Robert Ferguson dreams of a better way to give bedbound people access to items they might need throughout the day.
The card said, 'This is my new telephone number. Call me!' Knowing that Janet had been bedbound with M.E. for 15 months, I did, and arranged to visit her the next day. Her front door had a smart new intercom. Pushing the door at Janet's instruction, I went through to find her - of course - in bed. 'Well, you have had some changes to this flat!' I said, 'And you've more colour in your cheeks than usual.' 'It's makeup,' she grinned, 'isn't it wonderful?' I looked around, but no cosmetics were in sight. On her duvet, there was only a little black box with an aerial and a joystick. 'So where are the cosmetics?' I asked. 'Ah,' she replied, 'Go and stand over by the window and watch.' And the miracle took place.
From a far corner of the room, a thing like a librarian's trolley whirred and then - of its own accord, apparently - moved smoothly across the room to Janet's bedside. 'Pull that panel on the end of the trolley for me,' she requested, 'and plug it in here by my head.' I did as she asked. As I pulled, a power lead and telephone wire uncoiled from within the trolley to allow me to plug them in as she directed. And, on the shelves of the trolley, I saw that she had her telephone, a radio, a television-cum-VDU and a computer keyboard. There was also a sketchpad, pens and pencils, a box of cosmetics and a selection of books.
'Now I have a computer,' she said, 'I can talk to so many more people by e-mail. And you haven't seen the fridge yet'. There was another whirr, the trolley turned itself endon to Janet's hand, so that she could open the door in a white panel and, to and behold, a fridge full of cool drinks.
'It was made for me at the local tech college as a project,' she said. 'I'm their guinea-pig. If it continues to do what I want, they are thinking of making them for other bed-bound people. The controller is just like those made for radio-controlled toys. And the wheels are driven by a motor from an electric wheelchair. The batteries for the engine power the fridge and computer when the trolley's unplugged from the wall, and are recharged when it's plugged in.'
'This is much better than those shelves you had around your bedhead,' I mused, 'no more putting things where you can't reach them; and you can fit so much more on the trolley.' Having hours alone each day between carers' visits, Janet used to run out of things, or want something she hadn't asked them to put near her. She beamed at me: 'Isn't it a dream?' Introducing REMAP - the 'designer' charity
REMAP can't perform miracles, but its volunteer engineers, craftsmen and occupational therapists may be able to help solve some of the practical problems of living with M.E. Organised into local panels around the UK, REMAP's volunteers design and construct otherwise unavailable equipment for people with individual needs due to disability.
Projects undertaken by the charity are varied and include designing a hoist for lifting shopping to an upstairs room, a computer keyboard support to be used lying down, and wheelchair adaptations such as arm supports and 'sandwheels' for beach trips. There is no charge to the person supplied with equipment though donations towards materials are welcomed. For more details contact REMAP at Hazeldene, Ightham, Sevenoaks, Kent, TN 15 9AD; tel. 0845 13 00 456 or go to www.remap.org.uk
Simon McGrath outlines some relaxation techniques that have helped ease his chronic pain
We tend to be afraid of our pain, to resist and struggle against it - and this is much as nature intended. Pain - and our desire to avoid it - protects us, alerting us to injury and ensuring that we rest damaged parts of our body while they heal.
Chronic pain is not always so useful. With M.E., it can be a sign of overdoing things but sometimes the pain is there even when we have been taking things easy. Our natural instinct to avoid and struggle against this pain merely creates tension - adding to the discomfort, the exhaustion and the pain itself.
The solution, in theory, is to relax. Relaxation not only releases tension, it also boosts levels of endorphins which are the body's own morphine- like painkillers.
Of course, relaxing is not easy when you are suffering physical discomfort. Using a guided relaxation tape can help, a selection of which covering different techniques can be borrowed from the AfME library. Pain often makes concentration difficult so simple methods tend to be best, such as gently tensing then releasing muscles. With practice, it becomes possible to relax muscles without tensing them first.
Other tapes use visualisation to help you relax and I find that when my pain is bad, the most helpful images are those that relate directly to pain relief. For instance, imagine warm, golden, soothing light flowing in gentle waves from the top of your head to the tips of your toes, releasing tension and pain... Think of the pain as a river flowing through you and imagine letting it just flow, unresisted. Struggling against the pain is a bit like putting a large boulder in the river: the river flows on but now rages angrily around the boulder. Resisting pain has much the same effect; the more we struggle, the more it hurts. Experiment until you find images that are helpful for you.
