Blood, Sweat and Tired...

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


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

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

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

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

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


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

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

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

Good meal tho!

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

X

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

Blood, Sweat and Tyres - in action...

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

Blood, Sweat and Tyres Blog

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

X

Ch ch ch changes ...

Notice anything different about me?

X

Blood, Sweat and Tyres 2008

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


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

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

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

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

Blood, Sweat and Tyres

The Facebook event for the ride is found here:

Facebook BST 2008 JOGLE Event

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

Justgiving BST 2008


X

My Psycho Moment...

Got out the shower yesterday to find this little bleeder:


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

I kept mopping and it kept not stopping:


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

My hair towel came in very handy:


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


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

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

Hooorah.


Gum still going tho.

xx

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

... or purple or yellow or red.

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

xx

As Natasha Beddingfield once said...

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

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

xxx

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

Blood Glorious Blood

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

X

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

My favourite thing ...

I love this song.

Sam Sparro - Black & Gold.

And look out for some stylish walking stick work.

X

April Showers

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

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

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

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

Mad March - the beginning

I forgot how to do this.

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

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

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

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

Ooo do, it sounds such fun.

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

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

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

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

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

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

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

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

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

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

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

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

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

Don't Disturb The Scab

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

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

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

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

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

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

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

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

X

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

My Heart Shaped Mole

Happy Valentines to you all, my lovely loves.

X

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

Here's wishing three chaps a very special birthday:

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

The jelly and custard is on me!

X

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

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

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

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

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

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

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

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

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

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

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

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

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

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

. . . now there's an appealing prospect.

X

Waiting Hopefully

This is a challenge from Helen, my bleeding friend.

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

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

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

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

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

HOW DO YOU FEEL TODAY?
Knives Out (Radiohead)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

x

Cannot Flippin Sleep ... Still!

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