Thursday, 29 September 2011

A Mishmash.

Most important part of this post - a massive THANK YOU for the replies,both on here and via Ravelry. I really needed to off load a bit about the health issues but didn't want it to come across as a woe is me, pity me post. Instead, I have had nothing but excellent advice (a timer? Why on earth didn't I think of a timer? Genius idea!) and kindness, and it helps enormously.

As a small thank you could the people who commented on my last post, there are five of you, contact me either through Ravelry (sulkycat there too) or my email ( remove that in a few days) because I have a little summat to send each of you.

And no, don't panic, it isn't Keef. Talking of Keef - he and Daffers are loving the weather.
I am a tad concerned that Keef may end up being half the (snow)man he once was if he stays in the heat too long.

Another big THANK YOU to the fabulous staff at Chapel Allerton Hospital. My usual RA appointments there so far have all been excellent, but on Tuesday my scans seriously impressed me - not the actual scans you understand, but the whole set up.
I had a call on Monday to double check that the appointment time was OK with me, to confirm transport had been booked, and to check whether or not I required a wheelchair.

My transport arrived promptly, lovely driver, but the biggest surprise was when we went to the main reception and the lady at the desk said 'Is it Julie? We are expecting you and have a porter ready with a chair as it's a long walk.'

WOW! I didn't even mind being called Julie ...

Upstairs (after being told off by the porter at every door we came to - 'Put your hands down and stop trying to help with the door! Stop!') in the rather nice LMBRU building the receptionist again did the 'Julie? You don't have long to wait, the porter will take you back again afterwards' thing.
Either I have gained a reputation or they are extremely orgainised!
I quite like the thought of the former ;-)

And the scanning itself -VERY WARM GEL. What a superb idea for scanning (ie prodding and manhandling) sore arthritic joints. Subloodyperb. She also talked me through everything she did (bones of my wrists relatively OK still, many cysts and tendonitis, knees OKish, both feet fooked up) (recognised medical term - madam, your footsies are totally fooked up) and I have the same scans done at six monthly intervals. She also chatted about my medication, especially the meths. Whilst waiting for my taxi home one of the RA nurses was passing, she stopped to hug me and chat for a minute.

I have never used a wheelchair since I gave birth and found it rather hard to relinquish control to the porter but blimey, what a difference - my leggies weren't agony by the time I got home. Thank you hospital folk, you are wonderful.

Everyone enjoying this weather? Bonkers isn't it! I nipped to the corner shop to grab several copies of the local paper as my daughter is in it today, and hobbling home it was so odd to see trees and shrubs laden with red berries, trees dropping crisp autumnal leaves - and the sun blazing down. I have thoroughly enjoyed sitting in the garden having a knit / read / slobbing session.

Knitting is happening and some rather exciting secret stuff is happening too.
I highly recommend the KnitPro cubics needles, squared and lightweight, MUCH easier on sore hands.

Pretty too.

Considering how crap things are in general, the last few days have really cheered me up - and I haven't even mentioned the GINORMOUS box that arrived the other day, more of that tomorrow, or the GINORMOUS parcel that arrived too!

Enjoy the sunshine x

Monday, 26 September 2011

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.

Wednesday, 21 September 2011

Wrong on Wednesday

1) feeling sick. Which I do so will be typing this very quickly then going for a lie down with my head in a bucket.

2) Katie Price.
A picture paints a thousand words ...

3) this man and his jumper. Bless him - so bad it's good. Almost.
4) Blimey. Look - if this is yours - or if you bought the bloody thing, then I am sorry. So so sorry. But really? This was spotted on Ebay, I think priced around a fiver. There were others. They weren't much better.

Seriously, does anyone look at this and think 'OOH! I really MUST HAVE  a bag with a wonky zip, mismatched lining and oh hell yeah! Bobble trim that is sewn in all haphazard. Yay!'

And, as always, for everything Wrong there has to be a Right.

1) incredible origami, folded with a tooth pick.

2) baby squiggles who were homeless after a tree was felledin Northumbria during the tail end of hurricane Katia the other week
Go on, all together now - awwwwwwwwwwwwwwwwwwwwwwwwww!!

