HCV and Me - An Affair To Forget

You came into my life insidiously.

Like a demon you crawled under my skin,

through my veins and into the heart of me.

Unaware of the danger I plunged on,

not understanding what it was

I was introducing to myself.

You were there

from the very beginning,

intrinsically part of me.

But I knew nothing.

Ignorant of how you were taking over my body,

destroying my soul.

When, later on, I discovered you,

you blew me away.

Turned me upside down

dragged me inside out.

Possessing.

Obsessing.

Flung my life in an unexpected, unbalanced direction.

You exposed my dark and twisted self.

I was never to be the same.

I railed and fought to resist

the all encompassing nature 

of your poison.

Yet you clung to me,

weighing me down,

changing me,

infecting me,

draining me.

Now am I free of you?

Are you gone?

Have you left me, in peace?

Or still dangling,

turning like a body hanging from a tree,

waiting for the wind to pick me up

and play with me once again.

I hate you.

For the gifts you gave me.

The tumultuous emotional tornado,

the paralysing physical pain.

But you made me.

Who I am.

You are still hidden within.

There will always be a fragment of me

devoted to you.

Joking apart ...

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

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

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

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

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

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

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

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

May I Be Well...

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

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

Dr David R Hamilton's website

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

How Your Mind Can Heal Your Body

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

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

Why Kindness Is Good For You

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

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

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

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

I relaxed.

Closed my eyes.

I listened to my breathing.

Paid attention to it going in.

And out.


"May I be well,

.........

May I be happy

.........

May I be at ease"

I focussed on my heart.

On generating a warm positive feeling.


"May I be well,

.........

May I be happy

.........

May I be at ease"

Breathing in.

And breathing out.

Feeling relaxed.

And positive.

And calm.

"May I be well,

.........

May I be happy

.........

May I be at ease"

.........

I opened my eyes.

Kept my breathing calm.

And relaxed.

Feeling positive.

Slowly got up from the bed.



Walked to the bedroom door.

"May I be well,"

Walked into door frame.

"May I be ow bloody door frame,

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

May I be at ease, buggerit.

Hahahaaa!  Oh dammit."

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

For ME

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?

Cannot Flippin Sleep ... Still!

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

So I say...

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.

Testing, testing...

Firstly I need to apologise to those of you who have been waiting for me to post about what happened at the Friday 24 hour levels testing thingymebob. I'm sure not that many of you have been checking my blog out, waiting with hooks all tentered and breath carefully bated. I'd know if I had one of them site meter doodah's which tells you how many visitors you've had - I'm sure someone can tell me how to acquire on of those - Jae?? :>

Secondly, I wanted to thank my friend Kitty and cousin Beth for ringing me after my last blog, asking if I was ok and when I said 'Fine' asking me if I was really ok?? I appreciated that. I think I've put my mum into panic mode and she thinks I'm not coping but I'm just trying to be honest and real about how things are, and they aren't always easy.

That said, I'd know if I was depressed, I have been before when I was on the Hep C drugs and I took anti depressents for a while. Now my main problems are physical not mental and I feel able to handle things mostly so please don't feel too sorry for me.

Back to my visit to the hospital in January.

I had to not have any treatment in the days running up to the tests to avoid affecting the results. Luckily other than a 24 hour gum bleed I had no problems that needed treating. I also didn't have any tranexamic acid, which bleeders can take to help stop clots from breaking down too easily. I have to say I don't find that stuff works that well for me but I avoided it anyway, to be on the safe side. I wanted to go to the tests with my very own levels all intact and unadulterated by anything else.

I also, luckily, had not started another period because bleeding heavily would have affected the results apparently.

Anyhow, I turned up at the hospital at just before 9 a.m. - the best thing about this being that I got a parking space right outside - notoriously tricky at any other time of day, even with my little blue badge.

Having gone up to the clinic on the third floor, I was greeted by the ever cheery Jill, one of my clinical nurse specialists. She's ever so nice and suggested that I use the social workers room when I wasn't in the treatment room, if I wanted a sleep or to read my book. Rather than sitting in the waiting area which is pretty dark and uncomfortable, and obviously full of other ill people!

