still here?

I have been here all along, sleeping, writing an assignment, preparing a presentation, responding to a consultation, watching the remarkable referendum results, wishing I’d had a vote. The referendum was to amend the constitution of the Republic of Ireland- I live in Northern Ireland. It’s a very different jurisdiction, where we had a whole legal row about a cake with a message supporting same sex marriage. The court case wasn’t about actual same sex marriage, you understand. The row was about a cake. Well, ok then, not just a cake, more about equality, freedom from discrimination due to sexual orientation or political views. The island of Ireland has many complexities.

yes

And of course I was watching Irish dancing. (This video shows a fellow competitor, younger than Girl1 and Girl2. She’s young enough to still wear socks, while they wear black tights. Two pairs for added blackness.)

I love to watch our girls dance; it’s the travelling and the sitting and the noise and the hours that bother me. But girls have fun and learn and sometimes get medals. The know how to accept defeat graciously, they know how to keep motivating themselves, how to work at improvement, how to show up and perform, and they know how to celebrate a win gracefully. All that, and they can do amazing things with their feet.

Spurs Fan was away at the weekend. He returned to the homeland; to Nana, Grandad and Tottenham Hotspur. They nurture him.  Of course he was worried about the chaos he’d left behind- would Jake get his insulin, would the clothes get washed, would anybody get fed? Every morning he texted an alarm call, contented to not be here for the reaction. We had no news to tell him when he came home. All the technology meant that he knew everything, having had live action updates. Girl2 let him know about a vomiting dog before she appeared with the kitchen roll to help clean up. Lucky Spurs Fan.

This coming weekend the Scotland branch arrive. I am not a flurry of cleaning and ironing, or food shopping. We will not be here. Nor will they. We’re all heading off west for a few nights in the fancy schmancy hotel. One of us is getting on a bit and needs to lie down somewhere comfy. There may be sparkles and cake along with the cuddles and loveliness.

Feel free to join us. Apart from you songbirdsignbird and you, soulwais. You have a grumpy dog to look after.

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…

https://memineandotherbits.wordpress.com/2014/09/29/on-being-a-spoonie/

https://memineandotherbits.wordpress.com/2014/09/18/id-rather-be-broken-than-empty/

https://memineandotherbits.wordpress.com/2014/01/24/its-not-rocket-science/

 

 

hide and seek

I was found earlier, as I hid under the quilt. I wasn’t hiding from a girl in particular, but from the world in general. A world that requires me to engage. To pay bills and write notes to school, to transport dancers and consider meals. Imagine how I’d be if I had to consider a job as well. Some days getting out of bed is an achievement: pity any company that relied on me.

Some days hiding from the world, avoiding interaction, is the only way to go. I don’t understand other people. Half the time I don’t understand myself.

The general election returned a Conservative majority. Many, many people voted in hope for a better life under a Conservative government. I hope they’re right.

I hope the poor, vulnerable and disabled  receive the support they need, and social security to be able to have safe, warm homes with adequate food and clothing.

I hope all people have opportunities to learn, flourish and contribute to wider society.

I hope the National Health Service is valued, and kept in public hands, for all of us, if and when we need it, regardless of our ability to pay.

I hope the UK remains part of the European Union.

I hope that education and educators are supported and respected.

I hope that there is a strong voluntary sector to target services for those in most need.

I hope that the issues arising for all of us out of climate change are addressed seriously.

I hope that agreed international standards of Human Rights remain enshrined in law, and are supported by all government activities.

I hope that the politics of fear and ‘othering’ is replaced by collective vision and partnership.

I hope that consideration of social justice and equality underpins the government world view.

unicorn

I may be living in a fantasy world, under my quilt, but what’s wrong with that? There’s money to make it happen, but instead there’ll be another £12 Billion cuts to social security, hitting the most vulnerable, and favourable tax arrangements for the very wealthy. Dave and his mates will still make money out of companies he sells national resources to. Those on benefits, non nationals, the EU, and asylum seekers will still get the blame for whatever is ‘wrong’.

Maybe the Conservative voters are right to seek solace with the familiar. A shiny future awaits, despite all the evidence? I hope so.

I’d really love to be wrong.

In the meantime, I feel like this guy.

unicorn2

 

 

waiting on the rage

The exit polls were a shock. There were hours of disappointment before I went to bed. When I finally made it up again there was lots of drama, but more despair.

A majority for Dave and his mates.

How is that even possible? The vilification of the poor, vulnerable or disabled. The selling off of the National Health Service. The pandering to the wealthy at the expense of the rest of us. Systemic abuse of the ‘others’. Deliberately chosen by the electorate.

No longer can we talk about Dave having no authority for his decisions. The British electorate decided, against all the odds and contrary to all the pre election polls, that they want more austerity, more food banks, more benefits sanctions, more capitalism. I am genuinely baffled. And bruised.

In our own constituency, I voted for the weak, unlikable incumbent to reduce the chances of a Conservative led government. A conservative majority was never a consideration.

What do we do now? Those of us who believe in equality, equity, supporting the sick and vulnerable, valuing all the people? Those of us who are exhausted and defeated?

We must find ourselves again. We will be resilient. But, today we need a boost, and a reminder.

 

Will there be room in Scotland for everyone?

 

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