RozzzzactemrazzzZZZZzzzz ...

Knackered.
This must be the damned infusion - I am so tired. Tired doesn't begin to describe it really; utterly wiped out, want to cry, drained beyond belief, too tired to go upstairs to bed sort of tired. Then get into bed and have nightmares. Yippee.

Tired and spotty. How nice. My skin broke out last time and it's not great at the mo. Buggerit. And an upset tum yet again.

The annoying part (well, annoying apart from having the shites and zits and being wiped out), is not quite knowing what is causing what. The methotrexate always upsets my tum, by rights I should be a skinnyminny. The RA flare ups make me exhausted as well as in pain. ME obviously clobbers me. Have never had spots though so I am truly blessed.

What next? Piles? Guinea worm? The clap?? Tis a good job I don't have a social life I think, with this lot I would be a social pariah anyway ... get thee away from the spotty farty short-arse in the corner, kids!

Today has gone something like this:

• slept okish thanks to double sleeping tabs last night, bonkers dreams as usual
• lay in bed working out what hurt and how tricky it would be to get down stairs
• looked at the clock, sighed, wished it was later
• got up, inspected spot situation, fed PSidney, fed the birdies, had painkillers, rang mum, had piece of bread, went back to bed
• repeated all except feeding birdies a couple of hours later
• sat on settee
• sat on settee
• etc

Throw in a very temperamental internet, phone that's working as effectively as my body, not being able to warm up, hands too sore to knit and yippeedooooo, it's a wonderful day!
It's what, 6.36pm - and all I want is to go to bed. But as my tum is doing ominous crampygurgly things I can't risk it yet (upstairs = bed, downstairs - bathroom), hence this post.

Grrrrr. Plus I suspect I smell.
;-)

Right, mutter over. I will try to summon the energy for a bath (unlikely), a piece of toast (possible), ringing mum yet again (inevitable) and watching tripe. Toodles and keep warm.

Chavless in Seattle. With drugs.

Okies, will try and condense Tuesday's hospital visit into something less than a millionty words - and this post will mostly be health based so do feel free not to bother reading if not interested.

There is a relatively new drug available for the treatment of Rheumatoid Arthritis, RoActemra / tocilizumab. It is one of the biologics, and pretty difficult to get on the NHS - not impossible by any means, but as you have to have tried and 'failed' with at least two other DMARDs (disease modifying drugs, such as methotrexate and leflunomide) it is a long and painful process.

roactemra

A few months ago the fab Prof said I would be 'perfect' for a new trial being run, researching whether patients need to take BOTH Methotrexate and RoActemra for it to be effective, or the RoActemra on its own. As the meths causes godawful nausea it would obviously be a huge bonus for many people if this is proved to be the case.

So this is a double - blind trial. All patients will be given RoActemra, via a drip infusion, once monthly. All will also start with Methotrexate too (minimum of 10mg weekly). Half will continue with this combination while the other half will gradually have the meths tapered and then stopped. Double blind because neither the RA nurse or the patient will know which group they are in.

So for those (like me) who don't get along with the meths, there is - as the consultant told me - a good 50/50 chance of coming off the stuff altogether. Good enough for me! There have been significant improvements in people taking the newer drug, with minimal side effects - although obviously this being a relatively new drug there may be side effects to come that nobody really understands yet. It's a chance I am happy to take if it will give me some quality of life back, especially with my hands.

I do take a certain morbid delight in side effects that state 'death' at the top of the list!

Sooooo...... Tuesday afternoon was dedicated to a long screening session, a full MOT health check, with mountains of paperwork and tick sheets, many hoops to jump through etc.
X-rays, many blood tests, pregnancy test (I am not. I replied 'it would have been the bloody immaculate conception if I was!'), ECG, joint count (inflammation / pain), height (stumpy), weight (fat), blood pressue (high), pulse ('racing'), temperature, on and on it went.

They test for hepatitis and TB in particular, either of which would rule me out of the trial. Then again if I had either of those I would rather know about it!!

