It's hard to plan ahead because you never know how you will be but at the same time, you have to plan ahead so that you can rest beforehand. Even then, resting before an activity doesn't guarantee you'll be well enough to do it. This often leads to suffers having to cancel plans last minute or stop what they are doing to rest, sit down or take time out.
As an ME sufferer I think something that really helps is having an understanding family and friends. If the people around you understand that you could suddenly feel very ill, it can help to make you feel more relaxed and comfortable. It's always good to have a plan B incase you are not well enough to do the original activity.
It is important to remember that if you are around an ME sufferer who has to sit down or stop an activity that it is not their fault and that they cannot predict or control this. It is important for family and friends to be able to accept changes in plans and be flexible.
I think I can speak for all sufferers when I say that the last thing we want is to have to change or plans because of how we are feeling.
It's scary to think that you could feel really ill when you are out or if you are alone and that you don't know how you are going to feel in a few minutes, hours, days, weeks etc.
One minute I can be fine (well not fine but okay) then the next I feel awful.
I'm not talking about payback because feeling bad after doing something is expected and means that you have had fun rather than feeling rubbish for no reason. Payback is expected but you can't see all bad spells coming which is why suffers can find it hard to hold down a job or have a regular college/school/uni attendance. Pacing obviously helps but it cannot guarantee than you won't feel ill for no reason.
How do you cope with the unpredictable side of M.E? Is there anything you like to have to hand for when a bad spell strikes?