Tuesday, 20 September 2011

Hello you - yes you!

How the dickens is one?

(I suspect I may be overtired, just go with it)

Not much of any worth happening here - tired, achy, tired, queasy. But mentally quite chirpy and in the mood for making things. So far I seem to have made a mess and not much else but what the hell.

I unpicked the cabled cardi back to the ribbing, redrafted it and started again - so far it seems a) less bunchy uppy and b) less destined to fit someone three times the size of my daughter. I have things that really need finishing asap and am going to have to force myself to put this one down for a while - there's something incredibly soothing about cables, I love them (I do them WITH a cable needle as part of what I like is the motion of the cable needle).

No piccies yet, will take them tomorrow if we get any daylight.
We seem to have gone straight to November here -

variations on a theme of this, and it's deffo getting chilly. Thank gawd for electric blankets. I hate being cold, a skiiiiiiing type holiday would be my idea of hell. Knitters the world over can be nice and smug (and snug) come winter when they have piles of throws and layers of yummy warm knits to swaddle themselves in.

Health-wise this is the sort of thing my house is full of. I could set up my own mini Boots, or make a bit of dosh loitering at the school gates. That's only about half of what I get delivered - and I now have a big tub of calcium and vitamin D3 to add (HUGE things, they would be impossible to swallow unless one was a shire horse. They are chewable, will brave one tonight).

I think this is rather rude to us cripples:


PSidney continues to be a delight - he has a new 'trick' which consists of squishing his little face against the bars of his cage every time I come out of the kitchen, all white fur and cute mouth and nose, then he wimpers gently as if to say 'food? me? food for me? yes?'

A bit like this but much more pitiful.
I hasten to add this is AFTER he has been fed. And had fresh veg. And a nibble treat.
I love PSidney.

Saturday, 17 September 2011

And she's back .

Tough tough week, never mind. The highlight was fainting on Wednesday at hospital (haven't done that in a long time!) - I am now on a rheumatoid arthritis trial and they needed a fair amount of blood - this doesn't usually bother me in the slightest but a combination of no food, warm room, no sleep and seven lots of blood resulted in me saying 'I don't feel great' and promptly blacking out in the chair.

I was very well looked after but by hell it knocked me sideways for the rest of the week!

I have been allowed to do my meths injections on  Saturday before bed, so I am hoping and hoping I will be able to make it to knitting group at Armley Mills which is just down the hill. Not sure I will get there today as I am tired out, but fingers crossed for Very Soon. It would be brilliant to build up some semblance of a social life that doesn't revolve around bloody hospitals.

Okies. Knitting has been happening, sewing has been done and wool has been bought.

I sold a few things on Ebay for more than I expected which was fab - either pay a bill or treat myself. No contest.
Remember this lovely cardi, Brigitta from Rowan's Nordic Tweed? I ordered the wools from Janette's (always excellent service) and it is truly lovely wool.
I love the greys, am half convinced about the green but not at all happy with the pink. I suspect it would look OK in a sludgey vintagey way but I am tempted to substitute some Rowan 4ply Tweed I have in a brighter pink. This may involve the dreaded swatching ...

One lady (the only one with it in her projects on Rav) has said she will need several more balls of the main colours, and this certainly doesn't look a lot of wool.
Ebay, I will be back.

Gorgeous shades of grey.

I have also managed to do a bit of sewing - just a very tiny bit but by hell it feels GOOD to be back at my beloved sewing machine, even if only for a few minutes. I am working on a Mystery Thing, for which I have been buying many delights over the last few weeks. I am making a rather rough and ready version at the moment so don't worry about the crappy zip:
So far, dare I say it, so good - it's going as I had hoped and at the moment I can't see too many bits to tweak. I have a lovely friend on standby to give her honest opinion when this trial version is finished, then the fun part of making some 'proper' ones to sell.
I have some good quality linen, plain and prints to use, some suiting wool, some Harris Tweed and of course loads of bright cheerful prints.