Fabulous staff, every one of them. All male, all mustachioed for Movember.

It has left me utterly wiped out which I knew would happen (thank you ME), in fact I am too tired to sleep, if that makes sense? BUT, one single line from the consultant which was then passed on to the two nurses, gave me an immense emotional lift:

'Let's see if we can start mending your poor hands.'

Anyone reading this who knits, sews, draws, writes - anything, will understand what this means to me. My poor swollen, painful and stiff hands look like chuffin sausages most of the time, I cannot wear rings anymore (I loved my silver rings), don't bother with bracelets or a watch now as my wrists are so bad. I am lucky that I can and do knit etc, but NOWHERE near as much as I would like. I never knit a top down seamless cardi or jumper because my hands / wrists cannot bear the weight. I switch to crochet sometimes when knitting needles are too much to handle.

Sewing, especially by hand, has taken a huge back step.
Drawing - doesn't happen.
Paining - ditto.
Beading - pretty much the same.

Trivial things to many I am sure, but when your way of relaxing is to make things, to craft, it is massive.

Hearing someone who has never met me before say those words was so important.

I now have to wait until the test results all come back, and the nurse will ring me. He said 'pencil in the 10th'.

I won't actually believe it and relax about it, until that needle is safely in my arm.
Never thought I would actively look forward to that!

Thanks for sticking with this - I think the main thing is that people are working on ways to help those with RA. It is a horrible, horrible life changing disease. I knew absolutely naff all about it when I was diagnosed, and was totally flippant about it. It was the reactions from other people that made me think, hang on, this might actually be serious stuff.

Talking about this to my Aunt the other day, I said there are three things I would LOVE to be able to do again:

swim
draw
ride a bike

Will report back. Toodles.

A better day.

Today has been pretty good. By anyone 'normal's standards it has probably been dull as ditch water, but to me, yep, pretty good.

I have seemed to slip into a lazy persons routine - I am sleeping later (or at least lying in bed later) on a morning - when I first left work I was trying to get up at 7ish every day to try and maintain some sense of normality.

Lately my body simply hasn't coped with that and I am now surfacing around 8ish 9ish - the other day I got up at 11am, had a bath, made a nest on the settee with a pile of throws (before I fell down) and slept all day, literally. I suspect that was an ME crash rather than the RA. The routine at the moment involves eating toast or something around midday, taking tramadol etc, pottering, putting away the washing up, catching up online and doing the washing if needed.
Then - back to a warm bed.

This little knackered body is really liking the warmth of the electric blanket, especially my kneesies, and I think this snooze time is helping me to have a few half-decent hours for the rest of the afternoon. If I don't actually sleep it is just as beneficial to simply lie in the warmth.

(Told you it was dull!). On a really good day I even - wait for it - walk to the corner shop and back. I know, tis a wild and wicked life I lead.....

For the last two years my Dr has told me to listen to my body, but the guilt of doing so little has over-ridden this sound advice until recently, when my body has given me little choice in the matter. Having an ME / RA crash is the most bizarre thing - it literally feels like someone has pulled the plug on what energy was there, it is like that feeling when you are about to faint. I can't fight it and have to just go with it, hence a nest on the settee as getting upstairs is impossible when it's that bad - these are the times I am very glad I live alone because I can just close my eyes and ignore everything.

I am also getting better at not planning 'crafty things' - eg the knickers I plan to make, the two dresses, the bags, the crows .... I have the ideas, the materials but not often the energy. That's OK - I am allowed to NOT do them until I am up to it. So at the moment I am (verrrrry slowly) clearing away the things I know I won't be tackling anytime soon, to make some nice space for when I DO feel up to it, if that makes any sense. Which it probably doesn't. The idea is to try and lessen the feeling of guilt and uselessness because I have not achieved (by achieved I think I often mean 'made / created') something that particular day, because the day/hour/5 minutes will come when I do make things and that will be fab.

I dunno, does this make any sense at all? Making things is such a big part of 'me' - to not make much anymore is a bugger, for wont of a better word.

