Thursday, 25 April 2013

Minding my language: Mindfulness

My week so far....
Its been so busy, I've used up loads of spoons, absolutely shattered and while its been good, not sure i paced very well. Will I ever learn this pacing malarkey? I really should have cancelled a few things.

The above is how I would have written up my week so far if two conversations and one blog post  hadn't happened. I had talked to LM recently that i was aware that despite my positive, friendly nature - I was locked into negative self talk, my lack of confidence, self belief and default setting is that  somehow being me isnt quite enough.

Its easily done - Our experiences shape us and no matter what we might want to project, it can sometimes be different to how we show ourselves. I have a slightly daft silly sense of humour but it rarely appears when im around some people - not because its disappeared, but because I get trapped by my past and fears, effectivly preventing me from just enjoying the moment

What can i do about it?
 I dont have to allow anyone to put me down and most of all its important I dont do that. Yes I haven't had a an easy time of it in my life, however Its about Minding my language, how i talk has a huge imapct on how I act, think and feel.

Im really rabbiting on about Mindfullness - something im aware of but beyond nibbling round the edges I haven't practised it in any great depth.

I felt very inspired yesterday talking to my mum about it, and despite a big emotional reaction she has a point. I firmly believe if you have an emotional reaction to something its usually telling you something. You have a choice bury it back down, or see do something about it.

With that in mind...

The givens are Im a spoonie, I walk slowly or use my wheelchair, Im in pain yadda yadda so moving swiftly on

My week so far....

 Ive had a lovely busy week - Im going to reward myself with a nice rest today. I might potter a bit and look forward to relaxing with the afternoon play - while i rest my eyes.

On Monday I went to the park with my mum and fab niece the littlest M - watching her get excited about coming down the slide, or holding my hand as we did the roundabout was great. 

Tuesday I went to Coventry and discussed PIP with the Union Reps - loved it, the access fail in the car park was surreal, the getting stuck in the lift incident was hilarious and the actual meeting was tiring yes but also marvellous. More of that please

Wendesday - a long leisurely chatty lunch with my mum, talking about everything and nothing. Mindfulness, excitedly talking about a work shop im going to facilitate, and finding a wooden train set for the littlest M.

Last night a brilliant lady spent hours helping me do my DLA form - thank you 

Today - This morning cuppa LM made me a cuppa and smile - a lovely way to wake up

I cannot control the way Fibro affects my body, its what it is a complex condition that is still little understood and therefor not effectively treated. What i can do though is control how i respond to it. Instead of saying im so tired and spoonless i cant do anything - its about giving myself permission to rest. I plan to go find out where to get some help to explore mindfulness.

Most important for me is minding my language - I have a life time of programming to address - It wont be easy but I will enjoy the opportunity to explore a new way of looking at the world.

Or should I say be present and paying attention to my world without judgment 

Thanks Mum, The Gherkin eater and Jo you have made a difference and now its time for tea :)

Morning cuppa

Tuesday, 23 April 2013

Springing into spoon deficit

Every year I promise myself it will be different, I wont get the first rush of spring energy and blow all my spoons in one go..and every year i forget my wishful thinking and dive headlong into things then desperately back peddle as i realise that:

1. I do not have the spoons
2. Pacing is not a dirty word
3. LM does often talk sense & I should listen to him

Why do it - I convince myself im pacing, im desperate to be active, after the long dreary cold, dark, soulless months couped up inside with barely enough energy to get up stairs let alone do stuff. I have got a bit more sensible she says..knowing full well that next week I will feel very different.

Its not that I haven't done anything over the winter, Ive been busy co-founding Disability Matters Uk, writing the odd food blog and other bits and bobs but going out and well doing stuff has been absent.

I decided this year id get a bit more involved in things and meet people, something i failed to do in Leeds. So thanks to the lovely Ermentrude on Twitter i came across Healthwach. The new national network of Healthwatch's) Independent Consumer Champions for Health and Social Care (not struck on the word consumer)

I joined up and had a lovely chat with the Luton one, who are recruiting for board members - right up my street - not too much commitment, but enough to keep me occupied and a chance to make a difference locally.

 If you are sick or disabled its Worth a look - even if your not and you care about the NHS and Social Care then get involved - lets use the powers it has to hold them to account and speak up loudly. Each Healthwatch has the powers to do unannounced visits to care homes, hospitals and any public funded body (Health or Social care) I'm not saying we all wade in - but for me the only way I know to ensure we limit the damage is to be present and do what we can.

It was a funny feeling after 5 years to get board papers again, i went to a meeting as a HW rep for a new well being project - I loved it and had missed that buzz more than I thought. It made me laugh there was a community regeneration bod there (my old profession) asking really good questions. I hope I bought good stuff to the table, especially around pushing that chronic ill health was not just about life limiting conditions and where exactly did they think they would find people like me???

Today im off to Coventry to talk to some Union Reps about the Financial Impact to Local Government when PiP rolls out nationaly this year. You can read more about it at the excellent Pseudo-Living blog - using a Briefing paper written by Prof Simon Duffey at the  Centre for Welfare Reform.
Im hoping to make some good Union Links and see if its possible to spread the word and begin to join some dots. I also get to have lunch with one of my lovely friends so its all for the win...

Having written that I will be in trouble with the Spoon Police - But for the first time in a very long time I feel ok - good days, bad days but in myself im ok. I wont ever get better, but the adaptations, accepting some things and letting go of others has really helped - although shall we remind me of that statement next never know I might get away with it

Cue hollow laughter from the galleries...