Everyone's energy reserves – their batteries, if you like – are different. Having M.E. means that yours might vary from day to day, and even hour to hour. The range of symptoms you experience might also vary - that's why M.E. is known as a fluctuating condition.
The following is a list of symptoms you might experience - they sound scary but please remember that you may not have all of them, and some may come and go.
If you are experiencing these symptoms, please remember that you and your family are not alone, and Action for M.E. is here to help with information and support. You can find out how to contact our information and support officers here.
The most important thing is to learn what your limitations are, so that you stop and recharge your batteries before you use up all your energy. This can be particularly challenging when you are first diagnosed.
The functional ability scale is an important tool to help you work out where you are with your M.E.
You can use it to help you describe and measure how much you can do. If you are someone whose symptoms vary a lot, you may want to make a note of where you are on a good day, as well as where you are on a bad day.
The scale will help you to see how you are doing, and to better understand yourself. Remember, though, if you push yourself too hard, it can take many days to recover afterwards.
There are times when you will stay at the same level, and times when you may go up and down on the scale – sometimes slowly, and sometimes in a jump. But over time, with the right sort of careful support and management, you will hopefully be able to see what improvements you've made.
It's important not to be too disappointed if you see a drop, M.E. is a fluctuating condition that varies over time.
Don't forget that this is a tool – not an exact guide.
If you are at 50%, for example, this does not mean you can only walk half the distance of a healthy person.
You may be in a different place physically to where you are mentally on the scale: many people fall between two categories.
Part-time means a few hours – only you will know how much is right for you.
There is no predictable pattern to M.E. - ups and downs will happen, even over short periods of time.
One young person with M.E. told us:
"I tried to push myself and do a lot more than I was really capable of. It was a natural reaction for me, but now I realise that it wasn't wise. If you do that, you end up feeling worse than when you started. Then I learned to manage my activity and tried to avoid the urge to complete a task in one sitting. I alternated small mental tasks with small physical ones because I soon learned that it was as important to rest my brain as it was my body."
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