Archive for the ‘Uncategorized’ Category
So it begins…
The brown letter drops on the doormat and only those who rely completely upon benefits when chronically sick can understand the sheer dread and stress it causes. This blogger has been sick for a very long time, in receipt of a lifelong award for Disabled Living Allowance, but like many before her, including my husband Clive, who transferred over to PIP last year but only after going through and entire year of stress…she is now being forced to explain her illness to continue receiving the money she needs to live
She will have to use energy she doesn’t have spare, most days it’s a struggle for her to wash and feed herself, to complete the large questionnaire type form and also she has to endure the stress and fear of wondering if she’s said enough or the right things to get across how it is to live with a chronic disabling autoimmune disorder. It’s the beginning of her journey transitioning from DLA to Personal Independence Payment so I hope those of you who understand the process can wish her well on this path and those who don’t understand it can read her blog over the coming months and see how she copes with it all. I’m sure it’ll open your eyes to how difficult it all is. I imagine it’s going to be a warts and all story filled with her feelings and frustrations but above all I hope it’s going to run smoothly and that the DWP treat her with respect and compassion.
My journey to be able to live… I’m being asked if I want to continue to get the help because I’m to sick to work… in truth I’m to sick to actually achieve daily functions … I’m talking about eating food an getting dressed.. let’s not discuss the washing situation.. or hair washing…
I’ve been waiting for this letter to drop on the mat for over two years… this is me going from (DLA) a lifelong award because of my illness to PIP the new benefits for the disabled…. it’s broken down into how much extra help you need to have to function in the real world… well in theory….
So I will explain at a later date because this blog is going to chart my journey…. how the process is causing real and serious harm to people….
I’m a fairly tenacious person.. I don’t let things affect me to…
View original post 190 more words
I’ll tell you about M.E. by Jonathan Eyre.
http://sustainablyyours.blogspot.co.uk/
One poem from a 10 poem pamphlet ‘ Stopping the Clocks’. By Jonathan Eyre.
I’ll tell you about M.E. –
I’ll tell you about M.E.
Write down your dreams, your aspirations, on a sheet of paper,
Done it? Write your aspirations down! One or two of them,
Maybe the deeper ones. Done it? Now tear it up,
Tear up the sheet of paper with your aspirations written down on,
Tear the sheet of paper into tiny pieces and throw them to the floor.
Commit littering where you are now, don’t hold back! Done it?
Do this every day, every hour, in the street, in your seat, in your car, in your kitchen, in your bed, Do it where you stand, where you cook, where you think, at the work desk, on your computer.
Not just mentally, But in this physical representation of your personal dreams for a future.
This is the process of M.E., torn dreams, aching limbs, an exhaustion that strips you of your soul’s desires, strips you of your simplest objectives in life,
Tears even the thoughts you are having at a moment in time,
Tears the conversations from your mouth as you are trying to have them,
Tears them into shreds.
So you make your dreams smaller, I’ve read the books, done the
Cognitive Behaviour Therapy ‘patient sufferers’ course.
You make your aspirations easier to achieve, to have a shower, to walk two extra steps, go and post a letter, to read the next few pages of a novel, to say hello to a friend…
………And I can see you have not got it..
Go on, write these smaller dreams down on a new piece of paper.
Now tear them up, throw them to the wind, these simpler dreams,
Do this every hour; train your mind to accept this
To accept that even the shadows of your deepest dreams
Are……….. torn…………. to …………..shreds,
Rendered into a fatty deposit
That sinks to the bottom of the latrine of your aspirations.
That there is around you the smell Of festered and decomposing dreams……
Your life is not broken, it is torn over and over and over again,
Thrown as confetti the day you became shotgun wedded to this disease
And you now find these torn pieces hidden in the clothing of your personality,
The folds of you character, turning up as decapitated words and scrambled torn individual letters
On thousands of pieces of torn sheets of paper,
Shards spirited away by unseen underground rivers of illness.
And I see you might be getting it, the enormity of this incurable disease
That cheats on the body, steals the mind and toils the soul….
