Funny Blood

Funny Blood the book - how to get yours ...

2012-01-22T18:06:00.003Z

If you would like a copy of my mum's shiny new book Funny Blood - which is about adopting me as a baby, then finding out I had a severe bleeding disorder and the fun that ensued bringing me up - it costs £10.50 plus £2.50 postage (within the UK) if required. Multiple copies will require multiple postage though we may well do you a deal If you ask.

Funny Blood cannot be had from all good retailers I'm afraid as mum has self published. Until of course we hit the best seller list, which may take a while as we've only had 500 copies printed!

You can either send your cheque for the total amount, made out to Juliet Batten, to me:
35 Shrubbery Street,
Kidderminster,
DY10 2QZ
UK
or mum:
28 Franche Road,
Wolverley,
Kidderminster,
DY11 5TP
UK
If you do this please include your name, address and the number of copies you require.

Or if you want to send us a BACS payment please send us an email to roshasfunnyblood@gmail.com with your name, address and the number of copies you'd like and I'll send you the bank account details.

We will then post, or personally deliver if you're local enough, your book.

I will be putting it on Amazon but because mum's funded this herself I'd encourage you to buy direct from us because that way she gets a wee bit more from each book to help pay for the cost of producing it. We might just up the price a touch on Amazon to compensate, not sure yet. I'm dead proud of her I am, cos it's the first book she's ever written and she's been working on it for 8 years :D

Once you've read it we'd really appreciate your feedback.

One last thing - it is about me so I understand if that puts you right off ;)

Meeting with Anne Milton, Health Minister, October 24th

2011-11-14T20:47:00.000Z

I recently attended a meeting with Anne Milton, Health Minister, on Monday October 24th at the Department of Health in London. My MP, Mark Garnier, managed to get me on the list of attendees. I was keen to attend to tell her personally how I felt about her announcement in January of this year which I believed failed the majority of the bleeding disorder community who had been affected by contaminated NHS blood products.

This was our introduction to Ms Milton and her associates:

Thank you very much for seeing us all today. We would much prefer not to take up your time, but following your review and announcement regarding contaminated blood products in January 2011 we felt compelled to request this meeting, to urge you to re-visit the decisions made. Specifically the one to retain the separation of the Hepatitis C infected community into two groups - stage 1 and 2 – when there is so much evidence that HCV is far more than liver disease. People within the Stage 1 group are ill, but not through liver damage.

When Andrew Lansley (MP) introduced the review findings he said that he hoped they would remove anomalies in the existing support system and that they could bring us some comfort, consolation and maybe even closure. We believe that none of these objectives were met. Your decision was that continuous financial support was only required by 20% of our infected community, leaving the majority still suffering, struggling and still fighting for help. Maintaining defined stages of illness for Hepatitis C has increased not removed anomalies. We do not think the levels of support offered are adequate but today we are requesting the immediate ending of the two tier system.

We believe that this is a fundamentally flawed decision and that an infected person deserves and should receive help because they were infected by NHS treatment, not if they meet highly specific, difficult to prove, levels of illness. We do not believe the conditional and means tested Fund which is being offered is a step forward, rather it is an echo of the system criticised by this government and is vastly inadequate given the needs of those within the stage 1 group.

Some of us belong to the various contaminated blood campaign groups. I would like to stress that we are here today as individuals speaking only on behalf of ourselves but working for the benefit of all those who have been marginalised by your actions. We hope to illustrate this by our own personal testimonies and the information included in our pack.

I will put the evidence we gave her on here, in post to follow...

Your Blood Supplement - Part 3

2011-09-11T07:56:00.001Z

This is the third and final part of the piece I submitted to the Independent newspaper for their Your Blood Supplement. Only a tiny bit was included in the final piece and you can see it here:

Your Blood Supplement

Your Blood - Part 3

I found out just before I went to university that I had contracted Hepatitis C through contaminated blood products. Not really understanding what it meant at that stage I tried to forget about it and enjoy my university life.

I spent 6 weeks after university travelling around Chile with my best friend and though it was difficult to carry my clotting factor everywhere, when I had a massive nosebleed because of the altitude in the Andes it came in very handy.

Since then I have spent a lot of time dealing with the Hepatitis C, having two lots of treatment for it which made me very ill, and which I’m still suffering the after effects of 10 years later. The treatment did eradicate the Hepatitis, for which I’m very grateful, but I have been left with long term chronic fatigue which has had a massive impact on my life – much more so than my bleeding disorder. I’ve always said I can live well with a severe bleeding disorder, and I do day to day, but having a virus given to me and this taking away my ability to work and to live normally and have children is devastating.

I’m now 37 and bleeding-wise I am pretty stable. I’m on high dose hormone pills to control my periods still, which suits me. The alternatives for someone with my condition would be an endometrial ablation which has success in many cases, or a hysterectomy which used to be the treatment offered to young ladies with von Willebrands but today is generally a last resort. I have frequent gum bleeds which can be apropos of nothing or which can be caused by a crisp, or an apple, or a banana even. My nose bleeds are less frequent and I only have them when I have a cold or when I fly anywhere. I still get occasional joint and muscle bleeds and bad bruising at the drop of a hat. I inject myself anywhere from once a fortnight to twice a day, depending on the nature of my bleed. My attitude is that I get on with things and don’t worry because my mum does that for me ;)

I am lucky in that my condition was diagnosed when I was very young and was well managed whilst I was growing up. If I had not been diagnosed I’m sure that my life would have been extremely difficult and potentially hazardous. The problem that we still face is that von Willebrand’s disease is not a recognised and well known condition, in the medical profession as well as the public – even though in its mild form it affects 1% of the population. Many of those 1% are undiagnosed and may just think that easily bruising and nosebleeds run in their family. In fact diagnosis can lead to careful long term monitoring, access to medications that can make life easier and proper management of any surgery that may be required. The knowledge of those involved in the care of people with this condition is increasing all the time.

For the one in a million like me who have a severe form of the condition, nowadays the treatment is usually prophylactic – that means regular preventative injections of clotting factor. This is instead of injections after the event and can prevent bleeding episodes or tone them down, and will prevent joint damage such as the arthritis I have in my ankles. The off-putting thing about this at the moment is that our clotting factor is still manufactured from heat treated human blood products and therefore there is a level of risk as such. Whilst haemophiliacs are mainly treated by manufactured, synthetic (recombinant) blood products, because there are smaller numbers of us von Willebrands the development of recombinant products for us has been slower. I believe however we are getting there and for me this will be a great step forward in the next few years. I also read with interest the recent research that is being done on gene therapy and the hope that one day this could provide a complete cure for a genetic blood condition like mine.

Your Blood Supplement - Part 2

2011-09-01T20:57:00.003Z

This is the second part of the information I sent to the Independent for their Your Blood supplement.

It is being published tomorrow Friday 2 September - I'll put the link on here in due course.

Your Blood - Part 2

The next major challenge was, unsurprisingly, when my periods started. This was a moment my mum had dreaded and it lived up to her expectations. I bled for weeks each time with very little break in between periods. I was treated often – by now the treatment was injections of clotting factor manufactured from many blood donations – and also spent a good deal of time as an in-patient having blood transfusions. My teenage years were interesting to say the least.

I was referred to an enthusiastic gynaecologist at the age of around 14 to see if my periods were so bad because of a gynae problem, but no, it was just my bleeding disorder. He did however experiment with the hormone pill until we found a high enough dose to control the bleeding in some way that meant I didn’t have to go to hospital multiple times every period and could try and resume a normal teenage life.

My other issue during this time was that I had a number of spontaneous internal bleeds that required investigation and aggressive treatment and meant a good deal more time in hospital and off school. These were bleeds that were not caused by anything specific and that I only knew about because of the extreme pain and swelling. However I managed still to get both my GCSEs and my A levels and went off to university feeling really grown up.

By this time I had taught myself how to self administer the injections. This changed my life totally because we no longer needed to be within a safe distance of a hospital but I could take my treatment with me and go anywhere – I really felt like the world was my oyster!

To be continued ...

Your Blood Supplement

2011-08-24T11:47:00.002Z

Recently I was asked to write about having von Willebrand's disorder for a supplement called Your Blood which is soon to come out with an issue of The Independent. I was asked to write a paragraph but being me that was like trying to insert an elephant into a letter box.

I am going to publish on my blog what I wrote, as it's a synopsis of my life with funny blood and I've not really put anything like that on here so far. The supplement that is being published contains a mere snippet as they only had a tiny space to fill. On here I'll break it down into sections.

Your Blood - Part 1

When my mum and dad adopted me at the age of 6 weeks old in 1974, they thought they had been given a perfect little girl. At the age of 6 months when mum was at the GPs and mentioned that I had a bruise, she expected the doctor to say, oh yes that’s quite normal. She did not expect what actually happened next.

I was referred to the hospital to have blood tests done. Mum sat on a stool at the hospital with me on her knee while they pricked my ear with a needle and watched it bleed. After over an hour with me crying and mum worrying, they told her the fact it had not stopped bleeding was abnormal and that I would need more tests.

Mum was told by the Royal Manchester Children’s Hospital (RMCH) that her daughter had severe von Willebrand’s disease later that year. The next few years were particularly tricky. Learning to crawl, to walk and cutting then losing tiny teeth were all massive challenges. Mum and dad decided early on not to wrap me in cotton wool – though they were tempted, and some padding fashioned from socks with their toes cut off, filled with foam rubber, were popped over my knees when I began to crawl.

As a severe bleeder every time I bumped, tripped over or cut myself we had the pleasure of a trip to the hospital over 20 miles away. This could be many times a week. When I bled it wasn’t necessarily heavy but it oozed for hours without stopping until I had treatment. Treatment in the 70s consisted of cryo-precipitate, which had to be defrosted once we arrived at the hospital, and then loaded up into a 50ml syringe or into bags that were infused via one of my veins.

I remember a lot of my childhood as being spent in hospital and the nurses became part of our family and I felt at home there. I bruised very easily and had frequent nosebleeds and gum bleeds, all of which meant a trip to RMCH. I also had problems with internal bleeding into my joints – these were very painful and more disruptive for me as I had to rest until they got better. I also had to be pushed to school in a big blue stripy buggy which as a girl of 6 or 7 was not much fun. Generally though I lived my life as normally as possible given the amount of time I was on my way to, or from, or at hospital.

To be continued...

I beg your pudding?

2011-07-20T11:38:00.000Z

I used to be a good listener
Or at least I thought I was
You, dear friends,
Might tell me different
And I wouldn't mind :)

I tried to be a good listener
Attentive, empathetic, sympathetic
Remembering details
Recalling them for future conversations
Enjoying sharing such a simple pleasure

Now ...
Now it's now so much fun
Not so rewarding
Not so participatory
The intention is still there
I intend to listen
To converse
To share and enjoy
But I'm disabled
Un able to
I'm limited
By my CFS

I can listen for only so long
Can focus for only so long
And so long ain't that long
Before I drift away
Before my mind wanders off
Like a distracted chicken
Pecking at the corners of my concentration

My eyes glaze
My ears glue
I can see you
But you're fuzzy at the edges
I can hear you
But I'm fuzzy in the head
It doesn't go in
Just bounces off the fuzz
Into nothingness and nowhere
I nod
I murmur agreement
You may not even notice

But the one thing I am aware of
Is that I'm gone
I'm not really with you
I'm inside
Looking out through fogged up glass
Desperately wanting to listen
To hear
To share
I wish I was taking it in
But I'm not there

For a limited time only...

2011-07-13T10:55:00.001Z

This is me practising for my audition to join the choir Voices Unlimited. I'm putting it on here for a short time so my friends can see it, as it wouldn't upload to Facebook.

Too late - you missed it!

Apologies if I'm boring you for posting yet another video - inspiration of the written kind is evading me at present.

Good news is ... I got in - woopeeeee :)

Get Well From ME

2011-06-27T15:15:00.001Z

I discovered these videos the other day through a Facebook friend and fellow CFS sufferer. The maker and narrator of the videos, Giles Meehan, is a recovered ME patient. That makes him sound like an alcoholic - sorry Giles. The point is he has got better and he has developed a website and a number of really informative videos to raise awareness about this often misunderstood, far more common than you might think, and devastating illness.

I found this really easy to follow as he incorporates subtitles into the video to back up what he is saying. It is an excellent introduction to the condition of ME / CFS and makes it clear how complex a disorder this is in terms that someone struggling to understand will comprehend.

If you check out his website:

Get Well From ME
you can read the entire transcript for this and see the rest in his excellent series of videos. However, I also intend to publish them on here in time.

Hope that you find this informative - for me it was a case of total recognition.

xxx

I Bruise Easily

2011-06-06T14:17:00.000Z

My song. Sing along if you like, I will be.

Always loved it:

ME / CFS International Awareness Day 2011

2011-05-12T18:22:00.000Z

Today, Thursday 12 May, is International Awareness Day for ME / CFS and Fibromyalgia.

Some of those raising awareness suggested wearing purple so I did that today. Like many other not so good days I spent the day in my pyjamas and dressing gown. My purple dressing gown.

I thought today well worthy of a blog post. I've not written anything for a couple of months. There are many reasons for that, from lack of inspiration to laziness but the most apt today is the reality of living with multiple invisible health conditions and the physical and mental toll they take.

Did you notice, in the photo of my dressing gown basking in the sun above, the little purple flower?

It's a weed actually, which has pushed its way determinedly up through the patio. I won't pull it up because I admire the little fellow. He's got spirit and he puts on a bright front to hide the pestilent weed inside.

When I was a kid with only one invisible disorder - type 3 Von Willebrands, a severe bleeding disorder, I insisted on working and living through bleeding challenges. Of course when I say invisible I'm not meaning the times when my body was covered in purple and yellow bruises, nor when I had to go to school in a giant blue and white striped buggy at the age of 6 with ankle bleeds, but merely that the illness is within and when looking at me as a child no-one would've said - oh yes, there goes a severe bleeder. My point is, like most bleeders, I tried not to let it stop me or limit how I led my life. I studied when I was in hospital having blood transfusions, I danced when on crutches having had an arthroscopy, I worked when I was bleeding from blood poisoning until I could barely stand from losing so much blood. My attitude was always I will do it! And most of the time, with the help and encouragement of friends and family, I did.

Whizzing time travel style to now and I'm faced with a plethora of invisible illnesses. A myriad of covert maladies. I need a group noun all of a sudden ... an affliction? A challenge? An infection?

My Von Willebrand's resulted in Hepatitis C from my treatment, this resulted in CFS from either the HCV treatment or the virus itself, this has expanded over the years to include formication, fibromyalgia and from time to time depression.

I would describe living with all these issues together like being in enforced limbo.

Waiting. Waiting to feel better, waiting to move on with your life, waiting to be able to do what you want to do rather than just what you're able to, waiting to not have to manage everything so as not to make yourself worse, waiting to return to "normal".

And it's hard. It's hard not to retreat from all those who when they say - you don't look ill - mean nothing but, gosh you look well for someone poorly, in an well-meaning kind of way. It's hard not to scream when someone asks you if you're feeling better when you haven't felt "better" for over 5 years now.

Believe me I actually feel pretty good most of the time - pleased to be alive, pleased not to be more sick, pleased to see the cherry blossom or manage a little bluebell walk, pleased to listen to birdsong or church bells from my bed, pleased to sing at the top of my voice in the shower or the kitchen or the garden.

And I believe it is totally possible for me to get better from at least one of my illnesses. Not the Von Willebrands. That's with me for life and as an old friend I'd be sad to lose it. The Hepatitis C is also theoretically gone, having kicked its arse with interferon and ribaviron, and I'm praying that truly is the case. The CFS, fibromyalgia and formication. They're just visitors, their time is limited. Admittedly this isn't a cure, it's a catalyst ... but I'm determined, you see, and strong.

Just like that little purple flower.

- Posted using BlogPress from my fancy pants phone

Betrayal and Lies -- Please Share

2011-03-23T14:29:00.000Z

This video has been put together by a fellow contaminated blood campaigner and friend of mine, Richard. It contains contributions from a number of friends, many of whom are tragically no longer with us.

It is disturbing but essential viewing if you are interested in the unnecessary infection of thousands of bleeders like me, through our NHS treatment.

Please take the time to watch and share it where possible.

Thank you x

And the germs keep coming, coming ...

2011-03-22T17:34:00.003Z

On the second night of lurgy,

my bad bug gave to me:

12 tatty tissues

11 sniffs a snivelling

10 turns a tossing

9 sudden sneezes

8 soothers sucked

7 toilet trips

6 chapters read

5 vay pour ruuuubs

4 drinks of water

3 sleeping tablets

2 lem sips

And a damn near non-existent night's sleeeeeep!

- Posted using BlogPress from my iPhone

There's something about you, speeding through my veins until we hit the ground

2011-02-14T21:51:00.008Z

Been a bit bleurgh lately and my blog's been somewhat contaminated with blood issues.

Let's lighten the duck up with a cracking song:

Happy Valentines Day to anyone who bobs by xxx

Letter to the Health Minister regarding the Contaminated Blood Announcement

2011-01-18T16:33:00.000Z

I am writing following your announcement to the House of Commons on Monday 10 January regarding HIV and Hepatitis C contaminated blood and blood products.