It feels absolutely wonderful to be finally getting some ideas into reality - the trick is knowing when to stop and have a sleep before the ME kicks me into touch and shows me who is boss.

Knitting - yes, that's been happening too. The cabled cardi I am making up is progressing - I am happy with the front and sleeve I have made so far but not happy with the back which I finished last night.
It bunches out too much - I am going to unpick it down to the ribbing then start again. I wanted to avoid the trees in the centre because it looks a bit obvious - but I think it will work better with the trees in a panel in the middle, and the leaves in panels down each side.

Hmmmm ....

Thankfully the back only took a couple of evenings (and the ribbing was the most time consuming) so it's not too heartbreaking to unpick.

And that's about it for today. Hope all are well, enjoy the weekend - did anyone else have that stonking great thunder storm yesterday??

I leave you with a photo of last night's supper. Yum yum.

Thursday, 8 September 2011


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.


Wednesday, 7 September 2011

Wrong on Wednesday. Again.

Hark at me eh - actually posting a Wrong on Wednesday ON Wednesday and not several days later.

Right - things that are just plain wrong.

Yellow knickers.
Brown knickers.
Both for pretty obvious and similar reasons.

THESE are about as wrong as it gets and this one is a prime example of WRONG -
I just don't get it. I don't feel the need to disguise my ironing board or my hoover as - er - a black mama. With a hen. And a bag of rice. Or as anything. Come on, own up - does anyone actually own one of these things? Truly? I will send you a present if you can prove you own one. Two presents if it includes a hen.

I think ages ago I covered crocheted oven door dresses and the why oh why. It's one scary leap from crochet dolls dresses to hide loo roll (ohmigodthegerms!!!!) and I DON'T UNDERSTAND IT!!!
And relax.

Obviously for every wrong there needs to be a right.

Hell yes, very right. Have seen quite a few average and less than average reviews- of the film I hasten to add - but somehow I think I might just have to go and find out for myself ;-)
Although from the neck up he really does look a bit of a doylem. Maybe OK  from the forehead to half way down the nose is OK too. But the rest - that facial hair malarky - hahahahahhahahahaaaaaaaaaaaa!!

More right needed methinks to maintain the right / wrong balance.

Go on, admit it - utterly right.

Have a decent day - I am heading out to brave the joys of the windy city (that's Leeds in autumn, it's rainy and blowing a gale out there) as PSidney has eaten all his favourite food and isulking at the offerings I have tried to tempt him with.

Monday, 5 September 2011


OO er madam!

I am a bit perturbed to say the least that my hair cut is starting to resemble Brian 'Nobber' Cox.
Yes, he of the shiny smiley floppy haired visage.

Love him or loathe him, his hair do is NOT ME. It must be vanquished as a matter of utmost urgency.
In other words I need a bloody haircut asap.

In other news of equal banality I have just ordered some of this:
in black, grey and grey variegated - it has sequins in and it would be downright rude not to buy it.
A twinkly cardi, must have,

I have also ordered the Rowan Nordic Knits book because I absolutely love this cardi -
in greys with pink roses.
I would love it in the new Fine Tweed, but I suspect I have been sucked in by the names which remind me of home (North Yorkshire). Bedale appears to be a sludgy shade of beige - can't argue with that.

The cabled cardi I am making up (I hesitate to say 'designing' because it seems a tad pretentious) is progressing - one front is finished and I am almost done with the deep ribbing on the first sleeve. It's soothing - I love cables and I love Sirdar Eco Wool, bliss. Might even finish it ....

What else?
My Occupational Therapist visited today and was superb, I have more contraptions around my house than the average old folks' home, minus the lingering aromas of cabbage and wee. Their sister team are ringing to arrange a visit to fit some grab rails too - I am officially 96.
At one point I was sitting in the bath fully clothed, on the shower stool, whilst the OT woman (who is as chunkily built as myself) was leaning over me and we both kept placing my hands on the wall to work out where to put stickers for the drilling.
I announced that I used to be a rebellious punk art student and hadn't quite expected to end up like this....

Saturday, 3 September 2011

In Between ...

sleeping, I have been doing a bit of that old knitting thing.