Knitting happens quite a lot (hands willing), mainly because it is something I do sitting down in my cosy corner. Couch potato knitting. And of course knitting is (usually) soothing. Unless it's that time when I am pondering what to cast on next and what with and why can't I find A SINGLE BLOODY PATTERN I LIKE from the mountain that I have AND WHERE IS THE WOOL etc etc etc.

Today - today has been OK, maybe because the sun has been shining. The washing almost dried on the line, my body has co-operated quite well apart from the fibro in my neck, I haven't had to have any of my anti-nausea tablets, I am enjoying my knitting and I have thrown out some clutter from upstairs. That will do.

I hope today has been a good day for you, too.

Trippy pills.

My Dr agrees that I seem to have all the symptoms of Fibromyalgia, as well as the ME and the RA etc etc etc. Joy.

Although it's a depressing addition, it certainly explains a hell of a lot of the things that don't quite fit with the RA - plus I have had a dreadfully painful neck, both sides, for ages now. Anyway, she topped up my usual tablets, added in amitriptyline and stronger anti-emetics and I started them last night.
Slept like a baby, apart from some bizarreness involving Romney and Obama, I know not why - BUT today I have been so spaced out and zombified! Not totally unpleasant until the shakes started - I think the amitrip didn't like something I am already taking, so will have to experiment until it's more workable.

Apart from that -

Whilst sorting through the horros of upstairs, I dug out a dress I must have cut out a year ago. I still like the pattern and the fabric is lovely, so was chuffed to bits - cutting things out is the hard part with sore hands. Have started sewing it, done the back, and need to mark all the pleats at the front neckline - other than that it's a very fast, simple job - a day's work if I had thought to mark everything in advance.
Should be nice with tights and boots and a cardi for Autumn. Could even work for over Winter if I find a nice knit fabric.

I also dug out this:

which is destined to become part of a 40s / 50s style dress. The skulls are a slightly odd colour, a creamy peachy shade which I wasn't too keen on but it has grown on me and not as in yer face as pure white.
I love sewing - have left my machine set up on the table as I cannot lift it out every time I want to sew, and might get my daughter to help me cut things out so I have plenty of things ready to sew.

Knitting-wise, the dress of madness is coming on nicely - the bodice only needs about another inch or two then the sleeves. The skirt - yikes! For some reasons I had imagined it needing maybe 20 crochet motifs but 80+ - arrrggghhhhhhhhh! Erm - so far I have done 4....

Good job I don't mind moths (well I do mind if they are scoffing my wool, but I don't loathe them like I do buggerflies) - this whopper was perfectly happy in the living room the other day.
I like moths - I like the dustiness, the colours, the furry fuzzy bodies and the general chunkiness of them - there is something earthy about them. Buggerflies - shudder, I cannot stand them!

And to finish with, after all the furore on the news about Kate Middleton being naive enough to whip her kit off (this does tend to be a technological age with long range lenses etc - surely there are plenty of places to sunbathe topless othere than a country where Diana, Charles, Fergie have all been papped - not at once cos that would be puke-inducing). How many of you have actually had a peep online at the naughty pics?
No?

Ah yes - you at the back, thought you would!

But for those who have resisted, would you like a sneak peek at Kate's tit?
Yes?


Here ya go:



ready?

sure?

hehehe

Burp.and possibly Parp too.

Was supposed to be at the hospital today for scans and the usual RA nurse, Dr, consultant, bloods session but had a rubbish night and a dashing to the loo morning so gave up and cancelled. Don't think I have ever had to cancel a hospital appointment because of illness before, more than a tad ironic.

The hospital rang me later this morning when I was in bed and told me no meths injections for a few weeks to see if it's that making me ill, but also said it could be some sort of flu etc as it came on so hard and so fast. Whatever it is I don't like it and don't want it and wish it would pack it's spotty hanky, tie it on a stick and sod off.

To me, being able to sit upright isn't 'real' flu - dear lord is it man flu???         !     