I appreciated your apology on behalf of this administration and those who have failed to address this - the greatest tragedy of modern health care. I trusted that when you said you were trying to remove anomalies in the current support arrangements, you meant it. I admired your hope that whilst your announcement could not remove the pain and distress that we as individuals and families have suffered over the years, that the measures you announced could bring us some comfort, some consolation, and maybe even some closure.

I am really sorry to say that upon listening to your announcement I was bitterly disappointed. Not only did it not offer comfort, consolation or closure but it was rather like someone poking me unmercifully in a particularly painful bruise. We bleeders have had a number of let-downs over the years but I have never been more angered and disillusioned in my life.

The results of the review and the ensuing support you have proposed will not offer comprehensive support to all those affected by HIV and Hepatitis C contaminated blood, nor will it double payments to £50,000 for the 4,670 haemophiliacs affected by the HIV and HCV contaminated blood products as some media reports have suggested.

Some points based on my own experience may help you to understand why I make the statement above. I have a severe bleeding disorder, von Willebrand’s disease. I received blood products from the NHS from the age of six months old. I have been infected with Hepatitis C and exposed to vCJD. In terms of what your announcement will provide me:

· Free prescriptions – which my two cousins who have diabetes received the instant they were diagnosed, why do haemophiliacs and other bleeders not already receive this concession?

· Free counselling – I recently underwent counselling from my GPs. I waited 4.5 months for 6 sessions, at the end of which the counsellor expressed his awe at my inspirational manner in which I coped with everything that had happened to me and said he thought I didn’t need any more sessions. We had barely stroked the surface. I would really appreciate the support a good counsellor could give but would benefit from in-depth long term support. You are providing 6000 hours counselling over the next three years. This amounts to just under one and a half hours per person with infections caused by blood products or their widows / widowers. I do not consider this to be a comprehensive solution. Why impose such a limit?

· Access to a discretionary fund – I have had two courses of treatment for Hepatitis C. Both of these left me extremely ill and unable to work for the duration of the treatment and many months afterwards. Since the second course of treatment I have been left with chronic fatigue which has taken away my ability to work and has been directly linked to the Hepatitis C. I have ‘cleared’ the virus so I guess in the opinion of your medical panel my quality of life is greatly improved. However I have many symptoms that suggest my liver is not healthy and my quality of life is greatly compromised and my future uncertain. The idea that for any financial need I have to come begging to get even a modicum of help is not good enough. Will this fund replace my lost earnings? Will it compensate for not being able to get a mortgage or being unable to get sickness insurances? Will it pay for someone to clean and help with my daily needs so that my mother doesn’t have to anymore? Will it compensate for the fact that my husband and I are unable to have children due to my ill health or that some nights I cannot cook his tea or hold a conversation by the time he comes home? I would like to know the remit for this discretionary funding as soon as possible.

What your scheme does offer is an increase in the second stage Skipton Fund payment of £25,000 and annual ex gratia payments of £12,800 per annum. This is by no means the levels of payment that we were hoping for, but might have been seen as well intended, if they applied to all the 4,672 of us affected by contaminated blood products. However, the numbers currently meeting that stage two Skipton Fund criteria are approximately 15% of our community. That leaves roughly 3,800 haemophiliacs or those with von Willebrand’s disorder with the provisions outlined above, or in the case of widows and families of the deceased – nothing.

I would like to also point out a number of other inadequacies that your new scheme will put in place.

· You are removing the current anomaly which has meant widows of anyone dying from Hepatitis C before August 2003 would get nothing. This is long overdue. In its place you are providing a window of two months – until the end of March – for them to apply for the stage 1 and 2 Skipton Fund payments. Why is it necessary to have a cut off date at all? Surely if someone is eligible it doesn’t matter when they apply? Or is this an attempt to limit the number of applications and therefore the cost? You are asking the widows affected to access their partner / husband’s medical notes, wade through them to see if he is eligible (a traumatic task for any of them) and find a consultant willing to sign off on their stage two application. By the end of March 2011 this will be nigh on impossible.

· You are providing support to those who meet stage 2 of the Skipton Fund criteria. This immediately divides the infected community to those infected and suffering, and those dying. Not offering annual payments until someone has developed liver cirrhosis or cancer seems to me a very fiscal decision as they by nature then have a severely limited life expectancy. I presume those annual payments cease once the person dies?

· When HIV support was announced, whilst it was a flawed scheme, it at least paid out to all those infected, a decision you have chosen not to take for HCV infected. I know when those payments were made, the prognosis for HIV infectees was bleak. Nowadays the treatments are such that many with HIV are relatively healthy and do have some quality of life. However, whilst your report acknowledges that people infected by chronic Hepatitis C – that’s 4670 of the bleeding community – suffer a demonstrable loss in quality of life, at least as great as those with HIV, your lack of on-going and non-discretionary support does not back this up.

· The proportion of our affected community that will receive the ex gratia payments is roughly 15%. I do not consider this to be comprehensive or adequate and how you could think this would offer comfort to many, is beyond me.

· I believe the Stage 2 criteria that once met entitles those affected to an extra £25,000 lump sum and annual support of £12,800 to be flawed. I am aware of some cases where haemophiliacs have been certified by their doctors as meeting these criteria when they do not. I do not begrudge my friends to whom this applies, I am pleased for them as they no doubt deserve the help. But whilst this appears to indicate the support of the doctor for the patient, it does make this method of classifying need unsound.

· For some reason the scheme only applies to England and you had not spoken to the equivalent ministers in the devolved administrations prior to your announcement to make them aware of your plans. You say it is up to them when and if they administer the same arrangements. I am urging Wales, Scotland and Northern Ireland to reject this minimalistic approach and put in place something that is actually comprehensive and does meet the needs of their citizens who are NHS infected patients.

It appears to me that whilst saying the right things, your actions have entirely failed to back this up and in fact only succeeded in doing the minimum for the minority. You asserted a number of times that this was not due to cost but how else can one view these measures?

For those of us with Hepatitis C it seems from your announcement, not to matter that we were infected until we meet this deficient criteria at a potentially life threatening stage of our illness. Even then what we will be offered will be too little to be of much use and at a time which is too late. That’s approximately 4000 of us who have had our lives shattered by contaminated blood products – unable to work, unable to get mortgages, unable to obtain life and travel insurances and unable to have children. I’m not talking about a few exceptions within that 4000, I’m talking about most of us. It seems from your discussions with patients and patient groups that you have not taken this on board but have instead taken the word of medical specialists who are not living with the condition and all the difficulties that entails.

I acknowledge that those from the 4000 who met the Skipton Fund Stage 1 criteria did get the first payment of £20,000 but that was over ten years ago now and we have had no help since.

I would also like to take issue with your insistence that the Republic of Ireland paid out compensation because they accepted liability and the case here in the UK is different. Were you not aware of the High Court case last year in which the honourable Mr Justice Holman ruled that the Irish paid out on compassionate grounds, with no acceptance of liability? Would you please explain how you think the High Court ruling does not apply?

Given that your aforementioned statement is flawed I would like to revisit the argument used by Anne Milton for not adopting the Irish levels of ex gratia payment which were based on your estimate that the cost would be £3.5 billion. From the estimation I received from Anne Milton:

· You used the figure of around 4700 infected with HIV and / or Hepatitis C from Lord Archer’s report.

· You made an assumption that the Republic of Ireland (RoI) infected individuals received an average of £750,000. This was based on informal discussions with RoI colleagues which indicated that payments ranged between £500,000 and £1 million.

· Your estimation therefore was a calculation based on the estimated number of infectees 4,700 multiplied by the payout in RoI of £750,000, which equated to £3.525 billion – and you stated that this wouldn’t include anything for carers or dependents.

My interpretation of this estimate was that this would mean you awarding £750,000 to the total number of those infected by contaminated blood products. It would also include payments of £750,000 to widows or families of those within the 4,700 who have died. That would indeed be a one off £3.525 billion cost but would, in contrast to your statement, have included carers and dependents. Our community had suggested that this could have been spread over three or more years to spread the cost in these difficult times.

We campaigners do persist however, in our assertion that cost savings were a causal factor back in the 70s and 80s for this hideous tragedy occurring. And therefore that citing this argument now after 20 years of government inaction is adding insult to injury.

You may ask what I would consider a meaningful level of support - I would suggest a reasonable and comprehensive support arrangement to be:

· A lump sum ex gratia payment made on moral grounds to all patients infected by contaminated blood products or their widows / families (4,672 people) of £300,000 – this payment could be made over three years and my total estimation of cost would be £1.4 billion. Or £467,200,000 per annum for three years.

· An annual ex gratia index linked payment made on moral grounds to all patients infected by contaminated blood products, to be paid whilst they are still alive (est. 2600 people) I suggest the median between the average annual wage and the minimum annual wage - £18,500 per person infected. My estimation of cost per annum would be £48.1 million but this figure would decrease in line with deaths.

· The total cost for my scheme would be £515.3 million per annum for the first three years and then £48.1 million decreasing from then on. You would subtract from this the current cost of the HIV annual payments, which this scheme would replace.

· In order for the costs to amount to your estimated £3.5 billion this scheme would need to run for 43 years.

This illustration is my own and does not represent the views of anyone else. Whilst I wouldn’t claim that this would bring comfort or consolation to any of those infected because it is only money and I’m sure it would be far from closure for some, I do think that it could at least be considered compassionate and constructive support that acknowledges and respects the suffering of those harmed in this tragic way.

In composing this letter I have had to find energy where there is little, coherence where there is often confusion, fight when I desire peace and action when my body cries out to rest. The delay in sending reflects the mental and emotional effort writing this letter has demanded and I do hope you reflect on that when composing, or not, your reply.

Health permitting I would be willing to discuss any of this further with you and your department as we continue to work towards a just and appropriate solution.

Sent today to Andrew Lansley Health Minister, David Cameron Prime Minister, Nick Clegg Deputy Prime Minister, Mark Garnier my MP, Ann Milton MP, Diane Abbott MP, Geoffrey Robinson MP, Philip Lee MP, Chris James CEO The Haemophilia Society. Not holding my breath for replies...

Government Announce Results of their Contaminated Blood Review

2011-01-10T21:02:00.000Z

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.

Contaminated Blood House of Commons Debate - 14.10.10

2010-10-18T15:07:00.002Z

Around 100 of us crowded into the public gallery in the House of Commons last Thursday to hear a historic back bench debate on contaminated blood products. Haemophiliacs and von Willebrands, infected and affected, wives and husbands, families of those too sick to be there and widows and children of those who have died.

We had come to London with a sense of anticipation, a sense of hope that after over 20 years of campaigning and the loss of 1974 lives, we were finally being met by a government who stood for fairness. A government who had indicated from the PM down that they wanted to help us to bring closure to the victims, of what has been described as the "worst treatment disaster in the history of the NHS" by Lord Robert Winston.

It started with a worrying turn of events. The government tried to amend the original debate motion. Not to change a couple of words within it, but to re-write it, bar the first three words "That this house...". The government wanted to take out the acknowledgement of past failures and limited response so far to the tragedy, wanted to take out the proposal to implement Lord Archer's inquiry recommendations; even wanted to remove the apology to the survivors, their families and the bereaved. In its place their amendment merely recognised the [inadequate] recompense that had been provided by previous administrations, estimated the cost of implementing the Archer recommendations as being £3 billion, pledged to review some of those recommendations and deeply regretted that many people were infected by contaminated blood products.

We were shocked and dismayed by this attempt to wreck our motion. However the speaker ruled that as this was a back bench debate the original motion should not be amended by front benchers and that our debate would go on as it was.

Hooray we thought. There followed three hours of passionate, personal and moving 5 minute statements from 24 MPs, all of whom had put in to speak at the debate. The support and understanding we had from MPs of all parties was amazing. There was no arguing over the basic facts about what happened, no dispute that here we had a terrible medical scandal that resulted in a human catastrophe and great need. There was no argument about the fact that a proper financial settlement and hopefully an apology was required urgently. I say urgently because, as was pointed out by one MP people continue to die at the rate of one per week. We don't have time to hang around whilst politicians play games.

MPs paid tribute to members of our community who have died and to those who are still waiting and dying. Whilst tears were shed in the gallery I was horrified to see two front bench MPs talking and laughing as Owen Smith spoke of Leigh Sugar, a haemophiliac from Wales who died from Hepatitis C earlier this year. Where was the respect there?

It was debated as to why we had referred to the scheme in the Republic of Ireland, as this was felt to be too generous for the government to commit to. It was said more than once during the debate that this was put into the motion because it was what the campaigners had wanted. To an extent this is true, but that is because it was the bottom line for compensation that was cited by Lord Archer in his private inquiry report - a report largely ignored by government and one that the judicial review earlier this year compelled them to revisit.

What the victims of this tragedy want is a settlement that is fair and adequate - a settlement that treats this group with decency and respect and ensures that what remains of our ruined lives is spent at least financially secure. Ireland's settlement which was implemented in 1996, and is still being honoured despite their financial difficulties, is one that is considered appropriate for the nature of the difficulties victims face.

As one of our campaigners recently said:

'You can't give us back our health, but you can give us back our dignity'.

The greatest despair though, came with the government's apparent inability to work out simple maths. The question was how did the government arrive at the figure of £3 billion that was in their amendment, and that was their estimated cost of putting in place a similar compensation scheme. The calculations were apparently accurate but were not able to be produced during the debate. We are still waiting to see them. We believe the costs to be far lower.

We are well aware as a community that the timing on this is far from ideal however it is important to note that the reason we were infected by these devastating viruses was not least because the government diverted money away from developing self-sufficiency within the UK blood products production. Money was not made available then, over thirty years ago and on many occasions since then when finances were there, administration after administration has ducked responsibility. We haven't just turned up wanting a hand out. For years successive governments have ignored the issue. It's not about party politics, it's about doing the right thing and it's about time that the victims of this disaster are given what they deserve - justice.

This was all acknowledged at the debate and the need to act now, in the name of justice and moral responsibility, was stressed time and again.

However the vote was lost. Why was this? Because the government had produced a three line whip. This compelled over 200 MPs who had not necessarily even attended the debate to come and vote against it when the bell rang. It also meant that my own MP spoke passionately for us, but voted against us.

We appreciate that times are tight and that a cost in excess of £3 billion at this time of comprehensive spending reviews and cuts may be seen as irresponsible. However what about getting your sums right before trying to write us off?

We are not a greedy, compensation grabbing bunch of individuals - we are genuinely sick, dying, unable to contribute to society the way we could and to look after our families the way we want, because we received contaminated blood products from the NHS. All we want is to not have to fight for justice anymore and to have our losses recognised. It wasn't right then, it isn't right now and we won't be going anywhere.

What we came away with is the promise to review the situation by Christmas. The present government have the opportunity to put this right and they need to know that we will never give up.

Fairness, Mr Cameron? Mr Clegg? Let's see some at last.

HCV and Me - An Affair To Forget

2010-09-17T10:45:00.001Z

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

2010-09-10T13:34:00.000Z

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 ...

2010-08-27T07:11:00.012Z

... 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

2010-08-05T13:51:00.003Z

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

2010-07-27T19:19:00.007Z

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

2010-07-19T16:27:00.003Z

'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

2010-07-05T15:22:00.019Z

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.

You know what they say...

2010-06-29T08:08:00.000Z

...

Cheer Up Love

xxx

Joking apart ...

2010-06-18T13:22:00.002Z

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 ...

I Am In Pain - so there!

2010-06-15T15:12:00.002Z

I have had some good news today.

Well, not exactly good news but I'm pleased nonetheless.

I was referred for an M.R.I. on my ankle last time I saw my haemophilia specialist. This may sound extreme but other than a cursory play with my foot whenever I saw him, and sometimes not even that, I had begun to feel that my ankle was not getting the attention it deserved.

As a bleeder with a tendancy for joint bleeds, I felt that a wiggle of the joint and an "Oh that doesn't feel too bad - you've got a pretty good range of movement in that joint" wasn't quite good enough.

I am lucky enough to only have one really problematic joint but my scrawny little ankle clicks, grinds and hurts in such a way it would make a torturer proud. It has kept me awake on numerous occasions, such that if I'd had a hacksaw under my pillow I'd have been inclined to hack off my own foot - seriously, I would've, had it not been for the likelihood of a monster haemorrhage of course. It often 'disappears'. Surely, you query, that's the effect I was after? Nope. When my ankle 'disappears' as I describe it, it becomes in an instant so weak it can no longer support me, it suddenly hurts like someone has shot a bullet right through it, and I fall over - if I don't catch myself first. Oh, and I usually shriek. And I'm not prone to that.

Yup, doc, it's not too bad.

According to the new GIGTB leaflet produced by the Haemophilia society, the content of which I believe has been taken from the national service spec for haemophilia care (please do correct me if I've got that wrong), as a severe bleeder:

"You should also be offered an assessment
by a specialist orthopaedic surgeon or
rheumatologist at least once a year to
monitor joint and muscle problems and
identify the need for surgical intervention."

This is not a service I have ever had whilst under any comprehensive care centre. And I'm 36 you know.

Maybe it's just an ideal rather than a reality - I note the use of the word "should". Maybe I just didn't complain enough about the pain I was in. I believe that most bleeders (yes, men and women) have very high pain thresholds, otherwise we'd be in pieces all the time and you'd never hear the end of it. I also am not the kind of person who complains - at least I don't think I am. I will generally only bring something up if it is a real problem but if I'm then told - oh no, this seems fine, I have a tendency to put up and shut up. Perhaps I should've pushed for further investigation earlier but to be fair I trusted the doctor -haha, hahahahaa, god you think I'd have learned by now - and was unaware what care should have been available to me. We've never had a physio attached to our Comprehensive Care Centre and I've never seen the national service specification or the NICE guidelines.

