Sleep??

​Sleep.

What is that again?
Full moon approaching.

Pain in legs.
Sleep deprived grumpy mummy.
My girl is crying in pain with her legs.

She has been every night for 5 days now.
I put it down to being back at school.
She tries to fit in and join in everything at school but she can’t.
She doesnt recognise when she is overdoing things.
She doesn’t feel the pain when her joints are crying out for her to rest.

At night she feels the effects of the day.
My usually high pain tolerant girl is awake thrashing about the bed, crying, with pain and restless legs.
This is the Ehlers Danlos Syndrome type 3.

We can give her painkillers….
….they don’t work.
I’d like to massage her sore muscles, but she won’t let me touch her.
I’d like to give her a warm, soothing bath, but she cannot tolerate being immersed in warm water.
I’d like to give her a hug and reassure her but she won’t allow it.
This is the Autism.

It is hard.
So hard.
When she is shouting and screaming in the early hours because she thinks I am doing nothing to help her.
When she is telling me I am the worst mum in the world because I won’t do anything to stop them hurting.
When she just doesn’t understand why they hurt and that I cannot take away the pain.
When she has slept for less than 2 hours.

Sometimes being a Mum is heartbreaking.

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