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.

Bleed Hazards

As a type 3 von Willebrand, life is like a box of chocolates. One which has been sabotaged by an ex lover and is filled with poisoned soft centres and pebble filled truffles which will break your teeth.

Being a severe bleeder, activities which are undertaken without a second thought by a non bleeder, to me can be high risk activities. A high risk, that is, of causing bleeding or bruising.

This is my top 10 11 list of everyday, bleed inducing things:

Ferocious Fodder:

1.  Fruit - apple skin is one of the most efficient ways of getting a gum bleed. The safest way for me to eat an apple is to cut bite size chunks off with a very sharp knife... Don't worry, I wear Teflon gloves. Bananas can have the same effect if they are a little unripe, which is, of course how I like them.

2.  Puff pastry - the equivalent of eating razor blades, very dangerous to gums, tongue and inside cheeks. Ruins the enjoyment of a good pastry.

3.  Muffins - surprisingly risky - had 18 hours of gum action following a particularly chippy bit of chocolate in a muffin the other day.

4.  Sandwiches - a crusty roll has obvious dangers. Crusty bread equally so. However I have bled from an encounter with the softest fluffiest baps filled with only egg mayonnaise, perhaps it was the cucumber...

Personal Mean Hygiene:

5.  Tooth brushing - most common cause for me of gum and tongue bleeding. I've been told many times by many dentists that brushing more frequently will reduce the overall bleeding tendency - I can tell you I've put this thoroughly to the test and it's nonsense: more brushing = more bleeding - fact. I am still to try the Sonicare toothbrushes that have been recommended by a fellow bleeder - I will let you know how that goes...

6.  Flossing - not something I relish as this is akin to running wire thro mozzarella.

7.  Hair removal - waxing, plucking, epilating, even hair removal creams can cause anyone to bleed or bruise - with a type 3 von Willebrand this can be to very dramatic effect. Legs which turn purple upon waxing may be a little alarming for your beautician. My current preferred method of defuzzment - epilation - even post clotting factor treatment can leave my legs covered in petechiae. My first ever attempt to shave my legs as a naive teenager resulted in a blood soaked kitchen (I know, weird choice) and a cover story about dropping a knife and it impaling my shin - not sure that was ever actually believed!

Household Sore Chores:

8.  Painting - an activity I used to enjoy is now more risky due to a spot of ceiling painting which caused a shoulder bleed. This has weakened my shoulder and it has a tendency to bleed if used to decorate. No really, it does.

9.  Correspondance - writing letters, whilst now an old fashioned activity is also a hazardous one for me. Paper cuts from the writing paper is common and if you've had letters from me they may well have contained at least one of my bloody prints - I'm never gonna get away with murder, I'm far too forensically generous. Licking the envelope slices my tongue into strips. Stamps used to stick to my lips and rip them into bleeding. Owwee. Thank goodness for self adhesiving ones I say.

Medical Maladies:

10.  Plaster removal - luckily I'm not allergic to latex having such an aggressive plaster habit. However removing a plaster is in itself a dangerous job and whilst ripping it off in one smooth, swift motion is ideal from a pain point of view, it is a perfect way to cause post plaster bruising. Nice.

11.  Medic alert - it is ironic that a medic alert bracelet, worn continuously in case of emergency because it just might save my life, causes bruises and burns. If I lean on my hand and the bracelet is in the wrong place it bruises me, this most commonly occurs when I'm injecting clotting factor into that arm. When stirring a hot pan of food the bracelet heats up so quickly I don't notice until it's branding me with "Von Willebrands Disease (Type 3)". I suppose that's one way to avoid having to wear it in future...

Ichabod is itchy ...

... and so, the blinking heck, am I!!  

This time of night is a particularly pleasant time for me.  Every night is the same; though it is worse if I am more tired.  Basically I formicate.  Every night.  And it isn't fun.  It's ... hang on a mo ... that is not what I said ... scrape yourself out of the gutter and pay attention ... formicate, I said formicate.  

Here an itch, there an itch - everywhere an itch itch

Formication, according to the wordly-wise wonder that is Wikipedia, is derived from formica, the Latin word for ant.  Formication is the medical term for a sensation that resembles that of insects crawling on (or under) the skin.  Formication is a well-documented symptom that has numerous possible causes. 

She itches here ... she itches there ...