Have taken double dose of slepy tabs tonight as I seriously need a decent amount of sleep, kneesies and other parts are not at all happy today. Am also bloody freezing cold. Kerri tucked a throw over my knees earlier so that's it, it's official - I am ancient.

Keef dug out his favourite teefs to cheer me up, bless his little cold heart.

The windmills make me smile every time, I make no secret of being mostly about 6 years old.

But this picture worries me and fills me with the dread of what is to come - avert your eyesies if easily upset.


Ready?

                                                                         UH OH
It REALLY HAS GONE HASN'T IT, that elusive summer thing. I think there was a week in March, a day in April, a week in May when it was very hot and then these last few days have been lovely. I have freckles to prove it.

We. Are. Doomed.

But may I leave you with something magnifico I managed to make before I was clobbered with the plague this week - I hope it wasn't the cause of the plague!

I come from a  family of fantastic Yorkshire Pud makers, and many of us have photos to prove it - when you have to move the shelf down to accommodate ones pud it's a good sign.
Dearest readers, may I ever so umbly present:

me pud

Nomchuffintastic.

Found one!

Camera that is. Nopthing flash (and by hell I am missing my broken one) but it's better than nothing.

So brace yourself - garden piccies galore!

Vegetables? A total and utter soggy, drownded, rank looking disaster - what the rain didn't destroy the giant mutant slugs relished.

Tis upsetting really but sod all I can do about it.
The sole survivor of the peas and beans:

Poor things!
The cabbages, rosemary and mint are the only things that have flourished. Thankfully PSidney likes baby cabbage.

Self sufficient I am most definitely NOT.
Some of the plants and flowers have loved the weather - not all, and of course some were minched by the red beetles. But in general most of the flowers looks pretty still.

I need to get back out with the greenfly spray, and there seem to be quite a lot of tiny black flies around (no doubt attracted by the standing water in a couple of the pots, so have emptied those as best I can).

These have been fabulous, reds, all shades of pinks and white. They have flowered constantly, I deadhead then every few days but they have kept the garden looking colourful over the last couple of months.

Look at the colours in that! Gorgeous.
It is a lovely day here, sunny and dry - two loads of washing have dried on the lines so that's good. Cannot beat air dried washing - bedding tomorrow, and hopefully get the covers off the settee over the week and get those out to dry.
I have done a bit of knitting but it's on a back burner at the mo - I am so so tired.

Very easy, very simple, acrylic - and I really like it! More details to come, tis a Chrimbo gift to out away when finished. And probably lose.
I have also been sewing away on things for a certain upcoming mini fibre festival - plenty of sheepies like the ones I made for KnitCampSh1tCamp. They were extremely popular, and having found some lovely 100% wool felt I am really rather pleased with the slight changes I have made which I think have improved them.

Boo!

And the crows of the steampunk variety are also coming along but again on a bit of a backburner until I perk up a bit.
I gave up and went to bed last night at 6pm - yes, 6pm, then slept until 5am then again until 9am. Have also had a few hours kip this afternoon and can hardly keep my eyes open - hence being outside for an hour or so to try and wake up a bit and get some vitamin D.
This is real ME territory - cannot stay awake yet don't feel any better for it.

I have my paperwork through to sort an appointment with the cardiology team for more tests on my angina, that was extremely speedy as I only mentioned it to the Dr on Monday. Wish I had kept a copy of my ecg just out of interest.

Not a lot else to report really, just how lovely it is to have some sunshine.

Hope all are well.

Poor puddytat

Not good at the moment, has been a tough week (fainting, sickness, dashing to the loo) . The hospital have told me to stop the Leflunomide for at least a week to see if I pick up a bit, then try it again once on alternate days.
It's either the tablets or some sort of bug (and of course I have a compromised immune system now) - whatever it is I wish it would bugger off. ME too, nice mix.

So not much else to report - was supposed to be having an Out tomorrow with really lovely friends but that's highly unlikely (especially with the risk this is a bug).

All I want to do is lie in bed and try to sleep, I managed to get to the shop today but had a funny turn and had to grab a bottle of Lucozade from the shelf and swig it, no way did I want to end up on the floor of the local Co-op, would have a million more germs than I started with!

