In the words of Gloria Gaynor ...

I am Rosamund Mary
I was born on the Isle of Man
I was adopted when I was 12 weeks old
I have a rare form of Von Willebrand's disease
I have less than 3% Von Willebrand's factor
I have less than 1% factor 8
I have injections to replace the clotting factor and stop bleeding
I learned to do them myself when I was 14
I started my periods when I was 13
I would bleed for 3 weeks out of 4 and then start all over again
I have taken hormone pills ever since then to keep the bleeding under control
I have always had acne on my chest from the hormone pills
I used to have horrendous period pain every month
I once had to stop my car and knock on a strangers door for help because I was blacking out from period pain
I now take hormones continuously because it's safer for me not to bleed
I was given Hepatitis C from contaminated NHS blood products
I was probably exposed with every injection I had in the 70's and early 80's
I had on average 1 injection a week then to control bleeds
I was not told by my specialist about my infection with Hepatitis C
I found out by accident at another hospital
I had a 12 month and then a 6 month course of treatment for the Hepatitis C
I had a biopsy before the 2nd course of treatment
I lost six pints of blood and nearly died after a bleed in my liver
I discovered just before I got married the Hepatitis C was no longer detectable in my blood
I have been ill with chronic fatigue ever since those treatments
I now have on average 2 injections a week of clotting factor to control bleeds
I have been exposed to vCJD
I have been unable to work since 2008
I have been unable to have children because of my ill health

I am what I am
I am just right
I am all this
I am me

Your Blood Supplement - Part 3

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.

I beg your pudding?

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

Get Well From ME

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

Letter to the Health Minister regarding the Contaminated Blood Announcement

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...

Ichabod is itchy ...

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

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

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

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

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

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

The Itchy and Scratchy Ros

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

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

What did you do there?

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

It's all too annoying

It's all too itchying

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

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

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

I got it bad, scratch fever

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

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

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


(Mis-quotes all my own)

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?

Don't Disturb The Scab

... 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!

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

Tramadol 2

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

X

Tramadol

for me
is the key
to a good nights slee
puh

X

It's oh so quiet...

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

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

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...