Many of the people that we talked to discussed their problems with everyday travel and long journeys for holidays or work.
Car travel was often considered the best option because they felt in control and could stop when needed. Some also enjoyed driving and found it a welcome distraction from their pain. However, a few were concerned about driving in case they had a flare-up of pain or their medication interfered with their driving. Some preferred to be a passenger so they could take extra medication on long journeys.
Most could manage short journeys by car. However, nearly everyone said that on long journeys they needed to take regular breaks to get up and walk around or lie down. A man explained that he would stop about every 45 minutes and if his pain was bad he would drive on smaller roads so that he could stop easily.
Breaks up long car journeys and when his pain is bad drives on smaller roads so he can stop easily.
A woman had taken to carrying a camping mat with her so she could lie down at service stations. A couple of people had camper vans which they used for holidays. One man said he found his great because there was no pressure when he went on holiday and he could easily park up and have a sleep.
Took to carrying a camping mat on long journeys so she could lie down when she needed to.
Finding a comfortable car was important. One woman recommended trying out car seats before buying. She also used a special latex cushion to make the seat more comfortable. Others said that cars that were higher off the ground, for example people carriers, were the most comfortable. Power steering was also helpful.
Some people qualified for a special mobility allowance which could be used to help run a car, or use taxis (see also ‘Financial effects and benefits’).
Public transport is becoming much more accessible for people with disabilities. However, many people that we talked to found travelling on local buses very uncomfortable because they were crowded and other passengers didn’t pay attention to the disabled seating signs and they could be bumpy, particularly if the driver was in a hurry.
One woman took the bus to work but found it annoying when people parked in the bus stop because the drop from the step was bigger and difficult to negotiate.
Some preferred not to drive long distances and took the train or coach, particularly when they were going on holiday. Trains were seen as a good option because people could get up and walk around. One woman found it helpful to take a hot water bottle with her on long journeys and told us that she is well over the embarrassment of getting it filled up at the buffet car.
On long train journeys she arranges for assistance with her bags and takes a hot water bottle.
Holidays were important for some of the people that we talked to who felt that they were a good opportunity to relax and spend time with the family. Several felt that going to a warm country or swimming regularly eased their pain.
Some people had given up trying to have holidays after bad experiences travelling or with uncomfortable beds, unsuitable bathrooms or accommodation. Some others, especially those on benefits, simply didn’t have enough money to go away on holidays.
Flying often put people off going abroad because they didn’t think that they would be able to sit for a long period. Those who had flown told us that they made sure that they got up regularly and walked around. A woman who used to live in America joked, ‘I have walked the Atlantic many, many times’.
It was also sometimes possible to book a seat with more legroom in advance or ask on the day if it was possible to sit next to an empty seat. One man found it reduced stress to book a wheelchair for the airport. He also said that he asked to be parked next to a lift when using a car ferry.
Asks for special assistance and a wheelchair at airports and on ferries ask if he can park near…
A few people had set themselves goals of going on more active holidays camping or walking and had gradually worked up to them using pacing (see also ‘Pain management: pacing and goal setting‘).
Set a goal of going on a walking holiday and managed to achieve it by gradually increasing his…
People had some other good tips to make travel easier:
- Book train seats in advance
- Arrange help with luggage at train stations
- Buy good quality luggage with wheels
- Pack light
- Buy toiletries when you get there, or take small quantities in miniature containers
- Pack extra medication in case of flare-ups
- Pace yourself
- Don’t be tempted to overdo the sightseeing
- Stay in self-catering rather than a hotel, so you can move around at dinner time
- Make use of the swimming pool to do some exercise
- Get to the airport early so you don’t have to queue