Anyhow, during my last visit my haemophilia specialist said, as he held my right ankle in his hand,

"Have you had an M.R.I. done on it recently?"

One jaw bleed later, I said,

"...um, I've never had one".

And so I was referred.

To Selly Oak I went for a half hour session in a tubular machine that was either having the time of its life or heading for a severe mechanical breakdown. I quite enjoyed it. It was kind of musical, in a tone deaf tuneless kind of way. My favourite part was when the operator popped some headphones over my ears and said - "That's for the music". They remained silent until she said through them, 30 minutes later,

"All done."

Two weeks later I've just phoned the hospital to see if they've got the results, and yes, they're in....

*Lights dimmed*

*Drum roll*

*Gratuitous lengthy relentless seemingly unending dramatic paaaaaaauuuuuse*

"Congratulations Mrs Cooper, you have won severe arthropathy of the right side of your ankle joint!!"

Have to admit my nurse didn't quite put it like that, but the good news was no tendon damage and the left side of my ankle didn't look too bad.

The fact that the right side is so damaged makes me feel better - is that weird?? It basically means that all this pain and discomfort and weakness and crunching is not all in my head. Why I would think it was, god knows, but hey it ain't, so that's good. It explains things for me and means that finally summat can be done to make it better - or at least perhaps a tad less impactive on my life.

I await the next step, with one good and one validated weak ankle ...

You were only waiting for an angel from above

2010-05-27T16:40:00.006Z

The sun was out and so were we.
The conversation meandered past my ears.
Amidst the children's shouts arose another sound.
Gradually we stopped and listened.
As we silenced, he crescendo-ed.
We sought him out and his voice drew the eye.

Perched on the conifer top.
Basking his bright beak in the sun.
He sang from the depth of his tiny body.
Performing his aria for our audience.
His voice leapt from his yellow beak
and took flight towards our ears.

It soared and dropped
And twisted fro and to.
Encompassing his passion and joy.
He knew every note on every stave.
He shared them all with us.
We were in awe. It was beautiful.

The next day the black flutter caught my eye.
I went to see what I thought I knew.
He lay quiet and still in the road.
Eyes open yet opaque, beak bright but closed.
It may have been the loss of a friend
but I cried for the little soul.

Now that his song had gone.

May I Be Well...

2010-05-24T17:16:00.000Z

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.

For ME

2010-05-12T16:38:00.005Z

Happy International ME/CFS and Fibromyalgia Awareness Day everyone!!

Today, 12 May, is a day for raising awareness of ME / CFS and Fibromyalgia internationally. (Ok - so it's clearly not the 12th any more but that is when I started writing this piece.)

In honour of this I would like to make the subject of my post today me. Or rather ME.

This blog was created to chronicle my bleeding condition - von Willebrand's disorder. This is a rare disorder which means my blood doesn't clot very well. It is a little like haemophilia and has caused me to have an interesting a blood soaked life, since diagnosis at 6 months old.

I'm now 36 and whilst I am a happy little bleeder generally - who finds handling a long term chronic disorder, within my capabilities - the last few years have been a bit tougher. (If you would like to find out more about the von Willies please do peruse my previous posts - preferably with a cup of tea and slice of summat to keep your energy up.)

Something I have blogged less about is my experience of having CFS or ME.

Why is that?

I know my von Willies well. I was born with it. It is who I am. I am a bleeder. I am able to live in that knowledge and with the challenges that presents in a fairly confident, capable and good humoured way.

The von Willebrand's is treated with clotting factors. Which are made from blood products. From these blood products I contracted Hepatitis C way back when they were shooting clotting factor into my little girl's veins.

The Hepatitis C stuck with me, infecting my blood and messing with my liver, until I had the second of two lots of treatment, which managed to eradicate the virus from my blood.

Good news right?

But wait...

I really struggled with the treatment - Interferon and then Pegalated Interferon and Ribavirin.
And I mean really struggled.
It wiped me out.
Beat me up.
Wrang me out.
Shook me up.
Drained me out.
Chewed me up.
And spat me out.
It felt like being in a washing machine for 12 months.

Ever since the second lot of treatment in 2003 I have had recurring CFS or ME.

I still felt I was on the treatment six months later, 12 months later, 2 years later and still now 7 years later. Unable to work. Unable to live the way I used to. Existing. Waiting.

Don't get me wrong I have had periods of being well - being able to work, to live a full life, to fit everything in I wanted to and more....

However the reality now is not so good. My natural outlook is a sunny one. I see my CFS as a grey cloud that contains me and is not always easy to shine through.

The tricky thing is that to the untrained eye I look well. You look at me and don't see the cloud. Or the fog or the mist that clogs up my mind and body.

I used to find it hard to acknowledge the CFS. My mum once gave me a leaflet on ME and said - this sounds much like what you've got. Oh no, said I, that's not me - I'm just getting over the Hep C treatment. I'll be fine in a bit.

Even now if people ask me how I am - I'm fine! Or if not fine - I'm a bit tired.

A bit tired!! Understatement city :)

It is difficult to write how hard things can be. Equally it is difficult to talk about how hard things can be.

That is a problem.

How can I expect people who do not have, have never had ME or CFS to understand what it is like if I don't let it out.

You may be looking at the picture above and saying to yourself - she looks right enough. That is understandable.

If you see me looking well - which I do when I'm in public, most of the time;
or see me getting to the supermarket - which I do some of the time;
or if you have a conversation with me and I'm upbeat - which I try damn hard to be all of the time;
you cannot be expected to understand the reality.

I have tried to be a bit more explicit, but when I mention how exhausted I am - you might say, oh yes I'm tired too.
When I say it's hard to get things done - you might think, oh but you're lucky you don't work, you have plenty of time.
When I explain how hard it is to sleep - you might suggest, perhaps if you did more in the day you'd be more tired and sleep better?
When I say how much my body aches - you might sympathise, maybe if you got out more you would be fitter and be less stiff?

Often I don't have the energy to respond.

To argue that my exhaustion is so deep it is like a coat of lead that I wear 24 hours a day - that prevents me getting out of bed, that means I hurt to wash my hair and hang out my washing because my arms have to be held up, that means I pant after going up the stairs and need a rest after washing, then after dressing, then after eating my breakfast...

To explain that it is hard to get things done because my brain doesn't work properly any more. You know how you feel when you're hung over? Like your head is full of wool and your body is poisoned? That is my normal state. I forget things that used to be second nature. I struggle to make a cup of tea if you're talking to me, to hold a conversation without losing my thread, to write a blog without wanting to smash the computer because I keep getting words wrong, to run a bath without putting the wrong tap on and flooding the house, to put toothpaste on the brush and not Veet. I can't expect you to understand that some days I struggle to fit in getting up and dressed and doing some tidying and making the tea. Let alone cleaning and ironing and paying the bills and having people drop in to see me. The washing machine beep sends me demented. Running out of cat food is a constant worry because it means having to go out to get some.

To elaborate that I can't sleep because I'm so tired it hurts. That my joints ache and my muscles twitch and I can't be still for longer than a couple of minutes without twisting and turning and writhing trying to find a comfortable spot. That I feel things crawling on me - on my arm, then on my foot, then on my back, then my leg, then my face. There's nothing there, it's just a symptom of the CFS, Crawling Effing Sods. That if I do get to sleep I often wake in the small hours and then it starts all over again - the pain and the aching and the crawling and then the mind chimes in telling me that I need to sleep, I need to sleep, I need to sleeeeeeeeeep!!

To tell you that the aches and pains are such that I can't sit still for more than a few minutes without stretching and flexing my legs, arms, fingers. Next time you have the flu and you feel so sore and drained you can't move out of bed or off the sofa - that it how it feels on a bad day with CFS. It feels like my bones are rotting and my muscles are aching and twitching in an endeavour to get out of this body.

Is it better for me to acknowledge the CFS? Does it help to let it out? Or does that just remind me how much fun it isn't??

I know fighting the condition doesn't work - that the energy used constantly battling to overcome the lack of energy and limitations of your body aggravates the condition exponentially.

So do I need to accept ME in order to get better? Embrace my little grey cloud and let it hug me back. Take care of myself rather than push myself to the limit? Listen to my body rather than shout at it? Allow my body to recuperate rather than expect it to continue at an unsustainable pace? Give my mind space to rest and restore rather than shower it with anxiety and pressure and stress?

Love and cherish not berate and frustrate.

Worth a try, right?

Spot the Clot (or lack of it)

2010-05-05T11:19:00.005Z

Stepped out of the shower this morning and was drying myself when I had a familiar and slightly disturbing experience...

Blood spatter.

Not on the walls or the floor or, heaven forbid, the ceiling. On my towel. Which was fresh out of the linen cupboard.

Ok - so I don't have a linen cupboard, it was just off the pile of clean towels dumped on our spare bed, but that ain't the point, right.

Blood spatter.

I repeat for effect. And because I found two spatters.

One little grouping initially. Then another slightly redder affair which stopped me in my drying tracks.

Hmmmm, I thought, as I stood slightly damp, examining the evidence.

Hmmmm, I thought, as I put aside the towel and rotated in front of the bathroom mirror.

No facial bleeding - no spots picked or nose bleeds or toothbrush injuries.
No chest bleeding.
No tummy bleeding.
No arm bleeding - from over zealous loofahing.
No foreleg bleeding - from epilating my calves yesterday.
No neck bleeding.
No back bleeding.
No hindleg bleeding ... wait just a minute ... there he is the little bleeder ...

Back of my left thigh - just above the knee - it's just a spot - no it's a blob - no it's a dribble.

I mop it up with a piece of loo roll. Press another piece on it hard to try and stop it.

It works! For once :)

I must confess. It was my fault. I Veeted that thigh today. Must've left it one a few seconds longer than I shoulda. Ooopsy daisy.

Just keeping an eye on my jeans now - these little ones have a habit of re-appearing when they're least wanted ....

Night Mare

2010-04-28T09:37:00.005Z

This was the evening after the morning before.

Another weeny gummy bleed. Where this one came from I'm not sure - think it started around mid afternoon - aaaah mebbe it was that piece of Soreen I had with my cuppa?? It is very sticky and probly sucked a bit of my gum off. Nice. Anyway, it was still going as I headed off to bed.

You shot up? says Ade.
No, says I.
You won't sleep, say he.
Oh but I will, say I.
I got my night nurse you see and with that I could sleep through a boobquake.

Where was I?? Oh yes, the clotting factor conundrum...

I was talking to a fellow bleeder at the hospital Tuesday lunchtime and we both admitted that where possible - we put off having an injection until it is absolutely desperately necessary. Now it's not like either of us have a problem injecting - we don't. Though I know bleeders who hate it with a passion and I really wouldn't want to be in their sensible shoes.

Injecting is:

quicker than it's ever been (with these drugs companies reducing what used to be a squishy bag of plasma down to a couple of glass bottles)
pretty effective (though not always so, being a Type III von Willie, that would be far too simple)
almost painless (if I do it in my left elbow and through the scar tissue - not if I have to use my right elbow vein, but even that ain't too bad; hands - now they would kill me but I've yet to have to resort to that entry point)

So why put it off??

It's funny - when I have to do prophylactic treatment, i.e. twice daily injections to cover a period or a procedure of some sort, I set my alarm at 9am and 9pm and do my jabs no problem. Ok - so mebbe there is a little cursing and harrumphing but I do em - night after morning after night after morning.

So why is it different when I need to treat on demand??

I'm not sure.

It seems much more of an effort. Much more of a chore. A hassle. It bugs me frankly that I need to have my treatment. I mean why for God's sake?? Why do I have this damn disorder that means I need to stick a needle in myself to stop my gum from oooooooooozing like an insidious leaking leech.

Is it because it reminds me of my imperfection? But why would that be, as this process fixes me?

Do I hate injecting that much that I avoid it at all costs? Nope, once I get on with it, it's easy and generally restores me to a non bleedy state.

What then?

Am I just a lazy arse? Partly I think. My friend and I both agreed that when it comes to it we often just simply cannot be bothered.

Is it the cost?? Is it that I feel it needs to be really bad to warrant injecting? I have access to this treatment that not everyone with funny blood has. Sometimes yes, I think I postpone longer and longer. I wait - wait for the bleed to continue past 5-10 minutes normal bleeding time, past 1-2 hours slightly annoying bleeding time, onwards through 3-4 hours really annoying bleeding time, we reach 8 hours and I realise that I'm still oozing. Then do I inject??

With my gums - I sometimes wait til 12 hours before I jab, 24 hours. Why do this?

Any longer than 10 minutes is abnormal, should I not just inject once that has been breached?? Why wait so damn long...

You know, sometimes I think if I just ignore it, it will stop. If I don't think about the bleeding it'll just clot up and a few hours later I'll go - "Ooo, a blood free gob! How lovely." Very occasionally I find that happens, and a bleed I was previously aware of has miraculously gummed up of its own accord. Another reason to put off the prick.

Of course, should I be bleeding at a more profuse rate - period pace for example - I will get on with it. I don't sit around gushing. (Except over a really luscious piece of cake - and even then I'd stop to shoot up if I were bleeding over it.)

Mebbe it's just I judge the oozers as not bad enough to treat initially. They are just something I should accept and not treat unless they hit 12 hours? 24 hours? It's a valuable treatment - should it be saved for more extreme circumstances. Praps I'm not truly suffering unless I'm swallowing blood for a significant number of hours?

But why should I accept any excess bleeding even if it is an infinite dribble?

Just get on with it - shoot up and shut up.

Mucky Mush

2010-04-27T15:53:00.004Z

This was the state of me when I woke up this morning.

Gorgeous right??

My tongue was more gory but it's rude to poke that out without a warning. This is the morning after a night on the towels. Actually it wasn't that bad. No towels required for drooling blood - just a cast iron stomach from gulping goo.

I have been doing prophylactic injections for my latest period but stopped those yesterday morning when things eased off down below.

It amazes me however how quickly things get back to normal, or in my case - way below normal. Last night my gums bled from when I brushed my teeth at around 10pm, until after I got up at 9am this morning. My lips weren't too bad really. They have been known to completely stick together, so much so that I would win any sponsored silence by a very clear length. This morning they were, as you can see, just a little bloody. The way yours might look after a few too many red wines. Not how I would like to answer the door admittedly but far from scary to passing passersby peeping through my curtains.

Luckily, as is sometimes the case, things seemed to clot off once I'd had my breakkie, mebbe it's the ice cold milk on my crispies?? I didn't need to shoot up this time.

And therein lies a common conundrum - to shoot up or not to shoot up - that is my question...

NonSense

2010-04-22T08:13:00.005Z

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

Narration Explanation

2010-01-31T09:20:00.005Z

The content of the post below this was my statement for the Lord Archer Independent Inquiry into Contaminated Blood.

The recommendations from this inquiry have largely been ignored, however EDM 538 supports a Bill which aims to make them law and already has the support of 126 MP's.

The Bill comes in front of the House of Commons on Friday 5 February. Please ask your MP for his support in passing this Bill and signing EDM 538. I did and mine has.

Contamination Narration is my life as defined by my medical conditions. It is not my life in full.

I am one of the lucky bleeders still alive and fighting.

I am one of the lucky bleeders who did not contract HIV as a child.

I am one of the lucky bleeders who treated Hep C and kicked it out of me.

I do know how lucky I am.

I'm thinking of the others.

Contamination Narration

2010-01-30T21:37:00.002Z

I found out that I had contracted Hepatitis C from contaminated blood products inadvertently.

I am a 33 year old woman and have Type III von Willebrands disorder (vWd). This is von Willebrands in its most severe form. I was diagnosed when I was 8 months old and since that moment I have needed at least 1 injection per month of initially cryo-precipitate in the 70’s and 80’s, and then 8Y and Haemate P factor VIII in the 80’s and 90’s to control my bleeding. Due to the severity of my bleeding I have also needed a number of blood transfusions over the past 33 years. Initially my mum and dad had to take me 24 miles to hospital and back every time I needed treatment. When I was a teenager I learned how to inject myself and began home treatment.

Having clotting factor blood products available on the NHS was life saving. No-one ever told us of any risks associated with using blood products or having blood transfusions, we accepted that they were the solution to a severe condition – one that would enable me to achieve a quality of life impossible for a severe bleeder, prior to the introduction of clotting factor products.

My mum remembers me having non-A, non-B hepatitis on my notes when I was only a few years old but this was neither explained then, nor when the virus was re-named Hepatitis C.

When I was 19 I was sent to St Thomas’s Hospital in London for an operation on my ankle. While I was being prepped for the operation the consultant, let’s call him Dr S, asked me about my having Hepatitis C. I did not know what he was talking about. I had no idea at that time that I had contracted Hepatitis C. It was obviously in my notes but none of my doctors in Manchester had ever mentioned it to me. This was how the news was broken. I was sitting on the ward, surrounded by nurses doing their jobs and other patients - I felt frozen in time. Dr S may have tried to explain more seeing my shock but I don’t remember anything else he said.

