Tuesday, July 30, 2013


Not able to rest at all at the moment, so much happening.  I feel rubbish; sick and dizzy and so tired, but can't sleep or rest when I get chance.  Whilst Emily was at her friends yesterday I made 4 bracelets as I could not rest, but making them was peaceful, I should have made sure I was sitting more comfortably though!!  I will try and post pictures later.

Emily made a tie dye t shirt at her friends, its something I fancy doing so can't wait to see what t shirt looks like when she gets it today.

Taking Emily and her friend to a music group this afternoon, it should be fun, but not sure it will do my head much good!!  Its the lady they do after school music with and they love it.

Monday, July 29, 2013

Week two, or should that be weak too?!

Well its second week of school holidays, only done 3 days so far! I am worn out, in pain, feeling sick and dizzy, does not bode well for next 5 weeks!  But life goes on so I must keep going.

I was in bed by 8.30 last night and would have gone earlier if there had not been things to sort out.  I am really fed up of resting for around 2 hours each afternoon and then being in bed not long after Emily.  Rob and I have no life as a couple.

Craft is well and truly a dream at the moment, I managed one row of knitting last night, but it was too much effort, so my crafty side has to be content with looking at websites and kids craft.  I have just found a great site for Knitting will be saving the link.  We took Emily to messy church yesterday, a nice afternoon, but hard work for me, I hate feeling like that.

Wonder what today will bring?  Emily is at a friends this afternoon.

Friday, July 26, 2013


Had a lovely morning at Swithens Farm with Emily and some friends.  The kids loved it. They got to; go on trampoline, outdoor play equipment, bouncy castle, see the animals, buy goldfish, go in playbarn and have lunch!  It was rather too much walking and talking for me, but nice to be out in fresh air and see the children having fun.  The cafe is nice and food looked good.  Gluten free choice limited to Salad or jacket potato, but better than nothing and had choice of different teas.

Back home I was hoping for a good rest, but due to over doing it and issues with my PA it was not to be, so now I feel awful and ready for bed and its only 6.30.

Emily is learning to ride her bike without stabilisers, she is getting there, but its hard work and something that I really cannot help her with.  I went to the park with them yesterday and gave her plenty of encouragement and we have bought her a bike that is a better size, but she still prefers the smaller one at the moment.

Craft is taking a back seat.  I did spend my rest time cutting sequins off a couple of t shirts as they were looking tatty, sequins don't wash and iron well.  They look better now so can wear the t-shirts a bit longer.  Managed a few rows of knitting last night and might get a few more in whilst Emily is at swimming, if I can keep my eyes open!

My new beads arrived the other day, but so far have only taken them out of the envelope!  I could go and have a play with them I suppose its cooler than knitting, but I still need my eyes open.

Tuesday, July 23, 2013

Last Day

Its the last day of term and my last day of peace and quiet for 6 weeks!

Hoping to get some more bracelets made and to tidy beads away as I don't think I will get chance to do any during holidays unless Emily wants to join in.  When making bracelets the other day I did not have exactly what I wanted.  How can I have drawers full, but still not have combinations that I want 8-| I placed an order with Frampton Beads, hoping they arrive soon.

Feeling rather sick and dizzy and headache too, maybe its the weather, had thunderstorms this morning. Hope it dries out before school pick up, no car today so need to use scooter.

The royal baby is a boy, I am sure it will be in the news for weeks, feel sorry for the royals really they can't have a nice quiet introduction to their baby.  I think all new parents should be left alone to get to know their, its a special time and everyone always wants to rush and see a new baby.

Well off to plan some bracelets, perhaps I should make a baby blue one!

Monday, July 22, 2013

Final Countdown!!

Just 2 days of school year left.  Its very quiet at school today, think a lot of people have gone away already.  What is the point in having term dates if people make up their own?

Not much response from people about Emily's playday.  I know a lot of people will be away or doing other things, but it's rude just to ignore the invite, or am I just old fashioned?

Got the teacher bracelets made and sent to school today, forgot to take photos as in a rush as ever.

Apparently the royal baby is on its way, the world will go mad.  Much as babies are great and special it seems you cannot watch tv, read a book or magazine without some mention of babies, it drives me mad.  I feel sorry for anyone else who is expecting a baby at the moment as it will be over shadowed by the royal baby.

Well better get on and get some jobs done as there will be no chance once holidays begin.  Should really be saving my energy, but never much chance for that.

Friday, July 19, 2013


Not a happy bunny today.  I am not able to go to quilting class again as not well enough.  I would not have been able to get to the class and carry my stuff in let alone do anything or follow instructions.  I am really disappointed,but can't risk not being able to do school pick up or having to be in bed all weekend, I am not happy as had to miss the last one too and next one is in middle of school holidays so not sure if I will make that one either even though Rob has booked day off.

