Pacing & Switching
A generally approved approach to M.E. is pacing and switching. This means you alternate between periods of rest and activity. There are many misconceptions about resting. Resting is not listening to music/story tapes or watching TV even if you are lying down. Resting is a period of time when you are relaxed with your eyes closed, in a comfortable position. You must reduce all stimulation that your senses are receiving, to allow your body to rest and create more energy. This is not easy though, as the boredom can become unbearable and without something to focus on all your symptoms will seem to get worse.
Meditation is a good way to pass the time you can visualise yourself surrounded by different colours e.g. the colours of the rainbow. Alternatively you can picture yourself in a meadow. Visualise walking around the meadow looking at different flowers. You can substitute the meadow for a beach or a mountain or any other place you feel relaxed in. There are books available with meditations like these, which you can get a carer to read to you or alternatively read onto a tape so you can listen to them when you feel up to it. These can be better than bought meditation tapes, as most tapes contain background music and this can provide too much stimulation for severely affected people.
There are various relaxation tapes/CDs reviewed at
http://members.lycos.co.uk/justrelax/relaxation/tapes.htm
These types of meditation take a certain amount of concentration. You may find it easier to just concentrate on your breathing, become aware of your inhalation and exhalation, possibly counting how long each take. Try to breathe slowly and rhythmically but don’t make yourself uncomfortable. There are yoga exercises specifically for breathing - these can be found in books and on tapes. Which involve breathing gently in and out through your nose. There is one specifically aimed for people in bed and another for people with M.E. by: -
Angela Stevens
“Laminga”
South View Road
Wadhurst
Sussex
TW5 6TL
01892 782865
You should aim to rest for at least half an hour at a time, as this allows enough time for you to settle and get into a good state of relaxation. Some people find this very difficult though, so it’s worth aiming for 15 minutes and then gradually increasing the length of your rest by just a minute each time. In no time at all you’ll be up to half an hour or possibly longer if you feel it’s what you need.
Boredom and frustration while resting undoes all the good effect. If your body is tense then it’s using energy and therefore making you more tired. The best thing to do is to accept that you must rest, as hard as this may seem. Look on it as a way to make some energy for you to be able to do something you enjoy.
You can set yourself a goal, e.g. if you do a certain number of rests you will buy yourself a treat, possibly something from a mail order catalogue, or treat yourself to your favourite food. This will make the resting seem more worthwhile.
Activities
Being severely affected can be very monotonous, and the lower down the scale you are the harder it is to change this. There may be weeks or months when you are too ill to do anything at all. This can be hard to deal with; but often you are feeling so ill that you aren’t actually interested in doing anything.
When you do start to feel better and want something to do, it is important to find something that you get pleasure out of. Even if it is just doing one sticker on a card a day - the pleasure and sense of achievement will out weigh the tiredness and help reduce frustration. It is important that you know your limits. If you get tired after doing one sticker don’t force yourself to do two until your body is ready to. If you do an activity for a certain period of time and find that the next couple of days you are too ill to do anything then you have done too much. Next time reduce the amount you do. It is very difficult accepting how little you are now able to do; but pushing yourself will only make you worse.
This principal applies to everything from making cards, listening to music or watching TV. Don’t beat yourself up if you do push yourself too far, everybody does it. Learn from your mistakes and make sure that you don’t do it again. You will know when you are well enough to do a bit more. Something inside your head will tell you when you can do another sticker or read an extra sentence in a book. You may feel tired after doing that little bit extra but you should not feel exhausted or terribly ill. If you do then perhaps you are still pushing it too far.
Different parts of the brain control different activities and so it is important to alternate the parts of the brain that you are using by alternating the activities. For example if you make a card, after you rest do something different like listening to music or a story tape. If you have watched some TV after your rest don’t try and use the computer. You may find it useful to plan a day of activity.
For severely affected people of a low ability percentage this may only contain one or two activity periods of just a few seconds during the better part of their day or night. With time you will slowly build up to do things for longer periods of time.
Some people find it useful to keep a diary of their activities and symptoms. This allows them to see whether an increase in symptoms directly relates to an increase in activity, showing them that they need to slow down and rest more. This concept is explained in the book “Better Recovery From Viral Infection” by Darrel Ho Yen.
Essential Items
No matter what activity you do - a lap tray is great for working on or for leaving on the bed, with easy to reach items. These are trays with a beanbag bottom - they mould to your legs or the bed to provide a stable surface. They are available from Lakeland Ltd; but you can get cheaper ones from many different stores e.g. QD.
Have a cupboard or trolley by the bed with anything you may need on/in it. This allows you to be more self-sufficient. There are some good plastic drawers on wheels available from Big W and Homebase. They can be easily moved and provide extra tabletop space by the bed.
See our Activites Section for some ideas of things to do.