Severe M.E.

Edited by ZoŽ Williams

Preventing Pressure sores

Pressure sores occur when cells in the skin and tissues become damaged by insufficient blood supply, usually when a person has been in one position for a long time. They can also be caused by friction or shearing, for example sliding down in bed. Pressure sores can lead to pain and infection, but fortunately they can often be prevented.

If you are able to get up briefly sometimes, this will help to prevent sores. Otherwise, try to change position every hour or two, perhaps using pillows to redistribute the weight away from bony areas. If sitting in a chair, rock from one buttock to the other for a short time. A pressurerelieving mattress, mattress overlay or a special cushion can be useful to distribute your weight more evenly and may also be more comfortable. When moving, try to avoid dragging your skin across the bed or chair. If this is unavoidable, consider different techniques such as using a transfer board or hoist.

Watch out for feelings of numbness or a reddening or darkening of the skin (especially if it stays red when pressed). If this happens, take the weight off that area to give it time to recover.

Having the bed remade regularly is helpful, as is keeping clean if possible, especially if you are sweaty. A healthy diet and plenty to drink with enough rest and sleep are all recommended.

If you think you may have a pressure sore, contact your doctor or district nurse or for more info see:

Reprinted with kind permission of the Tissue Viability Society

Do you need special equipment?

If so, ask your GP to refer you to a local Occupational Therapist for advice, or you can refer yourself. They should be able to visit you at home for an assessment of your needs and may be able to provide useful equipment to make life easier. Rachel Dutton has a bathlifter, which she has found invaluable. 'It is very comfortable and means I can bath or shower safely and independently. I also have a trolley/walker which is extremely useful for carrying stuff like food and drinks from room to room.'

Other equipment which may be available includes a wheelchair, tap turners, a shower seat, hair washing tray, or commode. Rachel recommends looking through a catalogue beforehand so you know what to ask for.

The Disabled Living Foundation helpline can also advise on disability aids, tel: 0870 603 9177 Equipment catalogues: Care and Mobility tel: 01268 771191

KeepAble tel: 08705 202 122

Smith and Nephew Homecraft tel: 01623 754047

Support for carers

If you are providing most of the care which your friend or relative needs, you should be properly supported. The Carers National Association has published a booklet, The Carers' Guide to Assessment, outlining help available from Social Services. To request a copy, or for general advice, call the CarersLine on 08457 573369 Monday to Friday 10-12noon and 2-4pm. The Department of Health website for carers has links to other useful sites:

Roz Reynolds is offering a break suitable for carers at Cambridge Cottage in the Scottish Borders. To find out more about this place of 'privacy, peace and quiet' give her a ring on 01578 722400 or e-mail

(From the 25% M.E. Group newsletter - contact details for this support group on page 47)

The Kiloran Trust exists to provide supportive breaks for carers. For more details contact the Trust at 157 Blythe Road, London, W14 OHL or tel: 020 7602 7404

See InterAction 33 feature 'Caring for Carers' for more information; photocopies available from our Wells office.

Tap Turners - Photography by Kate Phimister

Kingfisher Barn

A week of respite care at KFB

InterAction Issue 38 - September 2001 p42 - p43

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