Insomnia
Insomnia is a horrible symptom of M.E. that most sufferers, no matter what ability, experience at some point. With severely affected people this can be an ongoing problem.
There are two main approaches for dealing with long-term insomnia. One is to get someone to wake you up at the same time every day not allowing yourself to sleep during the day (this does not mean stop resting). This means you should be tired enough at a normal bedtime and that your sleep pattern stays the same as everyone else’s. Unfortunately this doesn’t always work.
The second approach is to allow your body to sleep as and when it needs to, thus taking the pressure off having to get to sleep. This may mean you will experience a shift in your sleep pattern. You may start getting to sleep at 1, 2 or 3 in the morning and waking up at lunchtime or early afternoon.
Alternatively you may find your sleep cycles – this means that each day you go to sleep an hour later and then wake up an hour later the next day. Therefore for some of the month you will sleep through the night; but for some of it you will sleep during the day and be awake at night.
This can be very hard on the sufferer and the family, but like many of the M.E. symptoms can’t be controlled. Even if you are woken up at a certain time your body may still refuse to go to sleep at a certain time.
Dealing with Insomnia
Everyone has been there – you’re lying in bed feeling tired and just about to drop off when suddenly your brain goes into “hyper mode” – suddenly you’re wide awake! You can feel time passing and as the hours tick by your body gets tenser and tenser. The thought keeps going through your head – I’m ill, I’m tired and I should be asleep, I’m probably making myself worse, I’m going to suffer for this. Your heart starts beating faster and faster and your brain won’t be quiet. What do you do?
The main thing is to try to stay relaxed, as hard as that may be. Like nausea or pain you cannot force your body to stop doing it. It will sleep when it’s ready, you can’t control it.
The one good thing about being bed bound is that you don’t have to get up in the morning. Therefore you can sleep in as long as you need to and may fall asleep during the day as well. Unless of course you are trying to follow the first approach going to sleep and waking up at a certain time each day. If you have had a really bad night you might like to leave a sign e.g. throw a cushion into your doorway, or write a message to ask not to be woken up. Give yourself permission not to go to sleep. Tell yourself that you are going to stay up all night and not sleep at all. Crazy as it may sound you find that the pressure has been taken off you. So use your relaxation techniques everything from the flower essences and roll-ons to the meditation breathing. Remember if you stay relaxed and lie with your eyes closed you are still resting.
If things are getting too much try and break the atmosphere – do something you enjoy. Forget that you are trying to go to sleep.
There are a few herbal tablets that people have tried to help with their sleep e.g. St John’s Wort, Serotonin 5HTP, Melatonin. Some severely affected people have found that they have helped them get enough hours sleep. The melatonin has been used to push back the time they are getting to sleep; but they sometimes find a point where they can’t push their sleep back any further.
Melatonin can’t be bought in this country; but you can have it shipped from the USA where you can buy it over the counter.
Please ask your doctor or pharmacist before trying any of these products, especially St John’s Wort because it can react with other drugs.
Above all remember you are not alone. While you are lying there trying to get to sleep, there are other severely affected people across the country going through it as well.
As your body gets better your sleep will improve and one day it will all seem like a bad dream!
There are two main approaches for dealing with long-term insomnia. One is to get someone to wake you up at the same time every day not allowing yourself to sleep during the day (this does not mean stop resting). This means you should be tired enough at a normal bedtime and that your sleep pattern stays the same as everyone else’s. Unfortunately this doesn’t always work.
The second approach is to allow your body to sleep as and when it needs to, thus taking the pressure off having to get to sleep. This may mean you will experience a shift in your sleep pattern. You may start getting to sleep at 1, 2 or 3 in the morning and waking up at lunchtime or early afternoon.
Alternatively you may find your sleep cycles – this means that each day you go to sleep an hour later and then wake up an hour later the next day. Therefore for some of the month you will sleep through the night; but for some of it you will sleep during the day and be awake at night.
This can be very hard on the sufferer and the family, but like many of the M.E. symptoms can’t be controlled. Even if you are woken up at a certain time your body may still refuse to go to sleep at a certain time.
Dealing with Insomnia
Everyone has been there – you’re lying in bed feeling tired and just about to drop off when suddenly your brain goes into “hyper mode” – suddenly you’re wide awake! You can feel time passing and as the hours tick by your body gets tenser and tenser. The thought keeps going through your head – I’m ill, I’m tired and I should be asleep, I’m probably making myself worse, I’m going to suffer for this. Your heart starts beating faster and faster and your brain won’t be quiet. What do you do?
The main thing is to try to stay relaxed, as hard as that may be. Like nausea or pain you cannot force your body to stop doing it. It will sleep when it’s ready, you can’t control it.
The one good thing about being bed bound is that you don’t have to get up in the morning. Therefore you can sleep in as long as you need to and may fall asleep during the day as well. Unless of course you are trying to follow the first approach going to sleep and waking up at a certain time each day. If you have had a really bad night you might like to leave a sign e.g. throw a cushion into your doorway, or write a message to ask not to be woken up. Give yourself permission not to go to sleep. Tell yourself that you are going to stay up all night and not sleep at all. Crazy as it may sound you find that the pressure has been taken off you. So use your relaxation techniques everything from the flower essences and roll-ons to the meditation breathing. Remember if you stay relaxed and lie with your eyes closed you are still resting.
If things are getting too much try and break the atmosphere – do something you enjoy. Forget that you are trying to go to sleep.
There are a few herbal tablets that people have tried to help with their sleep e.g. St John’s Wort, Serotonin 5HTP, Melatonin. Some severely affected people have found that they have helped them get enough hours sleep. The melatonin has been used to push back the time they are getting to sleep; but they sometimes find a point where they can’t push their sleep back any further.
Melatonin can’t be bought in this country; but you can have it shipped from the USA where you can buy it over the counter.
Please ask your doctor or pharmacist before trying any of these products, especially St John’s Wort because it can react with other drugs.
Above all remember you are not alone. While you are lying there trying to get to sleep, there are other severely affected people across the country going through it as well.
As your body gets better your sleep will improve and one day it will all seem like a bad dream!
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.