I am pretty much making this up as I go, with a vague idea of what I am aiming for.

Deep wide ribbing, cables galore, leaves and trees on the back - this took three goes to get right, mostly because I seem utterly incapable of knowing my right from my wrong side. And Eco Wool does NOT like being unpicked.

I have just about managed to get the cables to flow from the ribbing and am loving knitting it - cables are my absolute favourite thing to knit.
And the Eco Wool always looks great with cabling - floofy maybe, but it has that natural sheepy look and feel. Lovely.
I keep rifling through various cable pattern books but think I have settled on the ones I like for this - might even make myself something similar too if this works out.

For once I am actually doing instead of talking / thinking about doing. And you know what?

It feels good.

Now if only I could actually stay awake .....

Friday, 2 September 2011

Mummy's Brave Soldier. That's Me.

A bit of a milestone was reached yesterday. More words than piccies today, sorry!

I started self injecting the methotrexate several weeks ago at hospital - my rheumatoid arthritis is rather severe and the specialist wanted me on the highest dose as quickly as possible (the injections are to try and bypass the sickness caused by the tablet version).

Methotrexate, in brief slows down the damage to my joints but can take up to 6 months to start showing improvement. Because it is one of the drugs used in chemotherapy it also caused sickness, diarrhoea etc and is classed as a cytotoxic drug. I also take another tablet (Hydroxychloroquine) which is used to treat malaria - on its own it is apparently of minimal help with RA but works well alongside methotrexate. More of this one in a minute.

Mum went with me for the first self injecting session, also to hear all the relevant information as she is the only person I am likely to inject in front of (my daughter would faint instantly!). Very strange thing to stick a needle into your skin and press that plunger, but I managed it and have managed it every week since with 5mg increases each week. I hit the maximum dosage last week and it was a case of 'let's see if your body can tolerate it before we sign you off'.
Thankfully the sickness seems to have eased and become extreme exhaustion instead (I slept straight through a couple of days last week and sadly had to miss a day out with a friend that I had been looking forward to).

So yesterday I injected 25mg again and signed the consent forms to arrange for home delivery - it will make a huge difference not to have to make the trip to hospital every week. My nurse, Liz is utterly brilliant - extremely knowledgeable but also a truly lovely kind and funny woman.

My thighs are littered with little bruises now (thank goodness for chunky thighs! Plenty to grip for sticking those needles in) and I am utterly worn out, but so far no sickness.

I don't quite know how all this happened - I haven't felt great since SCKC last summer, and at first put it down to overdoing things and having a bit of an ME slump as a result. Plus the stress from work. Then throw in the return of my endometriosis and the resulting operation, the digestive problems and the bladder disease - all controlled fairly well by gluten, dairy, citrus and caffeine free diet.

THEN the pain started and in April I had my first appointment at the rheumatology hospital and it's all gone a bit bonkersmad since then. This time of year is very strange - my brain still thinks it should be ready to go back to work after the summer hols.

The Hydroxychloroquine - I did say there was more to say about that. It can affect your eyes, and the pressure behind mine was high again when I got my new glasses so I was at the eye hospital on Wednesday (might as well do a Grand Tour of all the hospitals in the area). Thankfully my eyes are very healthy, and all I had to cope with was those damned drops that make your eyes HUUUUUGE and weird feeling. I have to go each year now to keep a check on my eyes but that's nuffink. Phew.
 It was the first time I have used hospital transport (have now booked it for all my appointments as I have been paying around £15 each week to do my injection) and the drivers were superb - I am not used to someone looking after me so well, opening doors, carrying my bag etc. If you think you may be entitled to it do check, I didn't realise I was until the lady booking my eye appointment told me.

So there it is, up to date on most health issues. I have to collect a prescription for calcium and vitamin D next week as both are very low, and my blood test results were a bit all over the place so that's being monitored closely. Blood tests every two weeks.

Apologies for the lack of piccies , knitting, crafty stuff etc - I AM knitting at the mo, something I am playing about with for my daughter for Christmas so will get some photos taken asap and have a more chirpy colourful post soon. Truly.