So now that you are working it out,
Write these thoughts down on another sheet of paper, tear these up to smaller pieces and send these to your friends.
I have no need of them; I have too many tears
(or is that tears)
Of my own.
Jonathan Eyre 2012
If you want to share please include the author, Jonathan Eyre’s name, thank you. Or go here- http://sustainablyyours.blogspot.co.uk/
It’s been a while!
hi everyone…
its been a long long while since I blogged here. Life got a bit more difficult, my dear old dad died and then I was just spending a long time being very kind to myself…crafting, gardening, resting when I needed it and playing when I could. So this little place became a memory and I didn’t think to pop by and talk about my health or how losing my dad made me feel…I just lived and felt and was for a while just me…being a little selfish which is required when you need to heal and grieve.
im not saying I’m back…I’m just here tonight saying where I’ve been. I’m hoping life is being kind to you all out there and if it’s not then I hope you can get through whatever it is the best way you can.
much love…Cee.x
Mouse Crap
MOUSE CRAP
Everybody out there with chronic fatigue syndrome (CFS) – WAKE UP! There are some creatures in the room, and they aren’t mice. Well, these creatures are distant cousins of critters that live in mice. These cousins have moved on up to live in humans
These creatures are called retroviruses. So far there are only three retroviruses known to cause disease in humans according to the United States government. HTLV-1 is associated with adult T-cell leukemia. GTLV-2 is associated with hairy cell leukemia. Human immunodeficiency virus (HIV) is associated with acquired immunodeficiency syndrome (AIDS). http://www.ncbi.nim.nih.gov/books/NBK7934
But there might be another retro creature causing human disease. Dr. Judy Mikovits studied blood samples from CFS patients and controls looking for a new retrovirus. She found 67% of CFS patients were positive and 3.7% of the healthy controls were positive. These results were published in “Science” on May 23, 2009. Later…
View original post 771 more words
I stand quietly
Autism awareness.
I stand quietly while you do somersaults on the bed as you aren’t being naughty, you are just trying to get your out of sync body under control.
I stand quietly by the toilet door every time you need to go, and come with you around the house, and sometimes even just across the room, because I know you can feel truly frightened when you are not near me.
I stand quietly at the supermarket checkout while everyone stares at you barking like a dog and blowing raspberries on my arms to cope with the buzzing lights.
I stand quietly while you tell the baffled shop owner that you are looking for shoes that feel hard like splintered wood because your skin can’t bear soft things.
I stand quietly when the attendant gives us scornful looks when I ask for the key to the disabled toilet because the hand dryer…
View original post 800 more words
Animated clouds
In the month of February, two new films were discovered whilst scavenging for pumpkins in the mind of the Bewildered Cauliflower.
The first film formed after an intense week in January making ten short animations in ten days. I made four of these films to relate on some level, then afterwards, began to explore possibilities and polish them, turning into this!
The second film is a poetic experiment relating to the cloud story, currently in progress. I put together some already created images to some of my notes, read aloud and beautifully put to guitar by my friend, Scott McHenry, who lives here: http://scottmchenry.co.uk/
Here is the film. I think it is a boost to inspire further ideas for this tale, as well as an experimentation into the animated world.
Beneath a full moon tonight, I sit awake and listen to the voices of tomorrow, beckoning me to join their…
View original post 1 more word
Clouds
I’m blown away by the beauty of this young man’s art. There are also some of his videos on Vimeo here https://vimeo.com/121291772.
The Lancet’s representation on Social Media on 4th March 2015
Yesterday, Pam Das, a senior executive editor on The Lancet’s editorial board accused ME sufferers of being bullies on Twitter. As Ms Pam made such an accusation in the public sphere I have informed The Lancet of posting my letter of complaint to my blog where it can be publicly discussed. Needless to say I am appalled by Ms Das’ behaviour which has caused unnecessary upset. As I have made clear in previous posts I am of the opinion that we need more knowledgeable and well-informed people who engage in critical thinking and compassionate practices. Hateful remarks on social media are not the way forward. I hope The Lancet will dignifiy me with a response in which they clarify their position.