I never confronted my own specialists as to why I had not been told I had contracted this life threatening virus. When I asked for more information on my return home, I was not told about the effect Hepatitis C could have and the prospects for liver damage, cirrhosis and liver cancer. I was only told that it was a virus that could take in excess of 20 years to cause any problems - irrespective of the fact that I could have contracted this anytime after my first injection 19 years ago, a fact I was unaware of at the time. I was advised that I should be careful not to drink too much. Not advised to avoid alcohol, only to drink a bit less with no real guidance as to how much was a bit. I was not told anything about the risk to sexual partners; luckily I had none at that time…

For the next 5 years I continued living my life – finishing university, figuring out what job I wanted, moving into a shared house with other young professionals – activities typical of a young person with a positive future. My Hepatitis C positive status was my only symptom of the virus and I chose to ignore it rather than face up to my uncertain future.

The way I did find about the realities of the virus - the prospects for liver damage, cirrhosis and liver cancer and the measures I should take to protect myself and others was from a support group that I became involved with - the Manor House group. This had been set up to campaign for help for those with Hep C but was a wonderful support and education network for someone like myself.

Due to what I learned I was unable to forget the virus all together. I had to ensure that no-one shared anything of mine. I often have gum bleeds due to the vWd and had to tell everyone I lived with not to use my toothbrush or share my glass or food. I found sexual relationships impossible. If I started to date someone I had not only to tell them about the vWd – a complicated and rare condition but one I lived with – but also felt obliged to make them aware I had HCV. How could I expect someone to start a relationship on an emotional or physical level without warning them? Not only the risk to themselves but the fact that I had an uncertain future due to a potentially terminal virus.

When I was 24 I was advised to take 12 months interferon treatment. I was working as an Events Manager at a large department store at the time. My employers knew about the vWd and the HCV and were happy for me to go ahead with the treatment even though I had explained the possible side effects. I had been told that I’d be injecting three times a week and would possibly feel a little fluey the day after the injection. I’d discussed this with work and they’d agreed if that was the case I could reduce my hours and work on the days in between when I felt better.

The worse thing about starting the interferon was it forced me to acknowledge that I had this life threatening virus in my blood. At that point my future was impossible to contemplate and I found myself thinking what music I would like at my funeral. That’s how it made me feel. I always felt I was a strong individual and that I could handle anything vWd threw at me. This was something else, far beyond my control and it loomed over me blocking out the light.

This course of treatment worked for me while I was on it – the PCR test was negative, but the virus came back immediately I stopped. I had horrendous continuous side effects – leadening fatigue, flu-like shivers and hot flushes, pain like my bones were rotting, furious brief but intense rages, itchy sensations on my skin at night, headaches, forgetfulness and more - I was unable to work after a couple of months of treatment. My company held my job for me for a while but after a few months terminated me because I was unable to guarantee when I would be fit enough to return to work. It took me over 6 months to get back to normal-ish after the 12 months of treatment and my hospital said they would not recommend I do the treatment again because it had affected me so badly.

When I felt well enough to go back to work I had no job and I still had the virus. I decided to retrain in order that I could maybe work from home if I ever did have to take more treatment or was too ill with the virus to get to work. I took out a career development loan and did a computing course.

About this time I met a man through a friend of mine from university. He was a farmer from Worcestershire and was totally unfazed when I told him what I was going through. I explained about my bleeding condition, the virus which had just reared its ugly head again, why I was not working at the time and he asked lots of questions and still wanted to see more of me.

After another year I'd moved to Worcestershire to live with this man, Adrian, I was working in IT and got a new hospital, the QE in Birmingham. They wanted me to go on a 6 month pegylated interferon and ribavirin trial. They said it had a good chance of success as I had genotype 2 and was a fairly young woman.

I was not keen after the last time without really knowing the state of my liver. I asked for a biopsy and even though I was a bleeder they agreed to do it. Unfortunately the biopsy was not monitored carefully and I had an internal bleed into my liver. I ended up in intensive care having had an operation to drain the blood from my liver, to try to control the bleeding and received six pints of blood. I was in and out of hospital for 3 months but at the end they told me my liver was showing only mild scarring - amazing after what I had not been told was probably 25+ years with the virus.

I did the 6 months of pegylated interferon and ribavirin. I struggled with the side effects again during and for 8 months after the treatment and was diagnosed with depression because I was so ill - even with my canny move into computing I was unable to work for the entire time, at home or otherwise. However this time the treatment worked. The virus was negative during the treatment and at the six month test afterwards. I was given the six month result just before Adrian and my wedding day. The virus is still negative, it is no longer in my blood although it has not gone altogether from my body – the doctors are not able to say it is a complete cure. At my last test in November 2006, 3 years post treatment, I was still clear – thank god!

So how is life now I'm virus free?

Since the second lot of treatment I have been left with long term after effects. I'm not complaining because I'm so pleased to be HCV negative but I am concerned by the chronic post-viral fatigue I've been experiencing and how long it has been going on.

I remember feeling appalling a few months after the treatment and convincing myself that the HCV had come back - luckily I was wrong. I constantly expect it to have reappeared from somewhere because of how awful I feel but it hasn't yet, so that's good.

I was diagnosed with post-viral fatigue (chronic fatigue) by my GP due to the time it took me to get over my treatment. After I did get back to work - 10 months after the second lot of treatment, I found that I had a low physical limit beyond which I'd get horrendous fatigue, pains in my bones and joints, headaches, hot head flushes - exactly how I felt on the treatment. It would last for days or sometimes weeks. Mostly it was triggered by getting some kind of viral infection which would somehow set me right back, but could also be just overdoing things and not by any normal standards.

Since the second lot of treatment I have had a number of days and weeks off sick. Before the treatment I had worked my way up into IT consultancy and was really enjoying my job. After the treatment I found an IT position locally which was less stressful but with a lower salary because I didn’t feel capable of working at my previous level. Shortly after I started this job I got pharyngitis and this led to a sudden descent into 7 months of horrendous chronic fatigue and depression caused by feeling so awful so long after my treatment. I was very lucky again and my employer kept my job open for me and enabled me to return part-time and then full-time back at the beginning of 2006.

I was so happy to be back at work and feeling practically normal, only 3 years after clearing HCV. However I was not doing anything outside work because I was exhausted by the time I got home. Too tired to cook or hold a conversation with my husband. Also my memory and concentration have never recovered to the level that they were at before the treatment.

After a whole year of feeling much better and working really hard, I have been off since another throat virus in January of this 2007 until now. Again with the exact same problems – incapacitating fatigue - such that I find it hard to hold a conversation if I’ve done too much, my memory and concentration are really bad, I cannot sleep because of the pains in my legs and the itchy sensations – recently diagnosed as formication, I feel hot flushes in my head and often have headaches.

My GP now says it can't be post-viral (as in HCV) fatigue because it is too long after I cleared the virus and had the treatment, which was 2003. I'm convinced it's still connected but as the docs have no long term evidence to go on I feel like a malingerer.

I'm sure it is the treatment or the HCV which has left me with this chronic / post-viral / call it what you will fatigue problem. I'm managing it and learning to adjust my life to suit. It looks as if I will have to re-think my career again because I cannot continue the job I was doing at the rate I was doing it. I cannot afford to retrain again; we cannot really afford for me to take a pay cut but may have to. My husband is working himself ragged with the constant worry that I may be like this for some time.

My haematologist has suggested I have a ‘tendency’ for this fatigue but I never ever had this problem before the treatment. As a bleeder I’ve always lived my life to the very best of my ability and I resent the implication that I am in some way allowing myself to wallow in this state.

I'm currently off work still. I have improved slightly over the last few months but I'm still having headaches, painful joints, horribly aching legs at night, itchy crawly sensations, raging moments, hot head flushes, huge forgetfulness, incoherence (can't hold a conversation after 8pm), that's all I can think of for now...

I no longer have the Hepatitis C running around my blood but I worry constantly if having it dormant in my body still is causing these problems. I cannot have recombinant treatment because I need the vW factor, as well as the factor VIII, that is present in heat treated factor VIII but not in recombinant. I worry every time I inject myself that I could be, or could already have been, exposed to other viruses. But what choice do I have?

Rut Race

2009-09-22T13:33:00.006Z

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.

Blood, Sweat and Tired...

2008-08-29T11:31:00.005Z

This is what you get if you go out to Bewdley for a lovely meal with friends and don't pre-book a taxi home...

Only, of course, if the police decide to do a spontaneous spot check of taxis.

And only, of course, if this leads to the majority of taxi drivers deciding to forgo the night's fares to avoid the possibility of being spot checked.

And only, of course, if all those out for that lovely meal have had a little too much wine / cider / beer with said meal.

And only, of course if they don't realise until they are on the street edge wondering, "where did all the taxis go?"

And only, of course, if by that point it is far too late to call a phone call reasonable.

It's 4 miles back from Bewdley. We know. Cos we walked it that night.

Thank heavens to Betsy it wasn't raining - or someone would have been rudely awakened and harangued for a lift!

This foot was the aftermath. And the other one was pretty similar. That and some very painful ankles the next day. And a week of tiredness and beyond.

Good meal tho!

And I don't think my stopping to water the trees in the churchyard is a sin, right??

X

p.s. off to the Isle of Man for 10 days now to play with some Manx cats...

Blood, Sweat and Tyres - in action...

2008-08-04T19:21:00.003Z

If you want to follow the lads and lassies progress on a day to day basis - they're doing a blog:

Blood, Sweat and Tyres Blog

Great reading so far and no major mishaps, only midges.

X

Ch ch ch changes ...

2008-07-28T18:42:00.000Z

Notice anything different about me?

X

Blood, Sweat and Tyres 2008

2008-07-21T09:51:00.008Z

Many of you sponsored my friend and fellow bleeder Jae when he successfully completed last year's Blood, Sweat and Tyres event. This sponsored event takes place every summer (or at least if has for the last 3 years) in aid of the Haemophilia Society.

This year the team have set themselves a teeny bit of a challenge. They are attempting to do John O'Groats to Land's End over 23 days from Sunday August 3rd to Monday August 25th.

They are asking for anyone who is interested to join them for all (haha) or part (still haha as far as I'm concerned:) of the ride. What do you reckon? Anyone up for a wee challenge??

Late notice I know and most of you have lots of other commitments but I thought I'd let you know...

Further details, along with a schedule, accommodation and photies from last years ride can be found here:

Blood, Sweat and Tyres

The Facebook event for the ride is found here:

Facebook BST 2008 JOGLE Event

The Justgiving webpage - where you can make a secure online donation is found here:

Justgiving BST 2008

X

My Psycho Moment...

2008-07-17T11:45:00.006Z

Got out the shower yesterday to find this little bleeder:

Not quite sure how that started - think it could've been Norman stabbing me in the shoulder with a pin, ee ee ee...

I kept mopping and it kept not stopping:

Managed to get me towel on as you can see - not that you'd have wanted to see otherwise!

My hair towel came in very handy:

Clothing meself proved a little tricky but got so far. Managed to locate and apply a number of plasters - three to be precise - but within a minute there was a leak:

Took myself off to have an injection. Sitting in the dining room in my brassiere hoping that the neighbour wouldn't choose that moment to gain access via our passage.

Blood drains from under me plaster
tissues blot it
don't bleed on floor
attempt to mix bottles of treatment
don't drip on table
mop it with tissue
fill my syringe
get blood on my hands
all over my arm
hope window cleaner isn't due
put on tourniquet
put tourniquet on other arm cos need to mop up bleeding arm
hold tissue on shoulder with chin
stick needle in
inject stuff
stop half way through
wipe blood up
start again
finish
take needle out
don't care if blood spills on table
or floor
wait
dab
still going
wait
dab
wait
dab
still going
take off blood soaked plasters
still going
put on clean plasters
clean arm with steret wipe
another steret wipe
another
wonder why didn't just have another shower
watch plaster
watch plaster
nothing.
No blood.

Hooorah.

Gum still going tho.

xx

I don't care if I'm black or blue...

2008-06-11T14:07:00.005Z

... or purple or yellow or red.

Here's the latest pics of my ever so colourful arm - damn it's hard to find clothes to co-ordinate...
Friday 6 June - nicely dribbled down thro and below me elbow now. Still hurting - speshially when held over head like this - put it down then you silly billy!!
Saturday 7 June - freshly washed and still looking fairly gruesome. Luckily being in this spot on my arm means it's hidden from view when you're wandering down the road and no well meaning neighbour calls the domestic police!
Monday 9 June - Sunday was a day of photographic rest! It ain't that bad now really - going all yellowy and old. Much less pretty to look at:) Rather like yellowy and old me. No sympathy required, them's the facts! Only hurts in bed if I lie on it by mistake, and when trying to wash me hair in t'shower.
Wednesday 11 June - forgot yesterday so it must be getting better, right? Going, going ...

xx

As Natasha Beddingfield once said...

2008-06-05T11:10:00.006Z

March 2008 - I thought I had pulled a muscle but it got more and more painful and then the bruising started to come out. Took about 2 weeks to slowly run down my leg and into my foot before disappearing. Not had many muscle bleeds before.
March 2008 - No idea how I got this one, probly poked meself in the night or something.
March 2008 - This was from a walk Ade and I went on in Cornwall on our holiday at Easter. Scuse the attractive nail polish which had been on since an 80's party on New Year's Eve - what a scuzzer...
April 2008 - Can't remember which bit of me this is :) think it might be a thigh where I bashed it on our desk in the cellar - I know, not terribly sensible!
May 2008 - I slid down the stairs last week, I'll blame the loose carpet, but it could be the half asleep bird. Banged me wrist against the bannister but at least it stopped me breaking me neck! We ain't getting a bungliow Ade!! Did it on the Monday and the bruise came out Friday. Not too sore tho.
June 2008 - This is my latest masterpiece - not that you can see it very well - mobble pics I'm fraid. No idea how this one happened - nothing done to trigger it. Just woke up on Sunday with a very stiff shoulder and upper arm. Bruise started to come out late on Monday and this was taken Tuesday. Very nice...
June 2008 - Wednesday. Thought I'd do a day by day bruise progress for your delectation and mine. Want to see if this one will dribble down my arm before disappearing, like my leg bleed. Love the colours on this:)
June 2008 - This was taken this morning. You can see it's going into my elbow. Had to wear an ankle support round it in bed last night cos it was throbbing so much. Had 3 of injections for this one so far. It is definitely another muscle bleed, my second spontaneous one in 3 months. Weird.

Guessed the song yet? It's fairly bleeding obvious...

xxx

p.s. just had a slightly blushful moment - the door knocker went while doing this post,
"Ah Ade back from the dentist,"
I thought,
"not taken his blooming key again."
As I went to open the door, I also bent down to pick up the post,
"He can have my backside to greet him,"
I thought,
"that'll teach him to forget his keys!"
And stood up to see two confused looking blokes,
"We've come to look at your tv aeriel..."

Blood Glorious Blood

2008-05-14T16:19:00.003Z

Gum glorious gum
bleeding on for ever.
Three injections done
why aren't you getting better?

X

p.s. I know it's not the overdue continuation of my March maladies or anything about what's happened since, but when inspiration strikes (if you can call it that:) you just gotta go with it! Please feel free to continue song if you are similarly inspired...

My favourite thing ...

2008-04-21T10:31:00.002Z

I love this song.

Sam Sparro - Black & Gold.

And look out for some stylish walking stick work.

X

April Showers

2008-04-18T13:25:00.002Z

There are showers in Shrubbery Street
they are coming from my nose.
There's a fireman living in my head
who keeps switching on his hose.

Every time I sneeze,
they come in twos and threes,
I'm forced to my knees
and need to wear a bib.
The floorboards quake,
the ceiling shakes,
my poor body aches
and I think I popped a rib.

My head is filled with molten lead
my eyes are dim and watery.
I'm stuck in bed
feeling three quarters dead,
a lot worse than I oughta be.

There's a gun in my hand and it's pointing at my head
the cats don't come too near.
Any minute now I'll stick it up my nose
and squirt Sinex out my ears.

Mad March - the beginning

2008-04-06T15:31:00.004Z

I forgot how to do this.

Or did I just tire of the sound of my own writing?

Or am I just a lazy arse who cannot be bothered to type but who does keep checking her own blog, juuuust in case someone has kindly updated it for her...

Probably a combo of the bottom two. I have been told that to give you a few little snippets and then b****r off for a number of weeks is somewhat mean, and I tend to agree. However I may actually be talking to myself by now, because anyone who used to read this probably got fed up of the scab being undisturbed and have found far better things to do with their spare minutes than read Ros's ramblings.

So Ros, let me tell you all about March mania.

Ooo do, it sounds such fun.

The month started well I think - hard to remember it now but I think it was fairly non-eventful. Actually no, that's a total fib. We had Karen come up from London the first weekend. Was lovely to see her and spend a few relaxing hours together catching up and eating scrummy meatballs. Mmmm meatballs. She had another journey which turned into an epic quest of woman pitted against the evil force that is public transport. Karen won't mind me saying but for her, every journey is a journey into the unknown arrival time. She set off quite happily with her journey all planned out and an eta of 2.30 Saturday afternoon.

I had a call around midday - "The bus took far longer than normal to get into London and I've missed the train by half an hour!"

