asparagusmama (asparagusmama) wrote,

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Cowley Road Carnival and ME, or why David Cameron is so wrong!

A week ago my daughter and I went to the lovely, beautiful, fun packed amazing Cowley Road Carnival in Oxford, not something you see on Morse or Lewis, but hey, we have a mixed, multicultural working class community and a big car factory too, we're not all white posh scholars!

So, the procession was the best for years, really in keeping with the Caribbean feel, but with lovely Latin American, African, Indian sub-continent and English pagan imaginery mixed into the costumes and themes. Who says multiculturalism is a failed expereiment has not lived in the real world, in his sheltered white upper upper ponsy middle class and top drawer eton world. We mix. We respect. We feed on each others cultures to come up with a uniquely British Carnival. Like Notting Hill. Only smaller.

The procession was amazing, it was lovely to see all the local schools participating, and the death theme in the middle was effective and scared my daughter and the kids around us. It was a shame they didn't process down the Cowley Road and only in south Parks, but you can't have everything.

We picnicked on gluten free sandwiches and explored the market place and the charity stalls and listened to a Steel Band from my old home town on the main stage before we decamped to the dance stage for the rest on the day. Hemmed in and my daughter sitting on my wheelchair while I sat on the grass I had to a) walk to the toilets and b) walk to the food stalls. Of course, to an outsider I was walking fine...

However, I only contemplted such a busy day out because my Mum was coming to stay the night to get my daughter to her first of two taster days at the secondary school she'll be going to in September

And, and this is a big and...

Despite being able to go straght to bed and have my mother look after me and my daughter that night and morning, and having two days of five hours to myself to rest by Wednesday the knock on effects of the flu like symptoms, the effort to move being like swimming in treacle, the burning nerve and muscle pain in  my long muscles, the shaking of my muscles and even the vibrating of my heart with palpatations washed over me and by Thursday night the pain my calf muscles were so extreme that I was involuntary screaming in the middle of the night after I flexed the muscles in my sleep. By Friday I was completely bedbound, with a daughter who needs caring for. I had nothing to eat until my friend came over in the afternoon but I lay in my own muck as I couldn't get to the loo. Meanwhile my daughter watched endless Barbie DVDs and ate sweets and covered the entire house in baby dolls and bits of paper, and the house is still like that, as Saturday may have given me the energy to wash and feed us but tidy up and clean? No way.

But is you saw me walk from the dance stage to the toilet and back you would think, why has she got a wheelchair, why does she claim she's too ill to work, because you do not walk in my shoes, which leads to pain and being bedbound and housebound for days afterwards...

The choice not to pace has consquences...

But oh yes. Cowley Road Carnival was one of them. It was brill :)

BTW, The two taster days went well, and now my daughter, seeing the one to one TA support and the level of understanding of her needs caused by her high functioning autism is so less anxious and so much more positive... :D
Tags: carnival, cowley road, lewis, me/cfs, morse, multiculturalism, oxford
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