23 Jul 2012

painting me

yesterday, was rather a silly billy. i suddenly couldnt stand how grotty the toilet walls any longer and painted them pink. and used a stencil and made some pink dragonflies. it looks nice but considering we had joanna's sw today - i was not in a fit state this morning! but the even silliest bit - i finished off the last bit AFTER i had taken my sleeping meds and not bobbed off - that's more bright pink dragonflies - so far so good, and using up the rest of the bright pink round the doorway. mess !! the girls took pics of me after i had been decorating - i got quite a lot of paint on me :-)) lol. one more for the biography




12 Jul 2012

some good news

cable chain stitch. rusting hulk. i suppose grimsby docks have been cleared up now and no more dandelions growing in the pavement cracks.


Teaspoon Shisha. hadnt got any of those pretty little mirrors to try this technique on so my monty python side decided on a plastic teaspoon. palestrina stitch surround.

Bonnet stitch bijou.

flowers from the river bank. all the colours of the rainbow. lol - in background on right is the pot noodle cup i use as a mug all the time. it's big and i'm less likely to break it :-) on left pic  gorgeous japanese work birthday card from mum.

made by joanna. just noticed ermintrude cow from magic roundabout on the shelves. dont often look at her :-)

the state of play with my morning glories. it's a struggle to keep warding off the bugs - have to squish without mercy. on the right, downstairs, you can see where the neighbour is using my parking space now i've not got a car. we're number 19. and you can see the 2 big wheely bins. the one with a yellow lid is for recycling.
the good news is that for the first time since the home helps started in april 2009 we have a full timetable this month !!

and most of my fibro pain is gone. - that's since taking the new antibiotic.

and the sewing is proving useful to keep my mind busy - like doing puzzles - enjoying doing a new stitch each week, tho doing a whole project every week is really a bit too much for my eyes.

the nerve pain didnt go but am now managing to take a child's dose of the Lyrica - it's slow going. but it seems to be enough to deal with the worst of it so hope i can stick at that. the side effects take several weeks to wear off but it was worth persevering in the end. the dr prescribed it last autumn but couldnt take it cos the biggest side effect is to make me fuzzy and it's just too dangerous for the girls to not be around when they're having medical crises of various sorts. the extra help means i can chill out a little bit more.

the case conference didnt decide much that was useful but the simple fact that it happened at all means that the different agencies are now less opaque in their functioning as regards us.

we have been assured that our h/h hours will not be taken off us by the disability people after all.

and i've bought and armchair which tips up.

have got to do the disability forms with both the girls sw s aswell as mine. bit of a sweat to have to do so much explaining, but hope its an investment for the future. if anything happens to me they dont fit into any existing structure.

very grateful for our "networks"  - the chemists rang about something on our prescription.  it really helps that they know us and are so helpful. am valuing having the continuity of helpers. for 3 years some of them. we so need continuity and stability. also nurse came today for blood test (sugars) and updated us on the news and changes in their team while she was here. and even having the same man delivering our shopping. no time to chat, but he's a friendly and familiar face.

10 Jul 2012

had lovely visit from simars last weds. feeling grotty. ogt the aah forms to fill in - projet de vie.

20 Jun 2012

case conference


looks like case conf went well. the helper who went came yesterday afternoon and was bursting with something she wasnt allowed to tell us. finally feel free to take a bit more pain relief even tho it leaves me groggy. even if the case conf comes up with nothing at least all the different parties know that someone is taking an interest so i hope wont be able to get away with doing any old thing in the future. hope.... 
 
social worker coming wednesday to tell us about it. 
 
feeling pretty burnt out now.

17 Jun 2012

Washers and memory.



Well, here's my attempt at button hole wheel stitch for this week's Take A Stitch Tuesday. Am so enjoying embroidering. Far more fun than cross stitch. This is my ostrich activity - I so need to not think about things. These are called "I dropped the box of washers" in honour of the lady who runs the challenge who has a long running series of posts on her crazy quilt project "I dropped the button box". Very annoying that AFTER I take the photos I notice mistakes, however carefully I think I looked it over beforehand. I had a look at some of the other offerings, nearly all are flowers. At least I've tried something new. I'm blessed with the mental obligation to have to do something original. It comes from Mum. When we had to think of ideas for English essays she made us think outside the box.

Lovely to be able to sit on the balcony more now I've fixed the blinds. Must make myself go and do it.... tho when I'm twitchy the computer at least distracts me so I don't go trying to do things.

"Where have I put my meds ? Maybe they're where I lost them last time ..."

This morning's crisis to get up to was J having a rather dramatic nose bleed. She copes with them herself mainly now, but I needed to change her bed. Had to deal with R's bed yesterday 'cos of dropped cherries on it and it was another red stain last week on another of her new sheets last week - that one was wine vinegar.

Yesterday's morning crisis was them finding a potter wasp in the living room curtain. They were used to them in the past but it seems to have come adrift in the memory loss. The long ovipositor can look like a sting if you don't know what it is. They must be feeling a bit fragile cos often insects don't bother them. J is inclined to kill them with spraying perfume on, then put them in her microscope. Mind you a few years ago she scared herself silly   - this harmless minute armadillo like thing turned out to look quite fearsome and heavily armed close to and she'd found several under her bed. :-) R took some video this week on her windowsill of a tiny red spider wrapping up  a big flying ant. It then leaped on the ant's head and killed it. Gruesome.