For me, my formication habit began when I had my interferon treatment for Hepatitis C, back in 1999.  It was one of a glut of delightful side effects which still lingers long after that original year of treatment.  The definition - which I only had from my CFS specialist this last year - is uncannily accurate.  If you will: imagine hundreds of ants crawling just underneath your skin (horror movie stylee).  However, they are not just in one spot.  Imagine those subdermal ants crawling on the top of your right foot, for a couple of seconds, then on the inside of your left ear lobe, then on the back of your right index finger, then across your stomach, then your left shoulder blade, then just under your eyes.  Uncomfortable yet??

The Itchy and Scratchy Ros

This pretty much describes the sensations I get when I'm in bed every night trying to go to sleep.  As you can imagine I'm kind of a whirling dervish underneath the duvet, rubbing here, itching there, eee ooo aaa, can't reach the scratchy little devils!!  And no, there are no bedbugs or other actual nibbly, crawly creatures - it is, quite literally all in my head .. and all over my body.  Nice.  I've got so used to them now that I've affectionately and somewhat derangedly dubbed them my "itchy buggers".

To Itchycoo Park that's where I've been.

What did you do there?

I got high
What did you feel there?
Well I cried
But why the tears there?
I'll tell you why
It's all too beautiful

It's all too annoying

It's all too itchying

It is peculiar that I never really get visitations from the itchy buggers during the day.  I often scratch my face to shreds because I have the sensation of an eyelash or a strand of hair on my skin and no matter how hard I try I can't get rid of it, but that's because there's nothing there.  I think that sensation is probly related, but it is only at night that the formication fun really begins.

You scratch my back, I'll scratch my back and leg and neck and toe...

I've spoken to my GP as to why it is I might be getting formicated and they didn't have many suggestions as to what the cause could be, but they did say that it was a common side effect of drug withdrawal.  Hmmm.  The CFS occupational therapist who took my symptom, one I hardly thought worth mentioning, and gave it a name - told me that it might be liver related but also wondered if it could be caused by something in the blood products I constantly inject.  The former was also the opinion of the Chinese acupuncturist that I saw earlier in the year - she saw the crawling as a sign of a toxic liver.  This made sense to me given the Hep C, the interferon and ribaviron I've had over the years.  However when asking the liver doctors they say my liver results are not too bad and my biopsy 10 years ago showed only mild inflamation.  All good but no suggestions of why I might have this problem or what I could do to solve it.

I got it bad, scratch fever

I'd be interested to know if anyone else with CFS or Hep C has this ant-astic issue.  I'm sure it's related to the treatment or the Hep C but I have no absolute proof or concrete evidence to back this wild claim up.

Well fate can be cruel
Life may be a bitch
But that's not an excuse
For my eleven-year itch

Treatment-wise I am now on a sedative type of drug - Phenegran - to help me sleep and this sometimes keeps the itchiness down to a more tolerable level.  However, having had my dose earlier this evening and having already taken my pain-killers for tonight, the itchy buggers have been fairly active during my writing this post.  Inspiring little blighters.


(Mis-quotes all my own)

Foiblicious

If you know me, you'll be aware that I have a number of foibles, slight peculiarities, idiosyncrasies, anal tendencies, eccentricities.  I believe they are worth celebrating.

This is a list of those that spring to my mind:

