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How To: Go Places and Meet People

by Jane Colby (Writer about Town)
Member of the Chief Medical Officer's Working Group on CFS/ME Children's Group
Executive Director of Tymes Trust
former Head Teacher

Many people with ME contact us to ask whether they should or should not take a holiday, and to discuss what they need to take into consideration. Here are some of the hints that we usually give.

• First, make sure that you are strong enough to travel. You may need to consult your doctor about this.
• Consider how far you wish to go. Perfectly good holidays can be had not far from home, making the journey much less exhausting.
• Try to get someone to get your case out of the cupboard and do your packing for you. It's exhausting.
• If possible, have a travelling companion; someone to carry your bags for you and to be there on your holiday in case you need practical support and a friendly arm to lean on.
• Try not to walk any further than you need to on the journey; save your energy for the holiday. Panic and weepiness can occur if you get too exhausted. In fact, weepiness is often a good barometer to how exhausted you are becoming.
• Once on your holiday you may want to do a little gentle walking but avoid anything too strenuous; take taxis or get a hire car and avoid dragging round shops for hours. Being in new surroundings with different food is tiring enough without overdoing things. There is no law that says you have to push yourself through the pain barrier. Do only what you feel comfortable with. You don't want to come back needing a holiday to recover from your holiday!
• Carry small snacks with you as you may feel ill if you don't keep up your blood sugar levels - sweets or chocolate (if it doesn't give you a headache) may help from time to time. Try not to eat one huge meal and then nothing for hours. You'll feel best if you keep your blood sugar fairly constant.
• It's almost certainly best to avoid alcohol as it could make your symptoms worse. At least half the people with ME can't tolerate alcohol because of its effect on the brain. ME affects the brain and central nervous system.
• It may be a good idea to avoid too many spices in your food. Many people with ME find these upsetting to their digestive system and they can also produce headaches.
• If you are in a hot sunny place, wear sunglasses (light can give you headaches) and a hat (you may find that sunlight also gives you headaches). Drink plenty of water (bottled may be best, depending on where you are) so as not to get dehydrated. Avoid sitting for too long in direct sunlight.
• Choose your holiday destination carefully. A battery of jabs can be a recipe for relapse so try to go somewhere that doesn't require them.

Enjoy yourself!!

So how do you avoid walking too far on the journey? This is the text of a feature I wrote for Tymes Magazine (with a few extra numbers and tips at the end):

You should have seen the envious eyes of the other airline passengers as I sailed effortlessly past (no, the wheelchair didn't have a billowing sail, but it might as well have done) to the head of the queue. My friend grinned smugly as we were both waved through like royalty.

There are few advantages to having ME but believe me, this is one of them. You want to see a long- lost relative? Ring the airport, utter the magic word "disabled" and it all swings into action. Well, almost. You do need to explain what you need, and of course not much comes free these days. But the fee charged by the private companies that provide this service at airports is not large. Book assistance in advance. You will be met at the check-in desk, your baggage will be checked in for you, and you'll be wheeled everywhere - the loo, the coffee bar, and eventually right onto the plane. When you book, you'll be asked whether or not you want to step out of the chair and climb the steps onto the plane, if there is no pod.

Getting to the check-in desk in the first place needs thought. Priority No.1 is to have an orange badge to qualify you (or those driving you) to use disabled parking spaces, as you can park for 2 hours on double yellow lines. At the airport your badge qualifies you to park in a disabled space right next to the bus stop in the Long Stay Car Park. The bus stops normally have telephones to phone the terminal and explain that you are disabled and need help with your luggage. (A lightweight, smallish case with wheels and a collapsible handle is best, so that you can move it a short way yourself if necessary.) Should a non-disabled space near the bus stop be empty, use that and take your orange badge with you. Depending on your destination, you can either use it there or it will act as proof that you are disabled. Check out the facilities at your destination and book anything you can.

If you prefer a taxi or a relative to drop you at the terminal building, remember that the Short Stay Car Park is not "near" the terminal in ME terms. The best thing is to have two adults, one to drive and park the car and the other to help you. Even better to have a travelling companion because ME is not just a physical limitation. You could become overanxious if something does not go as planned. (Low cortisol levels in the brain can cause an exaggerated stress response.) If the attendant leaves you in the coffee bar, for example, and goes to help another passenger onto their plane, you could exhaust yourself worrying that you will miss yours. But this is normal practice and I haven't missed one yet. Let the airline know if you have special diet requirements. If you hate flying or are advised against it, you'll find similar arrangements provided by ferry companies. If you are in a car, they will park your car near the lift to the main decks.

