Severely Affected

Edited by ZoŽ Williams

Diaphragmatic (abdominal) breathing

By physiotherapist Kate Sweeney

Kate can be contacted c/o Box No 3605 First learn this in a lying, wellsupported position. Then progress to sitting, standing and walking (ME permitting).

Place one hand on your upper chest, the other on your abdomen, just above your waist.

Breathe in through your nose and note where there is movement.

Focus on the movement in your abdomen. Think of breathing into your lower hand, so that as your lungs fill, your abdomen will rise, and as you breathe out it will fall. Breathing in is a muscular activity and breathing out is just `letting go'. Breathing should be comfortable, rhythmical and relaxed.

Autogenic training

You tell yourself what you want, e.g. `my arms are heavy and warm' and you will produce the desired result. Wear loose comfortable clothing. Have gentle lighting and no external noise. Get as comfortable as possible, sitting or lying. Close your eyes; breathe evenly using your diaphragm.

Make up your own cues. Say cues with your out breath a few times:

1 My head is calm and cool. 2 My shoulders, arms, hands are heavy and warm. 3 My breathing is deep and even. 4 My abdomen is comfortable and warm. 5 My pelvis, legs and feet are heavy and warm. 6 My body feels long and broad. 7 I am feeling relaxed and refreshed.

All this is done with relaxed, gentle concentration. If thoughts come into your mind let them come and then let them go.

Do this for 3 minutes at least, 10 times a day. At the end of each session open your eyes and gently move your head, hands and feet.

Carers' corner

Does anyone have any tips for carers to offer? Perhaps you are willing to provide support to other carers. If so, please write to the Ed c/o the Wells office.

Pat Williams recommends a website for carers of people with ME. The two pages which might be useful are `Ten Tips for Family Caregivers' (http://wwcoco.com/cfs-care/tentips.html) and Frequently Asked Questions (http://wwcoco.com/cfs-care/faq.html)

InterAction ran an article on caring for carers, with details of support groups, in issue 34 (pp22-23).

 

 

Resting position No 3

From the CFS Team at Havering Hospital NHS Trust and BUPA Hartswood Hospital.

Long Sitting: This is the position that people sit in when sitting up in bed. Put as many pillows behind the head as you need to support the head so that the muscles of the neck and shoulder girdle can let go. To ' further support the shoulder girdle, lace one or two pillows across the front of the chest with the arms rested over the top of these pillows. One or two more pillows will be needed to support the length of the back. Beneath the knees, it is important to have the support of some pillows. If the knees are left in a straightened position in long sitting, it can stress the muscles at the back of the leg.

Relaxation tapes

Relaxation tapes are available to borrow from the AfME library or Simon McGrath recommends The Inner Bookshop for a wide mail order choice (tel. 01865 245301 to order a catalogue). Simon reviews a range of different relaxation and meditation tapes at the website http://members.tripod.co.uk/justrelax/relaxation/tapes.htm You could also phone your local library to see if they offer a mobile library service that includes audiotapes and talking books.

InterAction No. 36 March 2001 p32

Reader Giveaway

We have one pair of 'square eyes' glasses to give away, worth £45. These allow you to watch TV or read while lying flat on your back and without cricking your neck. For this reason they are ideal for anyone who has trouble sitting up. The specs work by reflecting images at a 90 degree angle with the aid of small mirrors. For your chance to win a pair, send a postcard marked 'Square Eyes Giveaway' to the AfVIE Wells office by April 26. Alternatively, you can order a pair by calling Thomas's on 0161 477 8388.

Hip to be Square

Audiotape review

Energise and Relax with Yoga by Angela Stevens

Reviewed by Rachel Dutton

This is a good gentle introduction to yoga, which is designed to be practised in bed or lying on the floor. Yoga is said to nourish the whole body: physical, mental, emotional and spiritual and can help symptoms of ME by targeting for example, the hypothalamus gland, the lack of blood to the head, and a build-up of lactic acid in the muscles.

Throughout the tape you are reminded to work to your own ability and according to how you feel. The tape incorporates deep relaxation, breathing exercises, visualisations and gentle movement. The movement section of the tape must be approached with caution. The movements described take each part of the body in turn tensing muscles and are quite strenuous to do consecutively, even with just one repetition. You may need to either stop the tape regularly to rest, or just do a few of the movements while the tape is playing and practise the other movements at intervals throughout the day.

Each movement is clearly explained with information about the benefits of each exercise. The relaxation and visualisation parts of the tapes are excellent. However, although I could do most of the movements on the tape (although not one after the other) I found it used up all my energy and so I struggled more than usual to do the day to day living stuff.

This tape, which is also in the AfME library, costs £7 inc p&p from Angela Stevens, Laminga, Southview Rd, Wadhurst, East Sussex TN5 6TL.

The Alexander technique may be less strenuous for people who are very severely affected - more details available by calling 020 7284 3338 or go to www.stat.org.uk

Under 25? ... AYME Buddy Scheme

The Association of Young People with ME offers a buddy scheme where healthier AYME members (buddies) are linked up with severely affected members to send them regular post without expecting replies.

If you are severely affected and 25 years or under and think you would benefit from the Buddy Scheme, join AYME (membership free) and then ask a parent/carer to write to the Buddy Scheme Coordinator on your behalf (contact details in CHEERS! magazine). If you are in a position to become a buddy and are 25 years or under then please join AYME and contact the Buddy Scheme Co- ordinator.

To join the Association of Young People with ME check out www.ayme.org.uk, E-mail info@ayme.org.uk, telephone 01908 373 300 or send an SAE to Box 605, Milton Keynes MK2 2XD.

25% M.E. Group

This organisation (for people with severe ME and their carers) includes smaller groups for art, meditation and prayer. There are a number of schemes covering various means of contacting others, for example round robin tapes. There is also a postal library of talking books. Please send SAE to The 25% ME Group, c/o Mr S Lawrence, 4 Douglas Court, Beach Road, Troon, Ayrshire KA10 6SQ or go to www.btinternet.com/~severeme.group

CHROME

CHROME (Case History Research on ME) is collecting annually and analysing data on the symptoms and treatment of people with severe ME (defined as those who cannot leave the house unaided).

So far we have data from 322 people some of whom have been participating for five years now. This is the only project we know of to be looking at the progress of the disease in people severely affected.

We now have a well qualified research team and another paper almost ready for publication. However, all members either have ME or are carers, so the analysis progress is sometimes slow. Any offers of help, whether with the research or other tasks, would be gratefully received.

For more information write to CHROME, 3 Britannia Rd, London SW6 2HJ, E-mail secretary@chromesw6.co.uk or visit http://ds.dial.pipex.com/comcare/chrome

InterAction No. 36 March 2001 p33

ACTION FOR M.E. 3rd Floor, Canningford House, 38 Victoria Street, BRISTOL, BS1 6BY
Website: www.AfME.org.uk