shopping delivered!

well, this morning i had some food shopping delivered, all good, except the poor delivery boy (he must of only been about 18!!) was laughing at sarah because she was helping to bring the food in but when she picked up a pack of lamb she freaked out! dropped it saying "yucky mummy!" then she started poking it, then she tried to stand on it! all because she didn't like the look of it!

thank goodness it's friday!

The end of a busy week.

on Monday my eldest Ellie went on a residential trip with her school, poor Sarah was quite upset and kept asking "where Ellie gone mum?"

on Tuesday Sarah (my 2yr old) went for a visit to pre school, she loved it and didn't want to leave! since then every morning she say's "my pre school today mum?"

Wednesday was a quiet day, except for Sarah playing her piano loudly and me doing lots of washing!

on Thursday me and Sarah went to gym minis, Sarah loves climbing, jumping, crawling and singing, i enjoy a bit of a rest because the lovely ladies there help Sarah so my hands get a break!

Friday (today) we'll be tidying, doing the washing and later picking up Ellie, I'm sure she'll bring home a large amount of washing so, here's to a busy week end to! i also think she's going to be tired, so an early night i think!

spoon theory!!

i just read 'the spoon theory' it was written by a girl with lupus but it describes life with arthur, or chronic pain perfectly.
if everyone read it they'd understand my life!
here's a link to the theory on 'but you don't look sick, a website and the title says it all!

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

please read it and maybe you can understand why some day's I'm moody, or short tempered or so sleepy it's untrue!!! i told you I'm not just lazy!
the person who wrote it describes life with chronic pain so perfectly, i couldn't even begin to explain it so well!

wahoo hay! i've dyed my hair today!

well, last weekend i dyed my hair black, last night i bleached the front of my hair, then this morning i dyed the bleached (ginger and blond) bit electric blue, i love it! just wish I'd been braver and bleached more as i think the blue is amazing, I'm a happy bunny!

apart from that, nowt much going today. Sarah is asleep, Ellie is round her friends and I'm sat here! boring don't you agree?!

stupidly I've managed to run out of my morphine, how daft am i? so it'll be a weekend of pain no doubt, hooray, NOT!

it's wednesday!!

today i are mostly doing the washing!!!
I've stripped beds, washed the bedding and now the fun begins! making my bed, hmm, who would of thought it would be so hard to 'make a bed'? it's at times like these that i get angry with Arthur. shake the pillow into the pillow case, easy? erm, not any more! just trying to keep hold of the pillow case while i shake it causes immense pain, drop it a few times and you can add a frustrated face to the mix!
still once it's done i have a few day's to get over the pain.

any way, Sarah tries to help by sticking her head into the tumble dryer to see if i got all the clothes out, Ellie keeps asking if she can turn the washing machine on, any one would think it was fun lol!
still, only another 2 or 3 loads then I'm done for the day. does any one want to vacuum for me please?

nearly the end of the summer holiday!

well, here we are, just 1 more week until Ellie goes back to school. i cannot believe how quick the holiday's have gone, doesn't seem like 6 weeks!
any way, just a quick update, i had an MRI scan done on my hand last week. this is to see if anything can be done to get some movement back in my thumb, sadly my other fingers are also going on strike now. i think i may have at least one 'new' nodule at the base of my middle finger on the same hand, my left one and being left handed this is causing many problems, especially when i try to write, hmm, my handwriting was never great but now it's even worse!!!
i have to admit (but only here because no one reads this) this arthur is getting me down, again at the moment, just wish i could get some energy, just a little would be fine. my sleeping is bad and along with all the side effects of the meds i feel so tired all the time, it's not fair, actually it's not fair!!!
tell me again what i did to deserve this curse that is rheumatoid arthritis?

i guess i should write down my latest crazy dream?!!

it's not as crazy as some of my others but it was a tad strange!!!

i went to town to get a tattoo because (in this dream) my littlest daughter Sarah was at pre school and Ellie was at school, so i had a few hours to myself! when i got to the tattoo place a saw the tattoo i wanted and copied it, by hand onto a piece of paper, it seemed big but hey it was what i wanted! all i can remember about it was that it had lots of rings, but they were like diamond engagement type rings!!! when i showed the tattooist and told him i wanted it on my chest (i would never really have a tattoo there, so odd!) he said " aren't you a bit old to have a tattoo?" "what are you, 48, 49?" i was shocked, i said "no, I'm only 35!" but he wouldn't believe me!! that's when i woke up, i was tempted to run and get some botox done quick!!!


until next time, that's it for my dull life!!!

frustration, frustrated, frust everything....

