Pacing & Switching
A generally approved approach to M.E. is pacing and switching. This means you alternate between periods of rest and activity. Check out the page on Resting.
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.
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; 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 Activities Section for some ideas of things to do.
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.
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; 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 Activities Section for some ideas of things to do.
Claire Wade. Studio 17659, PO Box 6945, London, W1A 6US
This site is written by someone who is severely affect with ME and is compiled as a result of personal experience and research of other people with ME and their families. It is intended for information and guidance only. It is not intended to replace medical advice. Readers are strongly urged to consult a professional medical practitioner for a proper diagnosis or assessment before trying any of the treatments or medications outlined. As with all medications, always consult your GP, specialist or pharmacist and tell them about other medications or herbal preparations you are already taking; always read the label and patient information leaflet.
The contributors to this website are not medically trained but all live with or have significant experience of ME. The tips may not be suitable for everyone. No responsibility for loss occasioned to any person acting or refraining from action as a result of any statement in this work can be accepted by the author.
No part of this work may be reproduced or transmitted in any form or by any means (photocopying, electronic, recording or otherwise), except for personal or non-commercial use without the permission of the author.
Claire Wade has asserted her right under the Copyright, Designs and Patents Act of 1988 to be identified as the author of this work.
The contributors to this website are not medically trained but all live with or have significant experience of ME. The tips may not be suitable for everyone. No responsibility for loss occasioned to any person acting or refraining from action as a result of any statement in this work can be accepted by the author.
No part of this work may be reproduced or transmitted in any form or by any means (photocopying, electronic, recording or otherwise), except for personal or non-commercial use without the permission of the author.
Claire Wade has asserted her right under the Copyright, Designs and Patents Act of 1988 to be identified as the author of this work.