My worry about the tablets is that there is apparently just Gold injections to go if the Leflunomide is making me ill and I really do not want those. Amazing how much your life can change isn't it, I never for one minute thought things would be this rough when I was happily teaching those lovely bonkers kids in the PRU. But sweet FA anyone can do about it so not much point in complaining.

Right, bedtime I think.
Toodles x

Being Ill.

OK, not much of the light / amusing / crafty variety here - I am comforted that people DO read this blog (not sure 'comforted' is the right word - whatever the word is it is lovely, and thank you). But please feel free to skip this post as it is really more a personal record for me. In an ideal world I will be able to read this again a few months down the line and see improvements in my health. So do skip this post entirely if health issues bore you rigid!

Right - I haven't been online much for the last few days, and things have been bad enough for me to need to record them, as I say hopefully there will be an improvement soon.

On Wednesday I was hoping to go and meet a very lovely friend who was having a holiday of a lifetime, travelling from America to do a whirlwind tour of Britain. She was spending a night in York, which is so close to me that it seemed bonkers not to meet up - she rang me and even offered her room for the night to save me travelling home.

But I had to turn the opportunity down - I am babbling and this is probably all out of chronological order but hey ho.

This is how my world goes at the moment.

Night time - a handful of assorted tablets. Painkillers, tablets to help me sleep (not the actual sleeping tablets - I take those maybe three times a week),  tablets aimed at the RA. A warm bed helps but going up stairs to put the electric blanket on, then down, then up again at bedtime is too much so I usually put it on as I climb in.
The 'norm' is to toss and turn for anything, hours sometimes (2am ish) until I manage to nod off. Then the dreams start - every night, dream upon dream - very vivid, very clear, often nonsense, often horrific. More often than not I wake up several times shouting or panicking. It is rare to get a full night's solid sleep.

I still tend to set my alarm, usually for 7.30am - trying to keep some sense of normality. On a good day I can get up and downstairs carefully but Ok. Most mornings I have to plan it in advance - what can I grab to wear, do I need anything from upstairs, is it the sort of day when I will be back in bed soon so should I leave the electric blanket on?
My stairs are twisty and steep, so it's a case of gripping the banister and taking it slowly - I usually throw my clothes for the day downstairs so I have my hands free. Classy eh.

I won't detail the entire day because I KNOW how bad it can be.

It's slow. Very slow - when the pain is bad, as it has been lately, I lie in bed and the tears trickle like some wimpy olden days girly. Someone online described it as 'someone sawing slowly through your bone, and just when you think it HAS to stop it all starts again' - dramatic yes, but it's true. The pain is incredible - my hands, arms, elbows - it's the sort of pain where you cannot specify where it's coming from as everything hurts so much. And it doesn't stop. Tramadol eases it (and zonks me out which is wonderful), but I am only allowed 3 a day. The sheets hurt my hands, I can't roll over in bed, can't get comfortable anywhere. Hot water bottle helps (or the microwave one I use as I can't use a kettle safely) but once it goes cold that's it as I am stuck in bed - do I risk getting up and doing the stairs when I am woozy? Arggghhhh!! I once rang my mum because I was past myself, but then felt really guilty as there's nothing she can do and I know she worries so much about me. She always says ring absolutely anytime just to hear a friendly voice.

Then there is the tiredness. Not just 'tired' but utterly drained, the sort of tired that hits you like a big wall and all you can do is sit or lie down and let it do what it wants. I have ME as well as the fatigue that comes with RA, lucky me.
If I have things I need to do - exciting things like the post office - I tend to do even more sitting than usual. I don't have much energy and am learning to be careful with what little I have. I have to thiunk ahead - if I have a hospital appointment on the Wednesday, is it wise to go out on Tuesday? Planning anything for the Thursday is out of the question. A hospital trip means straight to bed afterwards then a very quiet day - pathetic isn't it, the hospital trip becomes a day out.