It's Sunday 12th July, I'm feeling a bit fed up of Arthur at the moment, with his power of invisibility. If i broke my leg, you could see it, if I had no head, you could see it, well you couldn't because it isn't there but you know what i mean!

Here's me, looking perfectly normal, well, as normal as I can look, but I feel crap. The methotrexate makes me feel sick, it's the time of the month the my Aunt Flo visits, which makes me feel even more sicky and quite grouchy to.

So you can imagine what a nice person I am to be around today?! but as I was saying Arthur, invisible to everyone, every joint hurts, from my neck down to my toes yet I can't prove it can I? there's no way of showing that my joints feel like they need oiling or more tempting, removing completely.
Any way, enough of my complaining, maybe I could have 'WARNING, I contain Arthur!' tattooed across my forehead? that way I wouldn't have to explain why I use disabled toilets, why I don't use stairs (unless I Have no choice and then i grumble!) why I can't sit on the ridiculously low chairs they have at school (I'm an adult i want a proper chair please!) oh so many things i can't type them all!!
Maybe, if I had one wish, I'd wish to have a normal body, just for a day, to feel pain free and be able to sit on the floor and play with my children, to be able to jump in a puddle if I want to! the little things that once I took for granted.
I will have to keep my eye out for a magic lamp or leprechaun, if you see one, pass it my way, please?

hot weather, yay!

The weather is hot, hot, hot so I've been out trying to sort out our back garden, hmm, some interesting things out there, not sure how these things get into the garden though!!
I've been pruning the ivy, that's no fun, it gets everywhere. I cleared some but i think it will take a miracle to get rid of it all, sadly I've not been good enough to get a miracle, so i guess I'll have to keep chopping it, argh!!!
Thanks to Arthur, i can only do a bit of the garden before needing to rest, my stupid hands are getting so weak now, still I'm seeing the hand surgeon soon so maybe he'll decide to sort them out a bit? I know life would be easier with fully functioning hands.
see, Arthur has a lot to answer for.

Anyway, on a more exciting note, i got an e.mail a while back, we love the wiggles in our house so i had to join the wiggles site, because of that i got an e.mail about the Dorothy the Dinosaur tour! yay!
They are hopefully doing a show in Basingstoke, if they do we are going, it'll be great because mine and Sarah's favourite Captain Feathersword will probably be there, sadly not all the wiggles but hey Captain Feathersword will do!!! maybe i can sneak backstage for a picture? that would make me happy, although if Arthur's about i won't be able to be very sneaky!!
well that's all for now, got to hoover!!
I'll be back soon.....

it's been a while, but blame arthur!

It's Monday June 1st, has it really been that long since my last blog?
I blame Arthur, he's been making me suffer, after stopping the methotrexate injections due to sickness I decided a few weeks ago that maybe I should give the methotrexate tablets another go. I lowered my dose after talking to the rheumy nurse because I can't handle the sickness that I know I'll get if I stayed at the higher dose.
So, I still get a bit of sickness but it's manageable so that's good, but the methotrexate just isn't doing what it used to, my joints are still very stiff and swollen and I've had a few flare ups, although not as bad as they have been they seem to last longer. Last weekend I started suffering, my neck was so stiff, but it seemed to get slowly worse as the week went on, by Thursday I was really suffering, my neck and my shoulders ached then on Friday my knee joined in, swollen and clicky, I felt fed up. I woke up Sunday morning like a swollen stiff robot in need of oil! Oddly my hand, well the back of it has swollen like a balloon, I've not had that since Arthur 1st started. So I spent most of Sunday laying in bed, boring!!!

Anyway, here I am, Monday and actually feeling a lot better. Things seem to be returning to normal. my neck and shoulders are much better and all swelling has gone down, yay!!!

This afternoon Ellie has gone to get her hair cut. I refused to take her because she wants her hair cut really short and I'd end up crying!! I love her long hair but I guess part of her growing up is letting her choose how she wants to look. I just can't believe she wants it all cut off!
I'm still hoping that between my mum and the hairdresser they can persuade her to maybe keep a bit of length, but I guess I'll have to wait and see. As long as I can tell her she looks great regardless of how I feel then my motherly job is done!!
to be continued.....