I am really upset about school parking as one of the dad's told me off the other day for where I parked and I cannot get in school car park at the moment as it is over capacity.  Rob spoke to new head teacher and he agrees it should be dealt with, but he has his hands tied and can't sort anything until Sept!  He said last night if it was up to him he would go outside with a can of paint!  It doesn't help me though and I am having to 'walk' which is fine as it is warm, but its not always convenient.  Had to drive this morning as I could not face all the hassle getting ready to walk involves, (moving car, getting scooter out, having to be ready earlier) but will have to do it later and apparently Emily has lots to bring home so I will be like a pack horse.

I need to try and get teacher bracelets done today, but not sure if I will be able to my coordination and concentration is all to pot, it was a real struggle to plait Emily hair this morning and last night I could not even tie a knot!  Another reason for missing quilting this morning, I think I would have sewed everything the wrong way round or sewed my fingers together!!

So all in all :(

Got some pictures of the biscuit decorating from Tues, the kids enjoyed it, but I found it very hard, especially as I had an appt later on in the evening which was very hard work.  I have been in bed before 9 most nights this week, last night I was in bed before Emily, but it does not help :-<

Tuesday, July 16, 2013

Made me laugh

This made me laugh today, just what I needed!

A burglar broke into a house one night. He shined his flashlight around, looking for valuables when a voice in the dark said, 'Jesus knows you're here.'

He nearly jumped out of his skin, clicked his flashlight off, and froze. When he heard nothing more, he shook his head and continued.

Just as he pulled the stereo out so he could disconnect the wires, clear as a bell he heard 'Jesus is watching you.'

Startled, he shined his light around frantically, looking for the source of the voice. Finally, in the corner of the room, his flashlight beam came to rest on a parrot.

'Did you say that?' he hissed at the parrot.

'Yes', the parrot confessed, then squawked, 'I'm just trying to warn you that he's watching you.'

The burglar relaxed. 'Warn me, huh? Who in the world are you?'

'Moses,' replied the bird.

'Moses?' the burglar laughed. 'What kind of people would name a bird Moses?'

'The kind of people who would name a Rottweiler Jesus.'

Fed up of being disabled!

I am really upset this morning.  Parking near any school is a nightmare and I need to be able to park as near as possible to be able to walk my daughter in.  In a morning I usually go in the school car park, but there has been no room past couple of days and it would mean me having to reverse out of the gate across the children still arriving for school, so I have been parking up on the kerb by a footpath.  It is not the best place to park I agree, but it does not block the path and people are able to walk around my car and we asked the local police and they said it was not a problem.  I know plenty of people complain about it, but its the only way I can drop my daughter off.  This morning I was asked by one of the parents not to park there as he thought it was too dangerous (not as dangerous as reversing out of car park in my view) and asked if they had a disabled space in the car park.  I told him they did not and that we had had lots of discussions with school and the council who both said there was nowhere to have a space therefore they were not obliged to provide one.  He said he found that hard to believe!!  So now with one week left of term I have nowhere to park!  So do I park further away and risk not being able to walk all the way and making myself more ill than I already am?  Do I forget the car and use scooter, which is a bit of a hassle due to parked cars and lack of dropped curbs, and I have to move my own car in order to get the scooter out of the drive!  Do I employ someone to take my daughter to and from school?  I need to drive tonight as I have tea time club straight after school and then need to take Emily's friend straight home.  I am already exhausted and don't need all this hassle.

Had my SDS audit last night, it gets so complicated, another joy of being disabled.

As I have had very little sleep and need to be ok for tea time club I am now going back to bed, but I don't think I will be able to rest.

Monday, July 15, 2013

Too early for me

Its no wonder I am never ready for Christmas and end up buying gifts and cards etc instead of making them, it seems you have to start in July.  I have had so many emails and seen blogs and posts of things people are making already.  Its far to early for me, we have not had summer yet and there is no way I could start now with school holidays looming.  Perhaps I would be better starting in January!  I have so many stops and starts through the year and it will be into October before I recover from school holidays and time will be running out.  Maybe next year I will be more organised, but I doubt it!  Thinking of Christmas in July just does not work for me.

Can't think of a title!!

I really need to get on with the teacher bracelets only a week to go, but had such a hectic weekend I can't do it now.  I am exhausted and have had no voice or very little voice since Saturday :(

Having new internal doors fitted today so no chance of rest.  Glad the sun is shining and I can sit in the fresh air.

Emily came home from school the other day to tell me she had been shown how to French knit using a cardboard cut into a hexagon and then with slits cut into the long edges and a hole in the middle, its really easy and works well and amazingly Emily will sit and do it!!  I have been trying to remember for years how to do the French knitting with bobbin, but this is much easier and I never did remember or work it out.  She wanted me to show her how to ordinary knit, but she did not have the patience and would not listen to my instructions so that was short lived!  The girl across the road who we give a lift to school was doing finger knitting the other day, never done that but it looks cool.  Emily says I have to teach her that, but I have never done it and cannot follow instructions at the moment.

