Helen has Cerebral Palsy and is a lifelong campaigner

Helen has Cerebral Palsy and is a lifelong campaigner – (when able). Since 2010 she has watched the situation for people with a disability/illness deteriorate…

“It’s 3am.

I’m lying awake listening to the wind. A dustbin (or something), just fell over. I’m glad hubby secured the garage door. The rain has warped the wood.

It seems I do all my ‘best’ worrying at night time, and even though I try very hard to sleep, insomnia is a lifelong thing, but it’s worse now.

I used to like the nights. I loved the calmness and the feeling that the world is all mine. It used to be my most creative time, so I was never worried about not sleeping.

Now though, I’m either lying awake worrying about the future, -being without hubby, the Cerebral Palsy getting worse, or the WCA.

If I do sleep, I often have nightmares about the WCA itself -not even so much the outcome.

A recurring one is I’m sitting on a chair in the assessment room. It’s very dark and there is a panel of people watching me, judging me. 

They ask leading questions, that seem innocent but they’re not. They know it and so do I.

They shine coloured lights in my eyes, and keep asking me more and more questions -like a quick-fire quiz show – and I can’t answer. It’s too fast and I can’t think!

Most of the nightmares are similar to this. In some they come to my home, and they are judging the things I have. They are invading my space, where I once felt safe.  There is suspicion – and an uneasy atmosphere which I can feel, even in sleep.
In the dream (whichever version it is), I feel panic. I want to  try and get away from the questions, judgement, – (and feeling like I’m not worth it), but in the darkness I can’t find a door, – and I’m trapped!
They get closer and closer and questions get more and more personal, along with ‘why should WE pay for YOU’?!  You’re a drain on society’! It goes on…
I usually wake up shaky and sweating! Sometimes I’ve cried out. My muscles tense and spasm which increases my pain. I either can’t get back to sleep, or I don’t want to, in case I have another one. 
No one should be going through this on their own home – as a result of government policy.
Helen Sims

You can read the rest on Helen’s blog and while you are there, have a look around, there are lots of blog posts and poems on how it feels to be a person with a disability in the UK today.

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