After feeling sick and rough for a while now I decided on 6/04/09, with the help of my rheumy nurse to stop taking my methotrexate.

so, here i am, a week after stopping my methotrexate and feeling crap, sorry, but I'm really feeling stiff and achy, oh and tired, so tired. i haven't slept properly for a while but the last week has been awful. pain, is an understatement. everything aches and at night I can only sleep for a short while before i get woken by the pain, so i have to try to find another comfy position, which proves to be hard. my knees hurt if they aren't separated by a pillow or the quilt, may sound weird but it's true!!!! my hands are also playing up, which means sometimes hanging them over the edge of the bed helps, sometimes having them above my head, it's trial and error!!!
so, I'm now at the snappy, moody, tired and a bit angry phase, I'm sure I'll get an appointment with my rheumy soon and then it will be the fun game of starting some new med, yippee!!!
well, enough moaning for now, Ellie has gone away for a week with my parents in there caravan, so this week it's just me and Sarah during the day, hmmm, not sure what we'll get up to, cleaning and washing clothes probably!!!
until next time, over and out!.......

another dream

this was a short dream but it was enough to panic me!

i had an evil spirit attached to me, it was saying horrible things, making me angry.

the only way to get rid of it was to hurt it, but really hurt it not just a little slap!
but obviously to hurt it i had to hurt myself, i could feel the pain but i had to keep trying. i was knocking into things and rolling on the floor to try to hurt it, the pain was what i remember most.
i bit it and scratched it and eventually it left me and i woke up.

but i hurt when i woke up, i could still feel where i had banged and bitten to try to get rid of it.

weird don't you think?!!!

Easter holiday's start here.....

well, here i am, Monday April 6th, it's 8.40am ish. I'm about to start tidying the lounge, that's today's task, not very exciting i admit, but hey.

Sarah is busy trying to ride her bike in the hallway, Ellie is moaning she's bored, it's great, fab, super, hooray!!!!

so, i need to pick up the ever growing pile of Sarah's toy's, vacuum the carpet which is covered in garden, well grass. then try to keep the toy's in there place, in the toy box.
I've sorted Sarah and Ellie's bedroom, I've hurt my hands moving furniture and stuff.
i want a robot vacuum, it could roll around in a constant vacuuming frenzy, oh the endless fun it would give me, watching it work, doing my job!
any way, this week could be fun because I've had to stop doing my methotrexate injections due to them making me feel so sick. the methotrexate was great as it really helped with Arthur but sadly the sickness was unbearable. so I've got at least a week with no medication, so I'm thinking 'ouch' is the word of the week. especially as I've managed to lower my morphine dose a bit, but i regret doing it now, i might just need the extra pain killing power....
watch this space and I'll watch my language, 'ow' is the hardest word to say!

my wierd dreams

the 1st dream was last thursday (26th march)

i was by a river, on a long path, i was with a man but i don't know who as i never saw his face.
we were walking down the path and i saw a indian (as in cowboys and indians btw!) walking towards us, he seemed to sort of appear, like he was a spirit or something. i said to the man i was with "look at that" he said "it's an evil spirit and so you must banish him"
this is the wierd bit, the man i was with had to spin me round by my arms and i had to hit the indian spirit thing with my feet. the 1st time i missed so the indian sort of started to disappear but then laughed and said "you missed me"
then i was spun again but the same thing happened, so the man said " i will pull you back and as you fly forward you need to kick the indian in his face!"
so, he pulled me back and it was like i was on elastic because i flew farward and kicked the indian in the nose, his skin vanished, then his skull caved in and he was gone.

i woke up at that point, but i felt scared, like something was in the house, i wanted to go to the loo but i was convinced if i looked in the lounge on the way back i would see something there. it really freaked me out.

then on saturday night (28th march) i dreamt this ;
i was with daev and some other people, we went to a place which was like a village but it seemed to be yrs ago, like we'd gone back in time. we all had to dress up in costumes that the villagers would of worn. then we went round the village living like people would of done. i don't remember alot of the detail but by the end we were in a building and i was stood at a window doing washing up and i saw a spirit of a lady, don't know who she was but i had to tell people, it was like an urge, i had to tell everyone i'd seen this lady ghost. i rang beki and she was really excited, she kept saying that she hadn't seen that ghost for years and i was really lucky to see her!