Visited my grandma at the weekend, her niece was visiting, she used to make and fit soft furnishings for a living and was very good at it.  She had brought a huge bag of fabric for me to have, there is some fantastic stuff and all great quality, much better than I could ever afford.  I have taken what I like and gave the rest to Rob's mum as she makes craft items to fundraise for Sheffield Children's Hospital.  Also gave me a book Crazy Patchwork looks cool!

I would really like to make a cushion and or bag next, like this and this  or this or this.

Thursday, July 11, 2013

Rivers Meet and chaos

I went to Rivers Meet yesterday.  Barbara was there and she showed me some techniques for sewing up knitting which I really could do with help with as mine is always messy.  She says I can take my knitting in and she will help me, so I am happy again now.  The waistcoat is going well, I am onto the front now, but I don't get much time to do it as things are hectic and I am always so tired.  The evening are getting shorter as its now nearly 8.30 by the time Emily is settled in bed and I am usually in bed myself by 9.30, often earlier.

School is winding down for the summer.  Its sports day today, off to watch soon.  I am quite busy with appointments and end of term things at school which makes it hard to rest up ready for the school holidays.  Not sure how to fit everything in and be ready for the school holidays, its an ME nightmare.

I still haven't made the teachers bracelets.  Made the cards with Emily last week.

I am supposed to have quilting next week, I missed the last one so really want to go, although I still haven't finished the piece of work from May's class.  Was good to get the

In my madness I decided to do the Play day event.  Just having a few friends around for picnic and play, but it will be hard work and I am not sure it is my best idea ever!!!

Monday, July 08, 2013

Should know better

I decided to look at a dress that I have had cut out for ages to sew for Emily.  Never really done much dressmaking before and think I will have to admit defeat, I can't really follow the instructions and I did some of the cutting wrong.  It has made me feel very shaky, sick and dizzy, not to mention stupid and disappointed.  Only half an hour now until Emily comes home from playing at friends so I could do with feeling better than this :(


ME and Mummy and ME

Copyright © 2013 Jane Shaw
All rights reserved.


ME and Mummy and ME

My mummy has two of me, the first is me Emily.  The second is an illness called ME, said M.E which is short for Myalgic Encephalomyelitis.

Mummy has had the ME 10 years longer than she has had me.  The ME is like a part of our family.


The ME makes Mummy very poorly.  She feels very tired all the time. She has lots of pain. She feels sick and dizzy and lots of other things too.

You cannot see the ME so my mummy looks the same as any other Mummy.  The ME makes it difficult for her to do normal things.


Mummy cannot walk very far because of the ME.  She has to drive me to school and park very close to school.  This makes Mummy sad. 

Mummy knows that it would be better for us to walk and get exercise and fresh air.  Mummy likes walking and would like to do it, but the ME won’t let her.


If we need to walk Mummy uses a wheelchair or a mobility scooter.  The scooter is not like my scooter that I stand on. It is like a chair on wheels and has a motor to drive it.  Sometimes I say that I am tired and need to sit on Mummy’s knee.  I am too big and heavy to do that now.  Mummy has to say no.


The ME means Mummy needs to get lots of sleep and rest.  When I am at school Mummy has a rest before she collects me.  At weekends Mummy has a rest in the afternoon and I do things just with my Daddy

It is very difficult for Mummy in school holidays.  I get to see other people like Grandma and Pat so Mummy can have a rest.  It makes Mummy sad that she has to rest and cannot spend all day with me. 

Mummy goes to bed just after I go to bed.


If we go out the ME means it is very tiring and hard work for Mummy.  

She always tries very hard. 

It means that she gets a lot of pain and feels more poorly. 

Mummy sometimes gets upset because she can’t do the things she wants to do. 

Sometimes Mummy gets upset because she has tried to do too much and feels very poorly.


Barbara helps with jobs in the house. 

Sharon and Tracey wash Mummy’s hair because she cannot use her arms properly because of the ME. 

If the people who help are not there Mummy has to do the things and it is hard for her. 

If I help Mummy it makes it easier.  Help means that Mummy can do more things with me.  But it doesn't mean I always help!


Daddy has to cook meals.  Mummy sometimes does easy baking with me.  I have to do all the mixing and help to clean up.  It is easier for Mummy if she can sit down.  Mummy needs help to follow the recipe so sometimes we need Daddy’s help. Mummy likes cooking, but the ME won’t let her


I am very noisy and have a lot of energy.  This can be hard for Mummy. 

Mummy cannot run around with me.  Mummy can play sitting down games with me. 

Mummy likes making things.  We can make some things together.  