When it is very bad and you are exhausted, being aware of your pain is about the only thing that it's not difficult to do. The idea is to accept the pain for now, simply because it is there, whether we like it or not. Start by observing the sensations are causing your physical discomfort; perhaps a throbbing in your head, a burning sensation on your skin (where? all over, or just some parts?) or a dull ache in your muscles (which ones?). Seeing each component as an unpleasant sensation rather than as 'pain' somehow seems to help, perhaps because it puts some distance between you and the pain, or maybe because the better we know something, the less we fear it.
In a way, you are now watching the pain rather than fleeing from it. Really letting go is tricky, not least because it is something you 'allow' to happen rather than something you 'do'. Trying too hard merely creates more tension. When it does happen, the experience is a little like finding yourself in the eye of a storm: all around you the pain rages on, yet you remain in the still, calm centre. The resulting feeling of peace releases tension as well as pain-killing endorphins and can make physical suffering less overwhelming.
A big part of accepting pain is to treat yourself with compassion and kindness. Recognise how difficult it is to be in great discomfort, but rather than getting angry about it, feel for yourself as you would feel for someone you love if they were in great pain. Each person's pain is unique to them and everyone has to find their own path to relief. But some people might find these techniques of the mind to be a valuable source of relief; they have certainly eased my suffering.
Melzack and Wall (1993): The Challenge of Pain, Penguin, London
If you find it hard to unwind, a guided relaxation tape can help by providing soothing ideas and images. All the tapes Simon has reviewed here offer practices that can be done lying in bed, and he has tried to choose ones with a particularly gentle pace. If you find it helps, pause the tape for a break until you are ready to go on.
Stephen Levine, who developed these techniques while helping pain sufferers in hospices, eases you slowly through the process of accepting your pain. It isn't easy at first, but can bring about a feeling of deep relaxation and peace; I have often drifted off to sleep while listening. The tape is 20 minutes each side, but you can dip into it anywhere and listen to as much or as little as you like. £8.50 inc. P&P from Living Dharma Tapes, Poulstone Ct, Kings Caple HR1 4UA.
Although produced by the Pain Research Institute, the four relaxations on these tapes work just as well if you are not in pain. They start with a ten minute mental relaxation of each part of the body. The next exercise adds a section to help you relax on the move. The third relaxation uses a 'tense and release' method to relax each set of muscles in turn. The final exercise uses mental imagery and is almost selfhypnosis, though you remain fully conscious throughout. 80 minutes in total. £13.99 inc. p&p from Talking Life tel: 0151 632 1206.
Diana Lampen guides you through your body, relaxing each part in turn with the help of your breath (11 minutes). A brief visualisation follows, then the tape plays out with relaxing music. Side two has a 13 minute relaxation with optional 'tensing and releasing' of muscles, followed by a lovely five minute visualisation of a seashore sunset, and more soothing music. Diana has also put together a tape for those in pain and others suitable for people with M.E. The complete set can be found in the AfME library or cost f5 each including P&P from Diana Lampen, 21 Heathfield Gardens, Stourbridge DY8 3YD.
The first of these two visualisations, (each under twenty minutes), takes you to a beach where you imagine yourself breathing in and out with the movement of waves breaking on the shore - a wonderfully relaxing experience. The second transports you to a beautiful garden, and from here you take a balloon trip; both include hypnotic background music. £9.20 inc. P&P from The British Holistic Medical Association (BHMA), 59 Lansdowne Place, Hove BN13 1 FL; also in AfME's library.
Imagine white light entering through the top of your head and slowly moving down through your body, soothing and stroking your nerves and giving you an internal massage. It makes for a very dreamy experience, which, with music, totals 17 minutes. There is another visualisation on the other side. £9.20 inc P&P from The Inner Bookshop Tel: 01865 245301 www.innerbookshop.com
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Simon has reviewed more relaxation tapes at his website:
InterAction Issue 39 - January 2002 p17 - 19
ACTION FOR M.E. 3rd Floor, Canningford House, 38 Victoria Street, BRISTOL, BS1 6BY