Oh eck. And so it starts again... :)

She had spoke to the chappie on the ticket desk, he told her the next train she could get would not get her to us until half 5, and would mean a good hour stuck at the station.
"Never mind," said she, I got me laptop, I'll do some work and the time will whizz by."
I did some quick checking on web and found a train she could get instead that would go from a different station but would get up to Brum in no time and we could go up and fetch her.
"Ooo I dunno, I wouldn't want you to come into Brum at end of shopping time to collect me."
Fair point. Not that we'd have minded but I know what she's saying.
Then I got another call...
"Just spoken to another bloke and he's given me a train time from another platform that goes into Brum and then I can get a train on from there to Kiddy, and I've got just enough time to get there, and it's cheaper!"

"Hurrah!" we both cried, and off she went.

After a lovely 24 hours off she went again and I think had an almost straightforward journey home. Maybe one day she have an event free journey? And terminal 5 will have a day with no lost luggage. Or maybe she'll just buy that car and get up here in 2 hours? Hehe.

We had an Aycinena double - Kitty and wee James came up the next weekend. It was a tractor and trailer and tea and cake filled fiesta. Much fun had and I believe James is still talking about the big blue tractor - and I'm sure he doesn't mean the one on the telly! There's no tales of the unexpected travelling for this weekend. Kit drove and got here safe and sound, simple as that.

While Kitty was up I started having back pain. Both sides of my back, just below my waistline, on either side of me backbone. Bit of a dull ache which made me feel uncomfy when I was sat, or stood - although lying seemed to be ok with a hottie in the small of me back.

After they'd gone on the Monday the pain seemed worse, altho it was only on the left side now but was radiating ( now there's a medical term I ain't qualified to use) round into my tum and down into where I imagine my ovary to be. I'd started talking some paracetamol by this point but this was doing nothing. I rang the hospital. Something was telling me it wasn't just going to go away. And having had internal bleeding before I had a little voice saying what if it was that. I had a jab just in case.

The hospital eventually got back to me Wednesday I think? Partly my fault having not expressed the urgency of the situation I spose. I am quite talented in that area apparently. When I spoke to them on Weds I made it clear I was coming up no matter what! I was on tramadol by this point but that wasn't really killing it.

Mum was around to drive me up luckily cos I wasn't in a position to drive. I wasn't in any position at all, cos every one hurt by this point. Hot water bottles helped at night, but I wasn't really sleeping, even with the sleeping pill and the tramadol, and spent the day moving from one painful position into another. They were good when we got there. Gave me a spot to lie down in the sunshine and I had a nap. Slightly helped by the higher doses of tramadol and the paracetemol I was taking by this point and the lack of sleep.

They ummed and ahhed a little but did do a wee and blood samples. Not while I was sleeping obviously.

The results were inconclusive, a bit of blood in my wee and a raised summat, so they ordered a CT of my kidneys. By this point they were of the opinion that it might be kidney stones. I was of the opinion I didn't care, as long as I could have some more tramadol or praps some anasthesia please?

Don't Disturb The Scab

2008-02-21T15:37:00.002Z

... as my mother said to me, while I was hobbling down the kitchen towards the microwave with a tub of carrot and coriander.

I have got various things to tell you, blogees. But I have not got the energy to write much more than this in one go.

See that's it. I'm done in.

Anyhoo - if you can hang around a bit longer I'll try and expand on the various things that are occurring currently (now that's one too many currs for my liking!)

1. No bleeding in February thus far - don't tell anyone, my womb lining might hear you and decide its had enough of being sidelined and needs to make a speedy comeback with a new hairdo but to all intents and purposes the same motivation ... gore galore!

2. My trace of the adoption has, after a slightly hesitant and covert start, moved on apace and more is being revealed and illuminated than ever before.

3. Ade and I had a trip into the Welsh hills on Monday this week looking for a woman who can do for Chronic Fatigue what Hugh FW has done for battery farming - i.e. hopefully get rid. We found her halfway up a hill and have got a whole new plan of attack, tons of bumpf and another vast array of supples and miners and vits, along with a book and a load of articles to back up her advice.

Just in case you're feeling swizzed - that's not the expansion that's merely the teaser, as these TV types like to say. The prologue before the novella, the preview before the performance, the canape before the cordon bleu ... ok, now I'm bigging it up way too much. Suffice to say I will update anon. If you can hang on. Please.

X

Wishing Tom, Ade's cousin, a happy birthday for yesterday.
And wishing the boys going to Paris for Dave's 40th a blooming good time!

My Heart Shaped Mole

2008-02-14T17:46:00.007Z

Happy Valentines to you all, my lovely loves.

X

Hap hap hap pee birth day, eat a little cake for me . . .

2008-01-23T15:20:00.000Z

Here's wishing three chaps a very special birthday:

Dave 40 today - woo hoo (never would've thunk it;)
Jae 37 today - enjoy stuffing your bird tonight me dear :)
Toby 3 today - Ade's cousin Sue's little boy

The jelly and custard is on me!

X

I'm still bleeding . . . yeah, yeah, yeah!

2008-01-21T20:26:00.000Z

Hellooo and welcome to my first proper post of 2008 - 2008 can you believe it!!
Where did 1974 - 2007 go to??

Anyway, having bled horrifically for nigh on 2 years I've been on the hormone pill Norethisterone 3 times a day since November. Great, you might think - no more bleeding . . . you clearly didn't pay attention to the title of this post!

Since I started re-taking the hormones 2 things have happened.

Firstly my skin has erupted in a manner akin to a woman possessed by a demonic blemish-creating ghoul. I am covered in spots, zits, puss filled sores which quite frankly are slightly unsightly. And when I say covered I mean, my chin, my cheeks, my neck, my front, my back but - thankfully - not my arms or my legs. These remain under their winter cover of clothing and hair but I shall be proud to bear them when the sun comes out. Ade is currently delighting in pointing them out to me - should I forget quite how badly I am afflicted.

Secondly the bleeding that was heavy and prolonged but in my eyes predictable, has become slightly less heavy and less prolonged but totally unpredictable. I'm not sure which I prefer. Actually, it's obviously the second option - less bleeding is gooood. However I am now in a position where I have no bleed free period. It is all period period but then again maybe it isn't. What I mean is I have absolutely no idea when any bleeding might start and for how long it could go on.

This results in a period paranoia. I go everywhere armed with sanitary product. My sanitary basket of tricks never leaves the side of my toilet bowl. Not a day goes by when I do not have an Always Ultra on. Or at least that is how it is now. Having had a couple of minor incidents. A couple is a slight underestimate if you include those which occured in bed - altho my light (non) sleeping ensures that any sudden erruptions (of a bloody not a spotty kind) are instantly banished to the bathroom and dealt with firmly. Not perhaps before a small element of leakage and staining occurs but we have a new washer which is most effective at blood removal, thank goodness.

The pre-Christmas Sainsbury's incident is not one to be cherished. Imagine being half way through your grocery shopping, having left it to a point when you have no food in any cupboard / fridge and the cat is bringing in offerings that look vaguely appetising. You have left it too late to internet order because it would be at least another 48 hours without food and in fact your stash of the 2 t's (towels and tampons) is such, that an emergency drag yourself round Sainsbury's is unavoidable. Either that or revert to the somewhat dusty Mooncup. Half way round with a trolley that contains some but not all your necessities you feel a little rush. Not of excitement at the latest two for one on deodrant, but of blood emanating from between your thighs. Luckily-ish you did pop a panty liner in this morning but their capacity for absorbing a Mooncup or three's worth of blood in a short period of time is not something that has ever been put to a scientific test.

For some reason I didn't think to abandon my trolley and run like a leaking leopard to the ladies. Maybe I thought the security guard would tackle me to the floor with my unopened pack of Super Plus Extra. I kept going. Walking in a quickened but gliding pace around the aisles in an attempt not to dislodge anything that might be about to exit stage south. Every time I felt anything dribble I held my breath as if that would stay its flow, as if gravity was there to be defied.

Somehow I made it round my absolute essentials (milk, bread, cat crunchies, tampons, towels) and got through the checkout and into the loo before my jeans gave the game away. It was a near thing but I shall endorse the Always panty liner as a absorbing miracle if anyone asks.

From that moment on I have never been without a knicker full of a normal, proper period designed, product.

I spoke to my haematologists after new year, in case they too were concerned about my sudden floods that lasted a few days and then stopped again without rhyme or reason and with continuous Norethisterone. They weren't, as long as I wasn't pregnant, which is fairly unlikely when you're bleeding most of the time and when you're not you think you might start any minute. And not that likely when you're on the pill, but not impossible obviously.

A few days later I received a letter from my gynae doc suggesting that as I was still bleeding I should add Noramin another hormone pill to the mix. This combination was the one that kept me bleed free for the last 17 years so I thought this was a jolly sensible idea.

Sadly the commencement of the Normain three weeks ago co-incided with the commencement of a wet patch following a brief dry one. The wet patch has been rather large and flowing with a number of concerningly sized clots and again seems to come and go daily. I'm assuming that this is a teething issue. Once my poor old body gets used to yet another hormone coursing through it, it will fall into line, turn off the taps and let me put away the 2 t's once and for all . . .

. . . now there's an appealing prospect.

X

Waiting Hopefully

2008-01-17T14:45:00.000Z

This is a challenge from Helen, my bleeding friend.

My answers will be a big pile of pop cheese...

1. Put your iTunes, Windows Media Player, etc. on shuffle.
2. For each question, press the next button to get your answer.
3. YOU MUST WRITE THAT SONG NAME DOWN NO MATTER HOW SILLY IT SOUNDS.

IF SOMEONE SAYS "IS THIS OKAY?" YOU SAY?
For An Angel (Paul Van Dyk)

HOW WOULD YOU DESCRIBE YOURSELF?
One Too Many Mornings (The Chemical Brothers)

WHAT DO YOU LIKE IN A GUY/GIRL?
Evergreen (Faithless)

HOW DO YOU FEEL TODAY?
Knives Out (Radiohead)

WHAT IS YOUR LIFE'S PURPOSE?
Maybe You've Been Brainwashed Too (New Radicals)

WHAT IS YOUR MOTTO?
Flaunt It (TV Rock Feat. Seany B)

WHAT DO YOUR FRIENDS THINK OF YOU?
Why Does My Heart Feel So Bad? (Moby)

WHAT DO YOUR PARENTS THINK OF YOU?
Supermassive Black Hole (Muse)

WHAT DO YOU THINK ABOUT OFTEN?
Lady (Hear Me Tonight) (Modjo)

WHAT IS 2 + 2?
Come Undone (Robbie Williams)

WHAT DO YOU THINK OF YOUR BEST FRIEND?
Fold (Jose Gonzalez)

WHAT DO YOU THINK OF THE PERSON YOU LIKE?
Lovely Head (Goldfrapp)

WHAT IS YOUR LIFE STORY?
Candy Perfume Girl (Madonna)

WHAT DO YOU WANT TO BE WHEN YOU GROW UP?
Machete (Moby)

WHAT DO YOU THINK WHEN YOU SEE THE PERSON YOU LIKE?
Gaze (Sweetback)

WHAT WILL THEY PLAY AT YOUR FUNERAL?
No Regrets (Robbie Williams)

WHAT IS YOUR HOBBY/INTEREST?
Days Go By (Dirty Vegas)

WHAT IS YOUR BIGGEST FEAR?
Drowned World / Substitute For Love (Madonna)

WHAT IS YOUR BIGGEST SECRET?
I'm Not Over You (Scouting For Girls)

WHAT DO YOU THINK OF YOUR FRIENDS?
Hysteria (Muse)

WHAT WILL YOU POST THIS AS?
Waiting Hopefully (D*Note)

Phewee - not too embarrassing ... why don't you try it?

x

Cannot Flippin Sleep ... Still!

2008-01-10T16:04:00.000Z

Cannot Flippin Sleep or Chronic Fatigue Syndrome or CFS is the bane of my life.

Happy New Year to anyone bored enough to be reading this hehehe.
I have bumped this post - first published in December -to the top in case you missed it and also because even with two sleeping pills a night - I'm still awake!! You should see my bags...

You might think that the problem with CFS is too much sleep, an inability to stay awake if you will. You might imagine it involves a good nights sleep of, say, 10 hours and then drifting in and out of snoozes during the day. Maybe it does in some cases.

That is not how it affects me.

My main problem at the moment is disrupted or disturbed or disabled sleep. This week I've had perhaps one night when I've slept well. No, thinking about it I think it's over a week now since I had what could be described as a good, or even just as a normal, night's sleep.

There is the pain issue. My ankles kill when in bed. I've tried wearing socks which sometimes helps. I've taken to wearing my ankle support in bed the last few nights and this seems to make a little difference. I have as you know been taking pain killers - firstly Co-proximol and then Tramadol. I thought the Tramadol had done the trick but then that hasn't been working at all this week so I've stopped taking it.

I cannot get comfortable. My legs ache and throb constantly and I find myself writhing around trying to get them in a good spot. I find a place that appears comfortable but within a couple of minutes I'm rotating again, looking for that mythical position of no discomfort. It doesn't exist in my bed I tell you.

My head aches with the effort of trying to sleep. There is a now psychological element to my problem. I need sleep and I know it. Every night which goes by with little or no sleep adds to the pressure in my mind as soon as my head touches the pillow each night . . .

Right- time to sleep, shut eyes, empty mind and reeelaaaaax . . .

Aaaaarrrrrgh, mind spins off into random flitting thought, legs start up their percussive throbbing and a thrashing and it's another night of impossibly slow time travel. I can stop time with my mind. Yatta!

I swore in church yesterday, apologies oh godly one. I had just remembered that the one very important item on my shopping list - Nytol - was the one thing I had forgotten - perhaps, in fact, because I had forgotten to write it on my list in the first place! Luckily an angel was in the church at the time and she invited me back to her place to have some of her husband's supply. I did that and also benefitted from a cuppa and a mince pie - thank you to her and her angelic family :)

I have got an appointment to see a chronic fatigue specialist. Yes, there is one. Although you wouldn't know it if you asked your GP, or your haemotologist, or your hepatologist.

This lady, Dr Myhill, worked in the NHS for 20 years but now specialises in treating fatigue and in preventative medicine. The first appointment I could get is mid February - I'm hoping it's worth the wait.

Her website is extremely informative and rings so many bells when I read it that I could contract out to all the local churches. This is the address if you want to check it out:

http://www.drmyhill.co.uk/index.cfm

It's full of information about fatigue and other health problems. I don't have all the problems that she associates with CFS by any means, and for that I'm grateful, but here is short list of my symptoms taken from her section:
'CFS /ME (Chronic Fatigue Syndrome) - how to diagnose and which tests to do'

Severe fatigue which is physical and mental and usually delayed 24-72 hours after exertion;
malaise (i.e. a feeling of illness);
muscle pain, usually worse with exertion;
muscle weakness (without the eye manifestation she refers to)
very poor stamina;
sleep disturbance (whereby the "biological clock" is moved on 4-6 hours and CFSs drop off to sleep late and wake late) - (in my case there is little or no dropping off and I find myself only sleeping in the early to mid morning);
alcohol intolerance;
autonomic nervous system disturbance (which as she explains can lead to problems with poor temperature control and extreme temperature intolerances and sweating - another nightime problem I've not yet mentioned)

She also refers to the mental fatigue which manifests as:

poor short-term memory,
inability to follow a line of argument,
difficulty reading or watching TV,
poor problem solving ability
poor learning.

I can relate to 4 out the 5 there and am incapable of focussing if there is more than one thing happening - i.e. I can watch the tv but don't try and talk to me while I am, because I will lose the ability to watch the tv, as well as be incapable of listening to what you are saying. Sound familiar to friends and family?

I know when people ask me how I am and I say - Oh, tired, same old thing - they probably think and indeed sometimes say - Oh yes, I know how you feel, I'm exhausted I had such a busy weekend...

Final quotes from Dr Myhill's site:

"Many patients believe, (with some justification!), that they are going demented."
"However, usually there are no abnormalities on physical examination, indeed, often the patient looks well."

Ho ho ho!

X

Tis the Season to be Jolly!

2007-12-25T09:03:00.000Z

Wishing everyone a very

Merry Christmas!!

The turkey is in...

The goose is stuffed...

The sausages are baconed...

The trifle is ready...

Have a scrumdiddleeumptious day!
I hope you get everything that you want from Santa.

Love Ros xxx

So I say...

2007-12-19T10:54:00.000Z

Thanks for the Malteasers, the chocs I'm eating,

Thanks for all the joy they're bringing.

Who can live without it, I ask in all honesty,

What would life be?

Without a Twix or a Flake, what are we?

So I say thanks for the Malteasers,

For giving them to me.

On the 18th of December . . .

2007-12-18T08:51:00.000Z

. . . my von Willies gave to me

four bleeding gums

three oozing scars

two nostril clots

and

a surprise period in Sains bur eees!

Seasons Bleedtings :)
X

On the first of December . . .

2007-12-01T04:00:00.000Z

. . . my von Willies gave to me
a bleedi-ing belly button.

Hmmm.

Yes, I know - that isn't right. I'll have a jab and if that doesn't knock it on it's little button head I'll get it checked out.

Yes, I know - that is the Love Bugs nightie - sorry Louise :( but I'm sure it'll come out in the wash.

Half and half sleep / no sleep tonight - mebbe I'm excited bout Christmas - well it is December after all . . .

X

Tramadol 2

2007-11-30T13:12:00.000Z

spoke too soon
saw the moon
all thro
the night
so sleep had been merely a co-incidence

X

Tramadol

2007-11-29T16:02:00.000Z

for me
is the key
to a good nights slee
puh

X

Clots of Love. . .