• curtains - when they are drawn they need to hang straight - thinking about it, this applies when they are open too.  I think this only applies at home - I've never found myself manhandling another's curtains.
• toilet rolls - need to hang away from the wall and if you find yours has turned around it may be because I visited your smallest room - can't help being hands on with this one.  Why it's preferable to having the roll stroking the wall as it dangles, I don't know.
• singing - you may just have heard me do this ;) - any song on the radio / TV will impregnate my brain and be sung for hours (sometimes, and very annoyingly, days) afterwards.  If I hear a word or phrase that comes from a song, I'll be singing it within minutes, often without even realising what the trigger was.  My work colleagues used to do this on purpose, for fun.  Last weekend it was Friday I'm in Love all weekend following a friend's Facebook status update.
• upside down opening - I have, for as long as I can remember, opened all packaging which has a right side up, up side down.  Malteaser bags, crisp packets, bags of pasta, packets of sanitary towels etc.  I think this stemmed from an early recognition that if a bag of summat had a hole at the top used to hang the item on a display - if opened  the right way up this hole would result in the packet splitting down the side and half the stuff inside flying out.  Solved by opening upside down.  This soon mutated to any and all packets.
• talking to myself - I do this all the time, because I spend a lot of time alone perhap??  Weirdly I catch myself doing it without even realising - usually in the supermarket or wandering down the street.  Then I tell myself off.  Out loud.
• talking to inanimate objects - I talk to the trees, but they do not listen to me.  No really, I do talk to things - vegetables, furniture, plants, doors, taps, bits of my body.  Maybe I enjoy not getting a response.
• sound effects - I provide sound effects.  Why?  No idea.  Didn't even know I did it until a friend at work pointed it out one day.  Then realised I do it all the blooming time.  If a door creaks I'll do a creaky noise.  If driving round a bend I'll emit a skidding sound effect.  If driving a trolley around a corner I'll do the same.  If I see a ball bounce I'll produce a boing.
• talking for things - I not only talk to the animals, but for them as well.  I must have watched too much Johnny Morris as a child because if I see an animal - a cat on a street, a goose in a field, a duck on a river - I talk to them and then I reply for them, with appropriate animal / bird voice.  I can have quite a splendid little conversation this way.  
• talking for babies - I also cannot help but do this for babies too.  If a baby's playing with something I will provide a commentary - what I imagine baby to be thinking.  I guess what they would say when they look at you askance (which is probably because you are having a conversation with yourself).  I can't help myself and enjoy trying to figure out what they might say if only they could.  Probably irritating as hell for the parents.  I think this stems from at the age of 6 wishing I could do the voices for Count Duckula or Mighty Mouse.
• silliness - no explanation needed here, think the foibles above are testament to this.  I am a silly billy and I am not ashamed.
• word play - I like to make new words.  Taking existing words and changing them a little.  For instance Foibilicious.  Can't think of any more at the moment but I know there are squillions.

If you know of others I've omitted, please feel free to comment thus.  I'm sure there are more....

If you'd like to comment a list of your own - that would be fascinating :)

 

CONTAMINATED

Cruel, blood bourne virus

What did they do to deserve you?

Which batches of life saving treatment

Concealed you, left you waiting

To cause your devastation

For years and years and years?

Like characters on a stage

The infected ones play their part

In this real-life tragedy.

Life, death, love, suffering

Is their plot; performance not rehearsed

But delivered with anger and passion.

No producers here; the cast
Of thousands, self-selected, whittled down
To those with energy and drive.
Scene shifters, lighting and stage crew 
Keep this show on the road.
Masking grease paint conceals the hurt.

Already numbed by disease
Each waits to speak their lines.
No first night nerves as they plead
For help to make their lives bearable.
Contamination tortures their minds
As well as their bodies.

Dave calls for justice,
Through letters, emails, talks;
Peter challenges through court;
If his legal aid stops, his case
May be dismissed; already cloaked
In anger, they fight on.

Paul's health brings him close to death,
His chance of life a liver transplant.
Fred waits with him, friendly, supportive,
Although a fellow sufferer, he drives Paul
Ninety miles to hospital.
Life must go on.

Widowed Maureen mourns
Her husband's tragic death,
Remortgages the house for income.
Ros, fatigued and aching from her
Bone-rotting treatment
Waits to find active life again.

Simon speaks of stigma
Suffered by his family.
Cheerfully he continues, with David,
To follow up, research any avenue
Which may open, shed new light 
On this complicated drama.

Their performance fall on deaf ears;
The ever-changing bureaucratic audience
In the best paid seats, listen
Fall asleep, bored by this tangled plot
Of anger and emotion,
Difficulty and hardship.

The players in turn re-think, rehearse,
Soliloquies become entreaties:-
"Won't someone listen, please?
We may be amateurs but
Is our performance not worthy?
Does no-one understand?"

Mouse-Trap like, this show runs and runs.
Never a best seller, the dedicated actors
Replace those dying, as the years
Roll by in agony.
Within a waiting audience a few
Applaud their efforts.

The somnolent bureaucrats slowly wake,
Not altogether ignorant of the facts;
The players wait to hear reaction,
Hoping for a final performance
Of the wrong that can never be righted.
This injustice must be recognised.

And I, like the prompt, sit in the wings
Night after night
Listening to every word,
Waiting expectantly for the final curtain,
The thunderous applause of justice
In recognition of this long running show.




Juliet Batten                   July 2010
Some names have been changed, some are who they are...

Blood Sweat and Tyres 2010

'Blood, Sweat & Tyres’ was started in 2005 and is off-road mountain-biking dedicated to raising money and awareness for 'The Haemophilia Society'. 

