particular needs. Most armrests can be moved if you know how and they can make sure that you don't have to manoeuvre any more than need be. If the seatbelt is uncomfortable extensions are available and you can ask the flight attendants for one when you board or as they pass. Scheduled airlines typically offer extensions that match the regular belts, whereas some budget airlines will provide you with one in a very indiscreet shade! They can be purchased, and are accepted by most airlines, though some (such as Lufthansa) use a different buckling mechanism on some planes so you may still have to ask. Get a headstart on your comfort by selecting a seat online, if possible, and check out SeatGuru to find the best spot for you on your aircraft. This will also give you important information on seat pitch and width.

If flying causes too much pain and stress, consider the alternatives. Train travel can be a much easier prospect, especially for a trial run, since there is much more freedom to move around and fewer hurdles to jump before boarding the train. In fact, some train journeys are holidays in themselves and you can see spectacular scenery while meeting locals and not having to exert yourself too much!

6. Embrace the chair!

The airport wheelchair assistance service is your friend. If you're fine going the distance on foot, discount it, but if any part of the walking, queueing and standing around is going to leave you sore and tired before you even get on the plane, get the help. If you've always been independent I understand that it can be difficult to acknowledge your limitations with such a visible symbol, but remember that most of us would want someone we care about to accept help rather than struggling on. 

In most cases, the wheelchair route through the airport is somewhat swifter than the FootRoute, which is a blessing if you need time to decompress before the business of boarding. Don't underestimate the difference it can make when connecting, when you may need to collect luggage and pass through security again.

Sometimes you will be scooped up from check-in, while sometimes you will need to go to an appointed location for wheelchair pickup. Do request assistance when booking a ticket, but if for any reason this has not been processed (it does happen) just stay calm, request assistance and there is usually no problem. In this case, ask the desk agent to check that a request is applied to all further flights on the ticket.

7. Appreciate your helpers

If you travel regularly from one airport, chances are you will become a familiar face to the assistants. All the more reason to be the kind of traveller they are happy to welcome back! When travelling alone, it's nice to have the chance to chat, anyway.

Arriving in a new place, your assistants are likely to be the first local people you meet. This makes them a valuable and often enthusiastic ambassador for their home city and a source of great pointers. This can be your chance to ask any burning questions and to ask for local recommendations. 

In one sense, it's not fair that we should pay more than anyone else for a service we don't want to need, but see point 4 again for a refresher. When someone has pushed you through an airport, collected your luggage, found an express route through passport control, been pleasant and given you sightseeing tips and driving directions, then it's more than worth tipping generously according to your ability. Whether or not it's expected, unless it's taboo in your destination it's likely to be appreciated and will show that you value the service. 

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Obviously, we all need to consider our own requirements, but if you're nervous about the prospect of travel with new restrictions, I hope that this will be of some encouragement that it is possible. It's not true that we can all do anything we fancy, but with some realistic expectations, there's no reason why we shouldn't be able to enjoy the abilities we have!

New Adventures

It's so easy to forget that travel doesn't come with a rule book. Handbooks abound; there is a wealth of great advice and useful tips from seasoned travellers and on occasion it certainly seems like there is an ironically well-trodden route to independent travel.

Three years ago I was struggling on one of my travel adventures, in increasing pain and no longer able to seize my opportunities as I would wish. I struggled as much with the fear of failure accompanying a capitulation to the counterintuitive necessity of giving up. Watching my own body disintegrate into a mass of inflammation and acute pain, I responded to the internal voice that had been pleading for nearly two weeks: come home.

My relief upon the return to the familiar comforts of my home was shortlived. I felt that I had been summoned home to a greater, harder adventure: hanging on through the extreme pains that come with a serious flareup of an autoimmune disease and finding my way through the daunting tangle of multiple bureaucracies that confront the chronically ill in this most vulnerable episode.

For one afflicted with a permanent case of itchy feet, being stuck in one chair for months at a time is torturous, but one of my coping mechanisms was a healthy dose of travel-brochure escapism. I dreamed of far-flung destinations, but a highly-supported short break to a coastal destination less than one hundred miles away was just as exciting. After a relaxing European getaway, and the confidence that the worst of my pain was somewhat under control, I felt ready to attempt an independent trip last November, where I enjoyed great support from airport workers who are becoming rather used to seeing me these days.

First trips are often something of a steep learning curve, and I overdid it a bit so that I experienced a bit of a flareup upon my return. Nevertheless I was determined to work out a safe middle ground, and after a successful trip this year I look forward to better travel management on my part.

With my specific mobility problems, I feel blessed in the "negotiable" nature of my ailments; fatigue management is the major concern, so there are many activities that are not entirely out of the question, leaving options open to me that may not be suitable for some wheelchair users, for example. However, the pain factor takes some trial and error, and the errors are terrifying!

I remain a bit apprehensive about what my future travels have in store for me - and whether my health will ever allow me to do some of the more adventurous things that appeal now but would have terrified me when I was younger - but it's also a new adventure, an opportunity to do things that seemed impossible and unattainable only two years ago.

So I strike forth, conscious that the decisions I make at this stage determine the success of the trip, and even whether I come home in a reasonable healthy state. I cannot follow the independent traveller footpath on this occasion. "Rustic" facilities are out of the question, and even the local terrain and its crowds receive careful consideration before major decisions are made. I can't afford the flexibility that I would, in other circumstances, relish. Climate is a greater issue than before, and while I have never enjoyed humidity personally, my body seems to relish it. I must find a new way to travel, grasping at opportunities and pragmatically rejecting fun activities that are not in my best interest.

From this side of the pharmacy, every travel experience will be new: scarier, less predictable and wholly unknown, but also exciting. I look forward to the journey.