Betrayal and Lies -- Please Share

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

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)

My Psycho Moment...

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

Mad March - the beginning

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?

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

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

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