Travel, transport and holidays for those with chronic pain
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.
It's not the safest thing in the world to do so what you've got to do is plan your journey and take it in stages. Now if I was going anywhere in about 200 to 300 miles I'd have to plan that journey for at least the first two or three stops would be 45 minutes, then after that it would be as and when.
So I'd need to find out. I couldn't be in the middle of a motorway with 20 miles to go and be in severe pain. If I knew I was getting a lot of discomfort and pain. I'd actually have to get off the motorway and start going on the A roads and B roads, just so I know I could be able to stop.
So you've really got to plan ahead for things like that. It's all forward planning. If you want to make a journey, plan for an occasion it's basically what I say planning, forward planning, forward thinking.
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.
If we were going on a journey we knew we'd have to break the journey so that I could lie down whenever I needed to and I think by then the children were old enough to feel rather embarrassed by having a mother who was sort lying on the ground, but they put up with it, but I think a lot of other people gave us some very strange looks, particularly places like motorway service stations where I would be lying on the grass and it might even be raining gently but I needed to lie down and it didn't matter if I got wet. So we managed so we sort of picked up our lives as best we could.
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.
The amount of looks I've had when I've gone to the restaurant car saying 'Can you fill my hot water bottle up for me?' And most of them have been pretty good but some of them just look at you and you know like huh 'I've got a bad back'. You always feel as though you have to justify yourself. You know they usually have filled it for me but I kind of, you kind of have to get past that embarrassment of carrying a hot water bottle down the train which I am now. Well past that.
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...
Unless you say "Can I have a wheelchair please? Can I have special assistance". Okay they're the times you need it. Because if you're in distress over these situations your partner's going to be in distress because they're worried about how you're going to be. And these are the occasions you plan for.
I know that I can't cope with certain situations. As an able bodied person would. So we have to say "Yes I have a pain problem", there are certain situations which catch me out, airports are one of them, I know that. So I'll prepare for it by phoning up asking if they can have a wheelchair available and they get you through the checkout. They get you through customs. They get you through passports. They get you onto the plane and off the plane without too much difficulty.
Then you can think about, 'Okay, travelling is not as bad as it might be'. The same thing going on the ferry boats. We'll ask "Can we go'" because decks of ships on car ferries, there's all sorts of obstacles like big hooks and things like this, and they're a bit uneven with bits of iron work and stuff around.
And then you have to shove and twist through between one car and another. So there I always say "Can you park us near the lift please?". And so you get taken up in the lift. It's things like this to think ahead and avoid getting into lots of situations which can really mean that you and your partner don't enjoy your holiday. So these are some of the things that we tend to do.
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...
And they were planning a trip to [country], a walking tour. Now at that time my walking wasn't brilliant, I wasn't walking very far. So this trip was what, 6/7 months in advance. By now it was about six or eight months since my wife had died. And I signed up for this walking tour. But in the meantime, because the tour, they, they were planning to do 10-12 miles a day in the [mountains], I thought I'd better do something about my walking. And I hadn't walked more than about, if I walked ' of a mile it was going some for me.
So I started training for this walking tour and I used to go with my son-in-law into Snowdonia and we set ourselves targets. He was a walker, he was a runner, and he had to go at my pace which probably must have been frustrating for him [laugh].
But we would set off on walks, on his days off, he was a policeman, and on his days off we would set off for walks to get me back into some kind of conditioning and I used to find that quite excruciating doing that at first. But eventually I built up some fitness, built up some strength and I was able to survive the walks. So in the Spring I was able to go on this course. Not course, on this tour.
And managed to cope very well with the walking except, what I found I needed to do, was every morning before we went out on a walk I needed to walk for an hour to get myself warmed up because I was so stiff and sore. And when we came back in the evening I had to walk for another hour or 1' to save stiffening up in the evening. If I could keep on walking I was okay but if I stopped I was in a mess. But it so happened that on that walk, on that holiday, I met [wife's name], who is now my wife. And we walked together for eight hours a day for the week and at the end of the week decided to get married!
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
Last reviewed August 2018.