telling tales: #invisibleME

As always, I need to manage my time and my health better. I’m busy or asleep- but it’s nearly rare disease day, so we should know to expect no better. I’m less concerned with conference detail this year- that may come back to bite me- but I’m doing assorted on line courses and preparing presentations for several events, so my brain is full.

I rarely do anything in the evenings. I flop in a heap beside the fire and snuggle little people or a little dog. Sometimes I read, mostly I watch TV. (What will I do now that Wolf Hall has finished?)

But Monday’s event was important, and local. I’m on the steering group for the project of which this was part- I didn’t want to miss it. It was an opportunity to chat to politicians, patients and policy makers about ME & fibromyalgia. All I had to do was blather to the folk I was sitting beside. They’d come to learn and I tried to help. Patients and carers told their stories, very powerfully. The emotion was clear. Invisible conditions, invisible people. It was moving and exhausting.

Health Minister & organisers
Health Minister & organisers


One man was overwhelmed and unable to participate. His wife tapped me on the shoulder.

I read his story to the audience. A story of many years, much expense, and little change. A story of worrying that his wife was dead in the bed. A story of staggering disbelief and arrogance from health professionals. A story of a family of warriors. It was an honour to share that. It needed to be heard, to be listened to and to be valued.

I tell the story of my mum at the start of every presentation. It’s why I do what I do. I’m looking forward to all the stories I will hear at our event next week.

Marie reminds us why it’s not just important to hear stories. It’s important to tell stories. It’s part of who we are, and how we heal. How we stop ourselves from staying invisible.


H is for healing

Much as I look forward to it, I’m always a bit bothered when school starts again. All those people moving on, experiencing new things, learning about life and themselves. This is my ninth September staying in bed- I was off work, still expecting go back in a week or two, when Girl2 started nursery school. We have all changed since then, but I’m still in my pyjamas.

With nobody in the house, I finally have the space to deal with the random bits of paper that have gathered up during the summer. I’ve discovered the things I forgot to do, or didn’t finish. I haven’t yet found anything I did brilliantly and forgot about. There are no pleasant surprises hidden in the paperwork.

Jake is lying in the sun, sleeping. He follows me about, finding a comfy spot close to hand. He has a lot of sleeping to catch up on, making the most of long days with nobody dancing around him, or posing him for ‘selfies’, or trying to get him to play. Peace for an old grumpy dog. But last night, he had me in tears on the street. Sobbing on Sunnyside Street. Another dog,  a short lead, a sniff, a wag and- in a heartbeat- each dog going for the other’s throat.

I was defeated. What sort of fool was I anyway, if I couldn’t even walk the dog without a crisis? Anxiety and doubt were overwhelming.

I’d spent the morning filling in an application for a training course- what a laugh. What made me think I could be a ‘leader’ or an ‘influencer’ when I could hardly leave the house? How could I persuade the GP to medicate me heavily when he knew I gave presentations to big wigs? I’d seen him there; he’s related to a big wig. I’d pretended well that day, but the truth will out. I was weeping in public because one grumpy dog met another, and it was all my fault. Everything was my fault.

I couldn’t go to bed and huff- Spurs Fan had to go to a meeting and somebody needed to be a grown up. It was time to hide in a book.

Dawnriser raved about H is for Hawk; I’d never heard of it, but read a few other reviews and bought it. I’d looked at it on the shelf and wondered what was wrong with my head. I know nothing about birds. I don’t even want to know anything about birds. Yes, I know something of grief, but we all do. I’d bought a hardback book about a blimmin’ bird and I was never ever going to read it.

But last night I needed to be distracted. I needed to be taken away from my own mind. That big bird book would do. This was its chance to captivate. If I were beaten, so be it. It was just that sort of day and I wasn’t going to feel any worse.

Five hours later I realised I’d need to sleep.

The book is sitting on the table in front of me now, calling to me, and I’m not opening it. I have things to do. I will do nothing else if I open the book.

I’m fascinated, involved, totally engrossed by the goshawk (never knew they existed) Mabel and her owner Helen, an academic and experienced falconer. Helen is struggling with death and grief; Mabel is a young bird, learning about living. “Her demeanour switches from everything scares me to I see it all; I own all this and more.” I went to bed after a key moment- “A baby hawk that’s just worked out who she is. What she’s for.”

I’m unlikely to experience a late blooming of interest in birds of prey, but my faith in the power of a well told story is reinforced. Today I feel like an addict, working out how long I hold off until I get back to it. How long will the mundane messages take? Maybe I could finish the book first? Or just read a chapter? (Not even fooling myself with that one.)

kafka, book, axe, sea

So, there it is. The solution to being left behind, shrouded in brain fog and too anxious to leave the house. The solution to my just about everything.