Going by train? Plan how to get to the station with as little energy output as possible, and book assistance to meet you there - this is free. (Some local stations are still poorly equipped so do check with the central information service, featured opposite) You'll be wheeled - or driven by buggy - right to your carriage and your bag carried onto the train. At your destination this service will be repeated. The golden rule is to book well in advance wherever possible. Regard the whole thing as an adventure. I've been wheeled across tracks at a deserted East Anglian station with the birds singing and a chatty member of staff asking about ME - far more fun than the usual boring journey. With a disabled person's Railcard you save 30% on your journey and so does any companion. If you book well ahead your tickets can be posted to you.

Buses? My personal view is, forget them unless you know the service well, have an up to date timetable and are certain that you can get help. Privatisation has caused havoc with buses. The London Underground can also be exhausting. If you can afford it, London cabs are better, and there are also special buses linking rail terminals. Tell the taxi driver you are disabled and be as charming as you can. He'll help you, will drop you at the correct station entrance to be met by the staff, lift your bags and even alert staff for you if necessary. Just be nice, tip him if you can, and he'll do it again for someone else. Some cab drivers like to talk. Don't wear yourself out, but do at least respond! One driver whose daughter had ME bought my book from my lecture bag and carried the bag right into my train.

Car travel is generally the least exhausting unless you are driving yourself. In this case, a companion can lessen both physical and mental effort by sharing the driving and/or route-finding - also by refuelling the car, as the trigger mechanism on the fuel pump and the weight of the nozzle can both present problems. At busy motorway services, you'll be glad you have that orange badge.

National museums, galleries and public events e.g. the Boat Show or Motor Show all cater for disabled people, and legislation is improving things all the time. In London there is one number to ring, covering the major venues. Book a disabled parking space and a wheelchair (take someone with you to push it). And remember - with the best will in the world, human error can mess up arrangements. If possible, leave plenty of time, take food and drink (not too heavy) and carry a mobile phone with any numbers you may need. I have sat by the taxi rank under a rail terminus and phoned the terminus: "I'm here - where are you?!!" The buggy duly arrived.

Travelling is not for your worst days and you may be rough afterwards - though not necessarily, if you have enjoyed your adventure and it hasn't been too stressful. I have met many fascinating people this way. I hope that you will too - though don't give away home details or accept lifts. Always be polite, even when things go wrong and, if you can't go, do take a moment to cancel your arrangements. It will be really appreciated.

A Day Out in London

National Rail Enquiries (0345 484950 - local call rate) Ticket bookings. Referral to passenger assistance office of relevant rail company

London Transport Disabled Passengers’ Assistance Line (0171 918 3312) For assistance on trains in, and around London, including the Underground

The Tate Gallery (0171 887 8000) 6 disabled parking spaces. Wheelchairs on free loan. Only 6 wheelchairs in gallery at any one time. Book 3 days in advance.

Imperial War Museum (0171 416 5000) Disabled parking spaces. Wheelchairs on free loan. Lifts, ramps and friendly assistance! Book 48 hrs in advance.

The Science Museum (0171 938 9788 - Disabled Persons’ Enquiry Line) 12 disabled parking spaces. 6 wheelchairs on free loan (2 for children). Book 7 days in advance.

Numbers and Tips

When planning to fly, contact the airport for assistance with parking, access etc. To arrange special diets, contact the relevant airline. Airports normally charge a small fee for passenger assistance services.

Many towns have a Dial-a-Ride service. To find out whether it operates in your area, contact your local council.

‘Artsline’ provides information and advice to disabled people wishing to access arts and entertainments venues in Greater London. For more details contact Artsline at 54 Chalton Street, London NW1 1HS Tel: 0171 388 2227 Email: artsline@dircon.co.uk. Artsline Youth Project has just been launched to empower young people aged 14-25. For more information, you can contact Sarah at the above address, fax her on 0171 383 2653 or by email: Sarah@artsline.dircon.co.uk.

It’s always worth checking with individual arts companies or venues as many provide disabled assistance and concessions. For example, the English National Opera have a free ‘Access Programme’, including support materials and use of Stall Boxes for wheelchair users. Ticket concessions are offered to disabled patrons and one companion. For more info, contact the ENO Box Office on 0171 632 8300.

RADAR (0207 250 3222) suggests checking in early to allow time to sort out any problems. The charity produces two useful guides: "Access to Air Travel - A Guide For First Time Disabled Travellers" "Getting There - a Guide To Long Distance Travel for Disabled People"

Tripscope (08457 585641) gives travel advice for disabled people over the telephone.

At www.allgohere.com you can find the major airlines' services for disabled passengers

Don't forget that your stamina is limited; many disabled people do not also have an energy-depleting illness and you must make arrangements that will, so far as possible, take this factor into account as well.

This article was first published in Tymes Magazine, Issue 28, Spring 1999. The issue also includes young people's experiences of going places and meeting people and Dr Darrel Ho-Yen's thoughts on energy, boredom and Elvis Presley. Mmm, you'll have to read it to find out more about that! Copies are available at £1.50 each by sending your details and a cheque, payable to Tymes Trust, to: PO Box 4347, Stock, Ingatestone CM4 9TE..

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