Have you ever made a discovery that you wish you’d made earlier? For me, ear defenders, a lying down wheelchair and books on tape have all been a bit of a revelation. Even some very simple ideas, such as drinking straws and plastic cutlery, have made a significant difference.
If you don’t know that hands-free phones exist then . . . well, you don’t know they exist. So how can we find out what gadgets and energy-saving techniques are out there waiting to be discovered by us?
It might be worth keeping your eyes peeled for equipment ideas. One way to do this is to browse through catalogues such as Ways and Means (the address is at the end of the article). Many items are expensive and it is often impossible to tell whether it will be of any use to you. However, some areas have a Disabled Living Centre where you (or someone who knows your needs) can try out and sometimes borrow equipment to assess its suitability. For the address of your nearest centre, contact The Disabled Living Foundation.
The Disabled Living Foundation is a national organisation with a database of equipment to help with day- to-day activities. The foundation provides information via a telephone helpline, post and e-mail. They are happy to discuss your particular needs to try and work out whether they know of anything that may be useful. The more specific you can be, the better. For example, if you know that you would like to try a bookstand, they can give details of different designs on the market.
Occupational Therapists (O.T.s) also offer suggestions and may be able to fund some types of equipment (such as shower seats, wheelchairs, hair-washing trays, ramps). You can contact your local Social Services to find out about referrals for O.T. assessment of your physical needs.
If you decide to buy a piece of equipment yourself, it is worth knowing that people with chronic illness can claim VAT exemption on some products, at the time of purchase. To qualify, items must be specifically designed for people with disabilities; for example a kettle tipper would qualify, but a blackout blind would not as these are not specifically for people with disabilities. Ask the supplier for a form or contact your local VAT office for VAT booklet 701/7/94 (their number is in the phone book under Customs and Excise).
Many people with M.E. find listening to spoken word cassettes easier than reading. Local libraries stock talking books and there are also two national postal libraries. Listening Books lends the same high quality recordings that are available in the shops. Subscription costs £50 per year and postage to and from the library is free. Calibre has over 6000 books which have been recorded specially for the library. Membership and postage are free. The Talking Newspaper Association UK (TNAUK) records many magazines and newspapers onto cassette. Subscription costs £45 (concessionary £30) per year plus postage for up to 3 titles. They can provide details of local talking newspapers and other tape services. To join Listening Books, Calibre or TNAUK you will need a doctor’s note to show that you have a disability which causes difficulty in reading or holding books or magazines.
Large print may be easier to read than smaller text. Large print playing cards are good for playing in low lighting and a playing card holder takes the strain off your hands. If you enjoy films but are limited in the amount you can watch, you might like to buy a film guide so that you can select the very best to video, and then watch only a bit at a time. Set an alarm for your favourite TV programme or other times you want to remember. A countdown timer (available from JUCY Trading) can aid pacing, and remind you to stop an activity before you do too much.
Another pacing idea, which can be used for visitors, family or lessons, is to use coloured cards. When you feel OK have a green card on view. An orange card silently indicates to the other person that you will need to stop the activity soon and a red card means that you need a rest urgently. A ‘Quiet Please’ notice on your bedroom door lets other householders know when you are trying to rest and need peace.
Buzzers with an intercom can be used to answer the door, or to call carers. Some locks can be operated from a button inside, enabling you to let people in from the bed/chair. Carers could take a mobile phone with them when they go out so that they can be contacted.
If you are up to going out alone, you might decide to carry a mobile phone in case you need to ring for a lift, taxi or breakdown service. A walking stick with a seat provides a place to sit down wherever it’s needed. Some supermarkets have a wheelchair for shoppers to borrow or a first aid room where you can rest. Shop assistants may be able to help with finding goods, pushing a wheelchair, or carrying things to the car for you.
Buying recycled clothes from charity shops or jumble sales can be particularly useful if you have difficulty finding clothes that are comfortable (and it can be a hundred times cheaper than buying them new!). Several layers of thin clothes are more flexible for temperature control, and you may find light clothes (such as a fleece) easier to wear than a jumper. If buttons or zips are a problem, try replacing them with press studs or Velcro (although Velcro catches on some materials).
One way of limiting letters to friends is to keep a stock of postcards. Sometimes you might like to write a standard letter to send to more than one person, and get it photocopied. Much of the energy spent on writing is used gripping the pen; look out for pens with special features to improve grip, or use an elastic band. Try out different pens to find out which ones take the least energy to use. Some pens need a lot more pressure than others to get the ink flowing. If you tend to forget things, try keeping notes as a kind of memory extension, perhaps in a filofax or diary to keep them organised. Alternatively, you may find it easier to use a computer for both writing and organisation.
If I had to pick a single ‘tip’ as being the most important it would be to listen to your own inner wisdom and to what your body is telling you. This can be incredibly difficult, especially when it conflicts with our desires or with other people’s opinions or expectations. Be patient with yourself. Take time to do things you enjoy.
|Addresses and Phone numbers:|| |
|Ways and Means||Freepost, Ashby de la Zouch, LE65 1NG Tel: 0845 606 0911|
|The Disabled Living Foundation||
380-384 Harrow Road, London W9 2HU
Tel: 0870 603 9177
E-mail: firstname.lastname@example.org Website: http://www.dlf.org.uk
12 Lant Street, London SE1 1QH
Tel: 0207 407 9417
Aylesbury, Bucks HP22 5XQ
Tel: 01296 432339
|Talking Newspaper Association UK||
National Recording Centre, Heathfield, East Sussex, TN21 8DB
Tel: 01435 866102
|JUCY Trading Ltd||
43 Selwood Road, Glastonbury, Somerset, BA6 8HW
Tel: 01458 830554
(a small timer costs £6.50, a large timer costs £11.20)
Tel: 0845 758 5641
(provides information about travel and mobility for people with special needs)
The M.E. Tips Collection (a compilation of ideas from people with M.E.) is on the Internet: www.metips.co.uk or from Action for M.E. or the M.E. Association.
This article was printed in TYMES magazine Issue 32 Summer 2000
TYMES TRUST AND YOUNG ACTION ONLINE, P.O. BOX 4347, STOCK, INGATESTONE, CM4 9TE