2007-11-26T12:28:00.000Z

I'm back home and pleased to report that this was the only time I've had an op and not had any bloody surprises! No post op bleeding at all, as far as I can tell. By that I mean the pain has been containable, not unbearable, and there has been no major blood leakages from any orofi or entry points.

Woo hoo for "The Plan"! It worked.

Thank you to Dr's L and W for keeping a close eye on me and my levels and making sure I was topped up with lots of lovely platelets and juicy clotting factor.

The op went well and discovered that I had some endometriosis which they heat treated and an inflammatory cyst which they lasered. My tubes were clear tho which is good, always nice to have clear tubes.

Doc A who put the scopes in said he couldn't really see if I had a septum in my womb cos there was too much blood squirtage any time he touched anything, so I could've probly done with higher levels prior to the op but at one point post op my factor viii was 271% and my Ricoh activity 194 - that's damn good for a Type III.

Now just resting up with a very bruised belly, chomping pain killers, injecting for a few more days, under exerting and waiting for my next apt in six weeks time to find out a bit more about what they saw.

Thank you for all the texts, emails, blog dedications, letters and phone calls of support - very kind and very much appreciated :)

Love and clots.

X

Is Nail Polish a No No??

2007-11-19T12:01:00.000Z

Tomorrow I'm off into hospital. I'm going for some internal investigations - a laparoscopy and hysteroscopy to be precise.

My gynaecologist has told me this is to look at the womb, tubes and ovaries, to deal with any ovarian cysts and to see if I have a septum in the womb. A septum is ably demonstrated in the sketch he drew for me below...

I think the little thing coming in at the top right corner is his hysteroscope, taking a look at the womb from above. Quite artistic don't you think?? I hope his handiwork inside me is a little more precise...

Not wishing to worry you but I had a d & c and laparoscopy when I was a teenager and it's not a particularly splendid memory with post-op bleeding into my womb and pelvis and weeks in the Duchess of York hospital in Withington having it all drained out time and time again.

But I am putting my faith in the haemotologists at QE and at the Women's Hospital in Brum, they are working together and have come up with (in a deep and dramatic voice) "A Plan".

This is good. "A Plan" is exactly what they need, what I need, to avoid any of the previously experienced blips - such as hitting a hepatic vein whilst doing a blind liver biopsy. Where they scan your side, mark the spot with an X and then stick a big old needle in to draw out a sample of your liver without actually being aware of what bleeding vessels are loitering under the surface ready to be ruptured.

That was a horrible time, more so for my husband and family than for me - I was just in pain and then in recovery in intensive care. The lesson was hopefully learned by my doctors that von Willies do not always do what you expect - in a bleeding sense of course - and from now on they do all biopsies on all bleeders via the vein so I'm told. In from the neck and down through the vein so there's no chance of any accidental damage.

The poor registrar who performed the biopsy was ever so apologetic and guilt ridden and really rather attractive and I'm sure he would have taken me out to dinner to apologise had Ade not been by my side during most of my stay.

So, my "Plan" (same voice) consists of taking my clotting factor levels after admission tomorrow - the day prior to the op. Then giving me enough factor to get me to levels of at least 100%. Then maintaining those levels by checking and, if necessary, topping up every six hours up to and beyond the op. Also they are going to give me a platelet transfusion before the op and tranexamic acid pills throughout - which should prevent any clots from breaking down, which as von Willie clots they are wont to do. I'll be kept in for at least 24 hours afterwards to monitor for any post-op haemorrhages.

Sound good huh?

Sounds like they are thinking about my treatment, anticipating problems and preparing for them, which to me is as good as it gets. I'm happy. I think Ade is, although he is bound to be worried because his only experience of me being hospitalised was the cock up occasion. Hopefully a straightforward time in hospital will restore some of his faith and ease his concerns slightly?

I guess I'm used to being in hospital, used to handing over control of my welfare to healthcare teams and not worrying about it. After so many years. I think if I was watching someone else having an op then I'd be far more worried about them than about my own - funny that.

When they ultrasounded me earlier this year to see if there was anything adding to my heavy bleeding the scan lady (radiologist?) thought I might have endometriosis. The gynae thought that it looked more like a septum in the womb - see artwork above. This is where the top wall of the womb is either extending down into the womb or is fallen down into the womb. Looking at it from below (laparoscopy) will show if there is endometriosis or a septum. Looking from above (hysteroscopy) will tell him if the top wall of the womb has grown down or fallen down. Then he can deal with both options. Does any of this make sense?? I'm hoping it will when he comes and sees me tomorrow!

I'm supposed to be in for about three days and they're doing it all under general anaesthetic which I much prefer, could do with a good sleep!

My main concern right now is - should I touch up my toenail polish for the procedure or do I have to remove all nail polish for the op - help, I can't remember??!!

I'll let you know how it goes...

xxx

Random Acts of Bloodloss

2007-11-15T16:54:00.000Z

Not terribly dramatic I know, just a few little bloody snippets . . . won't impress you haemo's out there!

X

Normal Service Will Be Resumed...

2007-11-12T17:53:00.000Z

... honestly it will! Just not sure when.

X

Bleeding Stats for September

2007-10-05T17:30:00.000Z

I know! You're overwhelmed with statistics and you never even liked them at school let alone in your web browsing leisure time! I'm sorry - I never got round to doing Augusts so I thought I'd just stick em both up in one go.

This was my 29 day period for September- taking Norethisterone 5mg 3 times a day - yes, I did say 29 days! It would appear that the hormones are reducing the volume and increasing the length - hurray. It also means that whereas before taking the Norethisterone I could tell when I'd start a period, now I don't have a clue and pretty much feel like I'm bleeding all the damn time. Less bleeding though, so that's good, right?

Mooncup

Not used this month - after my initial experience I was a teensy bit reluctant, however if the level of bleeding remains lower then I will have another go in November. Anyone care to join me in the Mooncup experiment?

Tampons

Heavy 7

Sodden to the point of being past absorption, falls out when string gently pulled, lands like a broken milk bottle, often accompanied by large and frankly revolting looking clots.

Woohoo! Very little excessive bleeding and that feels soooo good.

Medium 49

Some traces of white left on tampon, may be clots hanging on for grim life but not always, takes a little pull to remove.

Medium is the new heavy. But if you think that this is over 29 days then that's actually not bad at all.

Light 44

Slightly bloody, generally at least half covered, takes a sharp pull to remove, not many of these as you can see.

As expected this figure has risen as the hormones kicked in.

Towels

Heavy 0

Sodden to the point of leaking out all over clothing and causing “ooo I just sat in something brown” embarrassment, feels as heavy as a suitcase exceeding the airline limits, requires careful disposal not to promote leakage.

Now that's good. No leakages.

Medium 23

Some traces of white left on towel, could squeeze in a few more ml of blood to the super absorbent core if you were really determined.

Again - not bad for a 29 dayer.

Light 20

Slightly bloody, looks less like road kill has occurred in one’s pant and more like you’re having a fairly normal monthly bleed.

Up on the last couple of months but I don't care - this is light soiling (ooo I hate that word - uck).

The increase in length has surprised me this month, in fact I've not actually stopped bleeding since the 2nd September and have just started bleeding a bit heavier over the last couple of days.

But hey, I'm still not losing anywhere near as much blood as I have been and it may improve over the coming months even more. I'll keep popping the iron pills and soon I'll be raring to go - just you watch :)

P.S. Ade and I are off on our jolly holidays for the next couple of weeks, so feel free not to check in because I doubt I'll be updating this while I'm away. Saying that there may be an internet connection in the hotel - hmmmmm . . .

Bleeding Stats for August

2007-10-05T17:11:00.000Z

This was my 16 day period for August - started taking Norethisterone 5mg 3 times a day when this period started.

Mooncup

Full to overflowing 11

Totally full to bursting, clots sloshing about, dam bust effect on towel, which was an absolute necessity, very messy.

Of these 8 were in the 10 hours that I posted about. The other 3 were a few days later and I still had the same outpouring, thus have not used them yet since.

Half full 1

As name suggests.

Tampons

Heavy 38

Sodden to the point of being past absorption, falls out when string gently pulled, lands like a broken milk bottle, often accompanied by large and frankly revolting looking clots.

This figure is almost a third of the amount in July - a sign that the pills kicked in almost immediately.

Medium 14

Some traces of white left on tampon, may be clots hanging on for grim life but not always, takes a little pull to remove.

Just over half of July's quota.

Light 4

Slightly bloody, generally at least half covered, takes a sharp pull to remove, not many of these as you can see.

More than July and expecting this figure to rise as the hormones kick in.

Towels

Heavy 9

This figure went up but that was mainly achieved due the Mooncup period, as it is now known :)

Medium 9

Some traces of white left on towel, could squeeze in a few more ml of blood to the super absorbent core if you were really determined.

This is an improvement on last month.

Light 0

Slightly bloody, looks less like road kill has occurred in one’s pant and more like you’re having a fairly normal monthly bleed.

This although it was still a fairly lengthy bleed was much improved over July and made life much easier to manage. However because I didn't know what to expect I still was prepared, as all good Brownies are, for an explosion of menstruation at any given time.

Love is flower like; Friendship is like a sheltering tree.

2007-09-29T14:50:00.001Z

A flower's appeal is in its contradictions - so delicate in form yet strong in fragrance, so small in size yet big in beauty, so short in life yet long on effect. ~Adabella Radici

Bread feeds the body, indeed, but flowers feed also the soul. ~The Koran

On Thursday 27 September Ade and I had our 4th wedding anniversary. We've been together for 8 years and 5 months altogether. On Thursday the flowers pictured above were delivered. The first flowers Ade has ever given me in all the time we've been together.

He doesn't like giving flowers because they die - very true - but they do make me feel special and it is sooo lovely to feel special. Thanks hon.

This quote is for you Ade, but don't let it put you off:

Why do people give each other flowers? To celebrate various important occasions, they're killing living creatures? Why restrict it to plants? "Sweetheart, let's make up. Have this deceased squirrel. ~The Washington Post

Happy Anniversary :)

X

Who Do I Think I Am?

2007-09-17T15:39:00.000Z

Since I decided earlier this year to find out more about my birth family I have made a little progress:

Rang Isle of Man Adoption Service - found the number on-line and spoke to a social worker who gave me the number of the Birmingham branch of the National Children's Home (NCH) and a name to contact, to try and get my adoption records.
He said I would need proof of ID and my adoption certificate in order to access my records.
Rang NCH Birmingham - left message for the woman I needed to speak to, asking for information.
Asked mum and dad for adoption certificate.
Mum and dad gave me more correspondence they received and notes they made at the time of my adoption - they have a record of my birth name.
General Register Office - they manage the Adoption Contact Register which exists to put adopted people and their birth relatives in touch with each other if that is what they both wish. Part 1 of the Contact Register is for adopted adults to record their wishes for contact or no contact with birth relatives. Part 2 of the Contact Register is for birth relatives to record their wishes for contact or no contact with the adopted person.
Sent application to go on part 1 of Adoption Contact Register - recording wish for contact.
Rang General Register Office - they maintain a record of adoptions made on the authority of courts in England and Wales in the Adopted Children Register. At 18, an adopted person can apply for a certificate of their original birth registration, via the Access to Birth Records service at the General Register Office. The General Register Office cannot help with accessing IOM birth records. Gave me a number to try in IOM.
Rang IOM General Registry - said they might not have records as would have been handled by NCH but are sending an application form.
Mum and dad found small birth certificate - looking for adoption certificate.
NCH Birmingham - the woman rang and is sending me a form to fill in. They are very busy and warned that it might be a while before anyone got back to me.
Filled in and posted NCH Access to Personal Records leaflet I'd picked up.
Filled in and posted NCH Access to Birth Records for Adoptees leaflet I'd picked up.
Received application form for Access to Birth Records form from IOM General Registry - may be the same as NCH form which I've already sent so I'll wait and see results of that one first.
Registered on Ancestry.co.uk - looked for any people with my birth surname from IOM - no matches.
Received letter from NCH Birmingham - they do have records of my adoption, due to their operating a waiting list I will be contacted in 4 - 6 weeks for an appointment.
Received a letter from the Adoption Contact Register to inform me that no relatives were registered on part 2. This means no-one has registered wishing contact with me, but also that no-one has registered wishing no contact with me.
Appointment come through for NCH Birmingham.
Saw social worker at NCH Birmingham - discussed the implications of tracing birth family, possible outcomes, what I was hoping for, what I was expecting, best and worse case scenarios. She asked if I wanted to look at my adoption record. Ade and I read it all. From before my birth up to my transfer to Frodsham and my adoption. She asked if I wanted copies of all the information in the file. Obviously I said "Yes please!"

So here it is - my adoption file!

It contains my little period of previously unknown personal history. The clues with which to trace my birth relatives and my own ancestry might well be inside.

Will the clues be there? Will they enable me to find my roots and follow them into my past? Will I find what I'm looking for? What is it I am looking for??

It remains to be seen...

Full Moon

2007-09-06T12:13:00.001Z

Description of Mooncup Activities written at time of use - 14 August 2007

1.00pm
Insertion

2.30pm
Towel totally saturated.
Mooncup removed with a little difficulty.
Suction was fine so no leakage due to inaccurate insertion.
Cup totally full up.
Sloppy clots in cup and falling out after removal.
Very messy.
Shook out into toilet bowl.
Flung into sink.
Blood on carpet.
Must wipe with loo roll first next time.
Washed and reinserted.
30ml collected - many more ml in towel and flooding out

3.15pm
Cup full.
Clotty.
Messy.
Shook out cup in loo.
Washed in sink and reinserted.
30ml collected - many more ml in towel and flooding out

5.00pm
Cup full.
Sloppy clots.
Very messy.
Cannot remove without getting hand covered in blood.
Much less hygenic than tampon removal.
Difficult to clean the cup with toilet tissue without getting blood everywhere.
Removal is accompanied by squelching noises as suction is released.
Can't imagine that in a public loo.
Washed in sink and reinserted.
30ml collected - many more ml in towel and flooding out

6.30pm
Full.
Messy.
Tried to just use toilet tissue to clean - as if in public loo.
Not very good job.
30ml collected - many more ml in towel and flooding out

8.00pm
Half full.
Topped up with sloppy clots.
Mmm lovely.
Shook out cup in loo.
Washed in sink and reinserted.
15ml counted

9.30pm
Full.
Clotty.
Messy.
Noisy squelches.
Shook out cup in loo.
Washed in sink and reinserted.
Yuck.
30ml collected - many more ml in towel and flooding out
Definitely leaking and saturating towel quicker than when using giant tampons.

10.00pm
Full.
Clotty.
Messy.
Sticky fingers.
Shook out cup in loo.
Washed in sink and reinserted.
30ml collected - many more ml in towel and flooding out

11.00pm
Full.
Clotty.
Messy.
Sticky fingers.
Shook out cup in loo.
Washed in sink.
30ml collected - many more ml in towel and flooding out

GIVEN UP!!

Total collected over 10 hours = 225ml

Do you remember this quote from an earlier post:
"In order for a period to be considered heavy - according to the Mooncup website - one would be losing "80mls+ produced over the whole cycle"."

I've produced 225 mls in 10 hours - that's 1/36th of an average 15 day cycle for me, and that doesn't include the extra extreme loss into the towel and whilst on the loo, admittedly it was a heavy day but still....

Not hugely surprising perhaps, but from wanting to measure my blood loss, I now find it a daunting prospect - I'm not sure I want to know exactly how much beyond normal I am thanks very much.

I tried the Mooncup again a couple of days later. A day I thought was less heavy, more moderate blood loss. Same problem. Did not take many minutes to fill up. Then leaking sensation.

Forgot to mention - when the Mooncup is overflowing I am treated to sound effects. When I move I squelch. Now that's delightful.

X

Am I over the Mooncup??

2007-08-21T09:54:00.000Z

It has been some time since I blogged my initial cup insertion. Almost two weeks in fact. So what's the score? How's it held up? What's it held up? And what's it not held up?

Well...

That first 3 a.m. go was interesting to say the least. Having written my post and gone back to bed at about 4 a.m. I pondered for a while longer unable to sleep. How would I know when the Mooncup was full? I obviously had a massive, mattress sized night time towel on, so if there were to be any overflow it wouldn't stain my burgundy sheets and my waterproof mattress protector. But I was thinking about the suction. The suction that kept the Mooncup in place. Clever idea. Did it mean that there would be no spillage? Nothing would get past the vacuum sealed rim? Hmmmm.

If that was the case then what? After the cup was full? Would the cup be as tight as the Hoover dam. Would the flow then back up? Could it reverse fill my womb to overflowing? And with no outlet would it leech through my blood vessels and into the rest of my body? Pushing its way slowly up me, filling me up like a hot water bottle. Until there was just a little air left in the top of my head. Would bloody tears spring from my eyes? That's happened in the past - from a nose bleed not being able to come out my nose quick enough.

I awoke a few hours later and felt around for seepage from my bodily orifi - nothing - phew!

I made my way to the loo. Night time towel unsullied - wow - that's unusual. This thing was good! I poked my fingers around trying to find my little stalk and pulled. Now I could feel the suction. As it slowly released I braced myself for a dambursting outpour. Closed my eyes and pulled...

Nothing.

No splashing, no gushing, no noise whatsoever! I opened one eye. Clean bowl. I opened the other eye and brought the Mooncup into my line of sight. Nothing in it! Godammit!

