Tag Archives: rare disease

no reason in particular

There’s nothing special about today.

It’s a wet Friday.

I have a list of things to be doing.

Busy things.

Oh, very important things.

Boring things.

All the things.

Then I read Isobel’s beautiful post. As I reread it, I heard the song playing on the radio.

I had a little wallow, a wee drip and a sniffle. It happens when I least expect it. When I have other plans.

I thought about Herself, and the woman I spoke to last night whose husband was recently diagnosed with PSP. I thought about those more recently bereaved than I, and those dealing with the ongoing chaos and firefighting that accompanies a parent’s decline.

In my middle age, I want to still be able to do something with my late parents. I’d love to hold them, tease them, walk on the beach with them.

family, 1991

Instead, I miss them. I blog about them. I volunteer because of our experiences.

I’m a 47 year old woman, still holding hands with the grown ups.

the grand day out

We were early. We had jobs to do.

rdwb venue

Luckily, those included drinking coffee and consuming yummy pastries. Yes, there was influencing, relationship building, and all manner of worthy stuff; that is both fuelled and eased by coffee and pastry.

NI Minister of Health, Edwin Poots
NI Minister of Health, Edwin Poots

The Ministers (Northern Ireland and the Republic of Ireland) spoke positively.

Ditzy D and Treasurer, organising
Ditzy D and Treasurer, organising

The session chairs kept to time.

Auntie Sadie, schmoosing
Auntie Sadie, schmoosing

More work will happen as a result of the day.

Chairperson, making  'An Announcement'
Chairperson, making ‘An Announcement’
that one with the glasses may be pretending to listen...
that blonde one with the glasses may be pretending to listen…

A good result in anyone’s book.

Planning for the 2014 event is already underway.

all photographs courtesy of ipposi

turn up the volume!

A marble rotunda, some dodgy mikes, and, at about 24.30 mins through the ‘discussion session’, me…

Click for video

(You can see the rest of the presentations as well, if you’re really keen)

Oddly, my children are hugely underwhelmed by my “Oh, oh, oh, come and see me. Talking. I’m on the internet.” Their reaction has been a polite version of “and what?”. Pah! Pesky kids and their whole wide world views…

the day before

We didn’t even make it to the hotel without some minor crises: Ditzy D spilled coffee all over herself before we got on the train, Treasurer nearly lost a leg when the taxi pulled off as she was getting in, and Chairperson was so heavily laden with posters, leaflets and tshirts that we feared she may drop some of the sparkly stuff.

Probably because Chairperson and I had been supremely annoying in the build up to the conference, our offers of help for the afternoon set up were politely declined. This provided an excellent opportunity for window shopping or a pre party bath and snooze. (I’d hoped for the former, but enjoyed the latter.)

We had our charity first birthday party- cake, sparkles and giggling- a happy half hour of silliness before we went downstairs for grown up mingling.




Downstairs, it felt a bit like being at a family wedding- I knew some people but wanted to get to know the others; we have the same issues and concerns and will maybe know each other for years after this.

I met Jamie, featured in this video, who lives with Ehlers- Danlos Syndrome. The film is informative, but I learned much more about him, his world, and the impact of his condition, as we blathered in the bar for a bit.


Doesn’t the valuable stuff often happen round the edges? Away from the pomp and formality, where we’re relaxed and informal.

Luckily, unlike some weddings, nobody lost the run of themselves and all went to bed at a reasonable hour.

We volunteers are professional after all.