I taught another helper how to make gravy yesterday. She put a huge amount of flour in. Better luck next time. It was her first ever attempt at this particular culinary delicacy.




This is the calendar in the toilet. (recognise it Dad ?) J crosses off the days and we all write in dates as they come up. Yes, nothing much happens, then we have 3 things on the same day. One of them didn't happen and I spent ages waiting. The other two happened both at once. The doctor was here and the delivery man rang, he was lost and I had to talk him here on the phone then take the delivery. When I got back to proceedings I discovered that what the girls had told the Dr was not really right and so he was not writing out the right prescription. He was not too pleased at the idea of having to change it, but when challenged neither of the girls could remember much in the way of what symptoms they've had and what meds they took. He had not realised how much memory loss they have. He's said they've got to keep symptom diaries now. They hate doing that. Partly it's the effort of remembering to do it and partly it's not wanting to even think about it. We work quite hard at not dwelling on it except in the instant that we need to take action to deal with something. They have to live in a very day to day manner. Not too good for planning ahead, but a very good way of dealing with worry. That's why J crosses off the days, to keep track. The seasons help a lot too. They watch what's growing in the neighbours gardens and follow the weather even tho they're not out in it.It's these things that keep us alive, part of the world and a cheerful antidote to the news (which they both follow). J writes too. I'm not sure what she writes but she has several different note books. She sticks things in scrap books too. Ruth has more difficulties with a pen, but she carefully catalogues and dates everything she makes and everything she spends. I love her systems of storage in her room. Every thing is beautifully kept in plastic drawers. She keeps some of her beads in empty spice jars on her desk. Treasure. She found out how to do a search for things that cost less than one euro and free postage so she gets all sorts of bits and bobs that way. It's a clever way of making sure she has post to open too so something to look forward to too. Ruth writes tutorials too. It comes from having taught herself to do things and other people asking her how she did it. Her first one was Webby on her site suppi.net. Some of it is out of date now but there wasn't much else around in terms of web tutorials at the time she made it. Our brains haven't stopped functioning, the process just happens rather slowly. Ruth thinks we shouldn't have lost too much on the hard disc but we don't have enough RAM to process it or to record much new stuff.



14 Jun 2012

"Though much is taken"

Though much is taken, much abides. 
And though we are not now that strength 
Which in old days moved earth and heaven, 
That which we are, we are: 
One equal temper of heroic hearts, 
Made weak by time and fate,
But strong in will, to strive, to seek, 
To find and not to yield.
 
Tennyson.

shelves

just a few white and yellow mustard plants in the roadside with 2 poppies strategically placed, as beautiful as any flower arrangement ive seen anywhere. these little things that lift our hearts and make them beat again. 

agitated. worried about the home helps being withdrawn. joanna prayed with me this morning and i'm more at peace about it.  struggling to rest tho. then my sleep meds didn't kick in last night so ended up having the opposite effect. at least my bedroom now has  a bookshelf (was moving that at around midnight) and looks a bit better. joanna when there are big things we cant control we end up controlling the little things that we can do. feeling a bit lacking the sleep today, but still a bit twitchy. i shall collapse after they've had the case conf on tues. must write out list of the effects of the lack of help in the month of may.

it's hard having the girls poorly again. nothing like as bad as it has been in the past, they can still get around the house a bit. i have to make the conscious effort for their sakes to look beyond the exterior to see the same old person on hte inside who still needs to be reacted to totally normally. if i look sad and worried about them it makes contact with me wearing rather than a blessing, so even tho i still have to be real about things i'm careful to stay as positive as poss. esp with them needing help with baths again. they find it so hard to ask for help in the first place and to lose that bit of independence again i must talk to them as adults not babies, and not make them feel bad on top of everything else. they are so thoughtful they only ask for help when it's desperate. they are such lovely women.


ruth still has difficulties with reading and joanna loves reading alound so when The Week arrives i hear joanna sat on ruth's bed reading it aloud to her. and then ruth googles anything they find interesting to go andlook at the original article. joanna has some interesting prononciations cos some of her english comes from reading. i heard her do the classic "miyzled" for misled  the other day. ruth corrects her. she does very well considering. 


joanna loves her kindle. she's had a couple of weeks when she coulnt use it much but now is reading persuasion. she cant read novels much cos she struggles to remember all the characters, but she has such insight about how humans behave, like ruth too, that when they discuss something they both have watched or ruth has watched and joanna has read, i find it absolutely fascinating. 


they both do sudokus. ruth does it on the computer. joanna has  little machine that ruth bought her with a little screen so she can play lying down. it keeps her brain ticking over when her body is finding it hard to keep up.
red frame : - freshly painted shelves - rather pleased with myself to have done something "normal". made rather a mess. blue - old system for blinds. couldnt use them cos too ripped and they rip more when they wave about in the wind. so now i can sit on the balcony even in the afternoon.  green - new system for blinds - hold down better so can sit out there even when it's sunny in the afternoon. yellow - my shadow - she got paint on her whiskers. purple - apricot tree that grew in the compost.

i pass rather a lot of time here. MP3 player for listening to podcasts and the radio.

"new" bookshelf with "new " yellow shelves. and a pile of clean washing waiting to be put away.

treasures displayed on my curtain. cheer me up when i look up from the computer. can also look out at the view.