rare disease- a way forward?

My head has been full. Anyone who follows me on twitter will have been fed up with the rambling. I’ve been struggling with Consultation on the UK Plan for Rare Diseases. Sounds exciting, eh?

Well, it ought to be. Finally, the UK government are doing something about their commitment to develop a national strategy for rare diseases- hurrah! A huge opportunity to shape services and improve lives. So why does it feel like a whole lot of nothing? The document is vague, medically focused and only available to download. So much for reaching out to already isolated groups of people and asking for what they need.

I’ve spent days and days trying to grasp on to something in the document that made sense, and in the end decided to write about what would have made things easier for my mum, and tried to connect that to the paper. Days, I tell you. Brain fog is a pain, but others without the fog have had similar issues.

People who are caring for a loved one with a rare disease. People who may have to attend a dozen appointments a week. People who are struggling. People who have young children or elderly relatives to care for. People with their own health issues. People who don’t have the luxury of days to spend trying to make sense of it all. These are the people who need the chance to use their experience to influence policy for the future.

One would nearly think that the government don’t really want to consult with people living with rare disease. They couldn’t really be just going through the motions, could they? Time for us all to shout a bit louder and make sure the policy makers don’t get the chance to ignore what we have to say. We are stronger together.

dancing, differently

There’s always something going on here. Dance classes. A competition. Stretching. Learning new steps and routines. Making up steps. Asking me for my opinion…

This week, things were different. Even my untrained eye recognised that I wasn’t seeing Irish dancing or ballet. There was too much lepping about and arm waving. Both girls were doing the same thing, teaching each other. What was going on?

Then I found the instruction sheet. Steps and ‘encouraging’ words; welcome, throw, canoe, welcome, lunge, catch, throw. Definitely not Irish dancing.

The Olympics are London 2012 is getting everywhere.

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When I was writing, this came on the radio. Similarities?

overnight #1

The caravan site is about 10 mins drive from the shop.

It is isolated, and surprisingly empty.

This is good.

The big plates don’t fit in the cupboard.

Girls will fall out of the single beds.

The sleeping bags are great fun.

We must remember towels.

And pillows.

That smelly thing isn’t a candle- it’s for an oil burner.

The TV works perfectly well.

Everything works perfectly well.

Hangers would be useful.

It is possible to forget both the book and the Kindle.

One can be saved from the worthiness of the newspaper by remembering the iphone Kindle app, previously downloaded. Happily, with ‘books’ on.

Caravan Man doesn’t like to talk about anything as crude as money. It takes a while to talk round these necessities- the not saying and the saying of equal importance- even when handing him an envelope stuffed with cash.

It is possible for Spurs Fan to relax and just do nothing. For a limited time; early days yet.

I want to paint everything white.

We need new curtains.

Time on the beach is more important.

maybe I should be a fashion blogger…

… or, ‘pride and fall’

The sun came out and the temperature nudged up towards ‘average for the time of year’. You’d have thought a tropical heatwave had arrived. Suncream. Defuzzed legs. Toenails painted.

Time to break in the new summer dress. Skippity skip. How lovely am I going to be? Hurrah!

However, when I had tried on the dress I needed a girl to finish the zip. Due to sleeping late there were no handy dressing assistants this time. I got stuck. Neither in the dress properly, nor able to get out of it. I didn’t dare ask the postman for help.

Maybe if I left it a while it would magically unstick itself? The postman had brought my new chain, so I tried to distract myself by untangling the knot. I failed at both.

I phoned Arty Lady, who laughed a lot and wondered if I could wiggle the dress round and sort it out from there? Yes! Oh, no.

I drew on a face and wasted some more time, but I couldn’t really last in this state until the girls came home from school, could I? I wanted to go out, to engage with the world.

There was nothing for it, HerNextDoor would have to do it. Except she wasn’t in. Nor was C, or S. I was now parading up and down the street, with a cardigan on, hoping to find someone, anyone, to make me decent. I rang the doorbell of a woman I’ve never spoken to because she’s stuck at home with a newborn and would need cheering up. Even she was out.

Eventually it was time to face a house where I knew there would be a man, and hope he didn’t answer the door. Thankfully, his wife only laughed a little (to my face) as she rescued me. He was upstairs, presumably in stitches.

I really must try to get dressed before the lady’s maids go to school.

Of course, by the time all that was done I was too frazzled to go anywhere other then the garden. Basking was required, to restore my equilibrium. I can read worky papers in the sun. If only I could learn how to dress myself…

For the fashion people: dress from LadyV, but it was cheaper than that. Probably because of the dodgy zip.