If there is a lot of mess Mummy cannot clean it up and we have to wait for Barbara or Daddy to help. 
Sometimes Mummy does the cleaning and tidying herself.  It makes her very poorly.  If she does this she cannot do as many nice things. 

Sometimes it makes Mummy angry.  

Sometimes it makes Mummy cry.


With Mummy I like doing……..

It makes me feel…………..

With Mummy I don’t like ………..

It makes me feel……………………….


I get angry when Mummy cannot play outside with me.  

I get angry when Mummy cannot come to find me every time I shout for her.  Sometimes I am naughty and shout Mummy a lot.  This is not good for Mummy.  Mummy gets upset with me and the ME. 


Sometimes I don’t really understand what Mummy can do.  It is not because Mummy is saying no to what I want, it is because of the ME. I get upset if Mummy needs to have a rest when I have been naughty.

Sometimes the ME makes mummy really poorly and she needs to spend more time in bed.  This makes Mummy and me very upset.


There are lots of things that Mummy cannot do because of the ME.

My Mummy does not go to work.  This means Mummy is always at home for me. 

Mummy cannot pick me up, but we can have lots of cuddles.  


The ME makes Mummy sad.  Mummy does not like the ME.

I can make Mummy smile.  


Mummy always loves me

The End

Well I am worn out after sorting all this.

I hope it displays ok, it looks much better as a booklet.  There are a few issues with HTML tags, but it would be too hard for me to find them all and take them out 8-|

Friday, July 05, 2013

Answers on a postcard!

Well it's 1.20 am and I can't sleep. So what do I do? It's been a long hard day and now the ME and pain wont let me sleep. My mind won't settle, there are so many things going on. All the more reason to need sleep, not a chance with ME it's a spiteful illness.

Should I get up? Should I do something useful? Should I read, lay in dark, prod the cat who is asleep at my feet???

Oh the joys and only 5.5 hours to getting up time!

Anyone got a frying pan?

Tuesday, July 02, 2013

Cool photo editing

Found a great photo editor to use with Chrome, created these pictures :)

Tired again!

Well I got up feeling more tired than I went to bed I think!

Thoughts for today, need to plan a visit to Handmade Collective new shop in Leeds.

Liked this

Just need to work out how to do it!

Making pasta pictures with kids tonight, hope they don't make too much mess!

Rob bought Emily some fab bubbles last night in Lidl.  Try and post pics later.

Monday, July 01, 2013

Oh dear

My mind is working overtime again! 8-> August 7th is national Playday, I really want to organise an event, but it would be hard work and would make it difficult for me to function for rest of holiday, plus I would need a venue and helpers!  Would love to organise a picnic and play activities for Emily and her friends, but is it doable???  Should I be really thinking about this when I find it hard to play with Emily day to day, mind you I would hope that they would play together and I would not have to do that much, except I would probably have to be a referee 8-|

Whoops Emily just lost a tooth, she was eating an ice lolly, not sure what was blood and what was ice lolly so she had a bit of a panic, but is ok now and has a friend playing.  The friend told her this morning she has just got a kitten called Oscar, Emily came to tell me she has a kitten called Ostrich!!

Hey ho more daydreaming or should I do something more constructive :-?

We love Whitebox

Well after resting most of Friday I still ended up in bed for a big chunk of Sunday.  Mainly because we went to the theatre on Saturday morning and then later on I had my hair cut and coloured which always makes me ill :(

Managed to get up to go to photo session with Whitebox and got some more great photos.  We have been many times before and were welcomed like old friends and Emily made star of the show as ever.  We are very grateful to Whitebox as the session we had booked we had to cancel at short notice due to my Dad being rushed into hospital and we fully expected to lose our money and the session as per terms and conditions, but they very kindly allowed us to reschedule for no extra cost.  We got some great photos, despite me being in pain later from sitting on the hard floor, it was worth it.  It was even more amazing as Emily had been throwing a tantrum and saying she did not want to go just half an hour before we set off!  As you can see in the photos she is having a great time.

We are already booked in for Christmas!

Been a busy morning so far with Physio and carer to wash my hair and then have blood test later!  Hoping that Physio keeps pain down as it did last time.  Not as much rest time today due to blood test appt.

Is it really July 1st?  Its cold and pouring with rain :(  Apparently it is going to be nice by the weekend.  The worlds weather seems to have gone mad with massive heat waves in Las Vegas whilst we are freezing and have to expect wet summers for the next 10 years!  I bought some new summer shoes the other day with my birthday money from my sister in law, but wonder if I will get to wear them?

No chance for any craft activities, but Emily says she wants bracelets for her teachers, 3 of them and cards too so need to get going on them.  Its music group concert on Wednesday and sports day next Thursday so the count down to summer holidays is beginning.  Sounds like the school trip went well and Emily wants to go again, so its something we can do sometime.