Roll of thunder, hear my cry

  

Roll of thunder, hear my cry

My banshee wail though your lighted sky

Needles of rain pierce my social

As a raging wind howls at us all

But Throughout it all I flare erect

Against its it's force I will not defect

Oh roll of thunder, hear my cry

My keening scream against your violent sky

Ok, I know it's a few days late but Invest in ME didn't do any advance advertising so I didn't know about it until the following morning.

I'm actually really disappointed as I've wanted to do something for severe ME sufferers for some time- ever since I was admitted to hospital with dehydration and nearly passed out in a hospital bed alone. Scared I was dying I started to cry, reflecting on how as ME is strictly not supposed to be fatal and any deaths are securely kept under wraps I'd be forgotten, may as well never been born

Initially I started a whole page, but after a cold gave me a setback, I decided I didn't have the emotional or physical strength for a ongoing campaign

Instead I had an idea for a short term campaign, 'Light a candle to remember ME'. The campaigns aim would be to;

. Remember lives lost;  light a candle to remember and e- Mail me the photos. I'd then make these into a collage to represent how many people/countries were remembering.

. Raise awareness; a poster (already designed by a friend with her permission) and leaflet (designed by myself) would be available to download. I already have the basic idea for the leaflet, I merely need to download some word software onto my phone and reread inquest implications document to get my facts straight

. Raise funds;  a just giving page would be set up as the hub of this campaign with the money going jointly to IiME and the 25& ME group. 

I was planning it for next ME awareness week. Unfortunately I didn't think of it until this year ME week so it meant it'd be a whole year before I could put it into practice. Now I feel IiME have stolen my thunder rather. People will be less interested if there's more than one of the same thing

I mean its a lovely idea but I wish I could have been more involved. I seem to be  missing out on everything atm. Everything and everyone is drifting away from me

To attempt to have some involvement though in my next post I'm going to write a description of my current life with ME to raise awareness ( though I consider myself moderately affected). Meanwhile you can read the IiME statement here 

http://blog.ldifme.org/2013/08/understanding-remembrance-day-for.html?m=1
 

Celebrating lets do it for ME 2 nod birthday

 

Let's do it for ME is a campaign, run by invest in me, To raise funds for biomedical research and the 1st ME Centre of excellence in Europe. The research is being done at Uea (university of east anglia) and the centre in norwich. As I live in east anglia it's all very local.

I've been a member of their planning group from the beginning and they've now reached their 2nd year benchmark

Read their birthday statement (which includes a bit about me!) here

blog.ldifme.org/2013/07/happy-birthday-to-us.html?m=1

 

Dreams

My life seems to be largely guided by dreams atm.

For example it was a dream that inspired me to send off for the British college of journalism nvq course prospectus even though I don't even have enough mental energy to read it!

It also gave me the idea for my brothers birthday present. It's a coffee mug you can make proper coffee in. In my dream I thought a mug a rather dull present but when I woke up I realised, given his passion for coffee it wasn't such a bad idea after all! You can view it here, bought as ever off amazon 

http://www.amazon.co.uk/gp/aw/d/B0007MTNH2/ref=mw_dp_img?is=l&vs=1

It is now beleived that dreams are your body connecting with the unconscious level of the mind but in the past many cultures have considered dreams messages from the gods. Egyptians even went to dream sanctuaries where they would sleep on special 'dream beds' in hope of getting messages. Not that I'm religious but I do believe there is something spritual and 'beyond the normal' about dreams