Government Announce Results of their Contaminated Blood Review

I'm really upset. The government are doing the least amount they can for those who meet the stage 2 Skipton Fund criteria and widows who can prove that their partners met that criteria. This is a small minority of our community and an inadequate, difficult to fulfil criteria. It is so minimal I'm bloody crying. 

What about the majority of us affected by this, as Andrew Lansley the Health Minister himself said, great tragedy. Nothing. Actually not nothing, free prescriptions and counselling. Well thanks, that makes up for me being too ill to work, being unable to have children, being a sham of a person and having a totally uncertain future. Nice one. 

I intend to blog more fully about the Government's announcement and their arguments against doing anything more meaningful over the next week.

In the mean time - happy new year.

HCV and Me - An Affair To Forget

You came into my life insidiously.

Like a demon you crawled under my skin,

through my veins and into the heart of me.

Unaware of the danger I plunged on,

not understanding what it was

I was introducing to myself.

You were there

from the very beginning,

intrinsically part of me.

But I knew nothing.

Ignorant of how you were taking over my body,

destroying my soul.

When, later on, I discovered you,

you blew me away.

Turned me upside down

dragged me inside out.

Possessing.

Obsessing.

Flung my life in an unexpected, unbalanced direction.

You exposed my dark and twisted self.

I was never to be the same.

I railed and fought to resist

the all encompassing nature 

of your poison.

Yet you clung to me,

weighing me down,

changing me,

infecting me,

draining me.

Now am I free of you?

Are you gone?

Have you left me, in peace?

Or still dangling,

turning like a body hanging from a tree,

waiting for the wind to pick me up

and play with me once again.

I hate you.

For the gifts you gave me.

The tumultuous emotional tornado,

the paralysing physical pain.

But you made me.

Who I am.

You are still hidden within.

There will always be a fragment of me

devoted to you.

Joking apart ...

People tell me I have a positive outlook on life.  During my life I've been told this a fair few times.  I usually think nothing of it and thank them.  Recently, however, I've begun to question myself.  Do I??

I decided long ago never to walk in anyone's shadow.  Actually that was Whitney not me, it ain't a bad philosophy but it ain't mine.  My decision was to follow Eric and Ernie in thinking there should be more happiness in this world.  To apply Brian's philosophy to look for the glint of hope in even the biggest piece of poo that life deals us.  Thus I've tried to face most challenges with a smile and used my sense of humour to distract myself from difficulties.

Recently I find myself wondering if the sh*t really is just that - sh*t.  And mebbe I've known that all along.  Have I just been kidding myself??  Is my positivity a sham?  A facade?  Am I actually full of sh*t??

Maybe hearing people say too often - it's amazing how positive you are - begs the question, why the hell am I?  And then, in fact ... am I?  Or is it a discipline I've adopted for so long I'm smothered in layers and layers of positive attitude and unable to see the real Ros, whoever and whatever she may be?  Whatever and however she may feel.

Maybe upbeat-ism it is my shield of steel?  Maybe I wear my carefree cape for protection?  To protect me from delving deep into my deepest darkest innermost feelings??  Where reality could be pain and disappointment and gut wrenching inadequacies.  To protect me from honesty?  Or to protect others perhaps?  From having to hear about it.  From perhaps feeling pity, or sympathy, or guilt, or disgust?  Not feelings I'd want to engender in anyone.  I don't want that.  Not any more.

Perhaps I actually am this damn perky?  Perhaps I do laugh out loud in the supermarket, sing when I feel lonely and smile in the dark.  Maybe my antidote to the less fun stuff is positivity and hope?  What's wrong with that?  Is that not the best way to be?

Always looking on the bright side can be tricky when it's raining on the inside.

Should I turn my face towards the rain?  Seek out and face my truth?  Or turn away, put on that brave face, and smile ...

May I Be Well...

My friend and I recently went to hear a man called Dr David R Hamilton speak.

Dr Hamilton is an ex-scientist who now writes books and speaks in a motivational manner.  That is not the way he would market himself I am sure, but that is my understated synopsis.  If you would like to see how he does market himself you can do that here:

Dr David R Hamilton's website

I came to know him because the same friend lent me a book he had written:

How Your Mind Can Heal Your Body

I read it in no time - and yes, with CFS that isn't always easy but this book was straightforward and fascinating.  I would recommend checking it out if you are interested in any way in how the mind can have real impact of the condition and health of the body.

