I just can’t, I just can’t, I just can’t control my life

May 12th is ME Awareness day. Is there anything left for me to say? The regular reader knows that I woke up one day nine years ago and couldn’t move or think or begin to figure out what on earth was wrong with me. A bit of a bug, perhaps? A nasty flu? Flu is horrible.

Weeks turned into months. Months became years, and into the foreseeable distance.  I stopped expecting to back to work on Monday. I stopped hoping to get better. I lost my job, my normality, my future, and I’ve been making it up as I go along ever since.

Limbs of lead, random muscle pains, anxiety, depression, cognitive problems, constant exhaustion, concentration difficulties- years and years of it.

I’m one of the lucky ones. I spend a lot of time in bed, but I’m not bed bound. I can leave the house. Spurs Fan works hard to prevent total squalor and starvation round these parts. Girls keep an eye out for straighteners switched on, pots boiling over. Nobody complains about burnt or undercooked offerings. We are content with a reasonable level of grub and crumple.  I have good friends who ensure I have a social life, however limited. I can volunteer. I have the internet.

ME is not ‘in my head’. Two courses of Cognitive Behavioural Therapy, the anti mad tablets, and a 12 week Condition Management Programme haven’t cured me. Painkillers, a hot water bottle, a footstool, and a comfy bed are my medications. Even the social security agency accept that I’m not fit to work. Irrespective of my health, they could change their criteria at any time. ‘Control’ over one’s own life is an illusion; if we are lucky we can merely ‘steer’.

I manage by finding ways to make a difference in the world. There’s nothing dramatic about how I volunteer, but it makes me feel useful, and the results help others connect.

I manage by running away to Donegal when I can. My mind is cleared by wind, sea and emptiness. We all come back to ourselves on the beach.

I manage by reading and by exploring the outside world virtually. My current read is An Astronaut’s Guide to Life on Earth, by Chris Hadfield. Hadfield is a skilled communicator and storyteller, as well as being the guy who brought us Bowie from space. Although I read plenty of crime and pulp fiction, I like books which make me view my world differently, which make me think, but which are easily read. My brain can’t cope with academic reads; I am the mass market. I like to sing along.

Singing along is a key ME survival technique for me, despite not being able to sing. There are enough can’ts in my world.

I manage by trying to remember who I am. I am me. I am not ME.


For the keen, some previous posts on my ME experience…






preparing to leave

I love being on holiday. Time with no expectations, space to muddle along  and let life just happen.

Preparing to go on holiday, however, is a different thing.

X days = Y outfits.

Is there a washing machine?

Don’t forget the underwear and the pyjamas and the wetsuits and the body boards and the skateboards.

Shampoo, people. And oodles of conditioner.

Of course you need to bring a coat.

Warm things.

Picnic bag.

Did anybody pack the swimsuits?

Doggy bed, doggy food, doggy medicine.


It starts off sensibly and before we know it, there’s no room in the car. Nothing seems superfluous, but there’s only 4 of us. Spurs Fan packs the car. It’s like a 3D jigsaw, a Krypton Factor puzzle. He manages to leave enough room for the last minute make up bag/ hair straighteners/ cuddly toy, but if you want something else bulky, you have to sit on it.

There’s only one thing that keeps him sane in the process. The holiday playlist/ CD/ mixtape.

There’s nothing haphazard about these- they are themed. There’s a Scotland CD, so that we come off the boat to Simple Minds and by the time we get to East Lothian, we can see Sunshine on Leith. We were in Co Clare, so we had west coast songs.



Clare is a beautiful county, busy in the summer months with holiday makers and tour coaches. Narrow roads, wide buses, wrapped up visitors.

Because of our holiday music we ended up doing a little tour guide performance every time we saw a bus. It never got old.

“On the left, we have stone walls. And if you look to your right, you’ll see that the grass is green.”

We are easily amused.

homework for daughters

Donegal, May12

Dear Girl1 and Girl2

Most mornings you head off to school with a variation of “Love you, work hard, have fun, be kind, see you later pet” ringing in your ears. Some days it’s full on, other days it’s a grunt and a hug from under the quilt. Every day, that’s what I mean to say.

There’s more too. I could go on. I often do.

You’re at school now, learning lines for the musical, all about negative numbers, what Vitamin C is good for and something about factors, whatever they are. All of those are important, the sort of things that schools are good at. You’re learning all day, every day. I never learned to play a tune, to hit a ball where I wanted it to go, or to pass a physics exam, but I’m still learning important things about life.

Tina Fey wrote a wonderful prayer for her daughter. I agree with every word of it. That won’t stop me adding more. I’ve made you a list- LOLsome, I’m sure- of things I don’t want you to forget. We all need to be reminded of them from time to time…

  • love, laugh and live life to the full
  • hugs are the business
  • you can’t get rid of your parents; no matter what you do, no matter how hard you try to run away, we’ll always be there. Even when we’re gone.
  • respect yourselves and others
  • be polite and mannerly
  • to know that no one is ‘better’ or ‘worse’ than you are. We’re all just people, muddling through.
  • find the humour- it makes things easier
  • enjoy what you work hard at
  • make people feel comfortable in your company
  • make an effort- good things generally don’t just land at your feet by chance
  • value your own opinions
  • be guided, but not led
  • don’t add to the unfairness of the world
  • never be afraid to ask for help
  • generally, negotiation works better than nagging
  • campaign for social justice
  • sometimes you need to protest, to stand and be counted, to shout a bit louder
  • keep singing and dancing
  • wear a coat when it’s cold
  • remember that wellies are not the devil’s work
  • always, always, be there for your sister, no matter how irritating she is
  • be curious
  • make a list
  • bring a hot water bottle
  • vegetables are edible

I’ll probably keep adding to this, just to annoy you. Daddy may add things like “No, you can’t go out wearing that” and “You must support no other team but Spurs”.

You know us well. We continue to be amazed by you. Our people.

Now, go and do your homework- this is the stuff you get tested on every day in life. Get it right early on and you’ll be grand.


risky behaviour

Jake the re-homed westie has been with us for nearly seven months now. A lifetime. I’m still fascinated by how we’ve adapted to having a stubborn old dog about the place, and how he’s adapted to us. Having trained us that longing looks at the fridge mean ‘ham, ham, ham, give me ham’, he seems generally quite contented with us, and he’s getting more relaxed in the outside world.

He’s not a bouncy, friendly dog; he’s more likely to lick a wee-ed on, flithy, city wall than a warm, clean and loving hand. He lets us know when he wants cuddled and stroked and enjoys it all; in his time, on his terms. He’s still wary of other people- he wouldn’t let Grandad take him for a walk even though Grandad had been nothing but kind and good to him for a week- and retreats quietly from situations he’s not happy with.

His reaction to other dogs is changing too. It’s no longer ‘head down move on swiftly nothing to see here’. He tolerates sniffing, sniffs back, and is beginning to wag his tail at these encounters.

This morning in the park, his interaction went to a whole new level. He was the investigating doggie. Bounding over for a good old sniff, sniff, sniff at another butt.

The other butt was in action at the time.

Jake only just missed getting covered in something not only smelly but warm too. He’d have loved it.