Association of Young People with ME

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What is ME like?

Young members of AYME explain what it's like to have M.E

The main symptom of M.E is the utter exhaustion, often to the point of collapse.
	I can't walk straight and my balance is dreadful.
It's like a giant hoover has come down out of the sky and sucked out all my energy.		My energy is used up so quickly, even on simple tasks like sitting up, or getting dressed.
	On bad days it can be hard work just lifting a spoon to your mouth.
Words come out all wrong and you forget what you're saying in the middle of a sentence.		I can't concentrate on any kind of reading, writing, or watching television for more than ten minutes.
	My legs ache continuously; the muscles twitch and jump. I start off walking quite well but soon my legs grow heavier until they can't straighten under my weight.
All my senses are hypersensitive. And noise is painful and bright lights hurt my eyes.		I sleep all day and am awake all night. I try to sleep, but the inside of my head just goes round and round.
	Even on the hottest day I feel cold, especially my hands and feet. They tingle and sometimes I can't feel my fingers.

What do children and young people with M.E have to do to manage their illness?
The patient has to find his or her limitations. They try a very small activity for 10 or 15 minutes, then rest. In severe cases of M.E, 'activity' can mean simply sitting up in bed or having a short conversation.
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 brave. If you do that, you end up feeling worse than when you started. I then learned to pace myself 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.
They have to balance out activity and rest.

Article last edited on Thursday 13th August 2009 Printable Version

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What is ME like?

The main symptom of M.E is the utter exhaustion, often to the point of collapse.

What do children and young people with M.E have to do to manage their illness?

They have to balance out activity and rest.