We attended his talk in Birmingham, which was on the same subject, and found him to be indeed a motivational and very entertaining speaker who makes complex ideas simple and has a great way with examples.  Whilst at the talk I purchased another book of his:

Why Kindness Is Good For You

It is this book to which the title of this post refers. In another Ros nutshell this book is about the direct impact kindness has been proven to have on your health.  Not just kindness towards others but also kindness towards yourself, and how behaving in this manner can change the very structure of our brains, can make us happier and improve our immune systems. Do I mean that by being unkind I am responsible for my having a bleeding disorder?  Unlikely because that is an inherited genetic condition. However, it is suggested that by not being kind we put stresses on our nervous systems to the detriment of our health. Some of the examples given of the conditions improved in David's book include depression, stress, inflammation, heart disease, blood pressure and pain.

That may or may not have relevance to the current state of my health but it is something that I can see the evidence for and I believe it is therefore worth a try.  It involves not only being kind and compassionate  towards others - which is not always as straightforward as it sounds.  But what is also important is being kind to yourself. Treating your self with compassion and love - whatever you feel you deserve or how lowly your opinion of you.

Within Chapter 1 is included an exercise which the reader can perform.  The idea is that meditation is a good way to alleviate stress and depression.  The meditation to try is a Buddhist Loving-Kindness meditation which is good for increasing positivity and pain relief. The book explains how to perform this meditation and includes the words which you use as a starting point.  The premise is that you begin with yourself and you can then expand the meditation outwards through your family, friends, work colleagues, neighbours, doctors, basically anyone and everyone you ever come into contact with.  You can aim to incorporate as many or as few people as you like, or you can start small and do only the circle closest to you.

I lay on my bed this morning and thought I'd give it a go.

I relaxed.

Closed my eyes.

I listened to my breathing.

Paid attention to it going in.

And out.


"May I be well,

.........

May I be happy

.........

May I be at ease"

I focussed on my heart.

On generating a warm positive feeling.


"May I be well,

.........

May I be happy

.........

May I be at ease"

Breathing in.

And breathing out.

Feeling relaxed.

And positive.

And calm.

"May I be well,

.........

May I be happy

.........

May I be at ease"

.........

I opened my eyes.

Kept my breathing calm.

And relaxed.

Feeling positive.

Slowly got up from the bed.



Walked to the bedroom door.

"May I be well,"

Walked into door frame.

"May I be ow bloody door frame,

May I be not flipping bashing myself into the frigging door frame,

May I be at ease, buggerit.

Hahahaaa!  Oh dammit."

Hmmmm, not quite how the Buddhists do it I expect.  Think I've got work to do.  And start on myself.

NonSense

Sometimes I hear singing in the silence

Sometimes I see colours in the dark

Sometimes I feel the warmth of a hug though I'm alone

Sometimes I sit in sunlight,
surrounded by people,
and am deaf, blind and numb

Rut Race

I'm down, deep deep down.

No air. No light. No where.
I reach out blindly. Feeling forward with my hands.
Slowly, tentatively.
I touch soft, damp, something.
Rub my fingers together. It crumbles.
Press my fingers further, dig them into it.
Up to the wrists, hands suffocating...

Get them out! Get me out!!!

I scream but produce a thin stream of air.
Try again. No sound, though my throat is vibrating, perforating.
I raise one leg.
Feel with my foot trying to gain purchase on the black in front of me.
Hit something. Put weight on it, slowly, slowly.
No support. the ground crumples beneath my foot.
Back where I began.

Again I step out and up.
Again the crumbling, falling.
No progress.
Maybe faster.
I move my legs in turn.
Climbing invisible stairs.
Each time the ground shifts.
I get nowhere.
Faster still.
I pump my legs.
Left right left right.
Feeling nothing substantial.
Movement beneath me.
Not going up, not getting out.

I inhale a dank deep breath.
I exhale into the blankness
and sprint.
My legs pinwheel.
Faster, harder, pumping like an automaton.
My arms are right angles.
Pistoning back and forth.
Faster, harder, again, again, again.....

I'm moving with incredible speed
of an athlete,
a cheetah,
a machine,
but I'm no nearer the surface.
No nearer light, freedom, life.
I feel the surface on which I'm running, move.
It slides from under my frantic feet.
Like scree down a mountain.
I'm sliding, out of control now,
I can't stop.
My limbs flail.

All I can do is keep running,
must remain upright,
not let the darkness consume me.