on being away

Something odd just happened. I haven’t posted in ages. That’s the longest gap ever, and for no particular reason. My head has been too full or too empty. There have been half drafted posts that didn’t make it to a scrap of paper, never mind a screen.

The weekend was glorious over most of the British Isles, apart from that wee bit of cloud and rain in the north west of Ireland. Guess where we were? While many of you discared cardigans and painted toe nails, we put on the thermals, pulled up the hoods, and battled through the wind.

For the first time ever, I’d brought ‘work’ with me. I had a talk to prepare- a combination of two I’ve done before, with an intersecting middle bit. That middle five minutes took hours and hours. There was reading and thinking and then cobbling together. Finding a path that made it all seamless, and stopped the audience from dropping off. An audience of policy wonks, young enthusiastic doctors, quality and audit gurus and some elder statesmen of local medicine.

Of course, I wasn’t going to spend all weekend on that. I had a book to read. Two actually. One that was devoured while my eyes drooped, and one that Debra has me coming back to. Two new to me writers that will keep me occupied for some time.

Of course, that talk prep didn’t go away, and I went into full anxiety mode when we came home.  Typing and timing. Will I talk too quickly? Stand up and see if that makes me slow down. Oh! Slides! I’ll need slides… Do we even have powerpoint?

I ended up talking from the podium with 2 screens behind me- my mother looking over my shoulder as I talked about her illness, our learning, and why I keep blathering on.

It’s over. The sun is out. I woke up at lunch time.

There’s another talk to do, funding applications to finish, a ballet exam to shop for, summer tests to revise for, toe nails to paint and kite flying skills to master.

And soon we’ll be back to the windswept west, where the dry is an added bonus, and the sun a welcome surprise.

introductions

#HAWMC day2

Introduce your condition(s) to other Health Activists. What are 5 things you want them to know about your condition/your activism?

• My mother got me interested in rare disease. Not on purpose. She had other things she wanted to be doing, but instead we all learned something about Progressive Supranuclear Palsy. The word ‘progressive’ gives a clue as to how much fun that was. I first wrote about herself in April 2011. She died 3 months later.

• PSP affects mulitple body systems and can be hard to describe without the listener drifting off (eyes, movement, speech, swallow, blah, blah, snore…) This video gives some idea of its impact.

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• There are over 6,000 rare diseases, affecting 1 in 17 of the population. In Northern Ireland, that approximates to 100,000 people- roughly the size of a city such as Derry/ Londonderry.Collectively, rare diseases are common. Unfortunately, that’s not how it feels when a loved one is mysteriously ill and no one seems to know what it is; or when they are eventually diagnosed with a disease that nobody has ever heard of.  As Eileen, who is living with a rare disease, says: “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.” 

• Although collectively rare diseases are not rare, people living with rare disease are particularly disadvantaged within the health and social care systems because of the lack of information, training or joined up services. Children born with some genetic conditions may not live to see their first birthday, others struggle to gain a name (and correct treatment) for their condition and those that are, happily, living longer than in previous years do not have access appropriate adult services. In Northern Ireland, both children and adults are living with rare disease. Many of those people do not know anyone else with the condition; nor do their neighbours, their GPs, nor their range of Allied Health Professionals. Those people are isolated and anxious, they may be receiving inappropriate treatment, and they have very limited support.  More than ¼ of individuals wait between 1- 5 years for a diagnosis, with many people receiving multiple incorrect diagnoses, and some patients waiting more than 10 years for an accurate diagnosis. The lack of awareness of rare diseases leads to some individuals receiving inappropriate medical treatment and poor social support; this may severely impact people’s quality and length of life.

• I can campaign on rare disease issues because I had to give up work due to my own chronic ill health. I have issues with fatigue, cognitive disfunction and pain. I’m unreliable, unpredictable and prone to mood swings. I volunteer my time and energy to raising awareness of rare disease issues because I can do a fair bit of that from home, in my pyjamas. Nobody need know that I am the great unwashed, in a scruffy hoody and slipper socks.

• Major life changes, loss of health (and job, plans for the future, confidence, salary etc), bereavement; it’s hardly surprising my mental health has been affected. Marian’s writing on mental health and cake is wonderful. I find there’s no rhyme nor reason to depression- there’s no easy algorithm or magic wand. I resisted medication for years and have now embraced it with great enthusiasm; it makes an incredible difference to my world and enables me to function. I muddle through.

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I’m sure you were so enthralled by the writing you didn’t notice that was 6 points…. great points, all

oldies- singalong time

a song on the radio transported me back in time this morning.

sing with a smile on your face

sing with warmth and enthusiasm.

sing for my oldies

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next big thing

A very long time ago, Helen from at least I have a brain tagged me to participate in a meme. I don’t always do these, but this one caught my imagination. Of course, it’s meant to be for writers and I don’t yet see myself as a writer. Isobel tells me I am, and I’ve started to consider maybe doing a creative writing course/ workshop/ something, so it’s a work in progress.

Maybe this is a first step…

What is my next big thing?

My blogging is blurty. Whatever’s in my head comes out. I do edit, for typos and rephrasing, but mostly the post is published pretty much as it first appeared on screen. That gives the honesty, emotion and enthusiasm that you sometimes see, but it’s rough. I’d like to learn more about the skill of writing, even if my focus is still on me and my world.

Eventually, I’d like to use writing some way. Pseu, recently retired from this bloggy parish, told me about therapeutic writing with palliative care. Helping people tell their stories, to ‘put the drawer in order’ would be a remarkable thing.

What is the working title for your book?

Until I Do Something Else

Where did the idea come from for your book/ blog?

I’m a reader. I started to read blogs and realised the power of connection, of sharing. The blog is personal, because there is enormous value in clearing my head.

What genre does your book/ blog fall under?

Despite the references to loss and rebuilding, this is not self help/ misery lit or even middle aged woman finding value in challenge… If anything, I’m aiming for real life, but emphasising the ridiculous.

A mash up of Christopher Brookmyre, Marian Keyes and Iona Heath, perhaps.

Which actors would you choose for a movie rendition of your book/ blog?

Spurs Fan will be played by Liam Neeson. You needed to ask?

Jane Fonda- Herself

Ian McElhinney- Handsome Husband

Any of the girls from Matilda

Patrick Dempsey may seem an unlikely choice to play the Brother (the hair issue), but he’s got a similar dancey eye vibe.

President Bartlet (I’m sure he’s real) will make guest appearances as the old man.

Eddie can play dumb and be Jake.

Grandad will be John Thaw and Nana will be Michelle Dotrice. Arty Lady will be played to great effect by Gemma Arterton- if she can cope with Bond, she can cope with the McSpecs.

Pardon? Oh yes, well, I’m not actually going to let anyone else snuggle up to Liam am I? I’m being me.

What is the one sentence synopsis of your book/ blog?

Life: a new handbag always helps.

How long did it take you to write the first draft?

I’m still working on it.

What other books would you compare yours to?

Clare Balding’s My Animals and Other Family and Lisa Lynch’s The Big C- they both have humanity, humour and honesty. Telling it like it is- real lives and everywomen, despite lifestyles wildly different from mine.

Who or what inspired you to write this book/ blog?

Time and trauma.

Rubbing expensive handcream into my mother’s feet in her last days and wondering how I’d tell that tale…

What else about your book might pique your readers’ interest?

You mean, glamour, tears, handbags and Liam Neeson aren’t enough?

When and how will it be published?

Here and now. Sign up for email updates: like Dickens, I’m serialising.

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I’m not tagging anyone; play along if you feel like it.