last night (30th march) was the weirdest though.
i was living at my parents house with daev and ellie (no sarah) my mum wasn't around, she'd died (in my dream, not in real life!) and i was trying to organise my dad's funeral (he is also still alive in real life) ellie had dressed his body and i was trying to organise having his body taken ready for the funeral. but this is were it gets weird, my dad was with us, he was a ghost but seemed very real. for some reason his body was being cremated but his head was being buried. i was supossed to be seperating his head from his body but i couldn't do it. my dad (the spirit of him) was telling me to just do it, it wouldn't be that bad, ellie kept telling me that if she could dress his body then surely i could get his head off.
he was wearing a blue stripey shirt, this seemed very important as it sticks in my mind now.
then we were leaving the house, my mums spirit appeared and we had to go in her car, we were going to follow the hearse, which seemed to sometimes be black then it would change to red, it kept changing.
anyway, the driver of the hearse said that he was only taking the head, he had to fix the head onto a clip on the inside of the roof of the car, this made it look like my dead dad was driving the hearse, which everyone acted like it was perfectly normal. the actual driver was in the front seat driving and the head was in the back.
then we were in my mums car, her spirit was driving it and we were lost, we had to keep up with the hearse but we were on a motorway with cones and roadworks and it was pitch black. then we were suddenly back at the begining of the dream again, i was in my parents bedroom and my dads body was on the bed, his spirit was still with me, i was convinced his body was decomposing as it seemed like he'd been dead for weeks. my dad kept telling me to cut his head of his body but i couldn't as i thought it would be all decomposed inside and it made me feel sick, then it just carried on as it did at the start, ellie saying she had dressed him etc.
then i woke up.

i've had the sick feeling ever since, like i said a feeling of dread and fear, like if my phone rings it will bad news. the de ja vu feeling, i can't eplain it, but i feel horrible.

after the weekend....

well, it's Monday and I'm trying to sort my kitchen out.
I've decided to do 1 room a day and try to get our home back into some kind of order.... we'll see!
unfortunately my left hand has given up on me, as well as the fact that only 2 fingers work due to several injuries i now seem to have no strength at all in it.
I'm back to typing with 1 finger as that's all I'm capable of, holding a pen to write is at best difficult and my writing is more like a pre school scribble, but hey!
i have managed to clear the top of the fridge freezer and so now i have a place to store the Easter eggs we were given yesterday by Daev's family, out of site out of mind, i hope!!!
other than that it's a slow job, with my stupid hands not working i keep getting annoyed, just picking up a 5p coin made me sob, it's not heavy, it's not awkward it's just impossible to grasp with a useless thumb and a not to bad finger, oh Arthur why don't you just f**k off and find someone else's life to wreck?!
still, Sarah has gone down for a nap now so at least i can do some tidying without her help, she stood by the side of me, seeming to be very impressed with the stuff i took off the top of the fridge freezer, excited by the bottle of sun cream with a picture of Nemo the fish on it. 'whoops' of joy when i put the blender on the side! oh and such a happy smile when she noticed an elastic band on the table!
sometimes i wish tiny things could make me that happy, imagine waking up, hearing Ollie our cat meow and finding it hysterical? oh i wish!!!
still, i better stop writing now as this isn't getting the kitchen tidied is it?
I'll be back soon, button moon, bye for now! x

I'll start at the beginning, after all this is the start of

a walk in my world, my blog.

(well, me and arthurs blog)

I'll introduce myself first,
My name is Sue, I'm a fairly normal person, although I have a rather annoying partner, his name is 'Arthur'
Actually, Arthur is not so much a partner, more of a part of me, i wish he wasn't but, you can't get rid something that chooses to be part of you. Arthur is my rheumatoid arthritis he joined me about 2 years ago, although i have my suspicions he'd been creeping up on me for along time before then, many years really, but in January 2007 he joined himself to me and now he's here forever.

You can probably understand that having Arthur has caused a lot of things in my life to change, maybe even vanish forever, my independence has shrunk and i now rely on my Friends and family more than i ever have before.
some day's i wish i could get rid of Arthur, cut him out of my body, banish him from my world, but i know he'll never truly leave, even if some day's i don't notice him so much, he's always there, ready to surprise me with a gift, maybe pain, maybe just keeping me from sleeping, maybe making me sad, maybe angry, only he knows what his next move will be.

i've never been a super fit and active persom but i used to enjoy going out for walks with my eldest daughter Ellie and my hubby Daev, we would start of on a adventure, finding secret places, fun places or even scarey mad horses in the middle of a field somewhere in Hook. we'd have days out, going on trains to different towns, aways finding museums to visit, not my idea of fun, but hey!!
my youngest daughter Sarah, has never seen this part of me because Arthur came along not long after she was born, i guess in some ways she's lucky, she can't miss what she never saw, but Daev and Ellie both knew me as the person i as, way back then, or as it seems now.

I guess i should stop feeling sad for the parts of my life i've lost to Arthur, after all that is giving him strength, thats something he doesn't need.

this is a introduction to me, to my life, this is a place i can say all the things i feel, all the things that make me happy, angry and sad, a place to let out my feelings.
from this day i have a blog to call my own, morphine queens place, for she is me, (me and Arthur)
x x x