Desert Island Tips

Edited by ZoŽ Williams If severe M.E. has left you feeling stranded, check out Maureen Dinsdale's strategies for making life a little easier

Rethink your wardrobe

If it's financially feasible, buy more of everything: pyjamas, dressing gowns, sheets and towels, because you might not be up to getting them washed regularly

I've had to rethink my wardrobe, so I don't have to worry about buttons - you don't want clothes that are difficult to get in and out of. I also avoid anything that needs ironing

When I was at my worst, I couldn't get changed because I had no help. I had some kaftans made, so I looked dressed for the day, and it's good for morale to feel like you're not in bed clothes all the time

Get food delivered

If you explain to shopkeepers that you are disabled, you might find some will deliver to you, even if they don't normally. When ordering food over the phone, it's not always necessary to struggle with a catalogue. I've found after explaining my disability that both Asda and Tesco were very willing to help

Order large quantities of food for the freezer [e.g. from Iceland] and get help putting it away. Keep copies of your order so you can submit the same one again. Canned food is good to keep as reserve

Using paper plates and plastic knives and forks means you don't have to wash up Information on hot meal delivery services can be found in InterAction 35, p21 - Ed.

Think energy saving

Washing hair: I do this lying down in the bath and afterwards, put a towel on my pillow and just let it dry. Otherwise it's a good idea to get a hairdryer fixed on a stand, which you can then sit under

Rest for me must be complete: lying in a room as dark and sound free as I can get it. Wear earplugs if necessary (B&Q make hypoallergenic ones). It helps to have a solid block of rest without answering the phone/door at these times.

BT has a free answerphone service - ring 1571 for details

Think ahead

Keep a handout noting your medical history, any known allergies and any medication you are on, because you never know what emergency might crop up

I have severe allergies and send a copy of my doctor's letter stating this (and listing problem substances) to people who are visiting my house, so they don't come wearing perfumes or strong deodorants

Think: communication

It can be frustrating to have contact with friends who can do things that you can't; so I find it helpful to be in touch with people in a similar situation, with the same sort of limitations

With a Dictaphone you can pace the amount you talk. Try to get friends used to accepting tapes but don't try and use a tape recorder during a bad spell. If your mind starts buzzing in the middle of the night, dictating your thoughts and things you need to remember on to a Dictaphone kept by the bed can help you unwind and get back to sleep

Maureen on a rare trip out

Argos stores are one good source of cheap tapes and dictaphones; call Argos Direct on 0870 600 2020

When looking for a typist to help with correspondence, make sure the person is reliable. Ask them what their typing speed is, how much they charge per hour and get this in writing. Also check turnaround times and how the work will be conveyed to you. I have two typists and have found it best to alternate the work between them. See if your typist or volunteer will also read your mail for you [perhaps onto cassette - Zoe].

And finally... Always have a project or something to look forward to every week - it's psychologically uplifting and need only be a simple thing.

25% group has two workers

Congratulations to the support group for sufferers of severe M.E. who've recently appointed two new members of staff with Lottery funding, including former sufferer Sheila Kennedy as Development Officer.

The future plans of the group are to raise awareness of the condition and increase its membership in Scotland. Co-ordinator Simon Lawrence writes: 'We seek to support people with severe M.E., their family, friends and carers. We might not be able to offer a cure, but we certainly do seek to give meaningful support and break the isolation whenever we can.'

For further information, please send an SAE to: 25% M.E. Group, 4 Douglas Court, Beach Road, Troon, Ayrshire KA10 6SQ.

AfME is committed to representing people with M.E. at all ranges of severity from moderately affected or recovering through to house or bedbound. If you have any ideas for this column, please contact Zoe Williams c/o our Wells office.

Fully Supported Positions

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

No. 4 - Chair sitting: Sit in a high back chair with arms. Ensure that the head is fully supported using pillows or cushions if necessary. Some people find a small roll in the lower back supportive, which can be made by folding an 8" cushion in half. To support the shoulder girdle, place one or two pillows across the front of the chest with the arms resting over the top of them. The forearms may be rested on the arms of the chair or lightly placed on the lap. Ensure that your feet are comfortably rested.

InterAction Issue 40 - April 2002 p18 - p19

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