Make the most of your bed

Zoe Williams writes: `Don't be embarrassed to lie down in company or to have visitors when you are in bed. When lying on your side, it may improve comfort to have a pillow or cushion between your knees. A bed cradle keeps the weight of the covers off your feet. These are available through Occupational Therapists, or disability catalogues, or homemade by cutting up a plastic washing basket. Also a good supportive mattress with a softer layer on top may be the most comfortable to lie on.'

Spenco soft pressure-relieving mattresses can be obtained from Spenco Healthcare International, AC Ltd, Burrell Rd, Haywards Heath, West Sussex, RH16 9T1-V (09403 329900) and these are sometimes available through district nurses or occupational therapists.

[And don't forget that medical fleeces to relieve pressure sores are available from Bowron, freephone 0800 212198 - Ed.]

Can't always get to the loo?

Lakesway Care Plus make a very lightweight, compact disposal potty that you can use sitting down. It works by turning liquids to gel and can be used several times, then disposed of when full. For more details, call 01524 732398. Alternatively, Anita Roddam recommends Boots' Cygnet female urinal (for picture, see InterAction 29).

Personal assistance

The Gateshead Council on Disability has put together six clear and comprehensive guides on independent living, including:

The six booklets cost 1 altogether and are available from Gateshead Council on Disability, John Haswell House, 8-9 Gladstone Terrace, Gateshead NES 4DY, tel. 0999 477 3558.

If you would like help recruiting, employing or managing a personal assistant or want any information about personal assistance, please contact the National Centre for Independent living, 250 Kennington Lane, London SE 9 9 3RD (020 7587 1663), or contact Independent Living Alternatives (020 8959 3611).

Independent living events

Independent Living is supported by the Disabled Living Foundation, who provide information about equipment to make life easier (helpline 0870 603 9177). The event will take place on 13-14 September at the Wembley Exhibition Centre.

The Rehab & Care Show is on 29-30 November at the NEC, Birmingham.

At each event, you or your carer can compare a range of disability products with a test track in operation for the many scooters, powerchairs and wheelchairs on display.

Nottingham Rehab, one of the worlds largest suppliers of the smaller items, will also be hosting its small products shop. Both shows are free to enter. For more details, call the ticket hotline on 0870 751 1437.

Fully supported resting positions

By Kate Sweeney

Physiotherapist at Westcare ME charity (0117 923 9341)

No. 1 Crook Lying Lie on your back with your knees bent, use as many pillows to support your knees as you feel you need. This puts the lower back in a comfortable and well supported position. Support your head with one or two pillows.

Place each arm on a pillow giving support from behind the shoulder along the length of the arm, wrist and hand.

Extracts from a day in the 'non-life' of a person with severe ME

By Carol Rogers

10.30 am Stagger the three paces from my armchair back to bed and gingerly switch on one heat pad for my freezing feet and another for my aching right arm. Try to get my brain to stop thinking for a bit as it's gone hyperactive; but then gently coax it to ponder on the problem of how to get hold of a pair of summer sandals that weigh no more than my winter slippers. The obvious answer is for my mother to take the kitchen scales to the shoe shop, but decide against this. My mother would almost certainly be certified, and then who would look after me??

12 noon My care assistant arrives to help me wash and dress ... after she has left I feel exhausted with the effort of trying not to laugh but decide it was worth it. Lie down to rest again until lunchtime.

1.00 pm Do my lunchtime walk: - four steps from the bed to a seat, rest for five minutes, four steps to my armchair. Eat my mashed/pureed lunch, carefully counting the mouthfuls as I go to prevent my stomach from panicking if I inadvertently give it more than it's used to.

2.30 pm Complete a row of knitting by doing five stitches, resting five minutes, doing another five - and so on. Reflect that by the time I finish making this dishcloth for my mother, she'll be too old to do any washingup anyway.

3.30 pm Back to bed for a couple of hours. Am wakened by muffled snoring noises from under the bed and realise that my cat Geoffrey is also taking his afternoon nap. Spend several minutes trying to work out the least tiring way of removing an unwanted cat from under a bed. My mother comes in to find me blowing my hair dryer under it.

5.30 pm Manage to raise my lead-like body to a sitting position once more. Am ready to attempt my twice-weekly trip downstairs on the stair-lift. I reach the bottom of the stairs virtually intact and my mother wheels me into the dining room for a silent dinner. Later we retreat to the lounge where, catching a glimpse of a newspaper heading, I ask my mother `What's the Euro?' Five minutes later I have a badly spinning head and wish I hadn't bothered.

8.30 pm Treat of the week - my mother wheels me to the toilet, where I get a real buzz from being able to use the loo, flush it myself and swivel round to wash my hands at the adjacent sink - all infinitely preferable to the mortification of my bedroom commode.

9.30 pm My care attendant returns to put me to bed. Tells me she has spent the evening with a friend, gossiping about whether they and other friends would be better or worse off without their current boyfriends /husbands. The pain of my own broken marriage and enforced celibacy starts to well up again and for the 10,000th time I silently offer it back to God. Manage to shut her up by telling her, deadpan, what I have been learning recently about supporting my inner child.

10.00 pm Lights out. Ask God to bless my mother a hundred-fold for all her devoted care; and reflect thankfully that another day is over...

Five minute fun

Naomi Whittingham writes: Board games can be too exhausting, but small travel games like Connect 4 can be completed in a few minutes. Playing a short game can be good for entertaining a visitor as the pressure to make conversation is taken away.

If you have several players, `Consequences' can be good. Each player has a piece of paper and writes a line of a story, folds the paper over and passes it on to the next player to write the next line. At the end, open out the paper to reveal the completed story.

Evelyn Walton adds: When my energy is at its lowest I he with my eyes closed and take myself on an imaginary outing. My favourite is a visit to the china department of a local store (!) but a walk through the woods, a wander along a beach or even a day at school can be great. It needn't be depressing, and I have found that I can totally immerse myself in the experience.

Stop press

45,000 Installation

Apologies to everyone who is waiting to receive the travelling '45,000 Installation' representing people housebound by ME. I have sadly sustained a severe relapse and am unable to carry on the initiative for the time being. Many thanks for so many appreciative and supportive comments. Be assured that the Installation has already positively represented our interests in many quarters and will do so again! Anita Roddam

InterAction No. 34 August 2000 p32 - p34

ACTION FOR M.E. 3rd Floor, Canningford House, 38 Victoria Street, BRISTOL, BS1 6BY