Archive for March 6th, 2013
My Rollercoaster Life!
“Life is a Highway and I’m gonna ride it,
and everyday’s a winding road yeah!
My rollercoaster’s got the biggest ups and downs,
But as long as it keeps going round it’s unbelievable.”
Kimya Dawson.
This bed would be handy! #beddingout
And the wonderful Lisa Hannigan…
Song of the Bed by James Broughton
Song of the Bed
O everything important in life
occurs upon a bed.
It’s where you cry when you are born
and where you lie when dead.
You spend a third of your life in bed
with sickness, sex and sleeping.
You can have a good laugh with your love in bed
though it’s also used for weeping.
In a bed the most fantastic things
are hoped for and conceived.
It’s where you dream, it’s where you scheme,
and where you are deceived.
It’s where on earth you come to birth
and most of childhood spend
It’s where you come and where you don’t
and where you come to an end.
Go to sleep my baby!
Hilarious…nuff said! #beddingout
Dreams and Fears from a Dear Friend.
Transcript for this video below
Last night I watched a dear friend pour her heart out on a video she has bravely placed on youtube. She spoke of her dreams and her fears and it tore a hole in my heart watching it.
I am unable to explain adequately how this video makes me feel so I’ll just use one word…Inspiring!
I’ve done a transcript of video for those who’s hearing isn’t so good or aren’t able to watch videos.
Permission from Sarah Louise to post and share this.
TRANSCRIPT
“Hello…erm, Oh! I’ve made this message about three times; this video and I’ve managed to cry all the way through it.
I am so distressed today and I’m so on fire and I’m so shaky and generally scared by what’s happening. It’s also a very very personal video and I promised always to be really honest with you. But it’s quite hard, cos my prudish English girl gets all sort of ‘wishes to hide.’ Also I’m fully aware of the irony of making a message like this when I look like the ‘Wreck of the Hesperus’…but , yunno, I’m sure I would scrub up alright honestly. Yunno, with a couple of shedloads of make-up and a hairbrush would be a good start!
Anyway…the thing that I wanted to say was that…I’m very afraid of dying…I think about it all the time. Erm, the pain is so unendurable and so constant, that in some ways there isn’t any reason to be afraid of dying because it would be an ending to something that is, on a daily basis, unendurable and everyone who has M.E. is enduring the unendurable all the time and we find things to laugh about and we have each other and we have our families and things like that. But it doesn’t take away that the pain is constant and unrelenting and a bit of a spiteful bully really.
Erm…and I think about dying and it terrifies me because I feel like I’m unfinished. I feel like there is so much of my life that I haven’t lived yet. I got ill at 12 and I was housebound by 15. And I’d like to go to University, I’d like to travel and I’d like to kiss boys and…I’d like to hug my friends and I’d like to learn to fly a plane. I’d like to go up in a hot air balloon… I’d like to ride horses. I’d like to write books.
I mean there’s just so much I’d want to do. And life is so beautiful. The idea of not getting to actually properly live it is quite heartbreaking. But…when it’s really really bad I think well…I do believe in heaven and I could probably do all of those things in heaven… except for the kissing boys. And… I can’t tell you how much of a heartache it is, the idea that I might die before I fall in love, before I ever really get to kiss someone. I mean I have kissed people, but it was absolutely disastrous (laughs) Well perhaps I shouldn’t say this in case they watch this but it was not, it was not a fairy-tale.
And…I’ve never danced close to someone who really matters and no-one’s ever fallen in love with me or been tender of me or made love to me or any of those things. And it feels like such a heartbreak to me that I may never get those things.
And when I lay in my bed and the fire is everywhere and even breathing becomes a mission, that’s often something I think about. I think…I can’t die, I can’t die…without knowing what all those things feel like.
And I hate the idea that in this world, because of the way doctors are neglecting people with M.E. there are hundreds if not thousands of young people dying without having such ordinary and beautiful things…I really really don’t want to be one of them. But, even if I am…there are others going through it too. I mean it’s…none of them would want to be one of the ones who didn’t get those things.
And it just seems so appalling to me that so little is being done when life is so wonderful and we would have every opportunity to live it if we weren’t ill.”
