M.E. is a horrible illness – hard to cope with at the best of times, but when you are severely affected it’s a terrifying time. So much is happening to your body that you don’t understand and there are only a very few people who really understand what it is like. Doctors, friends and family have enough of a problem with less severe M.E. – they can’t even begin to understand what it is like to be severely affected.
Right now you have probably got hundreds of questions, everything from how to deal with the physical symptoms, to how to cope with the emotional ones, that’s why I have put together this pack. It contains hints and tips that other people with severe M.E. have found really useful. Not everything works for everybody; but the ideas included may help you to find solutions to your own problems.
Unfortunately there are problems we can’t solve, for example coping with the emotions and frustrations – all we can do is let you know you are not alone, that other people have been at this stage and come through it, and you will too!
There are times when it feels never ending, and that this is how you will be for the rest of your life; but with management of the illness and careful pacing, you will get better.
Everybody has bad days or even bad weeks, which seem to last for ever, but with time, the good days will start to take over – you’ll start to cope better and things won’t seem so bad. You will still have bad days – when you hate the illness, fate and the world. This is only natural; but one day you will be free and this horrible illness will seem like a bad dream.
I’d like to thank everyone for taking their time and precious energy to help me gather as much information as possible. I am very grateful to them and their carers and hope you will be too. They are all severely affected and they have been through what you are going through now and are all at different stages in their illness.
M.E. is different for every person – no two people have exactly the same symptoms; but by sharing our experiences we can try to overcome as many problems as possible.
If you find out anything else that helps, please send your tips in, so I can include them to help other people. The only way to get through this illness is to talk to people who have been there, and to help those who come after you. Together we will get through this dreadful experience and come through it as better and stronger people.
Hopefully one day scientific research will mean that no-one else has to go through it.
Take care and remember you are not alone. Being severely affected automatically makes you part of a club of very special people, who are there to support each other in any way they can. Our love and thoughts go out to you.