Note to Carers
As with everything there is no simple answer to this one. There will be days or even weeks when you just want to cry or scream or shout. The feelings can be so strong that you don’t know what to do, and you feel like you are being overwhelmed and are unable to cope. Don’t bottle up your emotions, talk to someone. This can be very hard to do, especially with the fear that getting upset will make you worse; but you’ll be amazed at how much better you feel after a good cry, even if you feel tired for the next couple of days, you will feel better for getting it out of your system.
There will be days that you feel like you want to give up, that you just can’t cope anymore. All you can see in the future is endless days of exhaustion; pain and frustration - don’t give up! Stop thinking about the future, just concentrate on getting through the day. If this seems too long then just think about the next minute. The day will pass without you realising. Sometimes it helps to think to yourself “Just get through today, let tomorrow take care of itself.”
The days will seem to drag by, which is why its important to try and do one thing you enjoy, no matter how small, so you feel you have achieved something. (See the page on Activities)
If you concentrate on taking each day as it comes you will suddenly realise one day that its been a few days since you had a bad day, then a full week, then a month and so on until the bad day only happens occasionally. Ironically they then feel even worse because you’ve been doing so well, but try to remind yourself how well you’ve been doing, although this can be very hard.
If you get very depressed about the situation then contact your GP about anti-depressants, which can be very helpful. Ignore the stigma that is attached to them. Those who scorn them have rarely been low enough to need them.
There are herbal alternatives e.g. St Johns Wort, talk to a health therapist for more advice and always check with your GP if you are taking any other medication.
Some people find that writing things down can help, or even just writing a word or two. If you can't write you could draw a picture or do a scribble in a colour which matched your mood, or you could dictate it onto a tape if your feelings are too personal or painful to talk to someone else about.
The most important thing to remember is that you will get through this. It will take time and you will have bad days, but don’t ever give up! People have been where you are now and they are completely recovered and you will too! There is so much waiting for you so just hold on.
Nobody would chose to be severely affected, but it does make you appreciate life and shows you what is important. You will feel like you are wasting your life, that time is slipping by you as the rest of the world gets to lead their life; but your time will come and you will make up for lost time. You will not waste a second of your future and you will be happy because you will know the price it has come at and you will not take it for granted the way most people do.
There will be days that you feel like you want to give up, that you just can’t cope anymore. All you can see in the future is endless days of exhaustion; pain and frustration - don’t give up! Stop thinking about the future, just concentrate on getting through the day. If this seems too long then just think about the next minute. The day will pass without you realising. Sometimes it helps to think to yourself “Just get through today, let tomorrow take care of itself.”
The days will seem to drag by, which is why its important to try and do one thing you enjoy, no matter how small, so you feel you have achieved something. (See the page on Activities)
If you concentrate on taking each day as it comes you will suddenly realise one day that its been a few days since you had a bad day, then a full week, then a month and so on until the bad day only happens occasionally. Ironically they then feel even worse because you’ve been doing so well, but try to remind yourself how well you’ve been doing, although this can be very hard.
If you get very depressed about the situation then contact your GP about anti-depressants, which can be very helpful. Ignore the stigma that is attached to them. Those who scorn them have rarely been low enough to need them.
There are herbal alternatives e.g. St Johns Wort, talk to a health therapist for more advice and always check with your GP if you are taking any other medication.
Some people find that writing things down can help, or even just writing a word or two. If you can't write you could draw a picture or do a scribble in a colour which matched your mood, or you could dictate it onto a tape if your feelings are too personal or painful to talk to someone else about.
The most important thing to remember is that you will get through this. It will take time and you will have bad days, but don’t ever give up! People have been where you are now and they are completely recovered and you will too! There is so much waiting for you so just hold on.
Nobody would chose to be severely affected, but it does make you appreciate life and shows you what is important. You will feel like you are wasting your life, that time is slipping by you as the rest of the world gets to lead their life; but your time will come and you will make up for lost time. You will not waste a second of your future and you will be happy because you will know the price it has come at and you will not take it for granted the way most people 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.