There was a tiny trace of blood around the rim but that was it. Had I had some kind of allergic reaction? Had my blood been repelled from the silicon cup? Was it waiting like an ocean that had been parted, ready to bomb on out the moment the coast was clear? I braced myself again...

Nothing.

The bleeding had stopped. Pretty much the instant I inserted the Mooncup my bleeding had stopped. Now that was annoying.

I tend to be an unpredictable bleeder at the best of times. My bleeding patterns are generally undefinable except by being consistently inconsistent. So it wasn't an impossibility that my period had started as a gusher and dried up over night.

This doesn't mean it's over for this month - oooooh noooo. It will be back. Sooner or later. Sooner probly. Heavier or lighter. Heavier probly. Who knows where, who knows when... Not me that's for sure.

I cleaned out my cup and popped it back in its little baggy for next time.

Next time came within four days...

The Wrong Trousers

2007-08-15T18:54:00.000Z

The White Trousers are indeed wrong - very wrong.

When I was a teenager going through period hell there are a number of incidents that remain indelibly etched in red in my rather shabby memory.

First was a sponsored walk that was organised by my school every year. You could choose whether you wanted to do the 5, 10 or 20 miles. I had previously done the 5 miles and although I couldn't walk for a week afterwards cos of ankle bleeds I was determined to do the 10 mile the next year with my friends.

However, dodgy joints apart, there was something different about me that year. I had hit puberty - like a truck full of ketchup ramming into a bridge support, there was red stuff everywhere. I was getting used to carrying masses of sanitary towels, feeling like I was in nappies again - and getting taken to the hospital for factor injections or blood transfusions every month.

Needless to say I was a bloody minded 13 year old :) and decided to enrol onto the 10 mile walk against my parents' better advice. With them assuring me that if I needed them I should get one of the Marshalls, posted every few miles around the course, to give them a bell. I'm not going to need that I thought!

Off I set. I seem to remember it was a horrible day. Raining and windy and cold. I was wearing a very untrendy mac and hiking boots. Waterproof trousers would have been useful but I think I thought I was too cool for those - yeh, in that mac!

The course is so designed that there are toilets situated fairly regularly - either public or private at people's houses, opened just for the day of the walks. I used them all. I was no more than two thirds of the way round when I ran out of towels. And I'd taken plenty, I'd thought. I didn't want to give up so I kept going. Walking in the rain. Getting wetter.

It wasn't long before I was aware that my 'nappy' was feeling more and more sodden. I felt uncomfortably duck like in my gait, with a waddle and a bulky posterior. I kept walking. Trying to ignore the leaking sensation, less of a leak more of a deluge by now.

At the next checkpoint I gave in and asked the Marshall to ring my dad. When he arrived I had to use my mac as a seat covering to protect it from the blood that was flooding through my jeans. Dad drove a defeated daughter home.

The next time I specifically recall a leaking incident was the next summer on a Quaker youngsters holiday in York. I was 14. There were probably about 60 of us all staying at the Mount School and having trips out and doing activities and crafts. One morning a large group of us were in a meeting of worship. Sitting in Quakerly silence for half an hour, as we did most mornings. I was wearing a light blue pencil skirt, my favourite, and a blue top.

Part way through this meeting I felt something in the pant department. I was mid-period and wearing a sanitary towel but in those days they were much less efficient at absorbing the blood and it wasn't long before I could sense that the towel was failing in its containment efforts. I wasn't very confident and didn't feel able to get up, walk out of the room and go to the loo to take preventative measures with all my peers sat in silence watching me. I didn't want any attention drawn to myself, so I sat there in the corner, feeling the blood flow and waiting for the meeting to end.

Once it had ended people took their time in leaving. I tried to wait til the room had emptied but I realised by that point I just needed to get out of there. I had no jumper or jacket on to wrap around my waist and conceal my embarrassment so when I stood up one of the lads saw the back of my light blue skirt and said

"Ewww, you've sat in something!"

I made a great show of shock horror, craning my neck to see the offending stain, examining my seat and suggesting offhandedly,

"I must have sat in some chocolate..."

And exited stage left tout suite! Sounds like I was cool about it, but believe me as a girl of 14 who cared what others thought, I was mortified. Hence I suppose that has stayed in my mind ever since.

I don't think I wore anything light coloured after that. Not for years. Not until I was on extreme hormone pill doses which was the only thing that calmed down the bleeding. And that had to be taken continuously because any gaps and bleeding was still horrific.

I always use burgundy coloured sheets - I've been drawn to that colour ever since I first went to college and needed to supply my own sheets. Just recently I've started using white ones and immediately reminded myself why that wasn't a good idea by bleeding all over them from a dicky gum!

So why the white trousers?? Why indeed, uncertain, Helen, anonymous - you are quite right to think me insane.

I bought them about 4 years ago. I was still on continuous hormone replacement therapy and had been for about 15 years. So 15 years with no periods whatsoever. None. Still never bought any white trousers cos you never know when you might scratch yourself on a bramble, or meet with a cat's claw, either of which can cause a good two or three hours of persistent bleeding - more than enough to ruin any white clobber.

I think it was coming up to my wedding and we were planning our honeymoon. I'd gone to Debenhams to look for some holiday clothes and found the trousers. I wouldn't have even tried them on if they weren't in the sale :) But they were and they dazzled me into thinking I'd look glam and gorgeous on my honeymoon, swanning around like a film star in white pants. I forgot my severe bleeding condition in an attempt to be a foxy lady. I bought them.

Wore them once on the moon and immediately spilled red wine or some other such coloured concoction down them. Since then they've pretty much been relegated to the 'wear on holiday if you are going somewhere very posh but not if you're likely to be eating or drinking whilst there' category - i.e. never worn!!

Until this year when the trend for super long tops came back in.

Aha! I now have a couple of tops that are floaty and loooong. Down to mid thigh if not a tad longer. I can wear trousers with my bum concealed. And that to me means I can wear enormous knickers with night-time sanitary towels and no-one will ever know!! Hurrah!!

So. I got out my White Trousers. I've even worn them a couple of times. Admittedly not while I've been mid-period, i.e. most of every month. But I did wear them with said floaty number for a meal out with hubby. And managed to keep them clean.

So why did I wear them last week, when I'd just started bleeding? And with a top barely skimming my buttocks - there I've said it again! What possessed me?? God only knows... All I can say is that I had a handbag bursting with sanitary prods, I kept my back to the toilet door and never ventured more than 3 metres from that door. I went to the loo more often than even I with my toilet addiction normally do and I didn't relax the entire evening, not once. But it was my sister in laws celebratory engagement drinks and if you can't say to hell with it I'm wearing my White Trousers and damn the bloody consequences then, when can you eh??

You gotta rebel sometime, even if it is only in the form of light coloured clothing ;)

X

Mooncupdate...

2007-08-08T03:48:00.000Z

Cheers! Or perhaps more aptly - Bottoms Up! Or if we're being pernickity - Up Bottom!

Was thinking of taking a 'half full' photo for the celebratory glass of red / cup of red effect. Then realised that would be one blood sodden step too far! This post would already receive an X in the gore ratings but that's without a photo of me hoisting aloft a measure of my own fine vintage.

The news is this. It is 3a.m. and I'm mooning as we speak. I'm cupped up. Cupping myself. Full up with cup. The Mooncup's up! It's up! It's ... no, it's still up and showing no signs of coming down.

Well fancy that.

I was sat, only minutes ago, on my porcelain chair, contemplating my Mooncup. Earlier tonight we were on our way out to celebrate Ade's sister Jackie's engagement - by way of an enormous sign, on a lorry, parked up outside her office window, Bob you are a surprisingly creative chap and many congratulations to you both - when I felt something dribble. Not enough to fill a milk bottle but more than enough for a thimble. Given that I didn't have a thimble the choice was Mooncup or tampon. As we were going to the pub and I was wearing white trousers with a top barely skimming my buttocks (now there's a phrase I've always wanted to use!!) I needed a safe option so plumped for the latter, purely on the basis of experience. Thinking about it now, that was flawed logic based on my history of bloody bottoms.

After two near misses in the pub in the bloody pant department we were back home. On my way to bed I automatically inserted a Super Plus and then thought,

"Really should be trying the cup. That's it," thunk I, "if I'm up in the night" (if I'm up in the night hahaaa that's a wheeze) "I'll pop it in and see what happens."

So back to my porcelain chair at just before 3a.m. I'm sat perusing my Mooncup. It's too big!! I may not be a vestal virgin but it's no Eurotunnel and this baby looks pretty big to me! Hmmm. It looked clean and rubbery and really I didn't want to spoil it or soil it, but what's a trial if you don't use the thing.

I folded it up on itself as instructed and popped it in. Now when I say popped, I really mean shoved. With some resistance of a rubbery nature. Luckily the bleeding was such that once inside it was soggy enough to move into position. The position, that is, I wasn't sure of.

The instructions stated the cup should be worn lower down than a tampon, just inside the entrance to the vagina. Now I think I got it just about in the right spot. I could feel the bottom of the cup just inside and the stalk was poking out for easy removal.

According to a commentator on my last Mooncup post and to the leaflet accompanying the product - which is quite frankly enormous and as weighty as a loaded tampon, but does contain instructions in more languages than the Pope himself speaks - one should trim the stalk of the Mooncup to a comfortable length. Well, I hadn't planned for this middle of the night moment. I had no scissors or other trimming device to hand. Sod it. I'm only going to be horizontal - how proddy can it get?? I'll trim it in the morning.

And here I am, writing this long hand at my dining table at 3.38a.m. thinking "that feels weird." I'm not sure if it's the Mooncup itself . . . in fact, I can feel the Mooncup cup inside me - I presume I'll get used to that. But the stalk is definitely gonna have to go! The actual sensation is less prodding and more reminding me of a time I had a corrugated card contraption inside me to supposedly drain off internal bleeding. It was held in place - i.e. stopped from whooshing up inside me by the force of my vaginal suction :/ - by a carefully positioned baby's nappy pin. This stalky sensation takes me right back there.

My concern will be to leave enough stalk there to enable removal. I could trim it now I'm up and about I suppose, but having scrawled all this down after being unable to sleep, I'd like to get back to my sweet dreams thank you.

I'll leave the trimming and measuring - god, I sound like a Greengrocer, or should that be Redgrocer - til the morning.

Wish me luck.

X

There's 50 points to the person who spots the Fawlty Towers reference.

Many congratulations to Jac and Bob on their engagement - yippee!! xxx

Bleeding Stats for July

2007-08-07T13:44:00.000Z

Thought I'd stick my pictorial bleeding chart stats on here for your delectation :) This was my 17 day period for July.

Tampons

Heavy 97

Sodden to the point of being past absorption, falls out when string gently pulled, lands like a broken milk bottle, often accompanied by large and frankly revolting looking clots

Medium 26

Some traces of white left on tampon, may be clots hanging on for grim life but not always, takes a little pull to remove

Light 3

Slightly bloody, generally at least half covered, takes a sharp pull to remove, not many of these as you can see

Towels

Heavy 7

Sodden to the point of leaking out all over clothing and causing “ooo I just sat in something brown” embarrassment, feels as heavy as a sandbag in Upton on Severn, requires careful disposal not to promote leakage

Medium 12

Some traces of white left on towel, could squeeze in a few more ml of blood to the super absorbent core if you were really determined

Light 2

Slightly bloody, looks less like road kill has occurred in one’s pant and more like you’re having a fairly normal monthly bleed

How does that compare ladies – am I making a fuss over nothing? Do tell me if I am :)

Fly me to the Mooncup

2007-08-03T10:41:00.000Z

How many moon references can I think of ... I got a few more up my sleeve for future posts, don't you worry :)

I know you've been all excited, checking every day to see if indeed it is a yummy choccy pud, as uncertain suggested. Now that would be good. I'm sure you've not looked it up on Google like I would have ... well, I'll pretend you don't know and go with a big build up - are you ready???

Here it is - the Mooncup:

Oooo pretty isn't it! Love the little baggy and the pink ribbon.

Now what's inside ... is it a lip gloss? A delicate bracelet??

Ok, open the little bag and what's inside - it's a ...

Hmmmm, now what the heck is that?? Is it a plastic tulip? A baby turkey baster? A tiny bucket for removing flood water??

This should make it obvious...

Can you see that? Yes, it's a reusable menstrual cup!
Of course, you cry! I knew that all along!! How perfectly splendid!!!

Apparently they're big in the States according to my friend Helen - but then uncertain hadn't heard of it - or had you myc? My other friend emailed me and told me that she's been using a similar concept - the Keeper, nice name - for 6 years now. That's 6 years without using, without buying any tampons! That sounds good to me - it'll save me a fortune!! She's been recommending them to all her friends.

Here's the facts, as taken from Mooncup.co.uk:

The Mooncup is a reusable menstrual cup around two inches long and made from soft silicone rubber. It is worn internally like a tampon but collects menstrual fluid rather than absorbing. Unlike tampons the Mooncup is not a disposable product, so you only need to buy one.

It's not disposable, you see, you only buy one and re-use it. Re-use it. Hang on a minute ... how does that work??

The Mooncup can be cleaned in the same way as baby equipment: with sterilising fluid, or by boiling for five minutes in an open pan of water.

Oh I seeee ... you just boil it between uses, or stick it in a baby steriliser. How my gonna do that on a Pendolino to London? How my gonna do that at work, "sorry chaps just gotta boil the kettle to swill out my Mooncup". How my gonna do that at home when I can't leave the comfort of the toilet to head to the kitchen for a spot of sterilising because I'll leave the carpet looking like Jack the Ripper's been reincarnated...

You can still use your Mooncup in Public toilets. Simply take a small bottle
of water into the toilet with you and rinse it with this. Alternatively you
can wipe with toilet paper and give your Mooncup a thorough clean at a more convenient time.

Ahhh that's a bit more like it. In fact that's what my friend suggested, although she can get away with wearing hers for 24 hours on the trot generally.

The Mooncup will hold 30ml of fluid, which is roughly one third of the average total produced each period. A light seal is formed with your vaginal walls allowing your menstrual fluid to pass into the Mooncup without leakage or odour. You will probably find that you need to empty your Mooncup less frequently than you currently replace towels or tampons.

The average total produced each period is 60ml - now that's interesting. That's what appeals to me, not only emptying less frequently than I currently replace tampons - sometimes as often as every half hour - but that I can actually measure my blood loss. Does that sound totally weird?? I'm curious. Curious to know just how much I'm actually losing each month. I'm not getting that anaemic - HBC 11.2 (June) and Ferritin 12 - so therefore I can't be bleeding that much, right??

In order for a period to be considered heavy - according to the Mooncup website - one would be losing "80mls+ produced over the whole cycle". Will I be anywhere near that? I think so, knowing my tampon stats but we'll see.

I'm going to give it a go next period - in a week or so if my menstrual calendar is at all predictable, which it usually isn't!! I'm not entirely keen on the cleaning the cup out in the sink bit, or the squatting to get it in and out, or wearing it lower down the vagina than a tampon, or trying to remove it without spilling blood around like a chocolate fountain. But - I do like the idea of using less towels and tampons - from an environmental and economicental and mental point of view, I like the idea of accurately (if my hands are steady and the things not overflowing:) measuring my blood loss, and I like the idea of leaving it in and forgetting about it - maybe being able to walk into town and back without a public toilet dependency, maybe going swimming even??? It's possible apparently.

Wish me luck and send me bathroom cleaning products!

X

My Mooncup runneth over...

2007-07-18T11:01:00.000Z

I have been given the opportunity to try a Mooncup.

I will use it and to log on my blog how I get on.

Have you heard of the Mooncup? I hadn't.

Do you know what it's for? I didn't.

Has anyone reading this ever tried one??

Please let me know how it was for you...

Who am I again?

2007-07-13T08:36:00.000Z

Actually, it's not who am I?
Or where do I come from?
Or even - is there anyone out there?

It's more a case of mild curiosity and the Manx cat.

As an adopted person I have never felt any undeniable desires to trace my birth family. I was adopted at about 3 months old and have always felt totally happy and a part of that the family I grew up with. Mum and Dad told me from the very beginning of my memories that I was adopted and I never felt like I didn't know who I was. They made me a scrapbook to explain where I came from - how I'd flown over from the Isle of Man and how they'd come and picked me up from a children's home in Frodsham.

My brother who was also adopted had a different background and birth family to mine. He was adopted at the age of three and so had a history prior to coming to live with us. He never seemed as comfortable or settled in our extended family. He had been taken in and then rejected a number of times before coming to be with us and I believe that affected his ability to trust those who were supposed to care for him. I think he felt like he was obviously different and found it hard to accept this new family at face value. He looked into his background as a teenager and traced his birth family over time, becoming close to them and developing relationships - these weren't always easy but helped him understand himself I think. This in turn has perhaps led to an acceptance and appreciation of the parents and family that brought him up?

My lack of desire to find out about my birth family was purely a sign of my sense of belonging to my new family life and a happy childhood. We had a fair few problems to handle but I felt that I had a strong and loving family, dedicated to each other and of which I was very much a part.