She took blood to test my first set of levels prior to giving me any factor, then gave me 2000 units of factor VIII, and then straight after took the first of 8 lots of blood over the next 24 hours.

Half an hour later at 9.30 she took the next lot.

Then half an hour after that.

Then I had another two hours to wait, so I went and got a cup of tea from the cafe and had a teacake.

At about 12 noon Jill was ready with her kidney tray full of stuff to take my next donation for the labs. Each time a couple of test tubes worth was taken, good job it wasn't any more as I was already feeling pretty woozy. Saying that, they had also tested if I was anaemic prior to the levels testing and my blood count was 11.5 - pretty good really given how heavily I'd been pumping it out recently - and I think mainly down to the very good iron supplement I've been taking - Spa Tone it's called, highly recommend that if you're anaemic...

After that one I wandered off downstairs to get some lunch. The cellar restaurant is on the second floor - only kidding, it's in the basement obviously hahahahaha. So I went down to that as they've got a better choice of institutionalised meat and veg. In order to get there you have to walk through a low ceilinged corridor that you come across people pushing cages of suspicious looking items, body parts I like to think. And there are lots of filthy pipes dangling from the ceiling - definitely the sort of place you'll run into porters with pickaxes or psychopathic surgeons with scalpels.

Having avoided all the murderous members of hospital staff I found myself a reasonable looking bit of battered fish and chips and sat myself in a corner with my book. Nobody bothered me and I was able to while away a good hour there.

Back upstairs Jill told me she had got me booked into the ward for the night. My final injection of the day was not due til 9 p.m. and the next one needed to be taken at 9 a.m. on the Saturday. I much preferred the idea of staying a night on the wards than driving 25 miles home after the time I was normally in bed and driving back in at the time I was normally recovering from not sleeping that well overnight. I had brought my pyjamas and toothbrush in, just in case.

Two more hours were spent in the little social workers room, it had a desk and a sofa with arms that folded down so I could get very comfy. It was bloomin hot in there - it's too tricky to turn the heating down to a reasonable level and you gotta keep those germs nice and toasty so's they can breed. I had the window cranked open and was still struggling to stay awake. I'd got my boots off and feet up when Jill popped her head in to see if I wanted a cuppa - ooo yes please.

At about half three Jill took me round the corner to East 3 A, the ward where I'd be spending the night, and left me in the day room. I waited there for another hour or so, reading the magazines and listening to one doc quizzing another about a condition they'd just seen. He did quite well incidentally, no idea what it was they were on about tho. Think they thought I was a staff member - pretty idle one as I was just sat there, because when two other patients came in they tootled off smartish.

At 5 p.m. a nurse came in to take me onto the ward and take some more blood. Ward was ok, only four beds in there and one of those had curtains drawn around it. They said visitors were welcome any time really so I gave Ade the hubby a ring and he said he'd pop in after work and bring me bedsocks - ahhh.

No-one was too chatty so I got myself settled and was offered some nice(?) indeterminate stew for tea. Decided that I'd had too much lunch and opted to eat some of the semolina pudding and a banana. Yummy.

The lady in the bed next to me - with the curtains - had people with her but didn't sound too clever - literally. The nurses kept trying to talk to her and work out what was wrong but all she'd do was moan. They'd ask her was she in pain - uuuuur, was the response. Do you need more painkillers - uuuuur. You can't have any more because you wouldn't swallow the last lot - uuuuur. We'll try and sort you out some more iv morphine - uuuuur.

Poor thing. The trouble was different nurses would come and ask her the same questions, promise they'd get a doc to see her so she could be prescribed something iv, and then they'd forget and another would turn up asking the same questions. I felt like sticking my head in between the curtains and shouting - just give her something godammit!! Not sure why I didn't, guess it's just that English tendency to avoid getting involved in someone else's life if at all possible...

She also had at least three relatives with her at any one time so it was hard to see why they weren't doing more to communicate on her behalf.

Ade turned up with some socks and some flapjack, which I offered to the diabetic opposite and the lady on nil by mouth. Didn't try the moaner. Polished it off myself.

