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 week...you never know I might get away with it
Cue hollow laughter from the galleries...