Keep on smiling!

Well after a very hectic few days visiting family and travelling on my own with Emily I just have time for a quick post to keep up the positives.  I thought I hadn't got any as things had been so busy and hard work, but as ever there are things so it is worth taking a few minutes to remember them.

Thursday was very difficult as I had to travel by train with Emily.  Luckily we have a local station that links with the local station where family live, I cannot get into a mainline station without my wheelchair.  The local one was difficult enough as we had to go over the bridge its a long hard struggle for me, but Emily was very well behaved and helpful.  When we get to Sheffield we have to change platforms, which is quite a walk, but no steps and I just have to take it slowly, but not too slow as there is only 10 mins to make the connection!  We made the connection and the train drops us right next to the car park where my Mum was waiting to pick us up.  That is my first positive managing to do the journey its not easy and I can't do it on my own so have to put a lot of trust in Emily.  My second positive is that Emily was so helpful and well behaved.  Later in the afternoon my Auntie and Uncle came to see us at my Mum's it was lovely to see how much delight they got from seeing Emily so that is number 3.

Friday was hard work, I did get a bit of time to myself so I guess that's a positive and the other positive was being able to sort out some more of my Grandma's things as my Mum can't face it. I started reading a book written by an ME friend, Crushed, its a good and easy read.  I enjoyed her first book Karma.

On Saturday I got the final box to sort and found my Grandma's engagement ring that we had all given up for lost.  It was a great find and well worth going through all the bags and boxes to find it.  Number two was seeing Emily having fun with her cousins and having someone other than me to play with.  Finally Emily was very well behaved at the dinner table and ate her food despite many other distractions.

On Sunday a family celebration meant Emily got more time with her cousins and I enjoyed spending time with them too, they were all very good and a pleasure to be with.  I was however very grateful to get home and very grateful to Emily for helping me to have a bath and wash my hair.  So as I said there are always some positives.

Today I was grateful that the grass and hedges were cut ready for winter.  My PA came back after 3 weeks off, so I have help again which is much needed.  I got a break this afternoon when Emily was invited to a friends to play, don't think I could have managed without that.

So it's day one of holiday over only another four to go!

Book

ME and Mummy and ME

Copyright © 2013 Jane Shaw

All rights reserved.

Pg1

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.

pg2

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.

pg3

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.

pg4

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.

pg5

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.

pg6

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.

pg7

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!

pg8

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

pg9

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.  

pg10

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.

pg11

With Mummy I like doing……..

It makes me feel…………..

With Mummy I don’t like ………..

It makes me feel……………………….

pg12

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. 

pg13

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.

pg14

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.  

pg15

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

I can make Mummy smile.  

pg16

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-|