So the trip to York - see, I mentioned it for a reason! Travelling on my own to York, with an overnight bag, sleeping in a hotel or travelling back again the same day - the after effects of either would not be good.Wednesday ended up being a tough day and I spent most of it in bed. Physically crap and mentally pissed off.

Tomorrow I have scans on all my joints at hospital - pretty straightforward, but because they will be manhandling my bod I know it will hurt (if not at the time then afterwards) and I know I will be shattered. Buggerit!

That's morte than enough for now - I haven't even started on the bloating and weight gain from the medication / immobility!

Anyone who has this bloody illness has my utmost empathy and sympathy.

Yuk

Injection day and I feel really pretty grim tonight, I think it's an ME crash.

Had a very giggly day with pensioners at hospital, more later.

zzzzzzzzzzzzzzzzzzzzzzZZZZzzzzzzzzzzzzz

Day 4 in the Big Brother House ...

or the Short Sulky Cottage.

It's been a strange few days. For those who have popped by for a dose of sarcasm and vitriol, move along the bus please, nothing to see here. For those popping by for knitty crafty things hang on a mo, there IS knitting to come! And for those who don't mind me babbling about my ongoing health madness then pull up a chair and make yourselves comfy.

Last Thursday was Not a Good Day. Tis official.
Jo the lovely rheumatology nurse rang - one of my blood tests was rather special.

In her words - 'above 10 is a cause for concern - it should ideally be negative.
Yours is 459.'

459!
Wowee! Well, as my sister said getting a HIGH score in tests is a good thing! WINNER!!

She went on to say I am - ahem - 'very seriously ill' and needed to go to the hospital the next day to start - ahem - 'heavy duty drugs'. Speshul, that's me.

So this is day 4 of the new regime - I think if anyone had the strength to pick me up and shake me I would rattle, I am on around 25 tablets a day! I also have to carry these at all times:

Sadly they don't do them in pink.

I also have this:

and this:

Sods law that I am now banned from having the pretty PINK ones as they interact with the Methetrexate.

Sheesh. There's a box of tablets for the ongoing day to day pain etc too.

All rather worrying but I seem to be in safe hands. Jo rang again today to check how things were, I have rheumatoid arthritis pretty much everywhere, also osteoarthritis in my right foot and toes, tendonitis in both hands, 'something going on' in my right wrist and a build up of fluid in my left knee. I am having spectacular pain in my right knee which I have to monitor. I admit to having a damned good cry on the Thursday, part shock, part pain, part being utterly pissed off with the whole thing.

The changes to my life in the last what, 18 months or so is immense. I am exhausted most of the time, the RA on top of ME and ongoing digestive issues is a bit of a swine!

But I have my limbs even if some of them are having a strop lately, nobody has died and I have a wonderful group of friends and a pretty amazing family.

Maybe that sounds trite but it's true.

When you have friends who send you - on the same day, completely independent of each other, cuddly microwave critters to warm my aches and pains (both called Claire too!)(the friends not the critters) life's not all bad.

On good days I can knit - I even dug out my very rusty crochet skills last week to try that. I have started to adjust to a much slower life - I haven't been a party animal for a while, ironically because of the pressures of work so that's not too much of an issue. I do feel quite isolated - there are things I could join I suppose but I am very aware of my unreliability as I simply do not know how I will feel from one day to another.

Hey ho.

Knitting?

Yes, some has been happening.

Erm. I appear to be able to knit toys!

I haven't dont much in the way of toy knitting since Kerri was little, and I was a bit wary that the small fiddly pieces would hurt my wrists but I found them very easy (possibly because they are so lightweight). I can't post the piccies of my favourite as it has not yet been sent to it's new home, but this is the madness Kerri requested, the lilac bunny.

Letting Daphne anywhere near it was WRONG.

Wrong way round.

Upside down.

Totem pole...

I have sewing to do, ideas galore for all sorts of things - I just need a few days where I feel motivated and able!

Oh - apparently the tablets could give me a reduced sperm count.

There's a thing ...

How are you?