After my final jab for the night I settled down for a fairly sleepless night, what with 'uuuuring' on one side and some sort of generator outside the window on the other I managed dribs and drabs of sleep before being awoken quite late for a hospital at 7 a.m.

I was delighted to have my final bloods taken shortly after 9 a.m. - they obviously wanted my somewhat unwarranted bed back - and legged it, in the way of a bleeder with one arthritic ankle, limply for the exit.

Jill had said the results might take a little while to get, so I decided to ring first thing Monday, on an optimistic whim. I'd be interested to see what they said as I don't remember ever having my levels studied this way before....

P P P P P P Patient Power!!

So, the hubby and I went off to QE in January determined to get some answers.

What I really wanted was for them to run some tests to see how my factor levels were affected by the injections. Did my clotting factor levels rise and by how much? How long did they last at elevated levels and when did they decrease so far as to be irrelevant?

We went into the doctors office - 'How are you?' he asked, 'Oh fine!' I replied.

Ade shot me a pointed look.

'Umm, not feeling that clever really, but not too bad you know, haha. How are you?' I asked.

What wrong with me??? So much for telling it like it is and wielding my right to get some answers. As Ade put it afterwards - he's not going to think you've got any problems if you're laughing and joking like everything's ok.

I know this but am just not able to sit there and reel off how I really feel, how crap everything actually is. How I struggle to get out of bed in the morning because I'm so tired and that walking up one flight of stairs leaves me breathless, and that injecting so many times each month is getting more and more difficult cos my veins are getting knackered, and that bleeding this much is stopping me from working, shopping, getting on with my life. I have effectively chosen to feel this way by wanting to have children, I feel guilty that I am using all this treatment because I know it costs a bomb and the NHS is in the red. I also think that if I were to let it out I might collapse in a little heap and start to blubber like a baby and frankly, that wouldn't be much use to anyone.

When I was first unable to work in January and had to keep in touch with work to tell them how I was, I found it hard to talk to my boss Lou and tell her how I was feeling. When I did try she would tell me that I shouldn't worry about work and concentrate on getting my health better and that upset me, because it was so supportive and kind.

I'm usually pretty good at telling it like it is when people ask me but somehow I always feel the need to appear that I'm coping and getting on with things, which mostly I do, even though sometimes I don't and perhaps this is more the case when I'm coping less - if that makes sense???

When I talked to the nurses at the hospital I can tell them easier how I am and show them my 'bleeding diary' - a lovely chart showing how many tampons and towels I'm using and how heavily they are saturated - eeugh. Maybe because my doc is a man, I feel like when I try and give him these details to explain how bad things are, he doesn't necessarily want to hear it? It might be me, maybe I'm embarrassed to tell him? I don't think so, I've generally found it easy to be open with docs over the years. I think it is the not coping that makes me more desperate to appear to be coping...

Looking at my little bleeding diary (created by ZLB Behring to tell new patients a little about vWd and heavy periods) it states:
'A period usually lasts for 3 - 7 days. Although the amount of bleeding will vary from woman to woman, and may even vary from one cycle to the next, blood loss for most women is minimal, usually only 4-6 tablespoons during an entire cycle.'
Now I've never measured my blood loss with a kitchen utensil but I can assure you that I'm dispensing measuring jugs not serving spoons. My lowest number of days was 10 and my greatest 21, so I can safely say I can tell you that I'm having excessive bleeding.

This is what I told my doc. His thoughts were that if the treatment wasn't helping then it could well be because there is another underlying cause for the heavy bleeding. That maybe so, but I still felt it was worth assessing how effective my doses of factor VIII were being. After a little pushing by Ade and myself he agreed to do a 24 test of my levels following 2000 units of Factor VIII - hoo ray!

Because at the time of the appointment I wasn't bleeding, I know!!, I was keen to have the tests done asap. And as I wasn't at work I could come in whenever they could fit me in. We arranged that I'd come in for 9.00am that Friday, a prospect that I didn't relish being unable to get out of bed in the morning, but one that I sure wasn't going to turn down.