Everyone with M.E. has to find a way of managing that works for them. We asked people with M.E. what they have found useful.
Brenda told us:
“Individual differences make it hard to suggest a uniform approach to the best way to introduce someone to their new state of being. What was key for me in terms of starting to climb up the ladder a little bit from the pit was resting and pacing. I was fortunate enough to be in contact with a counsellor who knew someone with M.E and who was able to give me clear advice and guidance on the need to rest and pace.”
“Pacing activity works for me but you must work out a baseline – the activity level where symptoms are at a minimum – before starting to increase activity. Only increase in 10% amounts. When a therapist says ‘Do what you enjoy,’ only do if it doesn't increase symptoms.”
“If you’re having trouble finding your baseline or find you’re getting worse, you’re probably doing too much and need to cut down your baseline even more. Accepting you can only do a fraction of what you used to is hard and I wish I had come to terms with it sooner as my health would have improved faster. I found keeping an activity diary really helpful. Learning how much energy different activities take and what payback I’ll get from them is one of the best things I’ve done. By avoiding booming and busting it means I have been able to commit to long term things like doing a Degree with the Open University and I know when I arrange to do something like go out with friends that I’ll be well enough to do it when the time comes.
“Find some low-energy hobbies. I’ve found that crafts like card making, scrapbooking, knitting and jewellery making are fun hobbies that are easy to pick up and put down when you need to. I now have a huge collection of books, DVDs and audiobooks. We feed the birds so I can just watch them out the window.
“Having treats occasionally is important but try to find some low energy things you enjoy. Some people boom and bust because they want to do something fun. I enjoy having the occasional big treat but I’ve found it’s better to have a few low energy things I enjoy doing and can do every day as part of my routine. That way I enjoy myself, but I’m still pacing.”
Judy told us:
“Don’t fight your body or see it as to blame. Whatever the initial cause, your body’s defences have been overwhelmed. It’s important to see your body as your friend. It’s doing its best to recover and your job is to protect it from further harm and help it in this process. See your symptoms as messages that are trying to tell you what you need to hear and listen to them.”
“Don't be blasé – it's better to be over cautious than to test your limits. Find someone you trust to help and encourage you – they will see when you're doing too much or getting stressed or putting too much pressure on yourself."
"You will get better more quickly if you take things more slowly – don't try to rush or force recovery. Accept it will happen in its own time Accept you have to change your lifestyle and prioritise differently. Essentials are daily quiet time, healthy diet, lots of rest, putting yourself first, learning to say no or cancelling rather than pushing yourself, giving up exercise (gentle walking/stretching are OK) and avoiding stressful people/situations.”