Tag Archives: rare diseases

why we do what we do

on diagnosis

“When newly diagnosed the impact on the person/ family is like a bomb going off- everyone is stunned, the air is cloudy and you can’t see the way forward. You feel stuck in time, stranded, isolated, victimised, life as you know it will never be the same. The rest of the world carries on around you, and you have to find a new way to slot back into it. This is made even more difficult because  nobody explains to you how to do it, when to do it, what to do if you need help, where to go for help, how to get there, who to ask when you get there.

This is even more of a problem when the condition is rare, because nobody knows about it. It doesn’t fall under any umbrella so there is no system, set of guidelines, leaflet, specialist in place that can guide you.

It is a very lonely, bleak, soul destroying place to be.”

by Eileen,  who is living with a rare disease.

From NI Rare Disease Partnership

no escape

The McSpec house is not a football free zone. Spurs Fan lives here. As does Girl1. It’s hard to know which is most concerned with the Euro 2012 championships. All of the football, all of the time. Girl2 and I are less concerned, but keep tabs on what’s happening.

I’m kindly sharing the fun bit…

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Football and rare diseases? Welcome my world this week.

doing nothing?

We’re having a weekend doing nothing. No long drives to the caravan. No visitors. Just quiet, ourselves.

Well, apart from the sponsored dance the girls did all yesterday morning.

And Spurs fan writing reports.

I had a walk, followed by an afternoon nap.

A night out for one, with football types.

A night in for the other, with wine and a book.

Home and away Gaelic football matches.

Laundry. The sun is out, so it might even get dry.

Preparing for the week ahead- conference Monday, fundraising with the torch on Tuesday, conference Thursday (whose life is this anyway?)

Oh, need to think of something to say seven times- to all the year groups in the primary school- to children about rare diseases for Tuesday.

Hmm.

Really, what fool thought that would be a good idea?

Sometimes my mind runs away with itself, and leaves the rest of me struggling.

Can I go back to doing nothing?

where do you get your inspiration?

Spurs Fan spent part of Tuesday on a mini bus with other torchbearers, and was gobsmacked by their stories. The woman who was paralysed by a car accident, and went on to become a kick-boxing champion. The Olympic swimmer. The man who cycled miles there and back to run marathons, and who missed out on the 1956 Olympics on a technicality. The young carers who look after their mum. The torchbearers are the stars of the relay- forget the celebs or local Z list media types who are there to make sure there is coverage of the event. If you live in GB and the torch goes round your way, consider those thousands of regular folk who, in their own ways, are inspirational.

The world is full of ordinary people dealing with extraordinary circumstances. We all know some.

Earlier this year, three local families agreed to take part in short films about living with rare disease. These are their, gobsmacking, stories.

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