A good story, well told.

Read a book. Always. Read a book.

an unexpected problem with reading

I was cosy and comfy in the caravan. There were bursts of sunshine and wandering on beaches. We were still in the honeymoon phase of Girl1’s return from foreign parts.

Mountcharles pier

We’d had the world cup chocolate boot presentation.

worthy winners

We’d been in a favourite shop and seen a real loom. No tiny elastic bands required.

Magee's loom

I had plenty of reading material, and was engrossed in a novel. All was well with the world.

The next morning I refilled the breakfast coffee mug and lifted my trusty Kindle, another day of lazy contentment planned. I flicked the switch, keen to get on with the story.


The screen was filled with half images and shadows of words (not a good sign), and didn’t change (a worse sign). I’d been here before, many moons ago, when my Kindle was still an infant. Amazon replaced it immediately. But now, the Kindle is elderly, obsolete. Dead. They don’t make that model any more.

farewell old friend

We have no internet access in Donegal which meant that I couldn’t set about finding a replacement until we came home. Also, I couldn’t simply continue reading the novel on my phone, because it wasn’t already downloaded to that device.

I started to read Spurs Fan’s football book, but it wasn’t the same. Less violence, for a start.

Once home, I began to investigate. I was briefly tempted by ‘Fire’, ‘HD’, ‘HDX’ and other random collections of letters before deciding I wasn’t going to pay good money for a flash tablet when I had a voucher that would practically cover the cost of a basic e reader. Doesn’t my phone do all the fancy stuff? (I have no idea what my phone can do.) After that I pottered choosing a cover and spent a huge amount of time trying to organise super speedy delivery.


The colourful cover is here. The Kindle is not. I feel like I’m waiting for a baby to be born. “Is it here yet?” “Oh, it’s on it’s way!” “Still not here.” I’m pining for a bit of electronic equipment I’ve never met.


I got the story finished. Jo Nesbo’s The Son. A bit long, a bit daft, but I enjoyed it. The reviewers didn’t. Lazy, they said. Turgid, they said. Perhaps my judgement was addled by the Kindle added suspense.

Or maybe I just enjoy some fun rubbish fiction*?


*other examples of this genre include anything by Lee Child or Janet Evanovich.

on my night with a Norwegian stockbroker

Well, who knew?

Scandi crime writer Jo Nesbo was a top flight footballer before falling victim to a cruciate injury. He then was a lyricist and musician with Norwegian pop/ rock band Di Derre. While his band mates were on the tour bus, he was flying back to Oslo daily to do the day job- stockbroker. Ridiculous levels of over achievement, before he became a novelist.

He got into writing crime fiction because he had five weeks to write something and reckoned crime would be good- it needed a start, a middle and an end, and surely he could do that. While touring Australia with the band.

At this stage the audience were rocking with laughter, or jealous rage.

from @noalibisbooks
from @noalibisbooks

Jo Nesbo faced the biggest audience of his book launch tour at the Ulster Hall over the weekend. He was impressed equally by the fact that Dickens and Led Zeppelin had been on that stage before him. He’d have been ecstatic if they’d been able to find a note of George Best having been there too.

From a distance the shaved head, black t shirt and jeans put me in mind of TV doctor/ detective Gregory House, and of course the other funny guy/ sportsman/ musician/ writer/actor chap, Hugh Laurie. This is never a bad thing.

not like Hugh at all
not like Hugh at all

Nesbo spoke of revealing only 10% of the story in his novels, trusting the reader to do the work. Also, he has to trust to the translator- accepting that some of the nuance will get misplaced in translation. What I hadn’t considered was how important an English translation is, as that forms the basis of other versions- e.g. it is easier to find a translator to work from English to Korean than from Norwegian to Korean.

He spoke mostly of his Harry Hole series of novels, but also stand alone work, film, and children’s books.

We heard of how a childhood experience eating apples off the tree (unpicked- the apples still on the tree, growing) inspired a particularly horrible murder in Phantom. I haven’t yet read that book, but the image of Jo up his granny’s tree with an apple stuck in his mouth will stay with me.

“My stories are about moral dilemmas, about choices.”

“Everybody wants a happy ending, but really, we want to know will he do the right thing. Will he save his eternal soul?”

I’ve read several of the Harry Hole series. The rest may have found their way on to my Kindle within minutes of me arriving home…

“I am the world’s greatest living crime writer. Jo Nesbø is a man who is snapping at my heels like a rabid pitbull poised to take over my mantle when I dramatically pre-decease him”
–James Ellroy