When I hit 21 I remember thinking maybe now would be a good time to look into my past, where I came from. It was a milestone. I was in my final year at university and had plenty of family and friends to support my quest for information. However something stopped me moving from thought into action. That, thinking back, was Hepatitis C. I had found out in 1991 at the age of 17 that I had the virus and whilst it had not affected me at all and life was continuing as if I'd never heard of the virus, I felt like I couldn't look up my birth family and say:

"Hello, it's me, your long lost daughter - and by the way, not only have I got a severe bleeding disorder but I've also got hepatitis C - now you gonna make me a cup of tea or what . . ."

This was enough to put me off the idea and to get on with life and what that threw at me. Again there were no feelings of dissatisfaction or of incompleteness, I suppose I had other things on my mind.

This year I have again been having health problems, both bleeding and chronic fatigue. I have had more time off, which has given me time to think about my future and surprisingly this had led to me thinking about my past.

I've realised the longer I leave finding out about my birth parents, the lower the chances of finding them - who knows what's happened to them, where their lives have taken them over the years. It's not as simple as looking them up on the internet and getting an address and bobbing on round. Or is it?

I've acknowledged that I am curious about them. Purely in terms of - will there be any family resemblances? My adoptive family share many features and personality traits which link them together - I do miss that, is there someone out there with my nose? My dodgy sense of humour? Or in fact if I did find anyone would my upbringing have influenced my life so very much that we actually had very little in common - except for perhaps the nose?

The point is I don't know. And I'm coming to the realisation that I can actually find out if I put my mind to it. And it might take months, it might take years, but at least then the pieces will all have been fitted together - even if there are some missing and maybe I never want to do the jigsaw again.

Dream Ending?

2007-07-09T11:09:00.000Z

We are standing outside a court building. The doorway is carved stone and dominates the building. There is a group of us. It's not clear who I'm with but it's not mum and dad or Ade, men I don't recognise.

Someone approaches through the doors to the court. He looks official, he is wearing a suit, carrying a folder. I recognise him but can't put a name to his face right now. He comes over to us. "The results are back", he says.

"What did they say?" someone asks.

"They are awarding compensation," he states.

There is a collective sigh of relief. The tension, which I had not noticed until now, dissipates.

He continues, "There are conditions. If you got the letter suggesting you might have received blood products contaminated with vCJD then you will be compensated. Otherwise not."

"What?" I am confused. "There were two letters, what if you got the other one - saying there was a risk of you getting vCJD from your treatment?"

"No compensation if you got that letter, only if you got the other one."

I ask, "What if you got the second letter but still go on to develop vCJD?"

"That won't happen," he responded. "According to the medical experts if you had received contaminated blood you would have been ill by now. Therefore you won't get ill in the future, so they have not made plans for long term compensation."

"That doesn't make any sense! Those who had the first letter aren't ill, so they obviously haven't got vCJD either! Why compensate some for the knowledge that they might have received it, but not others who have the same knowledge - when as you say neither group will actually get ill." My voice is raised, I bang my fist against my chest, "What about me!"

I feel dizzy and it seems the scene in front of me is receding at the speed of light. My vision goes black and I feel myself falling onto my knees. My head is down on the floor in front of me and my arms are wrapped around my head. I am wailing. Uncontrollably keening a lament. Mourning a death - I cannot stop. I hurt like I have been pierced with a shaft of light. I am being ripped apart on the pavement.

I force myself awake but the torment lingers on.

It's oh so quiet...

2007-06-20T17:20:00.000Z

Hello there.

I am still here.
Still at home.
Still feeling exhausted most of the time.
Still bleeding heavily each month and in between.

I don't feel like there is much else to say, other than I'm still feeling rubbish, bleeding a fair bit and you've heard that before. So, not wishing to bore anyone I'll be quiet for a bit.

If you ask, I'll probly say I'm fine - I look well and it's tiring explaining the reality.

I do have lots to say about the inquiry that I've been determinedly attending, but I've not got the energy to write that up yet. I will get round to it. Along with all the other things I intend to get round to when I'm up to it. I'm not slacking, really I'm not. Ade will back me up. I'm just struggling to get on with anything right now. Even putting this on here feels like I'm moan moan moaning, which is the last thing I want, but I know you've been looking for an update.

Bear with me and normal service will be resumed - when my arse moves from neutral into first, when my body and brain bounce back from this, this ... just spent 20 minutes trying to come up with appropriate description and failed ... answers on a postcard please.

x

Hungover

2007-05-23T08:25:00.001Z

Hurray I hear you cry!! Another photo of Ros with a bloody mush - woohoo!!

I'm hungover.

Not from quaffing too much bolly dahling, not from concocting one too many cocktails, not from swigging seven pints of Swinesheads finest lager but from a lovely, entirely sober, weekend away.

Last weekend I was in darkest Lincs at a Hepaptitis C Forum social shindig. It was something I've not done before - but as I have recently been introduced to the forum and have been hugely benefiting from the support, love and knowledge of the peeps on there - I thought that I'd try and make it up there to put faces to lots of weird and wonderful names.

It was a wonderful and relaxing weekend but still exhausting. I travelled partly by train and the rest with Jason who was driving up from London with another hepper called Wolfie. Not only the travelling but the chatting, eating and drinking of tea has thoroughly worn me out! You may just be able to tell by this photo taken on Monday morning. It's a hangover of the knackered non-alcoholic kind!!

I am feeling only partially recovered and could do with the rest of the week in bed but no, I'm off to London today. The reason for this madness is that the public inquiry into contaminated blood and blood products having its second day tomorrow and I'm determined to be there to support my fellow bleeders who are giving evidence. It should be fascinating.

Wish me luck and I'll let you know how I got on ...

xx

Southern Comfort

2007-05-14T16:20:00.000Z

I was away last week.

Ade and I drove down to stay with our friends in Fernhurst over the bank holiday. We had a lovely bbq with some very meaty and very yummy burgers and asparagus and potato salad; and did lots of chatting and resting. Their son, who is now 2, is a lovely little chap who spent most of the time we were there laughing and smiling at us. He loved Ade and wanted to play with him and show him stuff.

Kit and I watched The Departed with Jack Nicholson and Leo DiCaprio and Matt Damon - very good film which you will probly be best off watching when you've not had a glass of vino and are falling asleep cos you will need to pay attention. Espeshially when the husbands got back from the pub mid way into the movie and then need talking through the plot so far, and kept asking - who's he? Who's he again? And who's his father?

On the Monday evening after more relaxing and eating pots and pots of never ending potato salad Ade set off to drive back home alone and I stayed on for another night.

On the Tuesday I travelled to Havant to stay with Louise and her mum by the seaside. That was very relaxing indeed and Louise's mum was extremely careful not to talk to me too much as it would, she'd been informed, tire me out. And it would of, but she was very careful. Actually we talked a fair bit anyway but then she'd say - right, I'm not talking to you for an hour, and I'd go and read my book. In her beautiful lounge with the glass wall overlooking their beautiful garden. Very nice.

She did take me on a little trip out to look at lampshades and tried to make me go for a bracing walk along the seafront - sea air would do me good my mum said. I refused to leave the car as it was blowing a force 10 gale and raining and the lady walking her dog was being swept along and the wind surfers were kite surfing. So she opened the window and swept me with the through draft for my own benefit - I felt sooo much better - thanks Mrs M!! ;)

I was injecting twice a day nearly every day I was on my minibreak, so I had my coolbag full of factor to last me the few days away.

Also, because I was bleeding I had a veritable pick and mix of sanitary prods in a suitcase all to itself which I worked my way through. Good job I've got so many toiletry bags for all those damn toiletries!!

I was getting the train home so I was happy to get through my stash and empty out my luggage. It was just a shame not to fill it with a load of freshly purchased shopping but you can't have it all.

The change of scene did me the world of good I think. Thank you very much to my kind hosts for having me stay.

The whole coming home mularky left me pretty exhausted and yesterday was a total write off, dressing gown day (which shocked the hairdresser when he turned up unremembered to do me a cut at 7p.m.).

The bleeding has eased now thankfully, so this week I might get some rest from twelve hourly jabs and a debilitating toilet habit...

I'm sorry I haven't a clue...

2007-04-27T10:41:00.001Z

I would like to extend a heartfelt apology to all and anyone I may have had a conversation with recently.

I used to consider myself to be a good friend. Someone with an ability to listen to what the person I'm talking with is saying, and to take it in. To care about the conversation we are having, to remember it for future conversations. That is one of the key things that makes a good friend in my opinion.

Lately I have been listening but hearing nothing. I try really hard to remember what someone is saying; indeed I may be fascinated by it at the time. But more often than not if you ask me afterwards what was discussed I can perhaps recall 20% and I think that's being optimistic!

Some of it might return in time, snippets flying back into my consciousness. Or if something was mentioned a memory could be triggered off like a hot air balloon rising out of the depths of my mind.

I attribute this in the main to the interferon and ribavirin treatment I had for Hepatitis C. I’m sure my brain has not been the same since then. Before the treatment and problems with Hepatitis C I was proud of my memory, at one stage I could remember all my friends’ birthdays, their phone numbers and addresses down to postcode level. Maybe it is the age of the mobile phone - who needs to remember anything these days when I can pop it in my Sony Ericsson organiser - I'm convinced it's more than that.

Ok, I hear you say, I'm 33, maybe it's my age?? Whenever I mention my forgetfulness to anyone they say - 'Oh yes, I do that, that's just old age', I'm 33! And I remember practically nothing!! That's just not right. Or at least it isn't good enough for me.

I am failing in my attempt to be a friend, I am rubbish at what I used to pride myself on. It is so important and I just cannot do it like I used to.

I am now desperately scrabbling round the inside of my fluffy head for an example.

I have friends who are new mums working part time. They have told me time and time again which days they work and which they are at home. I couldn’t tell you now when they’re at home if you offered me a large box of Malteasers. I know I’ve been told. I know I listened at the time. I’m too embarrassed to ask yet again and really look like I don’t care because I do. So I don’t ask. And therefore look like I don’t care!

It's not just conversations. If anyone asks me to do anything for them, both Ade and his mother will testify to this, I will absolutely not remember unless it is written down in a place that is staring me in the face. The number of times Ade says, have you done suchasuch? I reply, whatawhat? You know, the suchasuch we discussed yesterday ... he grimaces at my blank expression. The suchasuch!! Ummmm, remind me again... What ever it was had gone like puddles in the sunshine until he prompted me. Sorry to him also, I honestly am not doing it on purpose just to annoy.

Work had, before my latest period of time off, become affected - I was swimming in a sea of things to remember hoping that I wouldn't get totally swamped and sink to the bottom with a soft plop. As everyone suggests and I always do - I took notes of everything. Every conversation, every meeting, every training session. I had four notebooks on the go for different areas. I had an appraisal and one of my peer review comments was 'Ros makes an excellent scribe and takes fabulous meeting minutes' - do I ever!! It's either that or become totally non-functioning!

I'm not just being lazy, I try really hard during a conversation to hold onto the important bits for longer than the duration of the conversation. I feel like my brain is mushy, that the interferon brain fog got hold of my tiny head and never let it go. My homoeopath has told me that the memory is one of the things the body can do without when it has to focus on repairing other areas. He thinks that as I have chronic fatigue the memory will be one of the last things to return to normal. I hope it does eventually.

So sorry to one and all - please forgive me if I forget your birthday again, forget your family’s birthdays, forget any detail you've told me in the past, forget your name (luckily that hasn’t happened yet thank god, I will check myself in for tests when it does!). I'm not trying to be obtuse. Don't take it personally I'm sorry I haven't a clue...

Bathroom Phobia

2007-04-23T15:19:00.000Z

We spent Saturday night round at our good friends' house. They had invited us round for a relaxed takeaway and a bottle of wine.

I had vowed that morning I wasn't going to drink any more, just in case that was contributing to how I'm feeling at the moment. My current bout of exhaustion may well be linked to my liver still, as well as the tidal waves of bleeding. However I was offered a Prosecco and Cassis and being rubbish at sticking to things and not one to resist a new concoction, I accepted. It was very yummy and a subtle red colour, my favourite shade.

I began bleeding again on Friday. Having worked out that it was 8 days since I had last stopped I was not terribly impressed. It came on heavy and suddenly and I was glad to be at home with my crate of sanitary accoutrements, not in the middle of Kidderminster or on a train or something less convenient. I have already become extremely familiar with the M&S loo but as I wasn't expecting to be starting again quite so soon I would have been unlikely to have my purse full of products.

By Saturday night I was prepared and took a large handbag full of Always Ultra and a cool bag full of Haemate P round to our friends. I needed to take the drugs because I am still doing the injections every 12 hours and would be due to shoot up at 9pm.

By the time it was 9pm I'd had a couple of Prosecco & Cassis combo's and was shooting up in their kitchen slightly under the influence m'lud. Didn't affect my technique - still got a vein in one. And not a drop of blood anywhere - even on the little nest of kitchen roll I'd put out to protect their table.

The worst thing for me was using the downstairs loo with a heavy heavy bleed going on. I'm going to be honest about it here, so they may never invite us again, or in fact want to speak to me at all! When my period is that heavy and you're pulling the string (ladies I'm sorry to mention this but hey, that's how it is; fellas if you have no idea what I'm on about please move along...) it literally takes the tiniest pull and the weight plummets the thing out and thudding into the bowl. In the course of this I can often get somewhat bloody through no fault of my own - ewww sorry!! It's then a challenge of not getting blood splatters a la C.S.I. around the smallest room while I try and clean up as soon and as hygenically as I can. My friend had plenty of soap - two bottles - so that was ok. I am cleaner than clean as far as this goes so please don't stop inviting me round!

You'll understand why I have an uncomfortably close relationship with public loos. If I had a problem using a public loo or any kind of bathroom phobia I'd really be in trouble when I was bleeding. I would not like to remain in my house all the time purely so that I can use a clean toilet equipped with plenty of soap, a decent bin and an unending supply of sanitary products. Sometimes if I'm up to being out and about it is nice not to have to stay in solely for the facilities.

From our recent trip to London I can advise you that the loos in Liberty's were extremely narrow and poorly lit. Now I don't need lighting particularly, I'm happy not to see the carnage in the bowl but a little bit of room to swing a tampon would be appreciated. It is a very nice shop with lots of lovely and slightly unconventional sofa's to sit on when a bit jaded, and fab hand creams to try but it is definitely let down by the bathrooms. And the poor lady who was in a wheelchair and couldn't get up the couple of steps into the loos on the fourth floor must've been really fed up. The disabled loo was on the second floor I think - maybe I should've tried them out.

Cafe Nero near Shafetsbury Avenue was appalling in the toilet stakes (I'm getting an idea for a book here, can you tell what it is yet...?). They had loo paper everywhere, more cramped stalls and blue lighting - what's that all about? It was like they were trying to detect old blood on the walls before I'd even been in there!! I could tell there was no soap so I declined to use that one and had enough padding to wait until I got to the Palace Theatre. Now there's a proper toilet. Plenty of room, lots of cubicles, easy to use bins, no shortage of loo paper, lots of soap and working hand driers, thank god for the Palace.

If I you do still want me to visit while it is my time of the month, i.e. more often than not, I will need room to move around the lavvy, a bin to pop the overzealous packaging in, decent uncrumbly loo roll and soap to clean up afterwards please.

M&S may well do wonderful food but often there is no loo roll, the bin is coughing up paper towels and the squirter is devoid of soap in the Kidderminster branch.

I'm thinking of ordering one of those hospital hand sanitiser thingy's to attach to myself when out. . .

Edited based on comments.

Did anyone watch Newsnight?

2007-04-18T10:37:00.000Z

I spoke to my friend Jason yesterday and he told me that there would be a feature on contaminated blood products on last night's Newsnight. The Independent Public Inquiry into Contaminated Blood and Blood Products was due to kick off today, so I assumed that was why Newsnight were running the story.

You'll normally find me in bed at 9pm so to stay up later was a challenge but with the help of a C.S.I. double header I just about made it to 10.30pm. Ade had gone to bed because he's been up at 5.30am that morning in was going to be doing that the following morning too.

I thought that having my own experience of infection with Hepatitis C, having been to many Haemophilia Society events and being involved in the campaign for compensation at one stage, the content of the report would be familiar to me.

I watched with growing sadness and disbelief as I realised how little I really knew. Both about how unsafe clotting factor products had been used even after safer treatments were available, about the possibility that bleeders were used in studies to understand the risks of HIV on human beings, how a child had been infected in the in 1983 at the age of 2 and had died at the age of 7.

I heard how a number of haemophiliacs had been infected and diagnosed with HIV and HCV and had not been told - some for even a number of years. What kind of medical care was that?? A kind that had a horrible sense of familiarity to me.

I was shocked and angered by the continued lack of responsibility that was being shown by the Department of Health. What was their sympathy worth...?

I really admire the people who appeared on the programme last night, they have been fighting for justice for many years at the same time that they are desperately fighting destructive viruses. I hope that the Inquiry will in some way take the fight forwards and finally get some acknowledgement, answers and some admission of wrongdoing. I hope that those still living with HIV, HCV, vCJD and who knows what other viruses will get some justice. I hope.

I am terribly sad about Colin, Pete and over 2000 other people with bleeding disorders who have lost their lives to these viruses. I am dedicating this post to all their memories.

xx

Link to the Newsnight feature - Blood Trials (thanks Ian):
http://news.bbc.co.uk/player/nol/newsid_6560000/newsid_6566300/6566349.stm?bw=bb&mp=rm
You'll need a media player to view it.

Link to the Indepent Public Inquiry website:
http://www.archercbbp.com/