In addition to the Blue Badge (see Parking Concessions) various schemes are run in conjunction with local councils/ social services departments, which allow disabled people to use public transport for free (e.g. the Freedom pass in London) or to take advantage of reduced fares in wheelchair accessible taxis. It is generally easier to obtain these concessions if you receive the higher rate mobility component of Disability Living Allowance, though you may be able to apply with a doctor’s support. If you have a car, use the back seat as a place to rest with a pillow and sleeping bag (remember to lock the doors).
An M.E. travel kit bag might contain some or all of the following: eye mask, ear defenders, ear plugs, wrap-around sunglasses, sun cap, plastic bags for travel sickness, a damp flannel, water to drink and snacks.
Try to get as comfortable and well supported as possible before setting off. You may benefit from having padding under your legs and arms, a neck pillow and perhaps a hand-towel around your waist as a lumbar support. Reduce vibration by sitting on a pillow and putting another under your feet. Relaxation techniques such as breathing exercises can help to reduce the impact of the movement (see section on Resting). Smooth, straight roads are generally the easiest, although motorways are noisy and full of fumes. You may find air conditioning and good suspension helpful. Keeping your eyes closed when travelling reduces the stimulation. If you are able to rest in the vehicle, it can help to stop regularly, although some people find it easier to do the whole lot in one go.
A carer may be able to check out the route beforehand to minimize problems on the day. Plan routes around toilet stops or if necessary take a portable urinal. Travel at off-peak times to avoid predictable traffic jams. Some road rescue services have priority service for disabled customers. Consider taking a mobile phone if you have one. Explain a bit about your needs to the person driving; for example asking them to drive as smoothly as possible and not to chat or have the radio on. As the driver will be occupied, it may be worth having a second helper to care for you while on the move.
You may need to travel lying down or in a reclined position, although this leaves you without the protection of a safety belt. The most widely used method is to recline the front seat. You could try sitting in the back with your legs raised on a pillow on the fully reclined front seat. Another method is to lie on cushions on the back seat, or in a large car lay the back seats down flat and create a ‘bed’ with lots of padding, in the boot space. Probably the safest method of travelling in a horizontal position is by stretcher ambulance. With a doctor’s backing, these can be provided on the NHS for medical journeys. It is possible to hire one from St John’s Ambulance or the Red Cross but this is very expensive. Funding for a particular journey can be sought from local charities such as Rotary and Lions Clubs. Ambulances and Dial-a-ride services often go round picking up several people, which extends the length of the journey. If this would make you more ill explain your difficulty and request a direct route.
Bear in mind that you may feel worse than usual after a journey and so be less able to tackle stairs, walking and general activity. It’s an idea to try and organise for a room to be ready before you arrive so you can rest without delays. Packing and other preparation should be done well in advance (ideally by another person) to enable you to get plenty of rest before the journey.
It may be worth suffering for a few days in order to get a change of scene, but perhaps only if you stay for a fortnight or so to give yourself time to recover and have some quality time. Staying somewhere close to home can make a journey more manageable (even the next street is a change if you can’t normally go there). Where travelling is likely to be bad for your health, do ask (and keep asking) for home visits from doctors, dentists and therapists wherever possible. If having both a journey and an event in one day is too much, you might be able to stagger it by staying somewhere for a night or two. For example, a hospital appointment may be more possible as an inpatient than as an outpatient. If the aim in an outing is to improve quality of life, and yet you suffer so much that it has the opposite effect, you may find you benefit more from staying at home and finding other things to enjoy.
Chemical Sensitivities : Driving : Holidays : Light Sensitivity : Noise Sensitivity : Pain : Parking Concessions : Quality of Life : Shopping : Sitting : Toilet : Wheelchairs
YAO How To: Go Places and Meet People; Travel and Severe M.E.