Trails are selected to be physically demanding in order to be worthy of sponsorship, but with the objective of giving both an extremely enjoyable and rewarding experience for the riders.

The Haemophilia Society was established in 1950 and is the national charity in the UK of and for people with Haemophilia, von Willebrand's and related bleeding disorders. It has over 4,000 members and a network of 16 local groups throughout the UK. It provides information, advice and support services and advocates; and campaigns to secure the best possible care and treatment.

For more information please visit the official Haemophilia Society web site at:

The UK Haemophilia Society

The details for this year's ride are as follows:

2010 - South Downs Way 

This year BST regular Raj Patel is organising a ride along the South Downs Way - 100 miles from Winchester to Eastbourne over the weekend of 7th & 8th August 2010.

Raj is looking for riders to join him, Mike (another BST regular) and Dan and raise more money for The Haemophilia Society.

Any volunteers??

More details can be found on the Blood Sweat and Tyres website:  

Blood Sweat and Tyres 2010

If you'd like to sponsor the riders the official just giving page can be found here:

JustGiving - South Downs

It's a very worthy cause....

Contaminated Blood Demonstration 30-06-2010

This week I attended the Contaminated Blood demonstration in London.  This is my account of the event:

Karen and I and wheely bags.

Train from Kiddy
pork pie and sandwiches.
Change at Smethick
Disappearing train
What the... where d'it go??
Next one appears
Will we make connection?
Two minutes to spare,
cross platform onto London train.
Phew.
Oh no.

Fatality on the line.

Diversion via Stafford
north to go south.

Educate woman on train
She wishes us luck.
Late arrival.

Tube across London

meet Cheryl
bus to Southfields

meal.

Exhaustion.

Up and out
Sun is bright and we are early.

Good journey in

Meet mum and dad at cafe.

Walk to Trafalgar Square

see ship in a bottle on a plinth.

Seemingly hundreds of people

reporters

cameras

busy organised activity.

Donning t-shirts

erecting banners

distributing placards

and we're off...

Snake way down street

get attention from some

Blatant ignore-ance from others.
Walk, limp, wheel.

Hand out leaflets

explaining our cause.

Meet new campaigners,

catch up with friends,
remember too many now gone.

Congregate outside Downing Street

leave room for people to pass.

Would you like a leaflet?

Mostly taken.

Some don't look us in the eye
and walk on -

silence is violence.

Policeman doesn't move us on,

he has haemophiliac son.

Small delegation to number 10

led by Lord Morris

hand in letters and a wreath

representing those we've lost to contaminated blood.

Photos taken

interviews given.

Back on the street
on to the Houses of Parliament.

Problems getting in.

No t-shirts

No banners

No placards

No leaflets
Not allowed.

Remove t-shirts,

put placards and banners in ring-fenced pen,

leaflets stuffed in bag.

Why-ever is this necessary?

Queue in heat
hot
thirsty
tired.

Through security,

very late for meeting

rush to room 4a.

Lord Morris still speaking,

heads popping in and out

"We have booked this room".
Need us out,
Still ours right now.

"Proportion of those infected
who've since died

greater than that of Black Death."
This is our Red Death. 
And still no justice.

Must leave room

mill around in corridor

try to ascertain plan for the rest of the day.

Arrange to meet MP in central lobby

make way there,

wait.

Lots of us
waiting.

MP comes.

Introduce mum, dad and Karen.

He offers tour,

is this time waster?

Seems not, so we accept.

Through into House of Lords
red, ornate, grandeur,

round to terrace on Thames

back into House of Commons

masses of records
floor to ceiling

past library

round back of speakers chair

gargantuan statues of previous PM's.
Good god!

Maggie quite horrific.

Onwards under Bridge Street

through tunnel, like tube station

I say,

and there it is

MP's own private entrance to tube.

Up and out into Portcullis House,
cost millions to build, apparently.

Tea and business.

Explain our situation

stress how long we've been battling governments

and losing friends.

Show him letters

articles written over the years.

He asks what we actually want,

specifics.

Talk about money

on-going support and lump payments,

input into future treatment decisions,
everything in Lord Morris's Bill.

Will he support EDM?

No.

They are government graffiti.

What will he do??

Stresses his support of our campaign,

will attempt to get written question,

asking government to clarify their position.
I will send him the bill and David Cameron's letter.

Mum's a cynic.
Understandably.
I feel quietly optimistic.
I think...

We leave.
Search out others.
Share experiences,
pints,
support.


So much more to do.