The Orkney News has previously reported about a support group in Orkney for People with Fibromyalgia,ME/CFS: F.A.M.E. You can read about it here. Fibromyalgia, ME/CFS Orkney Support Group
Gail Ross MSP, SNP, held a parliamentary reception in Holyrood to mark ME Awareness Week: “This Is Me”.
She has also lodged a motion which has cross party support from many MSPs.
Motion S5M-12207: Gail Ross, Caithness, Sutherland and Ross, Scottish National Party, Date Lodged: 11/05/2018
ME Awareness Week
“That the Parliament celebrates ME Awareness Week, which ran from 7 to 13 May 2018; acknowledges that people with ME, their families and ME organisations worked hard during the week to highlight the lived experience of people with ME/CFS; notes that many people with ME attended a reception at the Parliament on 9 May, which was organised by Action for ME and sought to raise awareness of the condition, and thanks all those with ME who attended this and other events around the country to share their stories.”
Supported by: Emma Harper, Colin Smyth, Fulton MacGregor, Tavish Scott, Richard Lyle, Sandra White, Kate Forbes, Miles Briggs, Liam McArthur, Jamie Halcro Johnston, Joan McAlpine, Finlay Carson, Claudia Beamish, Annie Wells, Graeme Dey, Jeremy Balfour, Richard Lochhead, Edward Mountain, Alex Neil, Donald Cameron, Colin Beattie, Stewart Stevenson, Rona Mackay, Bill Kidd, David Torrance, Gordon Lindhurst, Gillian Martin, Monica Lennon, Ben Macpherson, Clare Haughey, Jenny Gilruth, Alexander Burnett, Christina McKelvie R, Daniel Johnson, Jackson Carlaw, Alex Cole-Hamilton, Kezia Dugdale, Tom Arthur, John Scott, Rachael Hamilton, Iain Gray, Dean Lockhart, Bob Doris, Alex Rowley, Neil Findlay, Bruce Crawford, Murdo Fraser
Hopefully with the motion, the ME week and the work of the local Orkney group more people will become aware of how ME/CFS and Fibromyalgia affects people.
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I don’t have ME, but I do have what I refer to as ‘this tiredness thing’ – I don’t like to give in to the official title! I try to explain to people that the tiredness, isn’t like tiredness, it’s something beyond tiredness, where you can’t function.
Folk see me out and about, and don’t realise that, to be out and about, I rest the day before, then am good for nothing the day after.
You can give into it, or fight it – but it is hard for folk to realise how it is, when they see a person full of life – it’s all to do with managing your time and your energy levels.
We just can’t do stuff, like other people – that’s what it comes down to – we can’t do some stuff, but, by managing what we do, we can….DO! We can’t do too much or we….crash. That’s my experience anyway. And, I must admit, I just go for it sometimes, and pay the price, but – I’m not prepared to live a half-life, if I can help it.
Yesterday, I rested, in the knowledge that I was going to a Folk Fest concert last night. We went to the concert, enjoyed it, and today…..confused mind and ZZZZZZZZZ. That’s just how it is – could be worse – I’ve been worse – a lot worse!
Anyway, if it helps, that’s my tuppenceworth – it would be good if folk could get a grip on the fact that what’s in front of them, isn’t the whole story.
What really bugs me, is that I wasn’t ill, I had this inflicted on me by careless administration of medication. No use crying over spilt milk – I just get on with my life.
I bet some folk are thinking “Ah, so that’s how she has so much time for writing things for TON”. Yes, that’s so. I can sit at the ‘pooter, when I can’t do more active things. Could be said, there’s a reason for everything.