‘Getting a wheelchair is the best thing I have done for my illness’; ‘I can go out for longer and go to places that would mean too much walking’; ‘Mum pushes me round the garden’; ‘I can go for a "walk" with my dog’; ‘having the electric wheelchair means I can get around independently’; ‘it gives me a lot of freedom and allows me to save energy’.
Society doesn’t view wheelchairs in quite the same way as other modes of transport, even though buses and bikes are mobility aids too. Perhaps because of this, many people feel embarrassed by wheelchairs. I would urge anyone with M.E. to try one if they think it might improve their mobility. Using a wheelchair on an occasional basis can increase the enjoyment of an outing, even if you don’t need one most of the time. It needn’t stop you using your legs if you are able to walk; think about a child in a pushchair arriving at a playground. If you are concerned about being seen by people you know, go at first to a place where this is less likely.
In the UK it is possible to borrow a wheelchair at some shopping centres, hospitals and places of interest. Various wheelchairs are available on our National Health Service, if there is deemed to be a ‘clinical need’, and for the short term can be obtained from the Red Cross. Disability organisations may be able to advise you about how to borrow a wheelchair in your area, for short term or long-term loan. Alternatively, they can be bought privately, either new or second-hand. Find out as much as you can about different designs before buying; it may be possible to arrange a home trial. Funding for equipment can also be sought through charitable organisations.
If you are having your needs assessed, think carefully beforehand so that you can describe your difficulties as clearly as possible. It might help to write a list as a memory aid. Waiting times, availability of equipment and experience and understanding of M.E. vary greatly. Be prepared to persevere and contact lots of people, especially if trying to obtain a chair that is not a standard design. If you are too ill to travel to an appointment you could request a home visit.
There are different types of wheelchair and special features, some of which can be very valuable to people with M.E. Those with difficulty holding their head up for long might benefit from a supportive headrest. Elevating leg-rests are a possibility. It may be worth experimenting with different cushions, etc. to try to minimise pain or discomfort. To reduce vibrations (which can be a disabling problem for people with M.E.) choose large wheels with pneumatic tyres and stick to smooth surfaces as much as possible.
Think about how you will transport the chair, especially if considering a large or heavy model. You may be able to hire special transport sometimes if necessary (ask a local disability organisation). Lightweight chairs have the advantage of being easier to lift in and out of a vehicle and also to push or self-propel.
If you can’t sit up for long enough to use a standard wheelchair, you may be able to use one that reclines. Several models with semi or fully reclining backrests are available, in both manual and electric form. Fully reclining chairs can be used lying down flat. Check how easily the chair reclines (it may need two healthy people to operate it) and whether it is designed to be pushed in the reclined position (if not it may be possible to have it adapted).
Electric wheelchairs and scooters are helpful for some people with M.E. It can give an increased sense of freedom to be able to move independently, even if you need someone with you. Some types have a second set of controls designed for an assistant to use, and controls may be adaptable for particular needs.
Castor chairs have wheels like supermarket trolleys so they can be used where there is not much space. Some designs have footrest and/or handles but they are not as easy to push as a standard chair. They are for indoor use only, and do not fold up.
Using a wheelchair doesn’t take nearly as much energy as walking, but it does take both mental and physical energy. How much you are able to do will depend on your individual illness. Take it slowly and get someone else to push you (trying to self-propel is very energy -consuming). If you are severely ill, try sitting/lying in it at home first without moving around. No matter how adapted your chair and home are to your needs, you may still find that you are too ill to use a wheelchair at all. It might be suitable to combine a short trip in a wheelchair with time lying down, for example in a car or on a sun bed or travel mattress.
A version of this article was printed in InterAction, the journal of Action for M.E. Issue 28 December 1998
ACTION FOR M.E. P.O. BOX 1302, WELLS, BA5 1YE, UK