Joking apart ...

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

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

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

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

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

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

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

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

I Am In Pain - so there!

I have had some good news today.

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

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

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

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

Yup, doc, it's not too bad.

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

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

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

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

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

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

One jaw bleed later, I said, 

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

And so I was referred.

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

"All done."

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

*Lights dimmed*

*Drum roll*

*Gratuitous lengthy relentless seemingly unending dramatic paaaaaaauuuuuse*

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

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

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

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

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?

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...

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..."

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?

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

Clots of Love. . .

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

Woo hoo for "The Plan"! It worked.

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

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

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

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

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

Love and clots.

X

Nightmare on Shrubbery Street

We go to bed. Usually around 9 p.m.

I have a hot water bottle. Ade sets his alarm, he slaps the side of the clock so the alarm remembers to go off.

We curl up, all cosy. My back to his front. He holds me tightly, the only time he does is in bed. I am happy and comfortable.

His breathing slows and becomes steady. As he goes to sleep he twitches. Like a puppet being pulled by invisible strings. Jerk - his elbow flicks upwards. Jerk - his hand leaps an inch and back.

As he relaxes, I tense.

I become conscious of my legs - they are aching. My ankle - it throbs. My shoulder hurts. I have things crawling on me - gotta itch.

I free my arm from under his and grapple for my calf. I itch and the crawling sensation subsides. That's all it is - a sensation. Then another, on my back.

Can't move, don't want to wake him up. He needs to sleep.

It irritates me. I try to reach down my back but cannot get to the spot. Dammit.

I gently lift his arm. I've got to move. Roll carefully onto my back. His arm still on top of me. I can stretch my aching legs out.

That's better, much better. I relax.

Two minutes pass.

God, my ankle is throbbing.

I flex it out, crackcrackcrack. Sounds like tinfoil being scrunched. Feels like there are strings inside the joint and they are catching and releasing as I stretch.

I have to keep moving it to ease the ache. Each time the grinding gets worse. Where are the pipes and the monkey? I could play myself a lullaby.

No good. I turn another 45 degrees. Onto my other side, facing Ade. My knees can't move, his are there. I wriggle. Try to get comfy.

He sighs. Rolls over onto his other side. I wrap my arms around him. That's better.

Two minutes.

Boy, my shoulder is hurting. Feels diseased. Definitely not right. I move it a little. Does that help?

Nope. Still hurting. Can't breathe too deep without getting a spasm of pain. Breathe shallowly, try not to disturb Ade.

Roll onto my front. Stretch both arms out beneath me. Head on pillow face down, turn it to one side.

Shoulder subsiding. Can relax. Breathe deeply now. Better.

Hmmmm. Lying with toes pointed and ankle flat to bed is not good. Ankle cannot bend out that far. Push myself down a bit. Toes now over end of the bed. Ankle bent. Better.

Argh - toe caught cold metal bedstead. No good. Pull foot back under duvet. Nice and warm.

Arms have gone totally numb. Better than aching I suppose.

No, have to move. Make the final turn back onto left side. Where I started from.

Now back to back with Ade. Better. Not so likely to wake him if I need to move.

Oooo legs aching. Something crawling on back of my arm. Itch and it goes. Bones feel like they are rotting. Extend legs, stretch them right out.

Still aching. Curl them up. That seems to help. Knees sticking out over side of mattress. Can feel edge of mattress. Little ridge round edge. Sticking right in me.

Gotta turn over.

Revolving like a woman on a spit.

All night.

Ade sleeps through, thank goodness.