Blogging for ME/CFS Awareness 2008
Well “drum roll” this is the official opening of my blog! I know, i know i already wrote something on Friday but no-one read it yet and i just needed to know that i could work out the basics before the BIG DAY…
So it is (almost) International ME Awareness Day 2008! I have started this blog specifically for this occasion, as explained in my HELLO page.
I am going to talk about CBT soon (maybe tomorrow for a de-brief!) as that is what i am doing on Monday 12th May… having my second CBT session. This is not the way i would like to mark the occasion but as i can’t do more than one “big” thing on any given day (usually more like one thing in any given week), i shall have to wait til next year to join in any actual events that are being held to mark the day.
Surprisingly there actually is something going on near me – an Action for ME (AfME) pillow fight fundraising thing. I am a bit disillusioned about the whole concept, mind you, as even if i was well enough to get there and watch for a while (maybe of i took a taxi both ways – goodbye £25 – and wasn’t already having CBT), i think they really should do something people with ME (pwme) can take part in, not just their able bodied friends/family… being bashed with a pillow, however soft is not something many of us would risk with our dodgy muscles and various aches and pains… even the symbolism of a pillow fight annoys me… “lets make being bedridden sexy…” please NO. It also makes ME into just about being tired, and lying in bed, which oversimplifies an illness characterised by many diverse symptoms. Maybe i am being over-critical but it is not for me.
One thing i have heard of which anyone can do is a vigil… it may not be everyone’s cup of tea, but it is inclusive at least and creates awareness which is the general idea! See the website:
www.vigilformeawareness.org.uk/ I will be taking part!
Right, better go fill in the forms for CBT about how i have been feeling this week… I just don’t feel like i fit into the ticky box categories… i feel some scribbling coming on 
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May 12, 2008 at 12:43 pm
Blogging for ME/CFS Awareness 2008 - Blog Archive « RachelCreative
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May 12, 2008 at 12:44 pm
Blogging for ME/CFS Awareness 2008 « RachelCreative
[...] the signs on Blogging for ME/CFS Awareness 2008nmj on Blogging for ME/CFS Awareness 2008International ME/CFS Awareness Day « Ashy’s Weblog on Blogging for ME/CFS Awareness 2008ashysheela on Blogging for ME/CFS [...]
May 12, 2008 at 2:27 pm
rachelcreative
Hey! Great post
)
Someone had a great idea (in the US) I think to have a bed and pyjamas demo or parade or something like that. I could possibly handle a pyjama sit in ;o)
One of the reasons I tried to sort out a “blog for ME/CFS awareness” this year was I so frusrated last year at figuring out what I could possibly do! But anything we can do is good I reckon.
Well done on getting your blog up and running by the way. All the best with CBT number 2.
May 12, 2008 at 3:46 pm
Maggie
Good luck with the CBT! Don’t let them bully you into doing to much.
The good ones shouldn’t, but I’ve heard some bad stories. Better go, have to get to counselling now (but not of the CBT kind).
Best wishes from sunny Liverpool
May 12, 2008 at 3:54 pm
ashysheela
Rachel – thanks so much for inspiring me to get involved – i feel good for being part of something
Maggie – Thanks – it was ok… my full thoughts will be posted soon! He is not a bully so far, unless making me write another “diary for a week” counts… yawn… how much of my life do i have to document!!? Hope your counselling was useful.
May 12, 2008 at 4:03 pm
cusp
Well welcome to the world of blogging and what an auspicious start. I shall look forward to reading your feelings and ideas about CBT.
May 13, 2008 at 1:59 pm
Rachel M
Hello!
It’s nice to see you have started blogging.
I feel the same about “Pillow Fight” fund raising event. On the other hand, there are nobody else actually care enough to organise fund rasing for ME/CFS…
It would have been nice if they had consulted with people living with ME/CFS how we feel about it.
I hope you don’t mind me adding your blog to my ME/CFS Awareness page.
May 13, 2008 at 4:22 pm
ashysheela
Hi Rachel M, no i don’t mind at all – ta v much!
May 17, 2008 at 5:57 pm
Update: Blogging for ME/CFS Awareness 2008 « RachelCreative
[...] Ashysheela – International ME/CFS Awareness Day [...]
April 1, 2009 at 8:45 am
UPDATE #2: Blogging for ME/CFS Awarness 2008 « RachelCreative
[...] Ashysheela – International ME/CFS Awareness Day [...]